^SJACKInformation CentreMinistry of HealthWellington

Bioethics CentreDunedin School of Medicine

University of Otago

February 1999WA540KN4IQ]EVA1999

MOH Library

IOIIIIIIFIMIU10246CM

The. Ethical Dimensionsof the

National Waiting Time Project

102460

A Report prepared for the Health Funding Authority

ByProfessor Donald Evans, Director

andNeil Price, Research Assistant

Table of Contents

Preface

Executive Summary

1. Introduction

1.1.The reality of rationing

1.1.1. Implicit rationing

1.1.2. Explicit rationing

1.2.The ethics of rationing

1.3.The national waiting times project

2. Ethical Problems with the NWTP

2.1. Problems caused by underlying theory

2.1.1. Justice

2.1.2. Equity

2.1.2.1. Maximisation policies

2.1.2.2. Prioritisation

2.2. Practical problems with the NWTP

2.2.1. Clinical priority assessment criteria

2.2.2. Financially sustainable thresholds

2.2.3. Legal issues

2.2.4. Effects on the doctor-patient relationship

2.2.4.1. The doctor's duty

2.2.4.2. Personal integrity and collective democracy

2.2.4.3. Conflicts of interest

2.2.5. Access to assessment

2.2.5. 1. Issues in General Practice

2.2.5.2. Private Specialists and "Short-cuts"•

2.2.6. Horizontal and vertical equity

2.2.7. Opportunity cost

3. Ethical Advantages with the NWTP

3.1.A more equitable system

3.2. A more humane system

3.3. A more useful system

4. Recommendations

4.1.Avoiding ethical pit-falls

4.2.Achieving ethical gains

4.3. Ethical review of the NWTP

4.4.Conclusions

Abbreviations

References

11

PREFACE

This report has been commissioned by the Health Funding Authority in relation to the

National Waiting Time Project.

The authors of the report are employed at the Bioethics Centre in the Dunedin School

of Medicine at the University of Otago. One has long international experience of

ethics in health care delivery and has published in the field of the ethics of resource

allocation. The other is a graduate of the Centre who is also undergoing medical

training and who has served as research assistant in the preparation of this report. The

latter's contribution has been much more important than his title of research assistant

might suggest.

The researchers were commissioned to:

1) identify the ethical risks, both current and future, faced by the project;

2) identify possible ethical gains which the project might achieve;

3) identify practical remedies for 1) where possible;

4) identify obstacles to 2) and possible avoidance of these obstacles.

In this process they were expected to canvass the following topics:

i) vertical equity

ii) horizontal equity

iii)capacity to benefit

iv)rationing

v) individual v community interests

vi)the objectivity of needs and outcome assessment

vii)ethical and financial thresholds

Where possible they were invited to make recommendations for:

i) the management of identifiable ethical risks to the NWTP

111

ii) the continued ethical surveillance of the NVPTTP

The report takes account of various official papers related to the development of the

NWTP, various debates which have proceeded on the project and relevant literature in

the fields of bioethics and health economics. It also reflects various opinions of

members of ethics committees, members of clinical departments in medical schools

and HHSs, provider managers, other healthcare professionals and stakeholders.

Acknowledgments

The authors are grateful to all those who were willing to share their views in the

process of the preparation of the report. They would also wish to record their thanks to

Dr. Paul Malpass, Clinical Director of the National Waiting Time Project, and his

team for their support and prompt response to requests for relevant material.

lv

EXECUTIVE SUMMARY

General overview

• Given the inevitable shortfall between resource and demand in health careprovision we support the attempt to make the rationing of elective procedures asequitable as Possible.

• We regard the National Waiting Time ProjectTP) as a genuine attempt toachieve greater equity than the waiting list system it replaces.

• We conclude that the determination to admit patients to elective procedures bymeans of Prioritisation according to urgency of need is ethically conimendable• We note that this enterprise is threatened by the adoption of a dual criterion forPrioritisation, viz, urgency of need and capacity to benefit.

• We argue that the distinction between vertical and horizontal equity is valuableand essential to the ethical acceptability of the NWTP, despite the practicaldifficulties in delineating the boundaries of services Within which vertical equityoperates

• We conclude that a robust application of the concept of horizontal equity presentsmore than practical problems of

implementation in that it makes unwan antedassumptions about the commensurability of health and illness states. In so doing itis conceptually flawed.

• We identify numerous challenges to the NWTp and assess their strengths and• wea

knesses. Moreover we make recommendations about how the sustainablechallenges might be addressed in the implementation of the project.

• We identify the ethical gains represented by the NWTP.• We note that the Health Funding Authority has

committed itself to an ethicalreview of the NWTp. The production of this report is part of such a review. Werecommend the continued ethical surveillance of the project in its developmentand implementation and propose means for achieving this.

V

Rationing

• Given the nature of health care interventions it is unavoidable that the gap between

resources and demands on services will widen. The improvement of health care

provision, including the development of new procedures, medicines and

technologies, increases the range of what can be done for patients. Thus, given the

inevitable consequences of cost both of the, innovations themselves and of the

additional commitment to care for larger numbers of patients with wider ranges of

needs over longer time frames, the more health care that is provided the more that

will be demanded.

• Given that not all that is theoretically possible can be done for everyone with

health needs the question arises as to who is to receive the services which are to be

offered and on what basis these offers are to be made.

• This question might be addressed on an informal basis where no explicit

admission of limitations is made. On this model not everyone will receive the

treatments they need but no-one will be refused treatment. The totality of need

will thus be buried in the obscurities of waiting lists which are no more than

permanent resting places for large numbers of patients who entertain unrealisable

hopes of receiving care. This system is convenient in that it avoids the

responsibility of making some hard decisions, it is flexible enough to be exploited

by those who understand its workings and it avoids the protests invited by refusals

to treat.

The unethical nature of implicit rationing is manifest. The system is dishonest; it

is not transparent and consequently it both disempowers patients and invites

widespread abuse; it obscures the nature of the shortfall between need and supply

of health services; it affords inadequate accountability for the allocation of health

care resources.

• Explicit rationing addresses these ethical shorfalls but runs the risk of creating

new ethical deficiencies. The criteria by which selection of patients 'and services

are to be made call for ethical scrutiny. Where the aim is to increase equity other

aims, such as maximisation of benefit, will come into tension with it. Where

Vi

apparent sacrifices of equity are to be made, for example to make special provision

for identified groups, supporting ethical arguments are called for.

The National Waiting Time Project

• The NWTP is an attempt to make rationing policies explicit in elective

procedures. Its origins are to be found in the Report commissioned by the National

Advisory Committee on Core Health and Disability Services published in 1992.

Subsequent discussion documents and public consultation followed but this seems

to have made little contribution to the NWTP as it has been produced.

• One unfortunate legacy from the original report is deeply , problematic, viz, the

determination to assign priority '...according to need, and to those with the most

ability to benefit...' This dual criterion has been uncritically incorporated into the

project despite the commissioning committee's warning that '...the content of

these ideas needs further definition.. .This enquiry is essentially ethical in nature...'

• The NWPTTP has adopted the original proposal to make need a crucial factor in

prioritisation. This is a major feature of the quest for greater equity in the

allocation of services.

• The general HIFA policy emphasises equity of outcome and the NWTP is not in

tension with this. Whether the definition of equity is made in terms of access or

outcome is not ethically important.

• The drive for greater equity is threatened by the apparent intention to combine it

with an attempt to maximise benefit in the further development of the NWTP.

• Maximisation of benefit approaches are incapable of preserving a respect for

equity and their incorporation into the NWTP would be likely to institutionalise

injustices. This would produce a worse situation than existed with the old waiting

list system where the many ad hoc injustices which occurred were capable more

readily of correction, once detected.

• The tension between the struggles for more equity, on the one hand, and the

maximisation of benefit, on the other hand, is seen in the contrast between vertical

and horizontal equity in the NWTP. Ranking patients according to need assumes

the possibility of comparing those needs. Vertical equity is concerned with

commensurate health and illness states, within limits. Horizontal equity assumes a

vii

commensurability of conditions commonly employed in maximisation of benefit

policies. Such commensurability is manifestly absent, and the reasons for this are

conceptual rather than practical or technological.

Practical problems

. For the NWTP to achieve its goal of increased equity the filters of access to the

scoring mechanism (Access Criteria for 1st Assessment - ACA) and the filters of

access to treatment (Clinical Priority Assessment Criteria - CPAC) must be both

inter-rater and intra-rater reliable.

. The two sets of criteria must also be purely clinical in character. They should not

be regarded as allocation criteria.

. Numerous difficulties attach to producing acceptable tools of this sort. For

example, the support of health care professionals for the NWTP will only be won

if these tools are the product of proper consultation with clinical bodies. Two

obvious examples of the need for such consultation are: first, the ACA must be

sensitive enough to avoid missing potentially eligible needs, yet robust enough to

avoid overloading the scoring system - i.e. they must enable GPs to refuse safely

to refer patients on to the next stage even though they have a positive diagnosis;

second, the CPAC must be applicable nationally and their consistent application

must be possible across hospitals and, additionally across time.

The problem of assessing subjective criteria has to be tackled. This will involve

developing sensitivity to patient narratives and to the social context of health

states.

The impossibility of exactness in any developed criteria has been raised as an

objection to the NWTP. Given the nature of medical knowledge no system of

assessment will eradicate risk and all systems will have to tolerate uncertainty.

Nevertheless these must be reduced to minimal levels. The NWTP promises to

make considerable improvement on the record of the old waiting lists in this

regard.

Gaps between Clinically Acceptable Thresholds (CATs) and Financially

Sustainable Thresholds (FSTs) are bound to appear in a less than perfectly funded

Viii

health service. The NWTP will provide a means of identifying the shortfall in the

provision of clinically desirable elective procedures by producing these data.

• It is possible that firm promises made to treat under the booking scheme might

place providers in legal jeopardy when circumstances do not permit that treatment

to occur. This threat might then serve to make providers risk averse and set FSTs

at unreasonably high levels thus, it is alleged, undermining the NWTP. However,

even if such levels are fixed the principle of treatment according to urgency of

need will remain in tact. Thus the goal of equity will not be challenged. Lack of

efficient use of resources will become visible and providers will have to accountfor this.

• It has been alleged that the visible gaps between CATs and FSTs will place

doctors in legal jeopardy as they will be party to failing to, treat patients who are

patently in need of it. This, it is further alleged, would constitute a breach of the

Hippocratic Oath according to which a doctor must do his best for his patient. In

fact all doctors know that under the old waiting list system many of their patients

will be denied treatment though this denial is compounded with lack of openness.

The doctor's responsibility is to make honest clinical judgements in the NWTP.

Where FSTs lie beyond CATs doctors will not be permitted to treat - a different

matter from refusing to treat patients. They will then be the patient's best

advocates for increased provision of care.

• Some clinicians have threatened to discharge their duty to their own patients by

manipulating the NWTP. Such behaviour would undermine the project's aim to

treat the most needy patients and would produce serious harms to more needy

patients of other doctors. The ploy of gaming the system is unethical and,

ultimately, self-defeating as eventually the resources would not be available to

treat the more needy of the gaming doctor's patients.

• The claim that the NWTP will produce a conflict of interest for the doctor between

her duties to the presenting patient and her duties to other patients (possibly

belonging to other doctors) is not damaging to the NWTP. Doctors already handle

such balances in numerous situations such as in the control of infectious diseases.

Conflicts of interest of this kind are therefore not unethical per Se.

• Under the NWTP the General Practitioner will be the gatekeeper at the entry point

of the elective treatment system. This will not be a new role. However it will be

lx

more transparent than previously as the need to control the flow of patients to the

next stage of scoring will demand that many patients be refused progression in the

system for the present. GPs will need clear criteria for such refusals, the

application of which should serve either as a reassurance to patients that their need

is manageable without early treatment or as an indicator that their need is one

which, by its nature, is not one that is likely ever to be met out of public funds.

GPs might feel that they have a more unpopular role to play in the system than

hitherto and that they might lose patients as a result. However if all other

practitioners apply the criteria rigorously such losses should be self-limiting.

The shortcutting of the primary access system by means of private consultant

referrals would appear to threaten the attempt to achieve equity in the system.

However given the need for subsequent scoring the NWTP will offer a more

robust resistance to queue jumping than the old waiting list system. Application of

the CPAC independently of the referring clinician together with a respect for the

integrity of the system will be important factors in combating shortcutting.

• For clinical standards to be upheld and for the most needy patients to access

services earliest the surveillance procedures for those patients who fail to achieve

FST scores and who are referred back to their GPs must be thorough. Apathy on

the part of such patients or their GPs will undermine the NWTP.

• It has been claimed that the expense of administering the NWTP is not justified

and that more health needs would be met by investing those resources in patient

care. This is a common accusation aimed at health reforms. It is no doubt justified

on occasion. In this instance it ought to be noted that the achievement of greater

equity in health care provision which the NTWP promises, even at the cost of a

slight reduction in the number of patients treated, should this occur in fact, might

be an ethically worthwhile achievement.

x

Ethical benefits of the NWTP

• The ethical benefits of the NWTP are best assessed by identifying the

improvements it represents over the old waiting list system. It addresses the

dishonesty, lack of transparency and openness to abuse inherent in that system.

• The NWTP will be a transparent system. Patients who are refused treatment will

know precisely why that is so. They will know that should their need increase

sufficiently they will not be abandoned. They will know that those who are treated

have a greater need than they themselves.

. The NWTP is a more equitable system than the old waiting list system. This goal

is one of its central aims. So long as it is not overtaken by the desire to maximise

benefit the system promises to achieve its objective.

