Legal and Forensic Medicine || Advance Directives for Medical Decisions

Advance Directives for Medical Decisions 71Fabiana Rego and Mara Cristina de Sousa Freitas

Abstract

This chapter provides an introduction to advance directives. It addresses the

questions: What is an advance directive? What problems does it create? What is

the current discussion about them?

It will consider the different opinions of the authors: should they be binding or

merely indicative? Why?

Once we live in a democratic and plural society, the right to self-

determination and autonomy should be respected, and that is why the authors

agree with their binding effect, if preceded by the fulfillment of some require-

ments which assure certainty and seriousness of intent:

• Areas of concern – what legal and ethical problems do binding advance

directives raise?

• Response – there are many theses regarding this, and there is no direct or

unique answer. There will be a collision of rights, with each one being analyzed

in depth. In many cases, the right to “life” and “autonomy” will be in conflict,

and it is not taken for granted that the “right to life” will always prevail.

• Summary – After introducing the concept of the advance directives, ethical

and legal issues will be raised, and the different points of view are analyzed,

concluding in favor of its binding force, in the name of “personal autonomy

and human dignity.”

F. Rego (*)

Trainee Lawyer, Law Degree and Master Degree in Civil Law – thesis on Advance Directives and

Personality Rights, University of Coimbra, Portugal

e-mail: [email protected]

M. Cristina de Sousa Freitas

Lisboa, Portugal

e-mail: [email protected]

R.G. Beran (ed.), Legal and Forensic Medicine,DOI 10.1007/978-3-642-32338-6_113, # Springer-Verlag Berlin Heidelberg 2013

1217

mailto:[email protected]

mailto:[email protected]

Introduction

On 18 March 2005, the North American Courts finally allowed the withdrawal of

the artificial life-prolonging medical procedures that kept Terri Schiavo alive but in

a vegetative state. That only happened after years of inserting and removing feeding

tubes and various court decisions and appeals, since 1998.

On 9 February 2009, the Italian Court finally allowed the removal of the feeding

tubes from Eluana Englaro, after 17 years in a vegetative state.

These cases could have been prevented if advance directives were regulated.

Should such directives be binding? Advance directives deal with human dignity

and prospective autonomy of the patient, and the doctrine is not consensual: there

are those who want them to have binding force – highlighting the principle of the

autonomy, and those who do not – defending the right to life.

The USA, pioneers on this subject, had already discussed, decided, and regulated

the legal force of advance directives, promoting legal certainty in American society.

In the authors’ opinion, the most important step is to regulate advance directives,

being merely indicative or having binding force, since medical ethics already

establishes that health-care professionals should always respect the patient’s will.

Advance Directives

Medical law is a recent legal field, originating after World War II, when the

atrocities practiced by Nazi doctors became known. Since then, the regulation of

medical practices and experimentation on people had been promoted, as has the

protection of human life and human dignity.

Since 1970, the right to autonomy of the patient, on the process of deciding

whether, or not, to give certain treatment had been highlighted, and people have

started to reject medical paternalism that once was welcomed. Medical and tech-

nological advances have contributed to promote a longer life, perhaps much longer

than what patients want, especially if such treatment leads to a life without quality.

Thus, people have started to feel the need of having advance directives –

instructions given by a capable person, concerning the health care that he/she

wishes to receive, or not, in a future situation of incapacity that makes him/her

unable to express his/her will or take decisions independently. These instructions

may be declared through a written document – the “living will” – or the appoint-

ment of a health-care proxy, who will make health-care decisions on behalf of the

person when he/she is no longer capable of expressing his/her will. In the first case,

decisions are expressed by the patient him/herself; in the latter, decisions are

provided by a third person, who was instructed by the patient to do so, with the

patient either choosing to give him/her wider powers or more restricted powers. In

both cases, self-determination is preferred to paternalist decisions.

The first person referring to advance directives was an American lawyer, Luis

Kutner (vide [1]), in the late 1960s. The USA was the first country protecting the

patient’s autonomy through Natural Death Act, 1976, when California recognized

1218 F. Rego and M. Cristina de Sousa Freitas

the right to refuse the treatment for terminally ill patients. This happened after the

legal battle that Karen Ann Quinlan’s parents – who asked for the suspension of the

artificial treatments, which kept their daughter in a persistent vegetative state

alive – had with the court. Later, in 1991, the Patient Self-Determination Actbecame a law. It informed patients about advance directives and encouraged them

to have same.

Their formal aspects and validity depend on the law of each state. There is a trend

followed by the majority of the countries which agree that advance directives are only

binding in the case of refusal of medical treatment; they should be made by an adult,

over 18 years old; the expressed will should be autonomous and free of any coercive

power; and there should be an informed consent. They should be written in a clear,

never ambiguous, way – otherwise the health-care professional will not be able to

follow the instruction(s). There tends to be a defined period of validity, and it can be

revoked at any time by any means. There is an additional note: if the content of the

advance directive is against the law, public order, or leges artes, if science and

medicine have developed in a way that affects the content of the advance directive, or

if there is concrete and strong proof that the patient, in the meanwhile, changed his/her

will, then the advanced directive will lose its binding force.

Living Wills

Patients can write on their living wills that they allow the administration of

treatment(s) and they also can choose them. In this case, the majority of the countries

tend to consider them as merely indicative, because medicine and technology evolve

day by day, and, at the time of its application, the chosen treatment could be not

recommended or outdated. In this case, patients should be spared from unnecessary

risks and suffering. Health-care professionals have the duty not to prescribe futile

treatments to patients, contrary to their aim of promoting well-being. When there is

no cure, treatment should be directed to assist healing and to celebrate life with

happiness, hope, dignity, and respect for everyone, without discrimination (right to

life), without inhuman treatment (right to personal integrity), and with the same

social dignity and equality (principle of equality) that leads to the right to health

protection and the duty to defend and promote health (right to health) ([2]). If the

treatment is the recommended option, then, it will be applied. There will not be any

obstacle to its administration, because this will not only respect the will of the

patient but also the binding principle of beneficence/non-maleficence.

