The Kidney Dialysis Case

Limited Resource: Kidney Dialysis machine

Demand vastly exceeds supply

Purely ‘medical’ criteria are insufficient

Goal is to make good (fair/just) distribution decisions

Simple Case

Illustrates relevant principles/considerations that apply generally in health care allocation

Makes concrete what is ‘hidden’ behind QALY/health economics algorithms

Maximizing Outcomes & Fairness can give us completely different prioritizations.

Can conflict when non-linear relationship between resource/input and desired outcome.

(not a direct more resources in, more benefit out)

Outcome-maximizing demands concentrating resource in most-outcome generating

location, fairness demands either even spread or allocation to the worst off.

True of almost any social policy outcome.

Risk of Systematic Bias

People explicitly & implicitly favor those like themselves.

•Seemingly ‘neutral’ criteria can be strongly biased if unjust background

Quality Adjusted Life Years (QALYS)

A measure of the state of health of a person or group in which the benefits, in terms of

length of life, are adjusted to reflect the quality of life. One QALY is equal to 1 year of life in

perfect health. …calculated by estimating the years of life remaining for a patient following a

particular treatment or intervention and weighting each year with a quality of life score (on

a zero to 1 scale). It is often measured in terms of the person's ability to perform the

activities of daily life, freedom from pain and mental disturbance.

Persad, Wertheimer, Emmanuel

Evaluated 8 allocation principles grouped into 4 categories: treating people equally, favoring

the worst-off, maximizing total benefits, and promoting & rewarding social usefulness.

No 1 principle is sufficient to incorporate all morally relevant considerations.

Individual principles must be combined into a multiprinciple allocation system.

Complete lives system

Health: “Species typical” functioning. Functioning normally for some appropriate reference

class (e.g. a gender specific subgroup) of a species. Health is the absence of significant

pathology

Various socially controllable factors contribute to maintaining normal functioning in a

population and distributing health fairly in it, such as:

•Traditional public health and medical interventions

•Social determinants of health

•Income and wealth

•Education

•Control over life and work.

Technological imperative

Tendency to give the best care that is technically possible even it ifs costs are high

(Fuchs 1968)

The pursuit of the most advanced technology and the

desire to implement it without regard to cost.

Use of these medical technologies becomes: self-propagating, requisite, uncritically

accepted

Health (medical) technology assessment (HTA)

Tool used in public & private sector: systematic evaluation of properties, effects, and/or

impacts of health technology. It is a multidisciplinary process to evaluate the social,

economic, organizational and ethical issues of a health intervention or health technology.

Main purpose of conducting an assessment is to inform a policy decision making.

HTA assesses:

• Technical properties

• Safety

• Efficacy and/or effectiveness

• Economic attributes or impacts (cost comparisons)

• Social, legal, ethical and/or political impacts

Health is still defined by the WHO definition of 1948

“A state of complete physical, mental, and social wellbeing

and not merely the absence of disease, or infirmity.”

Limitations of the WHO definition

1. The word: complete, in “state of complete well-being”

• would leave most of us unhealthy most of the time. And it supports medicalization, as

always something can be found to be treated.

2. The demography of diseases changed since 1948

• ageing with chronic diseases becomes the norm.

• this formulation denies the human’s capacity to cope.

3. This definition is impracticable as ‘complete’ is neither opera8onal nor measurable

Nieuw voorstel:

“Health as the ability to adapt and to self manage, in the face of social, physical and

emotional challenges”

What is enhancement?

Strictly speaking, enhancement includes any activity by which we improve our bodies,

minds, or abilities –things we do to enhance our well-being and our capacities.

Narrower definition of Enhancement

Human enhancement involves boosting our capabilities and overcome the limitations of the

body, beyond the species-typical level or statistically-normal range of function for an

individual

Often compared to therapy: Therapy aims to fix something that has gone wrong, while

enhancement interventions aim to improve t the state of an organism beyond its normal

healthy state.

Some of our basic capacities may be altered through technology:

Nanotechnology (boosted immune system)

Genetic manipulation

Cybernetics

Pharmacological enhancement

Prosthetics/exoskeletons

Mind uploading/computer brain interfaces

Which capacities?

Mood

Memory

Intelligence

Physical capacities

Moral capacities

Emotions

Extension of human lifespan/non-human abilities (night-vision, etc.)

And more

Enhancement vs. Therapy

Current therapies and future enhancements interventions do not always map onto

this distinction easily (e.g. palliative care, fertility treatments, abortion, plastic

surgery, euthanasia)

Unclear how to classify interventions that reduce probability of disease/death (e.g.

vaccination)

capacities vary continuously not only within a population but also within the lifespan

of a single individual.

When we mature, our physical and mental capacities increase; and as we grow old,

they decline

Health and Disease

Why is the reference class needed? Well the question is healthy, compared to who?