. The NWTP is a more humane system in that it tells people precisely where they

stand with respect to receiving treatment rather than leaving them in a state of

misguided hopefulness. It offers certainty and promptness of treatment to those

who are most in need of it. It leaves untreated patients in no doubt as to whether

their lack of treatment is the result of a clinical judgement or a financial one. They

are thus empowered to address both.

• The NWTP is a more useful system in that it will provide more accurate

information regarding the level of health need in the community and will thus

strengthen the arm of advocates for greater provision in the relevant services.

• The distinction between CATs and FSTs offers doctors the possibility of

emphasising to patients their clinical judgement of the patient's condition whilst

demonstrating that the decision to treat is out of their hands. Such a division of

labour was not so apparent under the old waiting list system.

Recommendations

• In implementing the NWTP great care should be taken to avoid the temptation to

expand it into a maximisation of benefit policy.

• The major practical problem of the NWTP is to win the confidence and active

collaboration of clinicians. They will need to be reassured that the system does not

compromise either independent clinical judgement or the duty of doctors to

xi

provide care for their patients. It is recommended that GPs, consultants and

patients be fully apprised of the nature of the NVTTP.

• Regular appraisal and development of the ACA and CPAC should occur in the

light of experience.

• Continued independent ethical surveillance of the development and

implementation of the system should be provided to reassure the public and the

health care professions at large.

XII

1 INTRODUCTION

1.1 THE REALITY OF RATIONING

The National Waiting Time Project (NWTP) is a method of ensuring that New

Zealand's health care is rationed in a more equitable way than it has been in the past.

Some would argue that health care should not be rationed and any participation in

rationing programs would be unethical. Such a stance is untenable. The need to ration

health care is real and it is nothing new. In 1975 in virtually the same breath as

claiming that the 'fundamental success of the NHS is almost universally

acknowledged' Michael Cooper admits that 'the staff within it have forecast its

imminent collapse almost annually' and

Having set out to provide the impossible, namely the elimination of unmetneed, the professions have found themselves increasingly fulfilling the roleof assessing relative needs and rationing scarce health resources amongstthem. (Cooper 1975 pp9-10)

Why should such a successful public health system be presented with such a

dilemma? What is it about health care that produces such a tension?

The latter half of this century has seen a steady rise in the cost of health care that has

outstripped the growth of economies, worldwide. (Laugesen and Salmond 1994) A

number of factors have contributed to this. Basically it is a result of the increased

effectiveness of medicine. Newer, better and more expensive technologies and

pharmaceuticals are constantly being developed. The result of this is that more lives

are saved which leads to on going health needs, rather than one-off brief episodes of

terminal care. Additionally there are increased expectations of what health care can

and should provide, leading to increasing demands. Each life saved creates the

responsibility for a continued programme of care. This is most obviously true where

maintenance of a cure or amelioration of a condition is expensive, such as with the

provision of dialysis fluids or immuno-suppressant medication. It is equally poignant

in the continued lifelong support of a severely damaged neonate or the maintenance of

a burgeoning elderly population, each the product of successes in health care

provision. Whilst these problems do not provide us with reasons to discontinue the

1

provision of such interventions they highlight the necessity for rationing health care

provision. Welcome as they might be increases in proportions of the GNP to meet

additional demands do not remove the problem for additional interventions will

themselves create further demands.

It is widely accepted today that there is an unlimited capacity for demands on any

health system. Indeed the 'era of healthcare rationing is upon us'! (Veatch 1994) It is

equally well accepted that there is a limitation on the amount of resources that can be

made available to any health system. What is being vigorously debated around the

world is what to do about this.'

The need for rationing can be explained through the principle of "moral hazard" as the

following example illustrates.

Imagine you are eating dinner at an expensive restaurant with five friends. Youhave finished a satisfying meal and are ready to order dessert, but realise youare too full to get $6 of pleasure out of any of them. However, because you andyour companions are keeping the bill on one check, the cost of any dessert youhave will be split six ways. Thus, you order the chocolate mousse and prepareto nibble away at what you can, confident that it will be a dollar well spent.Unfortunately, your five dinner companions, reasoning the same way you do,also order desserts. As a result, each of you ends up paying full price for adessert that none of you thought was worth six dollars. (Ubel and Goold 1998)

The analogy here is that by being collectively responsible for all health care costs we

consider ourselves to only be partially responsible for our personal costs, and

therefore, tend to expect or demand more from the system. The authors go on to

reason that rationing is in the best interests of the patients in a broad sense as it only

provides them with health care they really need, shields them from the "moral

hazard", and reserves resources that can be used in other areas of their lives.2

For examples of the broad spectrum of this debate see (New 1997) (McKie et al. 1998) (Morreim1991) (Little 1998) & (Hall 1997)

2 As an American paper it speaks of keeping insurance premiums down, but a similar case canbe applied in New Zealand. The end results could be saving money within vote health to extendservices, using government funds for other programmes rather than meeting the "inflation" of votehealth due to the "hazard" demand, (or even lowering taxes, if they can be seen to be analogous toinsurance premiums). What is important is the idea of correcting for the distortion of being shieldedfrom true costs.

2

Some would argue that what is needed then is a way of exposing people to the fiscal

consequences of their health care "choices". (Sade 1994) That is, increase the market

properties of health care and let each individual decide for themselves without any

"moral hazard"(Epstein 1996). The ethical objections to this are examined below in a

discussion on theories of justice, but there are a few pragmatic observations that are

relevant.3

First is that the USA has traditionally distributed its health care through a market

mechanism and gross rationing still occurs. In addition to the debate surrounding

managed care and HMOs there is the inescapable indictment of 37 million people with

no access to health care and 25 million more with inadequate insurance cover. (The

White House Domestic Policy Council 1993)

Second is that the economic attributes of medical care make it a commodity that is

unsuited to distribution by a market. 'These attributes include: uncertainty in demand

and prices, external effects, principle agent issues, and conflict in determining optimal

quantities.' (Banks 1996) All of these contribute to market failure.

It is also possible to see the limitation of a market for health care by reasoning through

from first principles.

income disparity across society distorts the accuracy of the market model as afair tool for distributing scarce medical resources, for the amount an individualcan spend to gain access to a needed treatment will often fall short of his or heractual valuation of it. (Council on Ethical and Judicial Affairs 1995 p32emphasis added)

And with respect to the ability of a competitive market to contain costs,

While competition can of course reduce the prices of individual products andservices, its overall goal and probable effect will be to produce new types ofservices, greater numbers of services per patient, more (even if briefer)hospitalizations, more ancillary care, and a wider domain of services rangingfrom sports medicine to wellness to health education. The whole purpose ofentrepreneurial activity is, after all, to increase both the overall market and one'sown share of that market. Expansion, not contraction, is the goal. (Morreim1991 p17)

For a sobering account of the problems associated with market approaches see (Reinhardt1996) originally published in Health Economics 5(6)

Finally there is the important ethical argument that health care is not a commodity like

consumables in the market place. Health is the condition on which the possibility of

making consumer choices depends, it is not simply another consumer option.

Consequently equity demands that people enjoy as fair an access to health care

services as possible in order for their liberty and autonomy to be protected as far as

possible. To ensure that health services are not distributed on a basis which is not

equitable, given that there is an unavoidable gap between resource and demand, some

form of regulation of distribution of services is required in the form of rationing.

It is possible then to conclude that there is a need for rationing of health care to make

up for the inability of a system to match supply and demand and to satisfy ethical

requirements.

Increasing Efficiency

Some participants in this debate claim that the answer to limited resources is not to

ration but to increase efficiency and stretch the budget which is available. (Angell

1993) This, though important, is not a sufficient answer to the problem.

First there is a limit to how efficient any system can get. No matter how efficiently a

health system operates there will always be demand placed on it from the increased

expectations generated by the increased performance.4

The second option of stretching the budget is in itself a form of rationing. Five such

forms of rationing have been described as already occurring in the NHS:

• Denial - not providing care for more or less justifiable reasons (for example refusal

by some general practitioners to register homeless people or drug abusers and non-

provision of treatments claimed to be ineffective of inappropriate)

• Deflection - that is, encouragement to use other agencies for care (for example

substitution of "social" care for "health" care for patients with long term needs)

Indeed as described above every life saved leads to greater costs; the best way to save moneyis to do less and allow more people to die. This is not considered to be an appropriate way to limithealth care expenditure.

4

• Delay - that is, not providing all forms of care immediately, which provides a kind

of holding area to "buffer" excess demand (for example waiting to obtain a general

practitioner or consultant appointment; waiting lists for secondary care; and

waiting in accident and emergency departments)

• Dilution - that is, reducing quality in order that existing resources may go further;

this may or may not also represent a more efficient use of resources (for example

not using the most expensive prostheses or downgrading the skilimix of nursing

teams)

• Deterrence - even when services are nominally "free" there will be certain costs to

individual patients which may deter them from seeking care (for example distance,

such as living a long way from a general practitioner's premises; poor information

or information only in English; and hostile staff or environments) (New 1997 p26)

These are all examples of implicit rationing. That is, ways of rationing demand on the

health system which are not explicitly identified or admitted.

Thus implicit rationing occurs without any open acknowledgment. It has always

occurred within the New Zealand public health system in the same ways Bill New

identified in the NHS. Conversely explicit rationing is any rationing that occurs with

open recognition. If a patient is told "You could gain some benefit from this treatment

but, due to lack of resources, it is not possible for us to offer it" then that is explicit

rationing.

It is worth examining these two ideas in depth because they create a range of ethical

challenges.

1.1.1 IMPLICIT RATIONING

Implicit rationing occurs when care or provision of services is limited but neither the

decision to limit nor any justification for the decision are clearly expressed. (Coast

1997)

The most well known mechanism for implicit rationing in New Zealand is the waiting

list. Under this form of rationing the same level of care is available notionally to all

but only some get it. It is distributed in chronological order of presentation with or

without some manipulation. The decisions and justifications are not clearly expressed

5

because they are not formally made. The waiting list is a default rationing device as it

saves anyone from making 'difficult, formal decisions about rationing.' (Baker 1994

p344) The alternatives, according to Baker are, Rationalisation, which would require

'physicians to reorganize their lives, to limit their freedom to practice their "art"

(Baker 1994 p344) and formal explicit rationing, which would require physicians to

knowingly deny potentially beneficial treatment. It is claimed that this is inconsistent

with the Hippocratic tradition and the physician's raison d'etre. (Baker 1994)

The obvious response to this is that any doctor who lives in the real world would

realise that some patients put on the waiting list will never receive their treatment.

They are knowingly withholding treatment but can deny personal responsibility and

the patient is not cognisant of this form of denial. Thus the alleged inconsistency of

the doctor's denial of treatment with the Hippocratic oath would be compounded by

the deception of the patient by the doctor employing the implicit rationing procedure.

With the advent of managed care another form of implicit rationing emerges when a

clinician simply doesn't mention all the forms of treatment that could be used, but

only those which are cheapest or which the payer is prepared to fund. This rationing is

implicit because the patient does not know that it is occurring. It is also unethical

because it creates a conflict of interests which allows the financial interests of the

payer (sometimes the clinician) to supersede the patient's interests.

Thus each form of implicit rationing is unethical in that it contravenes the doctrine of

informed consent and the ideal of shared decision making. That is, it rides rough shod

over all notions of patient autonomy.

Implicit rationing has been defended by health economists on a number of grounds

(Coast 1997). It is claimed that explicit rationing is not practical in that it is not

immediately obvious what principles to ration by or within what framework decisions

should be made. This is not a very strong objection as there must be some framework

by which current decisions are made, unless it is entirely on the whim of the clinician.

Explicitness simply demands that framework be made explicit and openly

acknowledged as the way decisions are made. Then it can be challenged as being

inflexible or insensitive and so on and possibly developed into a more suitable tool

Ri

rather than remaining in the background as a series of ad hoc decisions for which

there is no accountability. It is also claimed that explicitness is not practical, because

the resolve of the administration will crumble as people appeal the decisions made.

But this too is already happening in informal and unfair ways. The "squeaky wheel

gets the oil" and so too do patients who know how to work the "system" (or non-

system if it is all implicit). The administrator of the waiting list's resolve to maintain

the implicit rationing by wait will often crumble under continued pressure from a

"pushy" patient. With explicit rationing this lack of consistency would be more

obvious.

Economists discuss a variety of "disutilities" which would arise under explicit

rationing. They basically amount to shielding the poor defenceless public, and patient

from the horrible truth that there is just not enough money for a perfect health system.

This would appear to be a belief that it is better for the patient to be ignorant and

happy. Such theorists would, presumably, get on well with that generation of

clinicians typified by Franz Ingelfinger (Ingelflnger 1980). That is the paternalist.

Paternalism is the belief that patients can only be bewildered and confused by the

complexity and uncertainty of medicine therefore the doctor should make all the

decisions for them. The patient's role is to comply with treatment, concentrate on

getting better and be grateful they have such a skilled and beneficent doctor!

The last thirty to forty years of bioethics has seen the ascendancy of the concept of

autonomy. (Siegler 1985) Autonomy is the principle which respects a person's right to

control what happens in their life and to their body. Although we are seeing, in word

if not completely in action, the death of paternalism in medical practice the rise of

"managerial paternalism" is beginning. Any analysis that speaks of disutilities caused

by the truth supports this development. Health care is not only about maximising

peoples' happiness it is about respect for people as individuals with their own goals

and life plans and respect for their right to determine what happens to them.