Patients can also write on their living wills that they refuse the administration of

general or concrete treatments. This can happen for several reasons: because the

patient does not want invasive treatments (such as chemotherapy or skin perfusion),

or he/she does not want to be kept alive by artificial means (such as artificial feeding

or hydration), or he/she does not accept a blood transfusion for religious reasons

(as with Jehovah’s Witnesses).

The greatest ethical and doctrinal problems relate to this refusal living will, on

the grounds that granting these wishes could lead to the patient’s death.

71 Advance Directives for Medical Decisions 1219

Health-Care Proxy

The patient chooses the health-care proxy when he/she still has the capacity to decide

for him/herself, to allow that person to represent him/her when he/she no longer is able

to express his/her will, thus allowing that person to decide and choose on his/her behalf.

This nomination has to be written and has to use clear language. The health-care

proxy has to be a capable adult, and his/her decisions will only be considered when

the patient is incapable to decide. This proxy document can be revoked at any time

by any means by the patient when he/she is still capable. The proxy, nominated

individual(s), can also refuse the nomination at any time.

The patient can give wide powers to the health-care proxy, or he/she can restrict

them. The first option, in some cases, may lead to a court intervention, if there are

doubts on the meaning of the proxy. In case of uncertainty or contradiction, living

wills will always prevail over health-care proxy decisions. The attorney may have

a complementary role on the enlightenment of patient’s expressed wishes. That is

why clear and specific proxies are the best option.

To assure that his/her will is respected, when he/she no longer has capacity to

decide for him/herself, the patient can always have both a written living will and

a health-care proxy. As there are advantages and disadvantages to one and the other,

this can be seen as the best option. Living wills are stagnant and do not follow the

development of a sickness and the medicine science, while health-care proxy will

allow a casuistic and more flexible decision. To seek the presumed will of the patient,

the health-care proxy would be the person who could help the most, since he/she was

chosen by the patient as the person who could understand and express his/her will the

best. Living wills are written by the patient him/herself; it is not a third person’s

decision. For this reason, court intervention is less likely. Health-care proxy tend to

have a merely indicative legal force, while living wills tend to be binding.

Health-care proxy was regulated for the first time in the Uniform Probate Code(UPC) as enduring power of attorney, in 1969. It intended to follow the principle of

the least restrictive alternative, since health-care proxies were one of those alterna-tives. Nowadays, it is regulated in the 50 North American states’ laws and several

countries around the world. In the USA, there are two types of powers of attorney: thedurable power of attorney (DPOA) and the springing durable power of attorney(Springing DPOA). In the first, the attorney has legal powers to act from the moment

the proxy is signed, even if the patient is still capable to make his own choices and

decisions, and after he/she is no longer capable; in the second case, he/she will only

have powers to decide after the incapacitation of the patient (this kind of proxy was

specifically created for this purpose, since in the American legal system, proxies will

only produce their effects while the principal is capable). In health matters, the latter

seems to be the more suitable, because it does not seem justifiable that a third person

makes such an important decision, related to fundamental rights such as life or

individual autonomy, instead of the patient, when he/she is still capable of make

his/hers own options according to his/her conscience, ideas, and values.

Health-care proxy is also regulated in several international Acts. The ninth

principle of the Recommendation of the Council of Europe no. R (99) 4,


on Principles Concerning the Legal Protection of Incapable Adults states that thechoice of any person to represent or to assist [the patient] should be taken intoaccount and, as far as possible, given due respect.

Advance directives are a reliableway to assure the respect for the patient’s will when

he/she is no longer capableof expressing it him/herself.Theycanbeneeded, for instance,

in a case of a patient with several brain diseases or dementia, when the patient is

incapable to decide about the treatments available. There will be a difficult question to

answer: who decides? – the physician or the family? Is it appropriate to ask the family to

pass through such a hard process of decision about the death or life of a relative?What if

there are different opinions of the familymembers?What if the doctor’s opinion and the

family’s opinion are different?Who should beheard?Whoknowswhat is the best for the

patient?All these problemscanbe avoided if thepatient has an advancedirective, since it

is the patient him/herself who expresses his/her will. It is the most direct source of his

presumed will, avoiding third parties’ intervention. Several courts have arrived at the

same conclusion: theKempten case law,Germany, 1993 (Anold ladyhad a strokewhich

caused irreversible brain damage. Her physician and son asked the nurses to stop

artificial nutrition. They refused and accused them of attempted murder. The physician

and son had to produce several witnesses who confirmed that the lady had previously

said that shewould not havewanted to live in those conditions. It was proven, but on the

verdict, the judge stressed out that itwould have been easier if the patient had an advance

directive.) and Re T (Adult Refusal of Treatment [1993] Fam 95 (related to the blood

transfusion to a young lady whose mother was a Jehovah’s Witness: the father and the

boyfriendasked the court to permit transfusion.Since therewasnoadvancedirective, the

court ordered the transfusion. The judge called attention to the fact that any adult could

refuse a treatment, even if it was in advance) (vide [3]).