Normal in one group can be abnormal in another.

Woman with the average testosterone level of a man=diseased

Man with average level of testosterone for a man=healthy

So we need something more specific than normal for the WHOLE species.

Three viewpoints:

1. Bioconservative position:

Enhancement is acceptable as long as it seeks to treat disease and disability with the goal of

improving deficient function to normal levels.

2. Liberal Position

Enhancement is acceptable, even when it attempts to improve patient functionality over

and above what is normal

3. Transhumanist position:

Enhancement is strongly accepted in the hopes that humans will achieve enhanced intellect,

eliminate suffering, increase physical strength, achieve freedom from disease, etc.

Critics of enhancement argue it will:

a. Alter or destroy human nature

b. That altering human nature is a bad thing

Defenders of enhancement respond:

a. Human nature is a varied concept, is maleable, changing, etc. And it contains good and

bad elements

b. It is not a bad thing to alter or destroy human nature-we might change it for the better!

c. Most of what human beings do with any technology is unnatural in some sense, yet these

uses are accepted as benefits, not harms.

Mood Enhancement: Authenticity & Identity

What matters in life is not simply enjoying pleasant experiences. We also want our

experiences to bear the right sort of relation to reality.

This point is connected to one’s view of happiness & the good life

Positional Goods: goods whose value to those who have them depends upon others not

having them.

Deep Brain Stimulation

Deep brain stimulation (DBS) involves implanting electrodes within certain areas the brain.

Electrodes produce electrical impulses that regulate abnormal impulses/ the electrical

impulses can affect certain cells and chemicals within the brain.

Amount of stimulation in deep brain stimulation is controlled by a pacemaker-like device

placed under the skin in patient’s chest.

Wire that travels under the skin connects this device to the electrodes in the brain

What is it used for?

Essential tremor

Parkinson's disease

Dystonia

Epilepsy

Tourette syndrome

Chronic pain

Obsessive compulsive disorder

DBS is also being studied as an experimental treatment for major depression, stroke

recovery, addiction and dementia.

Personality Change & Authenticity

1. Yves Agid described that up to 65% of the married (or living with a partner) PD

patients experienced a conjugal crisis after the operation. Different reasons could be

found for this, but personality changes could clearly play a role (Agid2006).

2. Increased Impulsivity (hypersexuality, compulsive eating, and pathological gambling)

3. Key to note that personality changes were likely already taking place as a

consequence of the disease state.

An intervention like DBS that seems to majorly improve QoL on one dimension (like

reduction of PD tremors or symptoms of severe OCD) can potentially decrease QoL in other

areas, both for the person getting the treatment and for those around him or her.

This treatment improves QoL along different dimensions for different people ands they

value these changes or disvalue them to different extents.

Sometimes the impact of the intervention is so strong that people experience it as changing

their ability to control their lives or truly live as themselves.

QoLValue Conflicts: Privacy and Security, Surveillance Technologies Privacy violations Come in multiple forms:

Deepest secrets shared—things you’ve done you’re ashamed of, crimes committed, health conditions.

Being watched, when vulnerable, without your knowledge.

Blackmail—the threat to release info etc to certain people.

Government possessing certain information

Information that could be used to harm you. What is a privacy violation? In general, privacy violations at the core: when information about a person is shared with people that the person would not want the info shared with. People who possess, collect, process, and use information about you: • Family members—parents, children, siblings • Friends • Neighbors • Employer • Government • Retailers • Service providers • Health care providers • Insurers • Other institutions—universities Reasonable expectation of privacy

Meant as guide to contexts where your information has special protections.

Used to be interpreted as: expectation of privacy within home; none outside home.

But then interpreted as:Sometimes extending outside the home (e.g. to phonebooth)

And also reduced right to privacy within the home (e.g. helicopter observing marijuana plants)

No longer so useful—technology changes our expectations of privacy, we expect certain privacies outside home and have lost some inside home (e.g. internet monitoring). Foreseen and unforeseen privacy harms Foreseen:

Electronic medical records

Centralizing info, making access easier.

Computerized face recognition

Technology to read and record license plates Unforeseen:

Credit card usage, mobile phone location info. Information used in unexpected ways.

Tax returns, oyster card Electronic Medical Records in NL

Problems:

Centralized access means more attractive to criminals

Any health care provider with access to system could access any patient records (or last five visits)

Encryption quality criticized Advantages

Easier to access more data

Easier for more people to access data

Potentially: easier to restrict data to particular people?

Can make data available for limited time

Easier to make only certain data available

Can track who accesses what data

Solove: privacy problems can be produced by

“Information processing” and exclusion—someone (the government, the health system) having more info about you and what’s going, and control over than info, than you have. You can’t fix errors in the data; you can’t predict who knows what, you can’t influence how the data is used.