7

1.1.2 EXPLICIT RATIONING

Explicit rationing remedies many of the short falls of implicit rationing. It is a more

open and honest process. Everyone knows where they stand and for this reason it is

ethically preferable.

As mentioned above the ideal of respect for autonomy provides almost a "trump-card"

in the debate for explicitness. Truly informed consent requires access to information.

If the patient is not provided with all information regarding what treatments they are

being offered, what isn't being offered and why, they are not fully informed.

The argument regarding disutilities can also be adopted for explicitness. There are

studies to show that a range of disutilities exist among those consigned to indefinite

waiting by implicit rationing. (Elliott 1994) (Derritt et al. 1997) Whether this is

greater than being told directly that the service will not be provided is also under

.study. (Derritt etal. 1998) It cannot be claimed on the grounds of ideology or personal

beliefs that one system is more is less likely to create disutility. In addition it may be

that people will differ in what they want to hear, so it would not be possible to say that

people do or do not wish to be told of rationing decisions. The fact remains that they

have a right to that information so it cannot be unilaterally denied.

Furthermore there is a growing consensus that only the community can make the

macro-allocation decisions. Decisions about what services to offer can only be made

on the grounds of value judgements and therefore it is wholly inappropriate for

clinicians, or administrators to make them for the community. (Baker 1994; Downie

1994; Little 1998; Wells 1998) This will require explicitness; in order to involve the

community some form of guidelines or formal system would need to replace the series

of ad hoc decisions that comprise an implicit rationing system.

1.2 THE ETHICS OF RATIONING

There have been a number of public claims that the waiting times project may be

unethical.- The response from the Ministry of Health has been to deny that ethics has

8

anything to do with resource allocation. One Ministry document goes so far as to say

'The ethical paradigm does not provide a useful framework for evaluation of any

rationing decision.' (Feek et al. 1998 p1) This statement is patently unjustifiable.

Hopefully the authors would consider justice and fairness important considerations in

rationing decisions. These are principles which are well suited to an ethical paradigm

and thus ethics provides an essential framework for rationing decisions. In fact equity

is the banner under which the NWTP has been launched and promoted. We shall see

later that this is threatened by the accompanying aim, i.e. maximising benefit. This

Ministry statement could possibly reflect the greater significance which the HFA

attaches to this other aim.

Indeed it has been suggested that the provision of health care itself is by its very

nature an ethical issue. Health care can be seen as a way of restoring or protecting

peoples' capacity to lead 'flourishing lives'(Culyer 1997). In turn a "flourishing life"

is regarded in many ethical theories to be the goal of our existence. (Aristotle 1985) If

health is a matter of ethics then it would be difficult to maintain that its rationing has

nothing to do with ethical theory.

Regardless of this the rationing of any goods intuitively involves ethics. For example

even children (not often regarded as masters of ethical theory) will complain that

distribution of cake or toys is "not fair" Indeed Feek et al, immediately after saying

that rationing has nothing to do with ethics, claim that a booking system would be

more fair than waiting lists (Feek et al. 1998). It would appear then that they are

operating with some sort of ethical paradigm albeit a rather unsophisticated one. The

challenge therefore is to develop an appropriate framework for looking at ethical

issues surrounding resource allocation.

The 1993 report Ethical Issues in Defining Core Services (Campbell et al. 1993)

contains relevant material. Although it was commissioned to consider the ethics of

defining Core Services the theories discussed are concerned with rationing in general

so they are relevant to this discussion also.

Justice

Justice is one of the cornerstones of medical ethics. (Beauchamp and Childress 1994)

It is also, as mentioned, above a principle which is intuitively applied to many issues

often under the guise of a judgement of whether a situation is right, fair, or proper.

(Campbell et al. 1993)

It is an important concept in the debate over rationing and prioritisation (as a form of

rationing) and is discussed at length below (2.1.1).

Autonomy

Respect for autonomy is a lynch-pin of modern clinical ethics and a grounding

principle behind all liberal democratic societies. As discussed above it has an

important role to play in decisions about methods of rationing.

Beneficence and Non-maleficence

These two principles complete the four which are often cited as the core of medical

ethics. (Beauchamp and Childress 1994) Together they sum up the traditional

Hippocratic approach to medicine. Non-maleficence - do no harm, and Beneficence -

the idea of doing everything to benefit the patient. These two principles are often used

by clinicians to describe some of the challenges they experience in rationing

situations. These issues are addressed in section 2.2.

This report attempts to avoid any in depth discussions that draw heavily on ethical

theories. It instead aims to address concerns that have been raised regarding the

NWTP and examine the implications of them for the project. This brief description of

ethical principles is employed here to illustrate that the ethical paradigm does have a

lot to offer the rationing debate.

10

1.3 THE NATIONAL WAITING TIME PROJECT

The National Waiting Time Project (NWTP) is not just about implementing "booking

systems" but is about the 'development and implementation of processes for the

management of the pathway from the time of referral through to the completion of

treatment.' (Malpass and Rees 1998 p6)

The two major hurdles to a smooth journey from referral to completion are the waiting

lists, viz, those for first specialist appointment and those for treatment or diagnostic

procedures. So unsuprisingly the booking systems are a major part of the project.

In 1992 the then Minister of Health, Simon Upton, appointed the National Advisory

Committee on Core Health and Disability Support Services. This committee was

charged with performing a "stocktake" of what was spent and what was gained from

the health budget at that time, and to find out what New Zealanders wanted from their

health system. (National Advisory Committee on Core Health and Disability Support

Services 1992) This committee commissioned a report on waiting lists from a

Community Medicine Specialist, a Consultant General Surgeon and a General

Practitioner. The result, 'Waiting Lists and Waiting Times: Their Nature and

Management' contains the basis of booking systems and prioritisation. (Fraser et al.1993) This report proposes the introduction of booking in order to give some certainty

to patients and promotes the idea of prioritising need.

As to what "need" is the report did not define it fully but instead commented;

While we agree that priority should be assigned according to need, and to thosewith the most ability to benefit, the content of these ideas needs furtherdefinition. ... This enquiry is essentially ethical in nature: we have not attemptedto address these issues here, but recommend the Committee facilitates theirexploration. (Fraser et al. 1993 p28)

The Committee did indeed facilitate further discussion on these matters through the

production of a number of discussion documents, consensus conferences and public

11

consultation.5 Apparently this has been largely ignored by many who have been

involved in the further development of this proposal. In addition the confusing

statement which combines two divergent concepts, need and ability to benefit has had

a lingering effect. This report first addresses the tension created by these two concepts

and investigates what are the most appropriate grounds for prioritisation.

For example (National Advisory Committee on Core Health and Disability Services 1995)(Bridgepoint Group 1992) & (Campbell 1994)

12

2 ETHICAL PROBLEMS WITH THE NWTP

There are two areas of concern with the NWTP; the underlying theory on which the

project is based, and pragmatic issues surrounding its implementation and operation.

2.1 PROBLEMS CAUSED BY UNDERLYING THEORY

2.1.1 JUSTICE

One of the most important underlying issues in any system of resource allocation is

that of justice. There are some items such as food and shelter which we believe

everybody should have. As a community we guarantee to provide these items to those

who are unable to achieve them themselves because we recognise that they are

essential to existence and out of respect for human life we believe that everyone has a

right to continue their existence. There are other items such as cars, and holidays

which we believe should be distributed according to certain rules. These items are not

recognised as essential to life and therefore we allow that those who have, through

hard work or good luck, gained wealth are free to spend it on what they value.

Where does health care fit in? There are two possible approaches to this. The difficult

route is to attempt to reason one's way through the problem. There have been a

number of attempts to do this with varying degrees of success. Some argue that health

care is a basic need that is essential to the fulfilment of human capacities or to achieve

a flourishing life. (Sheaff 1996) Others argue that health care is acommodity that is

produced through the labour of individuals and is thus their's to dispose of through a

market; any talk of another's "right' to it is tantamount to requisitioning their

property. Just as the baker is free to make and sell bread to those who can afford it so

is the doctor free to deliver health care to those who can pay. (Sade 1971) All these

attempts however are grounded in some form of philosophical or ethical theory and

are thus only as compelling as the acceptability of their grounding theory.

An alternative to endeavouring to arbitrate between such views is to be more

pragmatic and attempt to discern the values of the community in which we live and

13

the "sense of justice" which members of the community intuitively apply to these

issues. The main problem here is that we live in a diverse, pluralistic society. There

may be so many different opinions on this that such an analysis is either banal or too

complex to be useful as a tool in resource allocation.

Given the long standing public provision of health care in New Zealand it can be

concluded that New Zealanders in the majority believe that Health Care is the sort of

good that must be available to all regardless of their ability to pay. Thus through some

form of collective responsibility (taxes and the state) we provide a system that allows

everyone access to health care, and, judging by public reaction to events such as the

death of Southland farmer Mr Morrison, citizens believe that this access should be

equitable.

If we can then conclude that in New Zealand health care is seen as an essential need

which should be provided to all, how are we going to distribute it? In today's

economic climate it is impractical to think of an open ended system in which infinite

resources are available for the provision of health care. Likewise it is a reality of

modern medicine that through advances in technology and previous successes we will

continue to see increasing demands made upon are health care budget. The above

discussion concluded that our society does not wish to see this limited resource

distributed by the market. Instead we must think of an allocation system which will

best provide an equitable health service.

Some helpful theories of distributive justice were outlined by Campbell and Gillett in

an earlier report commissioned by the National Advisory Committee on Core Health

and Disability Services in order to illuminate the debate around resource allocation

(Campbell et al. 1993). They describe theories of justice as being either concerned

with the outcome of distribution or the process by which the distribution occurs.

Three outcome oriented or "interventionist" theories are described.

Egalitarianism: this theory is based on the idea that all people are of equal worth and

should therefore be treated equally. Therefore 'everyone has an equal claim to the

amount of health care needed to provide a level of health equal, as far as possible, to

14

other persons' health'. (Campbell et al. 1993 p14) The egalitarian system would

measure the fairness of a system by outcomes in terms of equalising health status. It is

not necessary for egalitarianism to focus on outcomes. An egalitarian theory can be

construed in terms of equality of any "variable". Indeed they even discuss an example

where egalitarianism would require equality of access.

Utilitarianism: this theory seeks to maximise wellbeing. It looks at all the

consequences of a way of distributing resources and compares the sum of the benefits

to any competing arrangements. There are two major limitations which should be

mentioned. The relevant calculations in most circumstances will be virtually

impossible due to the complexities of the real world and assessing all the benefits and

disbenefits of an arrangement. Utilitarianism does not involve any judgement of

fairness. That is it doesn't look at the distribution of benefits merely the sum. For

example, its application might result in a distribution of health care to those living in

major centres and leave rural people with nothing.

Desert or Merit: is a theory which assigns resources to those who are meritorious.

Some difficulties with this are defining what merit is, and working out whether

someone has been affected by circumstances beyond their control or really is lazy, for

example.

The report concluded that there were 'reservations about all interventionist theories'

but that there were 'certain positive features in favour of an arrangement which is

more or less egalitarian.' (Campbell et al. 1993 p 19)

In contrast to these theories process orientated or "Liberal" theories were examined.

These promote individual freedom and try to keep state intervention to a minimum.

Rawls' Theory of Justice: has two basic principles. One is that a person should have

the most extensive basic liberty compatible with similar liberty for others. The other is

that distribution of "social values" should be equal unless an unequal distribution

would favour the least well off. The implication of this is that resources ought to be

distributed to the advantage of those with the poorest health or greatest need.

15

A second liberal theory based on the work of Robert Nozick (Nozick 1974) was also

described. This was called the Minimal State or Entitlement theory. Nozick believes

that justice occurs when no one meddles with the distribution system. The main

concern with this theory is that the state protects each member's right to hold and

transfer their resources without interference. (Nozick 1993) When applied to health

care this theory will;generate the conception of health care as a commodity which is created byskilled individuals and organised concerns and provided on the basis of agreedcontractual arrangements to other parties. ... the usual implication of anentitlement view is that the health care system should be entirely private andshould be funded largely through private insurance. By this means no individualis arbitrarily or centrally deprived of his [sic] resources so as to subsidise theaccessibility to goods by others. (Campbell et al. 1993 p24)

One problem with this idea of distribution for health care is the unsuitability of a

market system for health care described above (1.1). More specifically the very ill

health that necessitates health care often conspires to reduce a person's ability to gain

resources to pay for it. Therefore the ill luck of a health need can be reinforced with

the ill luck of not being able to afford health care. It also embodies a simplified view

of the practice of medicine. Medical education itself leaves the physician with debts to

those who amassed what is clinical knowledge and the "patients" they learned from.

Thus it is a fallacy to think of health care as a commodity solely produced by the

practitioner which is their's to sell without interference.

The report rejected this as a theory of justice as it produces counter-intuitive results. It

concluded that society would not accept a theory which leaves people to suffer when

they could be helped.

Which of these theories are most acceptable to the general population?

A subsequent series of workshops was held around the country with different groups

to try and elucidate what framework was most appropriate for the distribution of

health care. The concluding observations are useful;

On the whole participants grew more uneasy using "desert" as a criterion, themore they explained it. This was even more true of any suggestion of using

16

"merit " . The subjective nature of judgements made on the basis of merit becameobvious in discussions.