Common Cases

People can have advance directives for several reasons (refusal or acceptance of

treatments, nonresuscitation orders, organ donation, refusal to be informed), but there

are some that are more common such as situations of persistent vegetative state and

patients who follow the religion of Jehovah’s Witnesses. These are sensitive subjects

and evoke conflict between the right to life and the autonomy of the patient. Should one

accept that a patient in a persistent vegetative state refuses treatments which would

allow him/her to stay alive for several years (albeit in that condition)? Should one

accept that a Jehovah’s Witness refuses a blood transfusion that can save his/her life?

Persistent Vegetative State (PVS)

In countries where advance directives are already regulated, it is common to find

living wills refusing artificial nutrition and hydration in case of PVS. Many patients

express preferring to die, preserving their dignity, even in the last moments of their

lives, than staying for an undefined period in those conditions.


A PVS occurs when, after a coma, a patient still performs certain involuntary

actions on his/her own – such as breathing – but he/she loses his/her cognitive

capacity (vide [4]). The Multi-Society Task Force on Persistent Vegetative State

defined it as “a condition of complete unawareness of the self and the environmentaccompanied by sleep-wake cycles with either complete or partial preservation ofbrain stem and hypothalamic autonomic, functions.” It is a state of wakefulness

without awareness (vide [5]). This statement was approved by the American

Academy of Neurological Surgeons and American Academy of Pediatrics in

1994 and is still the definition commonly adopted. It is explained as being

a “pathological process that has produced widespread damage to cerebral cor-tical neurons, thalamic neurons, or the white matter connections between thecortex and thalamus, but that largely spares brain stem and hypothalamic neu-rons” (vide [6]).

A patient in PVS is still technically alive. Thus, there are people who defend the

sacred value of life, seen as God’s gift, and who do not understand, or accept, any

justification to stop the administration of treatments that keep the person alive.

There is a doctrine that prefers to recognize the value of a life with quality.

Otherwise, one would condone futile and useless therapy, which is not a cure and

which offend human dignity.

There is jurisprudence supporting this second position since 1975. In the

USA, the court allowed the withdrawal of artificial breathing support for

Karen Ann Quinlan, who was 20 years old. These decisions only started to

be more common after the Cruzan law case, in 1990, when the court decided

that the previous will, expressed by the patient in a living will, should be taken

into account and should be respected and the feeding tubes should be with-

drawn. The United Kingdom agreed with these decisions, following them and

promoting the patients’ best interests as per the Bland case, in 1993. There was

a similar case in The Netherlands, in 1990: 26 years after a medical malprac-

tice caused Ineke Stinissen to be in a PVS, 5 years after her husband appealed

to public expressing his and her will to stop life support, and 3 years after

having asked for same in the court, the court allowed the withdrawal of life

supports. After 1990s, many courts decided to respect the patient previously

expressed will.

If treatment is futile, not achieving either benefit for the patient nor its goal, good

medical practice should order its suspension. This depends on a casuistic appreci-

ation, and such decision should be taken only when physicians have the maximum

certainty about the prognosis. Medical experience says that if after a year the patient

does not recover any capacity of conscious expression, it is very hard that he/she

will recover from the PVS.

It does not mean that the patient is left by him/herself, without any health care.

Palliative care should be administrated, to reduce the pain and suffering provoked

by the illness and to try to provide the best well-being as is possible. Palliative care

does not treat the illness, rather the person (vide [7]). World Health Organization

defines Palliative Care as an approach that improves the quality of life of patientsand their families facing the problem associated with life-threatening illness,


through the prevention and relief of suffering by means of early identification andimpeccable assessment and treatment of pain and other problems, physical,psychosocial and spiritual (vide www.who.int/cancer/palliative/definition/en/ ).

There is another problem concerning palliative care: is it treatment and therefore

is it considered within a refusal advance directive?

There are people who think this is so, because someone who is in a PVS already

has a fatal pathology and such treatment, designed to overcome organ failure, can

be seen as “extraordinary means,” and hence withdrawal would be acceptable.

Precisely because PVS has no cure, there are people who defend the contrary,

saying that they constitute basic care rather than treatment and cannot be refused to

anyone. Dying of starvation and thirst can never be considered natural (vide [8]).There is another situation to be considered: sometimes, the administration of

palliative care to relieve pain, in cases of terminal illness, also accelerates death, as

a side effect (doctrine of double effect). It may be accepted, if the nature of the act is

itself good (relieving suffering), if its intent is for good, not bad (aiming to relieve

suffering rather than the death of the patient), and if the good effect outweighs the

bad one with measures taken to minimize the harm.

Good medical practice repudiates futile treatment. It is a deontological duty not

to administer them and to respect human dignity. Patients should not need to

express in their advance directives that they do not want the administration of

such treatment, since it is already condemned by the medicine itself.

Jehovah’s Witnesses

Jehovah’s Witness is a religion which has more than six million believers around

the world (vide http://www.watchtower.org/t/jt/index.htm). They believe in God

and in the Holy Bible in which they find the doctrinal principle that teaches them to

refuse blood transfusions – in Genesis, 9, 4: “But you shall not eat flesh with its life,that is, its blood”; in Deuteronomy, 12, 22–23: “Only be sure that you do not eat theblood, for the blood is the life, and you shall not eat the life with the flesh”; inLeviticus, 17, 10: “If any one of the house of Israel or of the strangers who sojournamong them eats any blood, I will set my face against that person who eats blood andwill cut him off from among his people”; and in Acts of the Apostles, 15, 20: “. . .butshould write to them to abstain from the things polluted by idols, and from sexualimmorality, and from what has been strangled, and from blood.” They refuse any

therapy which implies the direct introduction of blood or blood products into their

circulatory system, even when they are facing a life-threatening emergency. The

biblical law on blood was formally assumed on the 1 July 1945 by the WatchtowerSociety, and it stated that those who did not respect that law would be expelled. Many

