CHAPTER 116
Ethical Issues in Geriatric
­Medicine
In one sense there are no ethical issues or principles that are
specific to geriatric medicine. Our moral status as persons do
not change when we grow old and the old are due the same
measure of respect and attention as the young.1 The clinical
situations in which ethical issues arise are also in most cases
very similar to clinical situations that may arise in other areas
of medical practice.
In another sense there are specific ethical issues in geri-
atric medicine caused by (1) a stereotypic social image in
many Western societies of the elderly and old as less com-
petent and less worthy of attention than the young, (2) the
tendency in many health care systems to underfund geriat-
ric medicine in comparison to other specialties, and (3) the
complex interface between health care and social services
for the old.
This chapter will briefly review some core general ele-
ments of medical ethics as they relate to geriatric medicine
before considering some of the ethical problems that occur
frequently in geriatric medicine, including decision making
for incompetent patients, advanced decision making and the
use of health care proxies, research involving the incompe-
tent, and end of life issues. The final section will be con-
cerned with resource allocation and the health care claims of
the elderly and old.
Respect for autonomy
The cornerstone of clinical medical ethics is respect for
autonomy or self-determination.2 Competent patients who
are informed about the available treatment options can
decide which of the treatment options they prefer and can
also decide not to have any treatment at all. It is generally
accepted both in ethics and in law that competent patients
can refuse treatment even if that treatment is simple and life
saving.
The main reason that we ought to respect autonomy in
health care is that the life the decisions are about is the life
of the patient and he or she has a right to be able to shape
that life according to his or her own values and ideas about
the good life.
In most health care systems, respect for autonomy is insti-
tutionalized in clinical practice through a requirement for
valid, informed consent for diagnostic and therapeutic pro-
cedures. And in research ethics, there is even stronger pro-
tection of autonomy through much more explicit informed
consent requirements.
But respect for autonomy entails more than just respecting
the decisions people make, it also entails respecting them
as the primary decision makers in relation to their own life.
This means first that patients have to be involved in decision-
making processes at a point where there is real choice and
before a default decision has been established by fait à com-
pli; second that they should not be forced to make decisions
before they are ready to make them; and third that patients
have to be given the information that they require to make
Søren Holm
a decision, not only the information that I as a health care
professional think is relevant.
Taking patients seriously as decision makers may therefore
have implications for the way decision-making processes are
designed and structured at the ward or department level to
ensure that patients are involved at the right time and that
there is time enough for them to be properly informed.
In a broader perspective, respect for self-determination
also creates an obligation to promote people’s abilities to
make decisions by promoting their autonomy. If there is
something we can do which will enable a person to make
autonomous decisions we should do it. This may include
clinically relatively trivial interventions (e.g., rehydrating
a dehydrated and confused patient), but may also include
patient education or the use of modern patient decision
­support programs.
Two common misunderstandings of what respect for
self-determination means need to be mentioned. The first
misunderstanding is that respect for autonomy entails that
patients have to make all decisions themselves and that they
cannot delegate decision making to other people. But del-
egating decision making is a perfectly autonomous thing
to do! We all do it on a regular basis. And there is nothing
ethically problematic in a patient asking a doctor to make
the decision if that patient trusts that the doctor is able to
make a better decision. Forcing patients to make decisions
they do not want to make is not respecting the patient’s self-­
determination.
The other common misconception is that you respect
people’s autonomy by giving them what they want and that
this means that if you want something, for instance a spe-
cific treatment, I have a moral obligation to help you get it.
But respect for autonomy only, strictly speaking, implies a
negative duty of noninterference. Any positive duty to help
cannot be derived from respect for self-determination, it has
to be justified differently, for instance through some account
of the professional obligations that flow from an established
doctor-patient relationship.
Paternalism
Paternalism is the term used for actions we take or decisions
we make for another person with the intention of benefiting
that person. The word is derived from the Latin word for
father and the idea is that a paternalist decision is like the
decision a good father makes for his child. It is important to
note that an action can only count as paternalist if it is done
to benefit the other person. Actions chosen and performed
to benefit the doctor, the health care system, or with mixed
intentions are not paternalistic, but simply coercive.
Paternalistic decision making is not problematic if the per-
son in question is incompetent (see latter discussion). This
situation is sometimes referred to as genuine paternalism.
Paternalistic decision making is, however, problematic if
the person is competent and wants to make his or her own
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984 Section III  /  Problem-Based Geriatric Medicine
decisions. In that case the paternalistic action overrides the
autonomy of the person. Paternalistic decision making can
be justified in emergency situations where there is no time
to consult the patient and it can sometimes be justified in a
public health context, but it is rarely, if ever justified in non-
emergency interactions with individual patients.