[The] criterion of distributive justice most firmly endorsed was that ofdistribution according to need. This meant that resources could be unequallydistributed so that the outcome is the same - so that everyone has the chance to'survive' equally. (Campbell 1994 p9)

It would appear then that New Zealanders are interested in equality in a fairly

egalitarian sense. They are not interested in competition for scarce medical resources,

nor are they supportive of merit or desert considerations. They also give no

endorsement to any principle of maximisation. In exercises that pitted the interests of

several members of a group against each other the participants would not allow a

distribution of resources that allowed some to survive at the expense of others on

utilitarian grounds. They instead insisted on equal shares according to need.

(Campbell 1994)

2.1.2 EQUITY

The definition of equity is elusive. Should it be measured in terms of access or in

terms of outcomes? The HIFA has opted for the outcomes approach moving eventually

to an account in terms of outcomes for groups. Whilst the concentration on group

interests raises some of the worrying features of maximisation policies there is little to

choose ethically between the access and the outcomes approach. The most needy

people are those whose health status, if treated, moves closer to that of the less needy

so approximating to equity of outcome. This would be in line with the most influential

modem account of justice which holds that any unequal distribution of what is

socially valuable should favour the least well off. (Rawls 1971 p302) Thus

prioritisation in terms of need meets the demands of both equity of access and equity

of outcome.

2.1.2.1 MAXIMISATION POLICIES

It seems obvious that in the face of scarce resources we should endeavour to use those

we have to obtain maximum benefit. On this basis judgements of where investment in

17

services should be made are utility judgements. Utility theories are not novel - the

most celebrated account dates from the nineteenth century. (Mill 1910) Those models

which are currently espoused in health economics share common features with this

theory and present identical problems. There are some important differences to be

found between these models the major one of which is the distinction between simple

maximisation of benefit approaches on the one hand and prioritisation of need

approaches on the other. The latter involves an ackn6wledgment that equity is an

important issue in health care delivery.

The prime example of the former model is the employment of the QALY (Williams

1987) or more recent modifications of it such as the EuroQol (EuroQol Group 1990).

These measures combine improvement of quality of life with duration such that a

year's healthy life constitutes one QALY whereas an improvement either lasting less

than one year or realising less than full health or both will constitute proportionately

less than one QALY. Once one has assessed the relative costs of achieving QALYs in

different services one has the means to determine the maximal use of health resources.

These measures are designed to be standardised, non-disease specific instruments for

describing and valuing health states (EuroQol Group 1990) and their development has

been driven by a desire to quantify health gain produced by clinical interventions.

The QALY has been criticised on a number of grounds which relate to the major

weaknesses of utility theories for determining right courses of action. The first is the

identification of goods to be measured. Mill's original theory recognised the problem

of identifying happiness, the key good in his theory. Calculations of the greatest

happiness of the greatest number could not begin until happinesses could be

identified. But he saw rightly that opinions on such matters varied greatly. He resorted

ultimately to leaving their identification to a panel of experts who had tasted all the

happinesses (a conceptual impossibility illustrated by, for example, the need to taste

both the joys of fidelity in marriage and infidelity etc.) and were best placed to

compare them for quality.(Mill 1910) It is not surprising that intellectual pleasures

ranked above animal pleasures in Mill's theory though that ranking would no more

have won majority approval amongst the members of society in his day than it would

today. Similar problems attached to the absence of pain, the negative measure of

18

happiness, where different varieties of pain needed to be compared. In the QALY

application of this theoretical approach to determining the right way to invest health

care resources we find a similar difficulty. The original Rosser-Kind Index of

preferred states of illhealth was based on a hopelessly small and unrepresentative

sample (Rosser and Kind 1978). The Oregon experiment, in which the public at large

was consulted, came up with wildly counter-intuitive preferences such as the

preference for toothcapping above appendectomy (Daniels 1993) which were

immediately discounted by those responsible for health care delivery. But on what

basis was the judgement made that the majority view was out of line? One is tempted

to conclude that any classification which purports to offer an objective order of this

kind represents as much of a view from nowhere as did the views of Mill's experts.

On the other hand there is a wide consensus within society about many health issues

which is reflected in the fact that the NWTP concerns only elective surgical treatments

and not accident and emergency treatment. Nevertheless there is still room for major

differences in identifying health benefits. This is well illustrated by rival attitudes to

the purchase of infertility services.(Lower and Setchell 1993; Redmayne and Klein

1993; Evans 1995)

The second major difficulty posed by maximisation theories concerns the aggregation

of goods. The model assumes that one can gross various health states between patients

in terms of numbers and intensity. This is difficult enough when single identifiable

goods or lack of goods are in question such as relief from pain. Can we confidently

calculate the relative values of easing a large number of moderate pains against a

small number of intense pains? Can we assume that one kind of pain is exactly like

another for computation purposes? Can we even assume that the same kind of pain

constitutes the same need from one person to another? How much more difficult it is

to begin to perform such calculations when other states such as immobility, mental

confusion, foreshortening of life, disfiguring disease, infertility, and so on come into

the reckoning. This a conceptual rather than a practical difficulty and however

sophisticated resource allocation tools become they cannot be expected to achieve an

objective ranking of needs or benefits. The danger of such tools is that their alleged

quantitative character will give the appearance of objectivity and uncritical

19

employment of them might produce distorted judgements about what should or should

not be done in health care provision. (Evans 1996)

The third, and major, problem encountered by maximisation theories is the problem of

equity or justice. Mill never found a satisfactory solution to this problem (Mill 1910

p38) and some modern health economists acknowledge that it has not gone

away.(Mooney 1986) It might be that the most efficient use of health care resources

would be grossly unfair. Efficiency is not the only moral value to be pursued in health

care. In this regard we have noted that the NWTP does not refer to the allocation of

emergency interventions. That the chances of success of a life-saving intervention are

only 15% does not make our investment of resources in such procedures unethical.

Even where they fail we might say still that it was right to have tried even in the face

of the odds, though other gains were assured by investment of those resources in

meeting many other lesser needs. It is also the case that the treatment of many disease

conditions in their early stages is most efficient in that the prospects of full recovery

are greater, the costs of intervention and recuperation lower and the benefits of

avoidance of serious illness are considerable. However it would be unconscionable to

abandon sufferers in dire need to treat those who are as yet only moderately ill in

order to achieve maximal efficiency in the use of health care resources. Thus

prioritisation of need is seen to be a moral imperative. It is the inability of

maximisation theories simpliciter to distinguish between needs and demands, or to

discriminate between needs which mark them off from prioritisation of needs theories.

A foremost example of the latter is the development of the Normal Opportunity Range

tool.(Daniels 1985) This involves a search for an independent measure of need to

which each of the varied illness or illhealth states listed above might be related, thus

offering us a tool for calculating the best use of health resources whilst observing the

need for justice. It is an attractive programme insofar as it is based on a plausible

general account of health care interventions. This account proposes that all health care

interventions are designed to restore patients to a state which, as nearly as possible,

enables them to access a range of life opportunities which would be regarded as

normal, opportunities from which they might have been cut off as a result of their

illness or disability. The larger the range which can be restored to a patient the more

20

desirable is the intervention thought to be as it is seen to address the greatest need

most effectively.

Unfortunately such theories do not avoid the problems of identification and

aggregation of goods nor even some of the threats of injustice encountered in

maximisation theories simpliciter. 6 First with respect to identification of goods, what

constitutes a normal range of opportunity will be a matter dependent on a number of

factors such as the age of the patient. What constitutes a health need will be a matter

dependent on social factors - in a sense longevity, physical grace, fertility and even

freedom from pain are rendered valuable by social context and such contexts vary.

There is no objective determination of the value of such items per Se. Further,

opportunities which would be regarded as pleasant options for some patients would be

seen as vital to others - such as relief from Dupuytren' s contracture for a manual

worker as opposed to a concert pianist. Are we to say that these patients suffer the

same health need? A strong case can be made for the view that only when the role of a

physiological condition in the life of a patient is identified can we begin to assess

whether and to what extent it constitutes a health need. Once the model is modified to

take account of all such variables it dies the death of a thousand qualifications. Such

seems to be the fate of the QALY and prioritisation of need measures fail by the same

token.

Second, needs are no more commensurable than are benefits. The Normal Opportunity

Range measure is faced with the challenge of comparing the narrowed ranges of

opportunity, so far as they can be determined, produced by pains of varying types and

intensity, paralysis, mental illness, infertility, disfigurement, genetic inheritance,

chronic disease and so on. For example, how can the opportunity of a couple to

conceive their own biological offspring be compared with the opportunity of an

employee to resume a normal working pattern, or the opportunity of a disabled person

to participate in sporting pursuits, or the opportunity of a dying patient to avoid the

horrors of excruciating pain and die peacefully? These are conceptual rather than

6 These limitations are discussed at length in (Evans 1993)

21

practical problems and no amount of technical modification of the measure can be

expected to overcome them.

Most significantly the effort to maximise the use of health resources by prioritisation

of need cannot secure equity in health care. For example, the system can no more

protect vulnerable groups who by virtue of age, or chronic disease condition have

little increase of opportunity range open to them, than can the QALY calculation

where only small gains in either extension or quality of life or both can be achieved.

The result has been called 'double jeopardy' where, in addition to the burden of

enduring a lifelong miserable condition of health sufferers are denied the little

improvement that could be achieved simply because much more can be achieved by

employment of the same resources for others who do not have the burden of chronic

illness to deal with.(Harris 1987)

2.1.2.2 PRIORITISATION

An ethical assessment of the NWTP can be made by means of noting how it compares

with and differs from the typical frameworks of resource allocation policy outlined

above.

The project is designed to improve on the old waiting list system by achieving more

equity of access in the allocation of resources in elective surgery. It employs the

strategy of prioritising health needs such that patients with greater need will rank more

highly in the queue for treatment. This will be achieved by the application of CPAC

(Clinical Priority Assessment Criteria) devised for each service and standardised

across services to be employed systematically throughout New Zealand. Ranking of

need is a matter of clinical judgement. Non-clinical decisions about the levels of

services to be provided will be made by the HFA and managers who will together

identify FSTs (Financially Sustainable Thresholds), scores below which patients will

not be offered surgery but referred back to their General Practitioners for continued

surveillance. Patients above the threshold will be offered treatment within six months.

22

The scheme is a hybrid of a maximisation policy simpliciter and a prioritisation of

need policy. It thus attempts both to guarantee equity and maximise benefit. This is

encapsulated in its two criteria of allocation, viz, priority of need and capacity to

benefit. This is an unholy alliance for, as we have noted, maximisation policies

simpliciter are not equitable. How far then can the NWTP be seen as an improvement

ethically on the old waiting list system which was plagued with ad hoc injustices in

allocating elective surgery?

The policy makes the distinction between vertical and horizontal equity. This

distinction offers the possibility of real gains in terms of equity but also possibilities

of institutionalising injustices which could be more difficult to address than those

attaching to the old regime.

Horizontal equity refers to the non-disease specific character of the scoring

mechanism. In its ideal form a patient scoring 50 in cardiorespiratory disease would

be regarded as having the same urgency of health need as a patient in ophthalmology,

mental health or obstetrics with a similar score. The mechanism would therefore

assume a commensurability between various illness conditions that is, in reality, non-

existent. The apparently objective score would, as a result, distort the prioritisation of

need between patients in different services rather than produce equity in terms of

meeting health needs. The NWTP would not, at least in its early phases, approximate

to such an ideal - for example scores of 100 in infertility medicine do not merit

guaranteed access to services at present. But the principle is not foreign to the spirit of

the HFA prioritisation process (Prioritisation Team HFA 1998) in general where ring

fencing for particular services will be allowed to remain intact only so long as it takes

to devise a uniform prioritisation across services. It could thus find a home eventually

in the NWTP. Given that it is flawed in principle this would be a warm invitation to

injustice to patients.

Vertical equity refers to the balancing of needs within a given service. According to

this ideal the use of CPACs would rank patients in a given service in order of urgency

of need. This is not entirely foreign to the standard practice of clinical assessment for

treatment where doctors are constantly distinguishing between acute and elective, and

23

within elective cases between urgent, semi-urgent, and routine cases. The NWTP

simply waits upon clinicians to make explicit how such clinical distinctions are made

in a given service and to standardise those criteria across that service. This is a matter

of clinical expertise. Objections have been made concerning its practicability.

Practitioners have not agreed in all cases on an agreed set of criteria. It is hard to see

that there are good reasons for this and that agreement cannot be reached on what is

best diagnostic practice in any given service. The achievement of standardised criteria

would play an important role in producing better overall standards of practice in

addition to guaranteeing a more equitable service.

The determination to allocate services according to the joint criteria of urgency of

need and capacity to benefit, which threatens the quest for equity in the NWTP, is

encapsulated in the project vision 'to achieve a situation where the people of New

Zealand have equity of access to surgical, medical, and core diagnostic services based

on their clinical need in terms of ability to benefit' (Malpass and Rees 1998). We

have already noted that certain groups of patients identified by their particular

diagnostic condition or their age tend to be discriminated against in maximisation of

benefit approaches to resource allocation. It is for this reason that the central

motivation of the NWTP, viz, to produce a more equitable allocation policy, is

thwarted by the employment of the capacity to benefit criterion. Effectively the dual

approach claims that the health planners should have regard for equity only insofar as

it does not threaten the achievement of maximal benefit in a patient population. But

this is merely to pay lip service to fairness and makes the achievement of equity, if it

occurs, accidental rather than planned. The chances of such an accident occurring are,

for reasons already enumerated, nil.

Thus the conclusion of an ethical analysis of the NWTP is that the principle of equity

is well served on condition that care is taken to concentrate upon urgency of need as

the guiding principle of prioritisation. The ethical gains over the current waiting list

system should be considerable so long as the ranking of patients is not corrupted

either by maximisation elements or by non-compliance (discussed below 2.2.4).