Jehovah’sWitnesses found that law offensive of their freedom of choice, and in 2000,

these rules were mitigated such that the transfusion of secondary blood products

(albumin, globulin, interleukins) was allowed. Punishment was also revoked, but it

was considered that if a Witness broke the law on blood, it would mean that he/she

would be auto-excluding him/herself from the Watchtower Society.


www.who.int/cancer/palliative/definition/en/

http://www.watchtower.org/t/jt/index.htm

This touches upon freedom of religion and freedom of choice, and autonomy of

the human person. If a Jehovah’s Witness wants to follow his/her faith and the

principles inherent to it, they should have the right to do it. They exercise their

autonomy on the basis of their religious freedom. If they want to ensure that their

wishes and their beliefs are respected, when they will be incapable of expressing

them, they have the right to previously express their wishes in an advance directive,

refusing any blood transfusion, which should be respected by the health-care

professionals.

This is not a right to die but rather a right to assert a freedom of conscience and of

religion, confirming autonomy. Jehovah’s Witnesses believe in a religion where the

following of certain doctrinal rules and acting according to their faith is more

important than their own life. For them, the spiritual and moral religious values

that rule their lives are superior to their physical body and the body should succumb

before those values. Using the words of Pereira, Andre ([9]) even if for many peoplein the society and for many doctors or lawyers, basing a therapeutic decision ona particular interpretation of the Bible seems absurd, outdated or irrational, ademocratic exercise of (medical) power must accept this possibility.

For these reasons, health-care professionals should respect the patient’s deci-

sion, since he/she was previously informed about his/her clinical situation and

about the consequences of his/her refusal of treatment by a doctor, who should

also ensure that the patient is informed about the changes adopted in 2000 by the

Watchtower Society.There are alternative treatments that allow Jehovah’s Witnesses to survive

without a blood transfusion with some opinions stressing arguments of

a utilitarian and economic nature. These alternative treatments are very expensive,

and it is not fair that all the taxpayers should pay for them. This equates to an issue

of true human rights and principles: the right to health (which, according to the

World Health Organization, is a state of complete physical, mental, and social well-

being and not merely the absence of disease or infirmity – vide Preamble to the

Constitution of theWorldHealthOrganization, 1948), to the freedom of conscience

and of religion, the autonomy, and the human dignity. It is justified to apply here the

principle of the positive discrimination, based on religion, and society should help

respect those values. It is true that resources are scarce and that the health-care

system faces a situation of financial and economic unsustainability which is why the

use of those treatments should consider the limits of human, technological, and

financial resources in the public health system.

Another very sensitive issue, concerning the refusal of blood transfusions for

therapeutic proposes by Jehovah’s Witnesses, is when they are younger than

16 years old. Legally, since they are not adults, their decisions should be made by

their parents, who may refuse blood transfusion, putting the live of their son/

daughter at risk in which may constitute a death sentence. This represents

a decision by a third person deciding in accordance with his/her/their own beliefs

and not necessarily according to the will of the patient.

In most jurisdictions, the patient, under 16 years old, may not have legal capacity

to act or to consent may not have developed his/her religious personality nor the


maturity to make a decision that expresses his/her personal identity, and it cannot be

defined or decided based on the religious beliefs of the parents of the child. The

decision should be taken according to the child’s best interests and not according to

personal ideals or interests of the parents. If the parents keep their decision on the

refusal of blood transfusing and when such decision causes the death of the child,

the health-care professionals should appeal to the court. If the treatment is urgent,

the physician can act, saving the life of the patient, according to the principle of

beneficence.

When the patient is older than 16 but younger than 18, if the patient shows

evidences of having a well-defined personal identity and psychological maturity to

take decisions, based on his/her free and conscientious autonomy, his/her will

should be taken into account.

The Doctrine: Binding or Not Binding?

Opinions differ in what concerns the binding force of advance directives.

There is one main question to discuss: according to Pereira, Andre (vide“Advance Directives. . .”, op.cit.), the pillars of consent and refusal of treatmentdepend traditionally on the following dogmatic structural elements: (1) capacity toconsent (or competence), (2) freedom from any pressure, (3) information, and (4)updated declaration of the will.

Consent, or refusal, may not be recent or updated, and there may be

a considerable time gap between the moment when the advance directive (the

refusal) was enacted and the real time of the situation and the time of the treatment.

Those who refuse the binding force of advance directives state that consent, at

the time of appliance, may not be up to date. The patient may have declared a will in

the past that is no longer his/hers. In case of doubt, the principle of beneficence

or the favor vitae must prevail. The question arises whether the patient would

maintain his/her will if he/she was aware and capable of expressing it. The options

taken, when someone is in good health, may be different from those taken when

people face the real situation. The patient who wrote his/her advance directive,

when he/she was in a different physical and emotional condition, not having yet the

experience of the illness, may be at odds with any decision made once experiencing

the condition which can be crucial for his/her decision.