An increasingly common form of paternalism is what can
be called informational paternalism. Informational paternal-
ism occurs when patient have clearly signaled that they do not
want some piece of information about their condition (e.g., do
not want to know the precise prognosis) but where they are
given information nevertheless because the health care team
thinks that it is… “best for them to know…” This is sometimes
supported by the claim that health care professionals have a
duty to tell the truth to their patients. But it does not follow
from that duty, which is essentially a duty not to lie or to tell
the truth if asked, that there is a duty to impress the truth on
people who do not want to hear it. This is easily seen if we
consider a parallel example: Every one of us have a duty to tell
the truth to our friends but this does not generate an obliga-
tion to provide unsolicited evaluations of their dress sense or
latest hair cut, even if those evaluations are the gospel truth!
Dignity
In the context of geriatric medicine, respecting and preserv-
ing the dignity of patients is the second ethical consider­
ation that takes center stage. Respect for autonomy and
for the decisions of a person can be seen as part of preserv-
ing and respecting the dignity of that person, but dignity
is a complex concept that is not exhausted by respect for
­self-determination.3
To treat someone in a dignified manner is to treat them in
a way that recognizes that they are a complete person with
personal integrity and worth and a protected zone of privacy.
Exactly what this means will vary from culture to culture and
from time period to time period. But everyone within a cul-
ture will be able to identify a core set of behaviors that count
as undignified and disrespectful behavior. This is also an area
where research focusing on the experiences of patients can
play a role in making it clearer when they experience care as
impinging on their dignity. It should come as no surprise that
many old people think it is undignified if they are shabbily
dressed or if they are exposed naked or half naked to the
gaze of others.3
In this context it is important to remember that some of
the largest problems in relation to the protection of dignity
are brought about by the numerous small routine violations
of dignity that may erode both a person’s sense of personal
worth and the staff’s sense of what is right and proper.
Although the actions are done by individual health care
professionals, the solution to this kind of problem is often
organizational.
The incompetent patient
Not all patients are competent to make decisions about
health care matters. Patients may become temporarily
incompetent during an acute illness episode or they may
become permanently incompetent (e.g., in the later stages
of dementia). But health care and other decisions still have to
be made even when the patient cannot make them himself.
The concept of incompetence initially seems to be
straightforward. The normal adult is the paradigm case of
an individual who is competent to make decisions, and that
competence is lost if the person becomes unconscious, is
very inebriated, or develops late stage Alzheimer’s disease
where almost all memory and most reasoning capacities are
gone. Between the extremes of full competence and com-
plete incompetence there is, however, a very wide range
of situations where a person is either partially competent
(i.e., competent to make certain decisions but not others),
or where a person’s competence is questionable. This grey
area is created by two complicating factors (1) competence
is always competence to make a specific decision and (2)
we do not have a good account of exactly what it takes to
be competent and how far you can deviate from the norm
before you become incompetent.
That competence is always the competence to make a spe-
cific decision is very obvious in the case of children. It is not
the case that one day they are completely incompetent to
make decisions, and the next day they become fully com-
petent. Even a 3-year-old is competent to decide which ice
cream he or she wants when given the choice on a warm day
at the beach. In the same way, someone with dementia may
be incompetent to make decisions about his or her treat-
ment, without being incompetent to make decisions about
what to eat for dinner, or when to get up in the morning.
The second complicating factor in decisions about com-
petence is that it is unclear how rational and how informed
a decision has to be to count as competent. Most of the
decisions the people make do not conform to strict rules of
rationality and are performed in a situation of at least partial
ignorance. Just think of the ways most of us decide on quite
important things such as applying to medical school, buying
a house, marrying, or starting to save for a pension. We do
not seek all the information that we could have sought and
we do not always think carefully through all the options.
This means that unless we want to rule most decision mak-
ing to be incompetent, and therefore possibly open to being
overruled by others, we have to have a less stringent stan-
dard of competent decision making than full rationality and
complete information.
We could try to say that what matters is not how the deci-
sion was made, but its content (i.e., what decision that was
made). But this is a problematic argument since we gener-
ally allow people to make foolish choices, even about very
important things. That a decision is not one that I would
have made does not eo ipse make it an incompetent decision.
Here it is important to note that questions about incom-
petence are often only raised when our patients make deci-
sions that we do not agree with. This is in itself problematic.
There are probably as many patients who make decisions
that we do agree with, but where we could have challenged
their competence to make these decisions.
Decision making for the incompetent
In a situation where one person has to make important
decisions for another, often called proxy decision making,
there are in principle two different ways in which such a
decision can be made. These are commonly referred to as
the “substituted judgment standard” and the “best interest
standard.”4
 Chapter 116  /  Ethical Issues in Geriatric Medicine
According to the substituted judgment standard, the task
of the decision maker is to try to make the decision the
incompetent person would have made, if competent. This
might involve empathic identification with the patient to
discern what the patient would have decided. The problem
with this standard for proxy decision making is that it is
not obvious which of the incompetent person’s characteris-
tics that should play a role. Should I for instance make rash
decisions for a patient who all his life was a rash decision
maker or should I take account of a patient’s needle phobia?
