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