There may also emerge that situation in that health-care professionals could be

induced into a wrong presumption, in case of, for instance, the patient who has

forgotten to repeal the advance directive or if there was a medical development that

could significantly change the circumstances originally planned (such as new treat-

ments could have been developed, allowing the cure of fatal pathologies). That is

why some authors defend the principle in dubio pro vita, since death would mean the

irreversible loss of the human autonomy. If the physician chooses to preserve life,

then, if the conflict persists, the patient will be able to decide according to his/her

current will (vide [10]). That is why advance directives should only have indicative

value. This idea was expressed by Rehnquist judge, in Cruzan case law


(where parents of a woman in PVS asked to withdraw the artificial life support):

the rule in Missouri State prohibited the withdraw of the artificial life support with

the intent to protect the patients, because in spite of admitting that there could be

a patient who did not want to live and was kept alive, it prevented mistakes in the

opposite direction, which means, it allowed to keep alive, people who really

wanted to live. An error in the latter would be much more serious than in the

former, since if the patient died, the mistake could not be rectified, while in

the first case it could. Ronald Dworkin calls the attention for the interpretation

of the best interests of the patient. The judge assumed that there would not be any

serious damage if the physician kept the person alive against the will that he/she

previous expressed but if he had assumed that keeping that person alive against

his/her will would be extremely offensive to human dignity, his argument would

fail (vide [11]).The arguments of authors who defend the indicative value of advance directives

can easily be discarded, for several reasons. The change of circumstances may be

foreseen by the law, and they would have to be taken in account (most part of the

laws that are in force and those which are being discussed in the national parlia-

ments’ preview that situation. An example of this is Article 25, paragraph (4) Anadvance decision is not applicable to the treatment in question if – (c) there arereasonable grounds for believing that circumstances exist which Patient did notanticipate at the time of the advance decision and which would have affected hisdecision had he anticipated them – Mental Capacity Act, 2005; or article 14,paragraph (1) The physician should not respect the Advance Directive when it isclearly outdated according to therapeutic and medical progresses and it is clearlypresumable that the patient would not wish to maintain that directive – Draft-Lawof Portuguese Socialist Party, no. 413/XI/2.a) In this exceptional case, they might

allow a treatment contrary to the one specified in the advance directives.

Then, it could be changed or repealed at any time.

If there is no evidence that demonstrates that the patient had changed his/her

mind or that there was a change of factual circumstances, no one should presume

that his/her will could have changed. Joining Andre Dias Pereira in his opinion, the

health-care professional should not believe that the state of unconsciousness of the

patient builds a presumption toward the withdrawal of the previously expressed will

(vide ANDRE DIAS PEREIRA, “Advance Directives. . .,” op. cit., 168). It is most

the opposite: to determinate the presumed will of the patient, we must rely on the

statements he/she said before his/her state of incapacity, as they are the most direct

source of his/her will, and not presume precisely the opposite that his/her will is

contrary to what he/she had written. This way, following the previous instructions

of the patient, the activity of the health-care professional will not be illegal, once it

is based on presumed consent (e.g., art. 39 of the Portuguese Criminal Code).

Strictly speaking, the consent to medical interventions will never be updated,

because the expression of the patient’s consent will always be prior to the exact

moment when the scalpel starts to cut. So when should we consider that the consent

is updated? When expressed 2 years ago? 1 h ago? 5 min? The consent must be up

to date, but recentness should be understood as a logical concept and not as


a simple chronological (time-connected) on (vide Comitato Nacionale Per La

Bioetica, Opinion of 18 December 2003 apud ANDRE DIAS PEREIRA, “Advance

Directives. . .”, op.cit., 169).Also the Article 156 paragraph (2) of the Portuguese Criminal Code criminal-

izes the medical interventions that disrespect the previous will expressed by the

patient. If the doctor knows that the patient’s will was to refuse that specific

treatment, it cannot be administrated, in the name of the principle of freedom of

will and autonomy of the patient.

The period of incapacity is still a period of life of the person, and one cannot

understand why someone other than the patient would be allowed to decide how

he/she wants to live it.

Authors also claim the fundamental right to life to justify refusal of the binding

force of advance directives. This right is written down in several national and

international rules, deserving an absolute protection. It means the right not to be

killed, supporting the prohibition of homicide and death penalty and the principle indubio pro vita or the principle of beneficence.

Should there be an obligation to live? The answer is not.

The Portuguese Constitution (as well as constitutions worldwide) recognizes, in

the Article 1, the value of human dignity and does not set up any hierarchy among

the right to life (Art. 24), the right to personal integrity (Art. 25), or other personal

rights (Art. 26). The Convention on Human Rights and Biomedicine clearly estab-

lishes the primacy of the dignity of the human being and the principle of autonomy

(Article 1 and Chapter II), as well as the Universal Declaration on Bioethics andHuman Rights (2005)which sets up the principles of the human dignity and human

rights – “1. Human dignity, human rights and fundamental freedoms are to be fullyrespected. 2. The interests and welfare of the individual should have priority overthe sole interest of science or society” (Art. 3) – and autonomy and individual

responsibility – “The autonomy of persons to make decisions, while taking respon-sibility for those decisions and respecting the autonomy of others, is to be respected.For persons who are not capable of exercising autonomy, special measures are tobe taken to protect their rights and interests” (Art. 5).

There are other fundamental rights, and once there is not any hierarchy, the right

to life should not prevail always above freedom and self-determination. There has

to be a harmonization or a practical balance between them (vide [12]).

Some Ethical Considerations

Citing the words of the fathers of the principles of medical ethics, Beachamp and

Childress ([13]), medical ethics enjoyed a remarkable degree of continuity from thedays of Hippocrates until the middle of the twentieth century.

The specific changes about the autonomy and the development in the biological and

health sciences led to an essential reflection about the conceptions of the moral obliga-

tions of health-care professionals and society, in order to prevent disease and injury and,

at the same time, get together the needs of the vulnerable and injured people.


These authors, to solve the latent conflict between different ethical theories

(utilitarianism, deontology) idealized a set of principles that, in their opinion,

would be the structural pillar of health-care ethics.