24

2.2 PRACTICAL PROBLEMS WITH THE NWTP

The main practical issues are those arising from the CPAC, the FST, legal matters,

and effects on doctor-patient relationships.

2.2.1 CLINICAL PRIORITY ASSESSMENT CRITERIA (CPAC)

Among the factors which must be considered in relation to the CPAC the question of

whether they are clinically sound is the most immediately obvious. That is, when

applied will they produce clinically acceptable results? Tied to this is the issue of

whether they provide reproducible results both between different assessors (inter-rater

reliability) and with the same assessor over time (ultra-rater reliability).

Reliability Of Assessment Tools

A major alleged criticism of CPAC is that they will not be reliable, either between

different assessors or consistent for the same assessor over time. If true, the

implications of this are important.

It must, however, be seen as a matter of degree. It is a reality of clinical medicine that

few things will ever be 100% certain. In the old waiting list system no accountable

attempt was made to judge priorities. The NWTP represents an improvement in that

this intention is present. What needs to be closely monitored is how well the CPAC

tools are working and further refinements be promised as required.

A recent paper in the NZMJ reported that there was a surprising lack of inter-rater

reliability in the application of CPAC for cataract removal in Wellington. (Halliwell

1998) This paper was based on a small sample of 39 patients and no attempt at

statistical analysis was made. Therefore it constitutes anecdotal "evidence" only. It

does, however, illustrate the issues well.

The author draws the following conclusions,

1. When a patient is assessed independently by two examiners there is likely to be

considerable variation.

25

2. 'The fact that a patient can obtain a given score from one examiner, and then a few

minutes later have a 90% chance of being given a different score by a second

examiner (perhaps as much as 26 points different!), raises serious doubts about the

validity of the cataract prioritisation process.'

3. If accurate measurement of visual disability is difficult how feasible is it to

accurately prioritise other less readily quantifiable disorders.

4. Rigid threshold score is questionable. 'Threshold is a fuzzy zone.'

5. Many patients below the threshold are just as deserving of treatment due to the

inaccuracy of the assessment.

6. The validity and accuracy of assessment criteria must be improved before their

'rigid implementation can be justified.' (Halliwell 1998 p407)

Given the anecdotal nature of the study some of these conclusions are somewhat

overblown. This is especially true of points one and two; valid statistical information

must be available for these claims. Points three and five are related to the argument

about the NWTP representing an improvement over what has been done in the past.

The question we ought to pose is whether the Waiting Times Project represents an

improvement over the old system, and whether deficiencies be addressed as they are

identified. Point four is an important observation. There will never be a guarantee that

the CPAC can prioritise patients perfectly. This does not mean that the attempt to

prioritise is a waste of time as the difference between 20 and 70 points must be

significant. The often cited finding of one patient scoring 26 points differently

between the two assessors is not very informative as there may be many possible

explanations of this individual case. It is certainly not statistically significant. One

could equally call attention to the 62% of patients who scored within 5 points

difference between the two assessors and claim that this study shows that priority

assessment is very reliable.

Point six claims that improvements must be made before the rigid implementation of

the CPAC. Rigid implementation should not be the goal of the NWTP. There must

always be room for clinical judgement in treatment decisions. The role of the CPAC is

to act as an explicit and consistent guide to prioritisation. They are not meant to

function as a proxy for clinical judgement. The more accurately the CPAC can

discriminate need the more closely they can be followed, but it would be a mistake to

26

stipulate from the outset that the CPAC define illness and indications for

interventions. That is not their role. Some clinicians worry that the Ministry of Health

would like to see the CPAC as an exhaustive definition of the clinical decision making

process. The reality is that they are only simplifications of some of the issues

involved. They can never replace the rich and complex process of medical decision

making. With respect to the role of the CPAC themselves they should only be seen as

an attempt to order patients according to their need; not as a means of defining illness.

The issue of intra-rater reliability was raised by Halliwell but not addressed. It has

been examined in a study of endoscopy referral prioritisation in Dunedin. (Sharma et

al. 1998) This study also looked at inter-rater reliability and performed statistical

analysis on collected data. It was found that provided the assessment criteria were

well defined and all raters were using the same definitions there could be a high

degree of inter- and intra- rater reliability

Two more recent papers have contributed to this debate on the reliability of CPAC.

The first paper compares a generic scoring system with clinical judgement as assessed

by a linear analogue scale. (Dennett and Parry 1998) The generic scoring system was

a non-disease specific tool that was provided by the Transitional Health Authority. A

linear analogue scale was used in an attempt to assess "raw" clinical judgement of

priority. The second compares these two with a third disease specific tool. This tool

was developed by consensus between a group of surgeons and facilitated by the Core

Services Committee. (Dennett et al. 1998) Whilst both of these studies perform

statistical analysis, thus remedying the faults of Halliwell, the presentation of the

results of both of these studies was hampered by a focus on inappropriate analysis.

The authors concentrated on the distributions of scores which the different methods

produced at the expense of correlation analysis.

The purpose of the NWTP is to rank patients so that the most needy will be operated

on first. The actual distribution of scores is irrelevant, provided everyone is using the

same scale. What is important is the order in which the patients are put by the tool.

The data presentation in both of these papers glossed over correlation scoring, the

analysis of the similarity between the orders produced by the different methods. An

FWA

earlier paper in the same journal which compared prioritisation methods did an

admirable job of such an analysis. (Agnew et al. 1994) It is a shame that Dennett et al

didn't follow this example. The brief mention of Spearman rank correlation analysis

that is made actually runs counter to the conclusions of the paper, which are

presumably based on the distribution analysis. They concluded that the proposed

assessment methods bear little relation to expert clinical judgement. According to the

statistics there was in fact significant agreement between the subjective (i.e. clinical)

judgement and the disease specific assessment criteria. (Dennett et al. 1998)

These two papers, did however, raise two important issues. The first is that the

reliability of the CPAC is increased if clinicians are involved in their design, and if

they can take account of disease specific issues. 7 The evidence for this is that the

generic criteria did not correlate with clinical judgement, whereas the specific method

did. This is essential to the development of robust CPAC. The reality is that the

clinicians have the knowledge best suited to prioritisation decisions. A concern about

being involved in a potentially unethical activity may be a reason for refraining from

assisting in the development of CPAC thus far. The ethics of doctors' involvement in

rationing is discussed below (2.2.4). There is a need for them to be centrally involved

in the project if the best attempt is to be made at prioritising.

The second was to draw attention to an inability to take account of the priority that

should be accorded to a cancer diagnosis. This is not a fundamental flaw and can be

dealt with in two ways. One would be to build in modifiers to the CPAC to increase

cancer scores. The other is to realise that it was an essential precondition of the

booking systems concept that acute and elective care be separated. (Fraser et al. 1993)

A diagnosis of cancer should remove a patient from the elective stream and thus it is

not appropriate for CPAC to give priority to these cases. If selective listing is

appropriate the NWTP will never be able to prioritise across service lines by a

common measure (see above critique of horizontal equity). Some other publicly

accountable mechanism will need to be found to define priorities between such

different procedures as cataracts and CABGs or cholecystectomies for gall stones and

colon resections for cancer.

Contrast this with ideas of generic measures that would be involved in the use of QALYs forresource allocation.(2. 1.2)

28

Subjective and objective criteria

In order to increase reliability there are calls for the CPAC to be based on objective

data. The trouble with this demand is that not all conditions produce symptoms and

signs that are measurable objectively and that objective symptoms and signs do not

exhaust a complete description of a patient's condition or health need. In addition it is

an important developing aspect of medicine that interventions should be performed on

the basis of the patients' experience of their illness state. So in a patient centred

paradigm of medical practice subjective accounts from the patient should figure in

determination of the need for intervention.

There is a limited number of conditions by which need can bemeasured objectively.

These occur within services which have made the most progress with implementing

CPAC, and those are the services which the HFA is focussing on for further

development of this system. Other conditions and services deal in the subjective. For

these conditions the concept of objective CPAC is inappropriate. Clinicians working

in these areas are thus more likely to voice concerns about the likely failure of the

NWTP. Presumably clinical experience enables the clinician to interpret these

subjective symptoms in terms of likely diagnosis, or else distinctions crucial for the

care of cohorts of patients under the old system would be absent. With practice that

same experience could surely begin to assess urgency of need in a consistent and

accountable fashion.

In addition to these issues the CPAC should reflect the definition of need which the

community endorses and endeavour to reflect something of the community's values in

ranking that need. Therefore there must be a mix of clinical and social factors present

in the CPAC. Exactly what that mix should be can only be decided by the community

as it is not appropriate for either the clinicians or the managers to make this decision.

This is a lacuna in the current waiting list system also, and therefore not an argument

against the NWTP per se as a better option.

29

Exactness

Perhaps the potentially most damaging issue with priority assessment is the question

of accuracy or exactness. This is related to the issues of inter and intra rater reliability.

It is the question of the significance of a difference between two patients of, say, 34

and 35 points out of 100? Can one really say, if the cut off is below 35, that the former

patient does not need an operation but the latter does - or that the latter needs it more?

No system can hope to eliminate risk and uncertainty entirely from prognosis and

diagnosis given the nature of medical knowledge. Thus an attempt to prioritise is not

invalidated by such marginal cases. Clearly the difference between a score of 70 and

20 is significant in cardiology - though it might not guarantee that the patient with

lesser need will not suffer a heart attack first.

This issue is openly acknowledged by all involved in the NWTP but there are

differences between the way people address it. Some say, pessimistically, that it

means that the whole project is a waste of time. (Halliwell 1998) Others,

optimistically, say that it is a problem but that if we keep worrying about little things

like this the system will never get going. (Although it is a little hasty to claim that this

spells the end of the whole prioritisation idea, the second view - the head-in-the-sand

approach- is also to be rejected.)

Welfare economics provides a "theory of second best" which states that provided one

condition necessary for optimality remains unfulfilled, reducing the number of other

conditions that remain unfulfilled will not guarantee an increase in welfare. Ashton et

al use this principle to argue against accepting sub-optimal systems and ending up

with 'expensive "second best" solutions'. (Ashton et al. 1998 p1 1) Once again due to

the uncertainty inherent in medicine it is the counsel of despair to refrain from an

endeavour to approximate to the ideal as far as possible. We have an obligation to

make such improvements in a system that are likely to help it approach optimality;

just as we intervene in order to assist a patient to regain a measure of their former

good health.

For this reason the problem of exactness must be acknowledged but it must not be

seen as an insurmountable obstacle. It must be seen in terms of a constant challenge to

monitor and improve the validity of the scoring systems. The attempt to prioritise is

30

an ethical improvement only insofar as inaccuracies will be identified and not

institutionalised in the rigid adoption of CPAC as unchangeable dogma. We can

approximate to a situation where it is likely for greater need to be treated first, and

indeed have a duty to do so.

One approach to this problem, of inexactness, has been the development of "bands"

replacing a 1-100 scale with 5 bands of priority. The problem with this approach is

that there will still be a cut off between bands and if funding only extends, say,

halfway through a band the patients will still need to be ranked within the band.

2.2.2 FINANCIALLY SUSTAINABLE THRESHOLD (FST)

The financially sustainable threshold (FST) is defined by the HFA as "[t]he

established level of services which can be funded by the funder." In practise it

represents the "score" a patient must gain on clinical assessment in order to receive a

publicly funded intervention.

The FST is a complicated value. Its calculation must take into account acute volumes,

costweights per elective case, referral rate, backlogs, casemix, and contract volumes.

For this reason it cannot be considered a static value but is always fluctuating. One of

the underlying objectives of the NWTP is to introduce certainty of access but the

uncertainty created by the variability of the FST threatens to undermine this (see legal

issues below).

The issue of vertical equity also has implications here. If the goal of the NWTP is to

guarantee national consistency of access, then all HHSs should have the same FST.

The distance down a hospital's list of prioritised patients at which they set their FST

reflects, in part, how many of these interventions they can perform for the sum of

money that the HIFA provides. A hospital which is more efficient will perform more

interventions for a given sum than a less efficient one. They vill therefore have, other

things being equal, a lower FST. Within a fixed budget, such as the HFA operates,

this could see funds transferred from more efficient HHSs (those that can get a lower

FST from a given sum) to those that are less efficient. This creates a climate of

31

adverse incentives which could be damaging to the overall performance of the health

system. As the overall goal that has stimulated the development of the NWTP is toget

the best health system possible for New Zealand within the budget provided, any such

adverse incentives must be avoided.

In contrast to the FST when a CPAC is designed it is possible to define a Clinically

Acceptable Threshold (CAT), the "score" at which it is clinically desirable for the

intervention to be performed. In a perfectly funded service these two values would be

the same. When a service is under-funded then the FST will be higher than the CAT.

This creates a number of problems associated with rationing. Those relating to

questions of ethics and duties of the clinician will be discussed below.

One issue which must be addressed is tied to the nature of the health system as a

public service run by a government responsible to its electorate. In a democracy

citizens expect information to be available to them to assess the performance of their

elected representatives. An important issue in recent years has been the size and

developments of waiting lists for elective surgery. The waiting list does not provide an

accurate measure of the performance of the health system. (Fraser et al. 1993;

McDonald et al. 1998) It does however provide a readily visible sign of something's

not being right and is identifiable as such by the public. As the NWTP aims to remove

these lists it has been alleged that this will be tantamount to concealing the facts

concerning the reservoir of need in the community.