Aggregation—how can the info be combined with other info in a way that might be harmful

Distortion—how can just some of the info—“only part of the story”—pose a harm?

The potential for secondary use—national ID cards.

Just the knowledge of surveillance. Inhibition of activities: movement, speech, purchases, socializing, friendships

How much do people really care about privacy? Sceptic: Not much. People say they care. Then choose convenience over privacy Privacy advocates respond: People don’t really have a choice. People don’t know what is being done with data. People don’t fully realize consequences of sharing data So, despite sceptics, privacy is likely to be a value that people take seriously, into the future. Value tensions / conflicts: Value tensions occur when supporting one value in a technology challenges another value. They can occur within a single individual, between an individual and a group, or across different groups. Resolving value conflicts

Sometimes we willingly give up access to information:

To government (police, FBI), in exchange for security

To government (income info), in exchange for services that support our well-being Welfare, social security

To health organizations in exchange for services that support our well-being

We consent to giving access to information to certain people for certain uses.

Transitions in healthcare & food systems

1. The discussion with regard to a new definition of health is an inextricable part of the current transition in the healthcare system

2. Transition of the healthcare system is closely related to developments in medicine and medical technology and in hygiene and sanitation, but also to changes within the food system

3. Stakeholders do not only feel the consequences of transitions in socio-technical systems but also can be active in changing socio-technical systems

4. Stakeholders that are part of the existing socio-technical system differ in their role and possible transformative actions with those involved in experiments (niches)

Multi-Level Perspective (MLP) Landscape: long-term developments, trends and major crises Regimes: mainstream, established / dominant practices, structures and cultures Niches: innovations or radically new practices, ideas or organizing principles

Transitions:

Transformation processes in which society changes in a fundamental way over a generation or more

Radical shifts from one system to another Transition s-curve:

Transitions happen when:

There is sufficient pressure from the landscape

Regimes become unstable and open for change

Niche-innovations are sufficiently developed

What is Transition Management?

A practical approach to guide transitions towards sustainability

Aimed at mobilizing different people, organisations and networks for sustainable system innovation

Characteristics of a transition:

Radicalshift (fromonesystem toanother)

Long-term process(20-50 years)

High levels of complexity and uncertainty

Multi-actor (science, policy, firms, ngo’s, users, etc.)

Transition Management: characteristics

Combining a long-term vision with short-term objectives

Thinking in terms of: •Multi-domain (e.g. within the healthcare sector) •Multi-actor(science, industry, ngo’s, users, etc.) •Multi-level(niches, regimes, landscape)

Learning-by-doing and doing-by-learning

Aiming for system optimization and system innovation

Keeping a large number of options open Transition management: 4 main aspects of approach

Develop a guiding vision of a sustainable future

Build up a long-term “transition agenda” (including shared objectives and transition paths)

Create space for experimenting and learning(in ‘niches’, pilot projects or ‘transition experiments’)

Facilitate reflection(“are we still doing the right things?”)

Ongoing transition in Dutch healthcare

Neighbourhood Care

“Buurtzorg” is an innovative approach to homecare

Founded in 2006 by a former community nurse, now 800 independent teams with 9000 nurses

Agitated against the bureaucratic way Dutch homecare was (is) organised

Developed the “Self-Managed Team” approach

Scaled up from successful ‘transition experiment’ to mainstream model in long-term care

Conceptual framework to study processes & strategies for ‘scaling-up’

Deepening: learning about new practices, structure and culture within a specific context (niche-development)

Broadening: repeating and connecting radically new practices, structure and culture in different contexts (linking different niches)

Scaling-up: embedding in dominant practices, structure and culture at the level of a societal system; influencing the regime or mainstream (societal embedding)

Deepening: Learning and experimenting activities of Buurtzorg

Starting with a societal challenge: better healthcare, lower costs

Demonstrating societal costs & benefits with Societal Business Case Broadening: Repeating and connecting activities of Buurzorg

Translation to other healthcare domains (e.g. mental healthcare, welfare, youth care, maternity care)

International expansion of Buurtzorg Scaling-up: Societal embedding activities of Buurtzorg

Influencing different elements of the healthcare system: national policy, education, starting a new healthcare insurance, etc

Food & health It is difficult to isolate the impact of food intake from other factors (e.g. physical

exercise, drinking, smoking habits)

Scientific progress in nutrition research leads to more nuanced conclusions Health enhancing measures are difficult due to the complicated relationship between food & health

Role of government in health enhancing policy is mostly indirect

Decreasing trust in science and experts from the 1970s onwards complicated health enhancing policy

Relation between food consumption and health not straightforward:

Difficult to isolate the impact of food intake from other factors (e.g. physical exercise, drinking, smoking habits)

Scientific progress in nutrition research leads to more nuanced conclusions This complicates health enhancing measures