Those principles – respect for autonomy, beneficence and non-maleficence,

justice, and vulnerability – do not have a particular hierarchical order ([14]); they

must be interpreted case by case and according to the specific situation of the

patient.

All of these principles involve a conversation about the needs and desires of the

patient or, in the case of justice, members of society and community. The principles

are intended to be a guide in health-care practice.

In the case of autonomy, one is required to determine the wishes of the patient in

order to protect his or her autonomy. This principle was born in the doctrine of

human dignity and fundamental human rights. It represents the exercise of personal

freedom. The word autonomy, derived the Greek autos (“self”) and nomos (“rule,”“governance,” or “law”), originally referred to the self-rule or self-governance of

independent city-states. Autonomy “has since extend to individual has acquiredmeanings as diverse as self-governance, liberty, rights, privacy, individual choice,freedom of will, causing one’s own behavior, and being one’s own person” (videBEACHAMP, Tom and CHILDRESS, James – Principles of Biomedical Ethics,op. cit.).

In the case of beneficence and non-maleficence, one must determine the patient’s

views of what does and, does not, count as “good” to be pursued or “harm” to be

avoided.

In the case of justice, one must follow “due process” in order to determine fair

limits on health care that will be generally accepted (fair distribution of resources in

society – “distributive justice”). Justice is not simply a matter of assuring the

greatest happiness of the greatest number of people, as though the needs of

the majority are paramount. A just and equitable policy must also be sensitive to

the needs of minority and marginalized groups who lack the social power to lobby

for their share of health resources and capacity to get access to them.

Respect for the autonomy of patients changed their position within the clinical

relationship, from a complete dependence to an active participation – patient

empowerment. In these terms, the transition from medical paternalism to autonomy

has brought a new responsibility for health professionals – the duty to share

information and discuss alternatives with the patient who must make the final

decision regarding treatment.

Respect for human dignity means to promote the ability to think, decide, and act.

Advance directives arise as a means of promoting patient autonomy when he/she is

no longer able to express it themself and to protect the individual from the situation

that he/she does not wish for his/her life, or the end of it.

How can the advance directive – binding or not binding – be used as a tool for

dealing with future situations involving illness, in a way that still protects and

guarantee human autonomy and dignity?

The intention is not to suggest that autonomous decisions and self-determination

in medical and nursing contexts are only possible with an advance directive, but it is


important that the option of an advance directive should be available (such as easy

access, help in the process, simple language, correct information about the eventual

situations) for everyone, because it can be very helpful for the participation in the

decision-making process of the health-care professionals in situations of life limit

(respecting the will of the patient and so, contributing to the so-called dignity at the

end of life).

One of the important topics to consider for this reflection is the ethical basis for

the advance directive: one should consider, not only the patient’s right to refuse

medical and possibly also nursing interventions, but also the duties of beneficence

toward the person concerned. Considering the bioethical principles, one must

consider “patient autonomy and beneficence.” Accordingly, the advance directiveis primarily the expression of a right to refuse medical interventions that violatea person’s (physical and psychological) integrity. This right, based on theuncontentious principle of patient autonomy, is to be recognized from an ethicalviewpoint. However, it does not absolve physicians, nurses, and other health-careprofessionals, or relatives or other intimates, from their duties of beneficencetoward the patient. Moreover, the right to refuse treatment is to be distinguishedfrom a right to request medical and nursing interventions.

Continuing, the principle of beneficence is also applicable concerning anotherpoint of view; it means that the physician continues to have responsibility for thetreatment and to take care of patients who lack capacity. The advance directiveserves to “weight” the perspective from which the medical or nursing decision is tobe taken – namely, primarily from the perspective of the patient, whose wishes havebeen formulated in advance.

It is also important to discuss the requirements which must be met, so an advance

directive can act as an instrument for the expression of wishes in advance. The

fundamental requirements for an advance directive, according to the Swiss NationalAdvisory Commission on Biomedical Ethics is the continuity of the person, themental capacity/incapacity, and the power of anticipation. It is said that in ethicalterms, continuity of the person is a necessary condition for the validity of anadvance directive. In other words, the instructions contained in an advance direc-tive may only be carried out if the person affected by its implementation is the sameperson as the author of the directive. It is explained that this requirement mayappear to be trivial. However, with regard to dementia, doubts have been expressedas to whether such continuity is in fact occurring. Progressive dementia may beassociated with strong or radical changes in behavior: for example, people withdementia may be found to be more aggressive or gentle, more cheerful, or anxious.This way, for relatives, they seem to have become a different person.

Capacity is also essential to the validity of an advance directive, so that one

considers that only a person who has mental capacity can draw up a legally validadvance directive, and the directive is only to be used as a basis for decision-making in cases where the person has become incapacitated or cannot express anypreferences owing to loss of consciousness (. . .); incapacity is not to be deducedautomatically from a diagnosis, for example, of dementia. Incapacity always needsto be carefully assessed with reference to a specific situation. It should be written


and filed who carried out the assessment and how it was carried out (i.e., whatcriteria and methods were used).

Concerning the last requirement – the power of anticipation – it is said that

“to draw up an advance directive, people must be able to imagine future illnesses.Only then they will be able to formulate their wishes in advance. It can be assumedthat mental capacity includes the power of anticipation.”

In practice, health-care professionals, occasionally, put into question the valid-

ity of an advance directive because of the following questions/concerns: Whenwriting the advance directive, did the patient actually envisage the clinicalsituation which has now arisen? Were they able to project themselves into andadequately imagine the condition they are now in? And would implementation oftheir prior instructions really reflect their wishes. Maybe we could say that thereis always a gap between the reality and what we imagine and even, what weexperience, so can we talk about a decision with full knowledge of the facts, evenif we are capable to decide? On the other hand, how can we decide abouta hypothetic situation and at the same time about a hypothetic decision that canchange our life to death?