An answer to this challenge of losing the indicator inherent in the waiting list is to

challenge the validity of the indicator. Waiting lists are so open to manipulation and

misrepresentation that they send out misleading messages and are often employed to

do so by interested parties. The booking system actually has the potential to provide

far more accurate information regarding the level of funding for elective procedures

and the levels of unmet need. The number of people who meet the CAT but fall short

of the FST is a direct measure of the amount of need in the community which is not

being met. If the general public had access to this data they could then choose to

accept it, as the cost of meeting the need would be too high, or require their

government to address it. Although the NWTP makes this data available and it has

32

been collected already for small projects 8 there is no clear commitment from the

project team to collate this data on a large scale. Therefore there is the danger that the

FST will act as an arbitrary redefinition of illness (Little 1998) and ignore the need of

those below it. This is an ethical issue because it runs contrary to the ideals of a

democratic society and attempts to sweep a potential problem under the carpet.

In adoption of the NWTP care must be taken at the GP level to ensure regular and

adequate surveillance of the health of patients and adequate access to scoring

mechanisms (2.2.5). hI addition to this being essential to the running of the system it

will generate reliable information on the level of need in the community. If this

information is not being gathered in some way then the NWTP is likely to be seen as a

way of disguising need. If it is available then the project can be seen as a genuine way

of increasing transparency and accountability at all levels of the health care system.

2.2.3 LEGAL ISSUES

The two main issues of legal liability arise from the HHS's liability if a "booking" is

not met and the clinicians' liability if they apply CPAC which are challenged.

If an HHS books a patient in for a procedure and is subsequently unable to perform

that procedure it is exposed to potential legal liability under the Consumers'

Guarantees Act and the Fair Trading Act. It is claimed that this potential liability is

likely to make the BESs risk averse when making bookings and setting their FSTs.

This will serve to undermine the goals of the whole NWTP as certainty will not be

given. (Anon. 1998) This claim is not strictly true as the goal of treating patients

according to priority is still intact whether they are actually "booked" or not. It is an

ethical issue in that it represents a lack of use of resources where a tier of

administration is in place to "book" patients but fails to do so out of fear of legal

liability.'

8 Such a project (Haydock 1999) is discussed below in section 3.3.

After all the whole rationale behind the NWTP is to arrive at a more equitable and efficientuse of healthcare resources therefore it seems reasonable that all uses of health care resources besubject to scrutiny. To waste resources in an attempt to save them represents an inherent fault in thesystem and applying an inherently faulty system may well be unethical.

33

Recent Court decisions in New Zealand have indicated that in order to escape liability

a doctor must act in a way which is consistent with a body of professional opinion and

with a rational basis.'° If the CPAC do not fulfil these two criteria and clinicians use

them to make judgements about who is not suitable for an intervention they expose

themselves to potential liability. This must be taken into account in the development

of CPAC that are consistent with the best current and evidence based practice.

2.2.4 EFFECTS ON THE DOCTOR-PATIENT RELATIONSHIP

Among the more publicly aired objections to the NWTP are claims that it represents

an affront to professional ethics and threatens the doctor-patient relationship itself.

2.2.4.1 THE DOCTOR'S DUTY

Perhaps the first objection is that doctors have a moral duty to do everything possible

for their patients but that the NWTP will mean they have to deny surgery to patients

that "need" it. Again, as already noted, this represents an improvement on a system

which only pretends to offer treatment to many - this compounds the unethical nature

of denial.

It is a central tenet of professional ethics that doctors must do their best for every

patient. If in their best clinical judgement the patient needs an intervention (and

consents to it) then it is the doctor's duty to perform it, or arrange for it to be done.

In today's health care environment things are simply not as simple as this. E. Haavi

Morreim challenges this claim with a new way of looking at the doctor's role in

medicine under the new economic regime of cost containment which is emerging

world wide. (Morreim 1991) She claims that it is untenable to continue to think of a

'° Northland Health v Rau Williams, although this case was regarding access to treatment theimplication of the judge's comments were that the precedent could be applied to matters of resourceallocation also. (Marr and Wilson 1998)

" This book looks at the American setting but the issues are applicable as they relate to thereality of cost-containment, rationing, prioritisation, and clinical guidelines which are rapidlybecoming part of the American health care "system".

34

duty that physicians have to provide a third party's resources to a patient. Technical

expertise, care, and commitment are the physicians' to give but the resources are the

third parties to provide. In this way the physicians' role can be seen as a duty to

practice the best medicine they can and to act as the patient's advocate to secure

resources from the funder for their care.

Similar principles are apparent in the New Zealand Medical Council's ethical

guidelines 'Doctors [sic] Duties in an Environment of Competition or Resource

Limitation'. These guidelines state that;

• Doctors must provide the best standard of care possible with the resources

available to them

• Doctors must not allow commercial interests or those of their employer to affect

clinical judgement, but,

• Doctors cannot be held responsible in any forum for not providing what is not

in their power to provide.

• Doctors do, however, have the responsibility to advocate to the appropriate

authorities for the provision of the range of services needed by their population, and

report any deficiencies.

It continues to say;

'If the state, an agency of the state, or an institution decides upon the services tobe made available to the public, the responsibility for the consequences of thosedecisions must rest with the state or the institution, as the case may be, and notwith the doctor who has been forced to provide a lesser service than the doctordeems optimal.' (New Zealand Medical Council 1998)

So doctors are not responsible for providing what is not their's to provide but are

responsible to advocate on behalf of the patient. What does this mean? How "hard"

should the doctor advocate?

2.2.4.2 PERSONAL INTEGRITY AND COLLECTIVE DEMOCRACY

It has been suggested by one prominent surgeon that he will simply give all his

patients 100 on the scoring sheet thus negotiating them through the NWTP system and

35

ensuring they receive the operation he believes that they need. 12 Is this to discharge

his duty to act as the patients' advocate?

Returning to Morreim (Morreim 1991) she describes such ploys as gaming the

system. For various practical, legal and moral reasons all guidelines and policies in

health care must have some flexibility (patients will continue to act as individuals!).

Taking advantage of this flexibility in a less than honest way is described as

"gaming". Gaming appears to be a way in which doctors can regain the control over

health care resources which they are losing to third party payers. When the doctor

believes that the patient is entitled to something, as in the case of the surgeon above, it

seems reasonable to manipulate the system a little in order to fulfil this entitlement.

There is a number of reasons why this should not be done.

First it contravenes the principle of non-maleficence. 13 Harms can occur to the patient,

other patients, the doctor and society. If the doctor exaggerates their illness patients

may be harmed by thinking that they are far sicker than they are. 14 Patients may be

harmed in the future due to the stigma of a condition that they never really had. Other

patients are harmed if they miss out on care or treatment because a less needy patient

was given priority under false pretences. This is very important. It was discussed

above (1.1) that rationing of health care is a reality under modern economic

conditions. If for example a doctor and patient 'overplay or develop' cardiac pain at

rest in order to receive treatment (Adams 1998), how is the doctor to ensure that the

patient with genuine rest pain is treated? This temptation may become self limiting for

this reason. As GPs find it more difficult to secure outpatient appointments for their

patients they may begin to follow referral guidelines and access criteria more closely,

and as specialists find their lists becoming more crowded they may be more judicious

about who they put on them. This is the goal of the waiting list project. By acting in

12 This comment was made by Prof. Home on the television programme "Holmes". (Holmes1998)

13 One of the four grounding principles of medical ethics as described by Beauchamp andChildress (Beauchamp and Childress 1994). This is the principle of "do no harm".

14 Morreim cites the case of Pauline Stafford who committed suicide after being led to believeshe had brain cancer due to her physician making it up to ensure her CT scan would bereimbursed. [Stafford vs Neurological Medicine, Inc. 811 F.2d 470 (1987) cited in (Morreim 1991)1

good faith from the beginning the development of bottlenecks that force compliance

could be avoided.

There is a further check on tampering in the NWTP. Consistent failure of one GPs

referrals to score the FST could mark that GP out as failing to follow the referral

guidelines or apply the Access Criteria for first Assessment (ACA) appropriately. An

independent rating at the second level would also check on the potential private

specialist short-cut to treatment (2.2.5.2).

The physician could be harmed through loss of credibility. Gaming is an affront to

veracity and thus undermines the physicians own integrity. Every one is harmed if the

physician just plays along with an apparently unjust system rather than challenging it.

That is, if the clinicians just ignore the rules and keep doing their own thing when the

system is unjust they are in a sense tacitly approving of it. The correct thing to do is

show how following the rules leads to injustice and publicly challenge it. Doctors

have considerable standing in the community and carry some responsibility to use it

when necessary.

Contractual justice can be undermined. If the health system is seen as a form of social

contract by subverting the "rules" of its operation the doctor is breaking the contract

and producing injustices. The doctor is also overriding the autonomy of all other

members of society who voted for the government who run the health system

according to these rules. These rules are presumably modelled on some form of

distributional justice so this too is undermined if the clinician manipulates the system.

As a society we have developed policies through, hopefully, transparent and

democratic processes and

no citizen is preemptively entitled unilaterally to defeat those policies simplybecause he [sic] thinks them foolish. In a democratic society, collectivequestions of policy are settled by public debate and vote, either directly orthrough representatives. As society has the right to limit and draw prioritiesamong its expenditures, it is not the physician's place to undermine suchdecisions or the democratic process by which they were wrought. It is society'stask, not the physician's, to determine overall access to health care.(Morreim1991 p87)

In order to preserve their personal integrity and out of respect for the democratic

society we like to think we live in doctors must "play within the rules". Admonition to

37

do this is also given in an American Medical Association document on resource

allocation,

Justice in ...[resource allocation].., will never be achieved until limitationsimposed by scarcity are accepted by all, without attempts to circumvent theallocation process. (Council on Ethical and Judicial Affairs 1995 p35)

At the same time doctors must actively advocate on behalf of their patients and if they

believe injustices are being done speak out.

'Physician's should continue to look for innovative ways to increase theavailability of and access to scarce medical resources so that, as much aspossible, beneficial treatments can be provided to all who need them.' (Councilon Ethical and Judicial Affairs 1995 p35)

How can doctors balance all these responsibilities? First they must make a clear

distinction between clinical and resource allocation issues. They cannot let their

clinical assessments be influenced by economic considerations. These must still be

based on their expertise and the best scientific evidence available. Actual treatment

decisions, however, will be influenced by economics, this is a reality of the present

health system. How the limitations on services affect the individual patient must be

explained to them as part of the informed consent process. As the doctor-patient

relationship is evolving to share responsibility for medical uncertainty it must now

share responsibility for availability of resources. This spirit of openness is reflected in

the Medical council guidelines;

Where the best method of diagnosis or treatment can be identified but cannot beprovided, a doctor is advised to explain to the patient what is optimal and whatis available, and the consequences of taking the available course of action.(New Zealand Medical Council 1998)

In this way it is possible for the doctor to uphold dual responsibilities. First to the

patient to practice medicine to the highest standard, make an accurate diagnosis, and

act as the patients advocate: second, through application of CPAC, to uphold society's

way of determining how medical resources will be distributed. If either the doctor or

the patient take issue with the result of this they have the right as members of society

to actively seek change. They do not have a right to try and undermine the process.

38

2.2.4.3 CONFLICTS OF INTEREST

It could be claimed that this dual responsibility reflects a conflict of interest and

would thus be damaging to the doctor-patient relationship. It is perhaps useful to look

at what is meant by a "conflict of interest". The term itself is often used and seldom

well explained. Marc Rodwin describes a conflict of interest as occurring when

interests or commitments compromise independent judgement. (Rodwin 1993) The

above recommendations take this into account. Prioritisation should not affect clinical

judgement regarding indication for a procedure. Any attempt to make the FST a proxy

definition of clinical indication should be resisted. As a reflection of the clinician's

role as advocate for their patients there should always be tension between

administration and clinicians over this "gap" until the FST is as low as the clinically

acceptable threshold.

In contrast to conflicts of interest one can think of conflicting interests. Whereas a

conflict of interests represents an individual performing two roles which 'should not

be performed simultaneously' ...conflicting interests... 'occur in any situation where

competing considerations are presumed to be legitimate.' (Rodwin 1993 p254) This

raises the question of whether it is appropriate for clinicians to simultaneously

perform the roles of assessing clinical need and ranking priority according to agreed

principles.

There is a number of examples of dual duties to the patient and the community or

other patients. Will these serve as robust analogies?

Psychiatry and infectious disease medicine are examples of areas where a doctor may

have to weigh the patient's interests against society's interests. This can lead to

involuntary detention, committal or quarantine, and breaches of confidentiality in

terms of notification of diseases and protection of identifiable individuals who may be

at risk. Organ transplant and IOU beds can sometimes cause resource allocation

quandaries in which doctors must decide between patients.

Perhaps the best analogy is that of certification. There are instances when patients

come to their doctor to be certified as either fit to a certain level or to certify disability

39

or unfitness to perform certain activities. When the patient wishes to be certified as

unfit in order to receive some form of financial support we have a close analogy. The

doctor's diagnosis and clinical judgement regarding management of the patient are

made, but in addition the doctor must assess whether the patient is in fact disabled

enough not to carry out work or activities of daily living. If the financial support is

coming from the state we have almost a direct analogy. The doctor must make a

decision to assign certain resources to the patient's care, if they decide the need

warrants it. In both this case and that of priority assessment the patient stands to

receive some benefit and this will be paid for by the state, and in both cases the doctor

must decide whether to allocate the resource to the patient according to some sort of

set standard, and independently of their judgement about the diagnosis and "best"

management.

