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


    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


    M. Cristina de Sousa Freitas

    Lisboa, Portugal


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


  • 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 patients 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 thepatients 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 Quinlans 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 andmedicine 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 Jehovahs Witnesses).

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

    the grounds that granting these wishes could lead to the patients 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 patients 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 persons

    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 ofthe 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,

    1220 F. Rego and M. Cristina de Sousa Freitas

  • 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 patients 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 doctors opinion and the

    familys 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 strokewhichcaused 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 bloodtransfusion to a young lady whose mother was a Jehovahs 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 Jehovahs 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 Jehovahs 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.

    71 Advance Directives for Medical Decisions 1221

  • A PVS occurs when, after a coma,...


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