Another key point is the limits to the authority of advance directives. For theSwiss National Advisory Commission on Biomedical Ethics, the starting point forreflections on the limits to the authority of an advance directive is the fact thatconflicting ethical obligations arise in practice. Alongside the obligation to respectthe patient’s right to refuse interventions, there is an ethical obligation to satisfy thebasic needs of the person concerned. (. . .) With this perspective they intend to helpaddress the question of how, from an ethical point of view, can these two obliga-tions be weighed up against each other, or how far the patient’s right to refuseinterventions may legitimately be extended. The overarching goal remains thestrengthening of the autonomy of a person with dementia – by ensuring that theinstructions in an advance directive are either followed or, conversely, corrected(vide [15]).

Conclusion

The active application of the bioethical principles in a real situation is essential

to the legal application of advance directives. There must be always a bridge

between law, ethics/bioethics, and medicine.

That is why one should protect, above all the principle of personal autonomy,

the primacy of the human being. The European Court of Human Rights had

defended that there cannot be any intervention in the private sphere of the person

without his or her consent: the patient must not be manipulated – and that his or

her will, when clearly expressed, must prevail even if it signifies refusal of

treatment: no one can be compelled to undergo a medical treatment against his or

her will.

It is fundamental to say that the informed consent – the principle that

underpins the sector of patients’ rights and bioethics – is the expression of the

individual’s autonomy. For that reason, in end-of-life situations, as long as the

patient can express his or her will, he or she must participate in the decisions that


determine his/her treatment or his/her nontreatment. The right to withdraw

consent is the corollary to the principle of giving consent.

Advance directives evoke the patient’s will and his/her autonomy, thus, his/

her dignity, sense of life, way to die or not live, and that is why they should be

accepted and regulated.

Advance directives can help and contribute to “humanization” of the health-

care system and “humanization” of the health-care practice and essentially, to

help health-care professionals, family, or friends in the decision-making process,

because sometimes it is not easy, in real situations, to make a decision that

involves such a delicate situation with vulnerability of the individual (sometimes

also that of the health-care professional) taking its nadir effect, and, for thesesituations, the law has no appointment, so one has to rely on the technical,

scientific, and human competence of each health-care professional, ensuring the

best health care and best interests previously expressed by the person.

Ready Reckoner

• What is an advance directive? Instructions given by a capable person, concerning the

health care that he/shewishes to receive, or not, in a future situation of incapacity that

makes him/her unable to express his/her will or take decisions independently.

• What is the current discussion about them? Professionals from several fields are

discussing if they should be binding or merely indicative.

• The meaning of the right to self-determination and autonomy in the health-care

practice, concerning advance directives. Patients should be able to make their

own decisions, preceded by an informed consent, which should be binding.

Cross-References

▶Clinical Neuropsychology and the Assessment of Capacity

▶Legal Aspects of End-of-Life Decisions in Neonatology

▶Wills and Estates: Succession Law and Testamentary Capacity

References

1. Maclean A. Advance directives and the rocky waters of anticipatory decision-making. Med-

ical law review. 2008;16(1):1–22. Spring.

2. Moniz H. Legislation on medical law. 1st ed. Coimbra Editora; 2008.

3. English V. The UK experience of living wills and Koch HG. Advance directives in Germany.

In: Autodeterminarsi nonostante. A cura di Roberta Dameno, Guerini e Associati; 2002.

pp. 68–70 and 106–107.

4. Hottois G, Missa JN. Nouvelle encyclopedie de bioethique. De Boeck Universite; 2001. p. 387.

5. The multi-society task force on PVS. Medical aspects of persistent vegetative state. In: The

New England Journal of Medicine. vol. 330, no. 21. 1994. p.1499.


http://dx.doi.org/10.1007/978-3-642-32338-6_100

http://dx.doi.org/10.1007/978-3-642-32338-6_75

http://dx.doi.org/10.1007/978-3-642-32338-6_29

6. James LB. The vegetative state: practical guidelines, medical decision making, and ethical

dilemmas and ethical issues in the persistent vegetative state patient. In: http://www.aan.com.

7. Dantas E. Direito medico. GZ Editora; 2009. p. 214.

8. Ascencao, Ramos JP, in Declaracao, p.1 apud Brito TQ,Mata, PS,Neves JC,Morao H. Direito

penal – parte especial: licoes, estudos e casos. Coimbra Editora; 2007. p. 124.

9. Pereira AD. Advance directives: binding or merely indicative? Incoherence of the Portuguese

national council of ethics for the life sciences and insufficiencies of newly proposed regula-

tion., In: European journal of health law, vol. 16. 2009. p. 165–171.

10. AndradeMC.Consentimento emdireito penalmedico: o consentimento presumido. In: Estudos

jurıdicos de coimbra, coord. Luciano Nascimento Silva, ABDR, Jurua Ed.; 2007. p. 57.

11. Dworkin R. Life’s dominion. Vintage Books, NY; 1994. p. 196–197.

12. Canotilho J. Direito constitucional e teoria da constituicao. Coimbra; 2003. p. 1225.

13. Beachamp T, Childress J. Principles of biomedical ethics. 5th ed. Oxford University press;

2011.

14. Serrao D, Nunes R. Etica em cuidados de saude. Porto Editora; 1998.

15. Brauer S. Swiss national advisory commission on biomedical ethics NEK-CNE: Advance

directives – ethical considerations concerning the new adult protection law, with particular

reference to dementia – Opinion No. 17/2011. Bern; May 2011.