It is not then without precedent for the clinician to have competing but legitimate

considerations. Thus although the NWTP may mean clinicians are faced with having

to balance conflicting interests, it does not represent a conflict of interests that is by its

nature unethical.

2.2.5 ACCESS TO ASSESSMENT

In order for the NWTP to meet its stated goal of equity for the whole population there

must be equitable access to assessment by the CPAC. The project must act as a series

of filters, i.e. people see their GPs and get filtered to outpatients clinics and then get

filtered for treatment.

This has a number of implications. First, everyone in the population must have access

to the scoring procedure, that is, the filter must be wide enough at the community end

to capture everyone who might have health needs. Second, each "mesh" in the filter

must be large enough to let through those who might have needs but screen out

enough people so that the next level doesn't get clogged. Thus prioritising access will

occur even at the GP level.

In practice this means that everyone who feels they have a health need must have

access to a primary care provider who can then refer on those likely to be assessed as

40

needing an intervention, with a reasonable margin of error, in such volumes as can be

assessed by the outpatient clinics. Unless everyone has access to primary assessment

the system will fail because need will be missed.

If the GP filter fails the system will fail because either not everyone referred to out-

patients will be able to be assessed or some will not even be candidates for primary

assessment. In each case some patients with demonstrable need might be missed.

2.2.5.1 ISSUES IN GENERAL PRACTICE

This raises issues for general practitioners in addition to those potential consequences

to the doctor-patient relationship mentioned above.

If the GP represents the mouth of the funnel which leads to specialist assessment, and

ultimately treatment, everyone must have access to their GP if equity of care is to be

achieved. There is a number of factors which can influence access to the GP. These

include financial costs, geographical access, and opportunity costs such as finding the

time to go. Perhaps the most pertinent to this discussion however, is the idea of a

sense that the GP will not be able to do anything. It is imperative that the NWTP

doesn't start putting people off seeing their GP because they believe nothing will

come of it. This is an important issue which will in part be addressed below under

comments about GP assessment and public education. It must regarded as a possible

but undesirable outcome of the booking system.

Assessment by GP

As discussed above the GP's role in the booking system is to match thesupply of out-

patient appointments to the demand from potentially needy patients. They must, by

referring those patients who are most likely to score highly on assessment ensure that

the specialist assessment stage of the system doesn't become overburdened. This will

involve a preliminary assessment. The idea of "Access Criteria for 1St Assessment"

(ACA) is on the HFA's agenda for what is known as Stage II of the NWTP. This

should be accorded higher priority as it makes little sense to develop the assessment

riii

procedures further in the absence of a guarantee that the most needy patients are being

scored. GPs are thus an essential key to the viability of the project.

The ACA must also meet certain requirements. They must be able to identify patients

who are likely to meet the requirements of the CPAC. In technical terms they must be

highly sensitive though less specific than the CPAC so that there is less chance of

missing needy people but at the same time they must minimise the number of referrals

which do not meet the CPAC. This is the standard requirement for any sort of

screening test.

They must also be objective, well defined, and seen as part of what the specialist

assesses in the CPAC. This will protect the GP's relationship with the patient and the

patient's faith in the system. The GP must be able to say, "I'm not going to refer you

at this stage because X requirement has not been fulfilled. If I did refer you, you

would not meet the specialist's requirements because they apply these criteria and

more. It would just be a waste of everybody's time."

It must be obvious that GPs are not just acting on their own whims about patients

otherwise patients will feel that the doctor is conspiring against them and denying

their entitlements. It must also be obvious that if patients' conditions worsen they will

then be referred. Otherwise the patient may not present again under the impression

that it is pointless.

The referral of those who do not make the treatment list is back to the GP for

surveillance. GPs should therefore be vigilant in exercising this responsibility and not

depend upon the initiative of the patient for the system to work.

This is especially important for conditions such as coronary artery disease. If the

patient is not monitored closely the results of deterioration could be catastrophic.

It would be naive to say that there would not be pressure on the doctor to "just refer

me anyway". This is related to the pressures on the doctor-patient relationship above.

This will represent a challenge to the relationship between the doctor and the patient

but not necessarily the end of it. It requires special education of doctors in employing

the system. As already noted it is important not to just refer indiscriminately because

then the role of gatekeeper will be ignored and the assessment level will become

42

jammed. A useful rule of thumb would be to ask the question - if I refer this patient

and everyone else refers their similar patients will the system still work?

This necessitates the important step of public education about what the booking

system really seeks to achieve, viz, equity of access according to need. That need is

assessed according to nationally applied guidelines and GPs are there to reassess that

need as the condition develops. It is not primarily an attempt to ignore need, and hide

people's needs. People have to be encouraged to see their GP if they think something

is wrong and attitudes must be worked on so that everyone accepts that access to

specialists and interventions must be rationed and that the fairest way to do that is

according to need of need. It is easy to state this but it will often be hard to explain it

to a disgruntled patient. General Practice, however, is a. specialty which has

concentrated on understanding the relationships of doctors with their patients and so it

should be in a good position to meet this challenge.

Coaching

It is possible that GPs might be pressured or choose to coach their patients in how to

score highly. That the system is open to such abuse has always been acknowledged

and was addressed in the original proposal. The conclusion was that this may occur

but is preferable to the current system of 'idiosyncratic advocacy on behalf of patients,

and either naive or assisted knowledge' given to patients to help their priority under

certain surgeons. 'It is better that at least the priority system be explicit, and known to

all.'(Fraser et al. 1993 p26) The issue of coaching is a matter of personal ethics for the

practitioner and subject to the same comments made above regarding "gaming" and

misrepresenting the patient's condition. As to patients learning how to cheat the

system after repeated assessments or patient advocacy groups coaching patients, at

least now everyone has access to that information. A transparent system facilitates

more ready identification of gaming, even though it might appear to offer an invitation

to the same. This is an ethically preferable situation.

43

2.2.5.2 PRIVATE SPECIALISTS AND "SHORT-CUTS"

An aspect of private providers operating within a public health system that is of

ethical concern is the concept of "relative inequality of access" (Holm 1989). This is

the situation of a person having access to the same services but being able to access

them sooner by paying. This has always been a feature of our waiting list system, but

one which should be challenged by the goal of equity of access according to urgency

of need. The option of being able to access a FSA in the private sector sooner than is

possible for the same level of need in the public system presents a threat to the stated

goal of equity.

What should be done about this? Pragmatically administrators of the public health

system are not too concerned with people accessing the private sector because it shifts

the cost of their care from vote health to their own pockets or health insurance. Are

there, however, any ethical concerns with this potential short cutting?

Presumably in order for a specialist to assess a patient for a publicly funded

intervention they must meet the same CPAC whether they are seen in a public or

private clinic.

One concern is that a specialist seeing private patients may score them differently than

if they were public patients. This is predominantly a matter of personal ethics for the

specialist. It would be premature to abandon a system because it has the potential to

be abused. Instead we should continue to expect our clinicians to behave ethically and

any monitoring or review should detect any "irregularities" in an individual's practice.

Such monitoring or review of assessments made in the private sector should be

considered by the NWTP team.

Another concern is that the patient who can access a private specialist assessment will

avoid waiting. There are two responses to this. One is that one of the goals of the

NWTP is to have realistic waiting times for FSA so this should reduce the magnitude

of any difference in access time. Perhaps more cogent is the ideal of prioritisation.

Provided the GPs are prioritising patients for FSA properly those with greater need,

44

and by implication those who are likely to score highly enough on the CPAC to

actually receive the intervention should been seen more urgently. By implication those

with longer waits who choose to access private assessment will be likely to be

assessed as lower priority for intervention. In this way they have purchased their own

piece of mind but not a more timely intervention. If it turns out that the primary

assessment had missed something and the specialist assesses a higher need with the

CPAC then the private specialist has acted as a safety net. Of course there is no such

safety net for the patient who chooses not to, or cannot, access private assessment.

This emphasises the importance of on-going monitoring of the patient's condition as

discussed above.

2.2.6 HORIZONTAL AND VERTICAL EQUITY

The notions of horizontal equity and vertical equity were discussed above (2.1.2). The

fallacy of the claim that horizontal equity could be achieved through maximisation

calculations was addressed. In the implementation of the NWTP, however, there is a

problem attaching to the notion of vertical equity which also threatens the quest for

greater fairness. It concerns the narrowness of the definition of a service. For example,

it has proved impossible within ophthalmic services to produce a scoring mechanism

which covers the treatment of such widely differing conditions as glaucoma, cataracts,

ectropion and entropion. These conditions have markedly different implications

ranging from irreversible visual field loss to significant pain and corneal ulceration.

How is one to compare the urgency of need between these outcomes? In other words

the problem of horizontal equity invades particular service areas in health care

provision and vertical equity has to be sought in delimited areas of services. Cataract

sufferers can be pretty accurately ranked in terms of acuity of vision and like

parameters 15, though the social impact of those conditions in a given patient's life is

more difficult to compute. There is still room for some uncertainty therefore in

ranking the health needs of such patients. The ame applies to the assessment of

subjective symptoms. Yet attaining the ideal of certainty and the elimination of risk in

diagnosis is, by definition, beyond the reach of clinicians given the nature of medical

is Admittedly this is not a universally held view, see comments on Halliwell (1998) above(2.2.1)

45

knowledge. One therefore is best advised to go along with the scores, however close,

if one is to achieve most success in treating the most urgent needs.

The solution to this problem would appear to be the same as the solution to overall

horizontal equity. It can't be done. Disease specific CPAC have been found to be

more reliable models of clinical judgement than generic CPAC. (Dennett et al. 1998)

Therefore in order to avoid injustices of the type described above (2.1.2) there will

need to be more disease specific CPAC developed. This should be addressed by

clinicians as they become involved in the development of the CPAC as presumably

they will know which conditions share similar enough characteristics to be assessed

by common criteria and which will require separate consideration.

2.2.7 OPPORTUNITY COST

A further concern which has been raised about the NWTP is that although it embodies

an admirable ideal, the actual cost of its implementation means that it may not be

worth doing. The claim has been made that the extra levels of bureaucracy needed to

ensure its smooth running will cost money which would be better spent on just going

ahead and performing more operations. In a time when clinicians are being told to be

fiscally responsible and only use resources in ways which are known to produce

benefits it is argued that administrators should be held to the same standards. This is a

common conception of health reforms which are producing more and more levels of

administration, and by implication consuming money that could be used in the

practice of medicine.

In response to this it is argued that the administration actually saves money because it

ensures that the system is being run more efficiently than ever. It is not the purpose of

this report to provide an economic analysis to decide between these two claims. Two

comments on the ethics of this situation are, however, warranted.

The first is that due to the improvements in equity and justice expected under the

NWTP it is worth spending a little more on its operation. The goal of providing

46

services to those who need them most is an important one. If it is a slightly more

expensive or less efficient system that is the price that must be paid to ensure equity.

The other is to ratify the view that all members of the health system share the

responsibility for efficient use of resources. (Daniels et al. 1996) It would be unethical

for the administrators not to be critical of their practices in the ways that the health

reforms and the NWTP have demanded of the clinicians. The move towards evidence

based medicine is to be applauded, a similar move to administration practices that can

be shown to make the most efficient use of the resources available for the practice of

medicine, given the forgoing qualifications, would be similarly laudable.

Further costs are accrued through the continued surveillance of patients by GPs. These

may fall largely on the patient so may not figure in an HFA analysis of the project but

would substantially affect patients' views of the usefulness of the system. It could be

argued that for the costs of continued living with the condition the procedure would be

paid for. If this is true it is more likely to be proven through data provided by the

booking system. This will be discussed below.(3.3)

47

3 ETHICAL BENEFITS OF THE NWTP

The ethical benefits of the NWTP must be seen in terms of improvements over the

status quo. The current waiting list system has a number of deficiencies. The ethical

benefits to be gained from the NWTP can be identified in the way it addresses these

flaws. For example, it acknowledges that the old waiting list system was flawed in a

number of respects. It was dishonest insofar as it gave some waiting patients the

impression that they were to be recipients of care when no such possibility existed. It

was not transparent in that the criteria for access to treatment were not public, thus

disempowering patients. It was not even handed as considerations irrelevant to the

health needs of patients, such as the identity of their medical practitioner or their

geographical location, helped determine who was to be treated. In part, at least, the

initiative might be seen as an attempt to address these faults and as such it is to be

welcomed and applauded.

The most important limitation of the waiting list system is that it does not openly

address priority of need. That the NWTP even attempts to do so is an ethical

advantage. The degree by which it achieves this goal can been seen as the size of this

advantage.

Many of the arguments below are revisions of those used above to counter those

offered against the NWTP. This explains the relative brevity of this section which is

not an indication of importance of the advantages of the system.

3.1 A MORE EQUITABLE SYSTEM

The issue of equity was addressed above (2.1.2). This discussion focused on the

inequity produced through the application of maximisation policies. That

maximisation policies might be implemented is one of the major dangers of the

NWTP from an ethical point of view. By the same token the potential increase in

equity is the major benefit and indeed provides an imperative to implement this

system albeit with caution.

48

Once the idea of rationing is accepted (see 1.1) the immediate question is how this

should be done. It was discussed that one of the most influential theories of justice

would support a distribution of health consistent with the goals of the NWTP (2.1.2).

That is, distribution such that those with the greatest need are given the greatest share

of resources. The current waiting list system makes no explicit attempt to pursue this

ideal. This is a core goal of the NWTP. For this reason the NWTP provides a more

just and equitable system for distributing limited health care resources than the current

waiting list system.

Distribution of health care resources according to level of need is equitable in terms of

ethical theory and in terms of values inherent in the public consultations undertaken

by the National Advisory Committee on Core Health and Disability Support Services

(Campbell 1994) and the Ministry of Health (Bridgepoint Group 1992).

3.2 A MORE HUMANE SYSTEM

The discussion above regarding the merits of explicit rather than implicit rationing

outlined the important issues at stake here (1.1). It was argued that explicit rationing

was ethically superior because it respected autonomy, a core ethical value, and

arguably produced utility associated with the certainty of knowing whether or not

treatment would be provided.

Those who support implicit rationing cite the benefits of being shielded from the truth

regarding unavailability of treatment. One clinician has even openly acknowledged

that he will place a person on a waiting list with no intention of providing treatment

and then 'jolly them along till death'.

The counter claim to this is to cite the suffering of people on waiting lists with express

regard to living in "limbo". (Fraser et al. 1993) (Elliott 1994) Illness creates enough

uncertainty in a person's life. The lack of knowledge of what is happening, the often

unpredictable nature of disease progression, and the associated inability to rely on

one's own bodily integrity all contribute to a sense of loss of control. The goal of the

medical profession should be to restore the ill person to independence and self

49

reliance. By removing the uncertainty associated with public health provision this is

more likely to be achieved.

This forms the basis for one of the primary goals of the NWTP viz 'Certainty'.

(Malpass and Rees 1998) This goal is about letting people know where they stand

with regards to publicly provided services. It can be said that it is an empty goal in

that it is just telling people they definitely won't be getting treatment. (Roberts 1998)

The reality is that some people will not get treatment regardless of the system

adopted. Given this realty it is ethically preferable for the patient to know that they

will not receive it. -

For those who will receive the service there is the further commitment of giving

certainty as to when they will receive it. This creates even more ability for patients to

get on with their lives as best they can.

For those that are not to receive the service there is further consolation in this system.

Because the decision as to who will receive the service is based on explicit criteria

patients will know exactly why they will not receive treatment at this stage. They will

know whether it is a clinical judgement or a financial one. They will thus have

recourse to address both. They may seek a second opinion if it is a clinical judgement

which they don't agree with. If it is a financial decision they know it is result of lack

of funding in that service to meet the needs of that population. Evidence of this gap

will provide the strongest argument for increased funding, stronger than the existence

of the current waiting lists as their validity as a measure of need is very much in

question. (Fraser et al. 1993) This is said to be a hollow consolation but under the

waiting list system the patient still wouldn't get their operation but would be tricked

into thinking they may, this is an unethical state of affairs.

3.3 A MORE USEFUL SYSTEM

This is the third major advantage to the NWTP. It has the capacity to provide robust

and accurate information regarding the level of need in the community which is not

being met by the level of funding provided.

50

The first stage of implementation of the NWTP has involved a detailed review of the

current waiting lists.

This has revealed two things, one is that there is a large amount of unmet need. The

other that the waiting lists were not accurate assessments of that need. (Health

Funding Authority 1998)

There is a concern among those involved with the NWTP that they are being blamed

for the large numbers of people waiting, whereas they are simply revealing data which

would otherwise not be available. This is true. It is too early to blame the NWTP for

those waiting. What the new way of dealing with those patients will show is an

accurate measure of who has got treatment, how ill they were, and who is not getting

treatment and how ill they are.

Even when this data is available it will not be possible to blame the NWTP per se for

non-treatment. All the booking system and CPAC do is show the restrictions imposed

by funding. This data will also be more useful than that which the waiting list seemed

to provide. Rather than adding up the number of people on the waiting list and

multiplying it by the average cost of the operation needed it will be possible to make

much more useful estimates of the resource shortfall.

An example of such an exercise has already been undertaken. At Greenlane hospital in

Auckland there is a CPAC for Coronary Artery Bypass Grafting (CABG). The

clinicians have decided that the clinically desirable intervention score would be 25.

There is only enough funding to sustain a threshold of 35. A study looked at how

many people were scoring between these values and followed them up after 20

months to assess costs in terms of the morbidity caused by the condition, until such a

time as they scored highly enough to "qualify", or died. (Haydock 1999) The results

of such a study could be used to influence further funding decisions to lower the FST

if it can be shown that the costs of leaving those above the Clinically Acceptable

Threshold (CAT) outweigh the costs of the extra interventions. It is also possible to

show how much suffering is endured by those people who miss out on the

intervention for financial reasons. The challenge then is whether we as a community

51

accept imposing this suffering in order to save that amount of money. Thus the case

for increased funding is improved.

This study would not have been possible under the old system. The increased

information is an advantage because in order to spend the health care budget most

wisely decisions must be based wherever possible on sound evidence. This is not the

same as adopting the maximisation policies rejected above (2.1) but using sound

information to make informed decisions.

52

4 RECOMMENDATIONS

Based on the preceding analysis of the NWTP the following recommendations can be

made.

4.1 AVOIDING ETHICAL PIT-FALLS

The primary pitfall that must be avoided in the implementation of the NWTP is the

temptation to use it to follow a maximisation agenda. It was argued at length above,

that any attempts to prioritise according to maximisation of beneficial outcomes

contains not only inherent difficulties but also unacceptable ethical costs. The ability

to prioritise according to maximisation of benefit does not rely simply on further

development of generic tools for assessing patient preferences for health states, it

relies on ignoring fundamental ethical principles such as respect for individuals and

their suffering, and a concern about distribution of resources to where they are needed.

Formulas cannot adequately take account of the variation and complexity of health

care - they can only appear to do so. The decisions made by such methods will have a

false aura of exactness. The pitfall with this agenda is that it will institutionalise unjust

resource allocation.

The major practical issue in the implementation of the NWTP is the perception of

clinicians that it is unethical. Their concern with upholding their duties to their

patients is to be applauded. Section 2.2.4 looked at this in some depth with a particular

focus on exploring what that duty is. The reality of today's health care system is that

not every patient can be treated. Decisions about who will be treated must be made.

The fairest way of doing this is through prioritising according to need. The best

people to make that assessment are the clinicians. They have the medical knowledge

and they know the complexities of the individual case. Many clinicians would claim

that it is unreasonable to expect them to accurately prioritise patients because of the

uncertainty of medicine. The only answer to this is that they already prioritise a good

deal and they are the most likely to be able to do it in a way that approximates to the

ideal. If the clinicians do not prioritise anybody else attempting to do so will be even

53

more inaccurate. Modern ethical literature and recent Medical Council guidelines

realise that many resources are not the clinicians to provide. This must be explained to

the patient through the adoption of a spirit of openness within the doctor-patient

relationship. All this must be accepted by clinicians if another ethical pitfall is to be

avoided. Clinicians must act in good faith in the implementation of the NWTP.

Section 2.2.2.4 examined in depth some misconceptions about where the doctor's duty

lies and what is and is not an appropriate way to act with regards to "gaming" or

cheating the system.

4.2 ACHIEVING ETHICAL GAINS

The goal of the NVTTP to increase equity of access to our health system represents a

clear ethical advantage. To achieve this goal that access must be protected. This was

addressed in section 2.2.5. In this section the concept of a series of filters was

discussed. In order to preserve equity of access and the identification of all need, steps

must be taken to ensure these "filters" are sufficiently sensitive and that they are not

overwhelmed by irresponsible flow levels (or irresponsible funding/capacity).

The ethical advantage of treating in order of priority of need produces a requirement

to assess that need as accurately as possible. In order to ensure equity the means of

assessing need must be constantly refined in order to represent the best estimate that is

clinically possible. Thus CPAC and ACA must be subjected to continued scrutiny and

review so that they continue to represent the best approximation of consensus medical

opinion and be based on the best available evidence.

4.3 ETHICAL REVIEW OF THE NWTP

In the early stages of the development of the NWTP a promise was made to subject

the project to ethical evaluation. The commissioning of this report is the culmination

of informal discussions which have proceeded on this matter to date. As we are still in

Phase One of the development and implementation of the project ethical scrutiny

should not terminate with the production of this report. The report has made it clear

that there are certain development possibilities in Phase Two which might be ethically

54

dubious. The report has also highlighted the need for continued audit of the results of

the implementation of the booking system with a view to revising both the ACAs and

the CPACs in order to protect the interests of needy patients.

The question arises as to how this continued surveillance might best be achieved.There are numbers of possibilities.

First it could be handled in-house by those who operate the system. There are

numerous reasons why this would not be a good idea. Ethical review of clinical

research and practice in New Zealand developed into the rigorous system it has

become largely through reaction to the in-house reviews which went so badly wrong

in the National Womens' Hospital cervical cancer episode. Whilst those designing and

implementing the scheme might intend to adopt the most ethical approach, and

succeed in so doing, the public is entitled to be satisfied that proper review has

occurred. Thus the review should be independent of those responsible for the project.

Those reviewing the scheme should have no vested interest in the scheme save insofar

as they themselves might one day have to submit to its procedures as prospectiverecipients of elective treatments.

Second it could be handled by an individual reviewer with powers to question the

policy makers at a high level. The Health and Disability Commissioner would seem to

be the best candidate for such a role. However, the Commissioner is available to

patients who feel that they have been unjustly treated by the public health system.

Besides the fact that it is beyond the brief of that office to consider resource allocation

in the health service as such, the Commissioner would be placed in an invidiousposition if asked to rule on a policy de novo and then later be called upon to rule onindividual complaints about the injustice of the policy. Further, there is considerable

advantage to be gained from a rounded consideration of the matters in hand which is

informed by a variety of expertise from clinical disciplines, economics, health policy,

ethics and stakeholders, including consumers of services. Thus an ethical reviewcommittee is called for.

55

There are two possible candidates for this role amongst existing committees. One is

the Health Research Council Ethics Committee. However that committee's brief is in

the area of research and the surveillance of health policy does not properly fall under

that description. The other candidate is a Regional Ethics Committee. Such

committees have a wider brief, viz, to review both research and clinical practice. It is

currently beyond the remit of such committees to review resource allocation issues. It

is also arguable that it would be unwise to confuse the review of resource allocation

decisions with clinical matters for reasons cited earlier in the report. In any case such

committees do not currently have quorums which reflect the spread of expertise

recommended above for the independent review of the NWTP.

We therefore recommended that a new committee be set up to continue ethical

surveillance of the development and implementation of the booking system. The

committee would be convened by the HFA but would be as independent of its

working policies as are the Regional Ethics Committees which are also facilitated bythe FIFA.

The proposed model mirrors that of a committee set up to review the spending

programme of a District Health Authority in the United Kingdom some years

ago.(Evans 1994) That committee was given privileged access to all the spending

policies of the purchasing Authority and invited to comment on the ethical dimensions

of the investment and disinvestment plans for the coming year. Its deliberations

resulted in observations to the purchasing body on the ethical challenges created by

the policies in question. The committee did not have any executive authority. The

Authority was free to ignore its findings, or partially or completely embody them in

its policies as it saw fit in the circumstances. The Authority agreed to publish the

committees observations, whether acted upon or not, together with its final spendingprogramme.

The Ethics Committee therefore acted as the conscience of the Authority. Whenever it

considered that the Authority's policies were ethically dubious they would remind the

planners of the issues at stake. The fact that the recommendations of the committee

became public knowledge demanded public accountability from the planners for the

decisions which they ultimately took. As the committee made no recommendations itcould not be used as an imprimatur for difficult and possibly unpopular decisions.Thus the Authority could not disclaim responsibility for its own policies.

An Ethical Review Committee of this sort could both inform the I{FA in its

development of the NWTP and reassure the public that the Authority has been asked

to consider relevant issues before implementing further modifications or persisting

with current arrangements. The Committee would be expected to have an ear forpublic opinion on these matters.

4.4 CONCLUSIONS

The ideal of explicitly rationing health care resources according to urgency of need isethically commendable.

The project of producing unitary tools of needs assessment across services ismisconceived and ethically unsound.

The concept of attempting to maximise benefits and rationing according to capacity tobenefit is not ethically acceptable

Few things in medicine can ever be 100% certain so there will always be grey zones

in the prioritisation process. The NWTP represents an ethically superior alternative to

the waiting lists system, thus despite the continuing level of uncertainty there is aclear obligation to attempt to implement it.

The only way the NWTP can succeed is if all involved act in good faith. Thereforeclinicians must not subvert the system.

There must be a clear distinction between "clinical" and "rationing" decisions. The

FST is a rationing tool and does not define illness or the appropriate clinical level for

intervention; it is a political variable that defines for whom we can afford to intervene.

57

The health needs of the population will only be completely met when the FSTs for all

services match the CATs as defined by the doctors. In order to fulfil their role of

patients' advocates doctors must continue to be involved in a "constructive tension"

with funders to ensure that the ideal state of funding is approximated. This will be

facilitated by the cautious implementation of the NWTP.

58

Abbreviations

ACAAccess Criteria for first [specialist] Assessment

CABGCoronary Artery Bypass Grafting

CATClinically Acceptable Threshold

CPACClinical Priority Assessment Criteria

CTComputerised Tomography

EuroQolA non-disease specific instrument for measuring community values of

healthstates developed in Europe

FSAFirst Specialist Assessment

FSTFinancially Sustainable Threshold

GPGeneral Practitioner

JiFAHealth Funding Authority

RHSHospital Health Service

HMOHealth Maintenance Organisation (US managed care organisations)ICUIntensive Care Unit

NHSNational Health Service (UK public health system)NWTPNational Waiting Times Project

QALYQuality Adjusted Life Year

59

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