Further Reading

Andorno R. Pessoa substancia ou pessoa consciencia? Um risco para os direitos do homem.

In: Direitos humanos – teorias e praticas, org. Almedina: Paulo Ferreira da Cunha; 2003.

Ascencao J O. Direito e bioetica. In: Revista da ordem dos advogados. Ano 51, Vol. II. Julho 1991.

Beauford I. Patients in a persistent vegetative state: a Dutch perpective. In: New England journal

of medicine. 9 June 2005. p. 2373–2375. www.nejm.org.

Costa J F. O fim da vida e o direito penal. In liber discipulorum para jorge de figueiredo dias.

Coimbra Editora; 2003. P. 759–807.

Cupis A. Diritti della personalita. Dott. A. Giuffre Editore. 1950.

Fagerlin A, Schneider CE. Enough: the failure of the living will. In: Hastings center report. 2004;

34 (2).

Faria MPR. A lei do sangue: ou o conflito entre o respeito pela autonomia da pessoa e a defesa da

vida e da integridade fısica. In: Direito e justica, vol. XII, tomo I. 1998.

Garcia M GFPD. Liberdade de conscieia e liberdade religiosa. In: Direito e Justica, Vol. 11,

Tomo 2. 1997. P. 73–81

Giammarinaro MG. La carta di autodeterminazione: un Aiuto all’exercızio della Professione.

In: Dameno R, editor. Autodeterminarsi nonostante. Guerini e Associati;2002. P. 41–52.

Green DST, Mackenzie CR. Nuances of informed consent: the paradigm of regional anesthesia.

In: HSS J., 3(1). Feb 2007. P. 115–118. Published online: 3 Jan 2007. http://www.ncbi.nlm.nih.

gov/pmc/articles/PMC2504103/.

Gouveia JB. A afirmacao dos direitos fundamentais no estado constitucional Contemporaneo.

In: Direitos humanos: teorias e praticas, org. Almedina: Paulo Ferreira da Cunha; 2003.

Hendriks A. Editorial: wrongful suits? Suing in the name of Terri Schiavo and Kelly Molenaar.

In: European journal of health law. 12, n.� 2, Junho; 2005.Loureiro J. Metafora do vegetal ou metafora do pessoal: consideracoes jurıdicas em torno do

estado vegetativo cronico. In: Cadernos de bioetica. 8. 1994. P. 27–65.

Loureiro J. Saude no fim da vida: entre o amor, o saber e o direito – II – Cuidados., In: Revista

Portuguesa de bioetica, n.� 4. 2008. P. 37–83.Kolarik RC, Arnold RM, Fischer GS, Hanusa BH. Advance care planning: a comparative of values

statements and treatment preferences. In: Journal of General Internal Medicine, 17. 2002.

P. 618–624.


http://www.aan.com

http://www.nejm.org/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2504103/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2504103/

Maclean A. Advance directives, future selves and decision-making. In: Medical Law Review, 14.

Autumn 2006. p. 291–320.

Maclean A. Autonomy, consent and persuasion. In: European Journal of Health Law, 13, n.� 4.

Dec 2006. p. 321–338.

Martins JCAM. A autonomia do doente em contexto de urgencia/emergencia. In: Revista

portuguesa de bioetica, n.� 2. Setembro 2007.

Nunes R. Artigo 4� – obrigacoes profissionais e regras de conduta – olhar o presente, projectar o

futuro. In: Direitos do homem e biomedicina. Instituto de Bioetica, UCP, Universidade

Catolica Editora; 2003. p. 5572.

Nunes R. Humanizacao na doenca terminal. In: Comissoes de etica: das bases teoricas a actividade

quotidiana, coord. Maria do Ceu Patrao Neves, Centro de Estudos de Bioetica/Polo Acores;

1996. p. 131–145.

Oliveira G. O fim da «arte silenciosa». In: Temas de direito da medicina. Coimbra editora;1999.

Oliveira G, Pereira AD. Consentimento informado., Coimbra: Centro de Direito Biomedico;2006.

Orsi L. La difficulta nella comprensione delle volonta. In: Autodeterminarsi nonostante. a cura di

Roberta Dameno, Guerini e Associati;2002. P. 53–57.

Palomero IG. Etica del final de la vida: asistencia al paciente terminal. In: Gomez H, Jose MGC,

Carmen V, editors. Bioetica, perspectivas emergentes y nuevos problemas.Tecnos; 2005.

Pereira AD. O consentimento informado na relacao medico-paciente, estudo de direito civil.

Coimbra Editora;2004.

Rodrigues ACG. Consentimento informado: pedra angular da responsabilidade criminal do

medico. In: Direito da medicina, I. Coimbra Editora;2002.

Rodrigues JV. O consentimento informado para o acto medico no ordenamento jurıdico Portugues

(elementos para o estudo da manifestacao da vontade do paciente). Coimbra Editora;2001.

Santosuosso A. Il consenso informato: questioni di principio e regole specifiche. In: Il consenso

informato, tra giustificazione per medico e diritto del paziente. A cura di Amadeo Santosuosso,

Raffaello Cortina Editore;1996.

Serrao D. Consentimento informado. In: Bioetica, coord. Luıs Archer, Jorge Biscaia e Walter

Osswald, Editorial Verbo; 1996.

Serrao D. Relacoes entre os profissionais de saude e o paciente. In Comissoes de Etica: das bases

teoricas a actividade quotidiana, coord. Maria do Ceu Patrao Neves, Centro de Estudos de

Bioetica/Polo Acores; 1996.


Documents

Legal and Forensic Medicine || Advance Directives for Medical Decisions