Because of these problems the substituted judgment standard
has fallen out of favor.
The best interest standard specifies the task of the proxy
decision maker as making the decision that is in the patient’s
best interest (i.e., the decision that is most likely to benefit
the patient). This is the standard that is accepted in most
jurisdictions for legal decision making for the incompetent.
The conception of best interest that is at play here is quite
wide. A patient’s best interest is not confined to his “medical
best interest” (e.g., which treatment that is medically opti-
mal), it also encompasses social issues, etc. It is furthermore
generally accepted that what is in a patient’s best interest is
at least partly determined by the patient’s prior values and
life goals. If understood in this broad way and drawing on
knowledge about the patient’s values decision making guided
by best interest will often come close to decision making
guided by substituted judgment.
The term “best interest” seems to imply that there is one
and only one decision and course of action that will promote
the patient’s best interest and that our task is to find that
course of action. But this view rests on a mistake. There are
many situations where we will be unable to decide which
course of action will benefit the patient most because of
uncertainties about the clinical situation and/or uncertain-
ties about the patient’s values.5 We are often able to iden-
tify some decisions that are clearly not in the patient’s best
interest without being able to specify one of the remaining
options as the one that clearly serves his or her interest the
most.
Advanced decision making
Many jurisdictions now allow people to make legally valid
advance decisions about health care that come into force if
and when the person becomes incompetent. This can either
be in the form of advance directives or in the form of the
appointment of a designated proxy decision maker or a
­combination of the two.
Advance directives allow a person to specify what treat-
ment he or she wants or does not want in specific future cir-
cumstances and are most useful for persons who suffer from
a disease process with at least a somewhat predictable future
course. In that situation it is also possible to help patients
to clarify their wishes for future treatment by outlining the
range of likely scenarios.
Advance directives formulated in more general terms such
as “If I become unable to take care of myself, I do not want…”
will always require a considerable amount of interpretation
to decide whether they apply to the situation at hand and
whether they should still be considered valid.
The problems in writing sufficiently specific advance
directives have led to a move toward combining advance
985
directives with the appointment of a designated proxy deci-
sion maker.
The task of the designated proxy is to make decisions on
behalf of the patient when the patient is no longer compe-
tent to make those decisions. These decisions have to be
made in the best interest of the patient (see previous discus-
sion concerning “best interest”), just as decisions for patients
who do not have a designated proxy. But the advantage of
having a proxy is that patients can appoint someone who
knows them and their values and preferences well and who
is therefore more likely to evaluate best interest in the same
way as the patient.
In jurisdictions where it is possible to designate a proxy
it is usually the case that health care professionals can only
override the proxy’s decisions if they can show that they are
clearly not in the patient’s best interest.
The role of the family in decision making
In most Western countries family members have no formal
role in decision making qua family members. There may be
a requirement to consult them before decisions are made
concerning an incompetent patient but there is usually no
legal requirement to follow their advice unless they are the
patient’s legally designated proxy decision maker.
In reality families do justifiably play a larger role in deci-
sion making in many circumstances. Many competent
patients want to involve their family members in the deci-
sions and some may want to leave decisions to the family or
some specific relative.
In relation to incompetent patient families often have a
better understanding of the patient’s value system than the
health care team has and it is furthermore often the family
that has to care for the patient outside of the health care
context. This means that it will almost always be appropriate
to consult the family before important decisions are made
about incompetent patients. But it is also important to realize
the interests of the patient and the family can be entangled
in complicated ways that may make it difficult for family
members to see clearly what is best for the patient. There
may also be conflicting views among family members as to
what should be done.
Research and incompetent persons
The traditional research ethics problem discussed in con-
nection with dementia research is the problem of research
involving persons who are incapable of giving valid
informed consent. This problem has been extensively ana-
lyzed and at the regulatory level of research ethics a con-
sensus has developed on the requirements that have to be
fulfilled for such research to be deemed ethically acceptable.
These requirements are: (1) consent must be sought from
the person’s representative (proxy); (2) if the person is able
to assent or dissent, although unable to consent, the per-
son’s assent must be obtained; (3) the research must either
be directly beneficial to the person, or it must be beneficial
to the patient group to which the person belongs, and it
must be impossible to perform the research in a group of
patients who can consent; and (4) the risk to the person
must be minimal in those circumstances where there is no
direct benefit.
986 Section III  /  Problem-Based Geriatric Medicine
This consensus is, for instance expressed in paragraphs 27
to 29 of the most recent revision of the Helsinki Declaration
from the World Medical Association.6
The restriction on types of research that an incompetent
person can be included in can be justified in three different
ways:
The first line of argument is based on the historical fact
that vulnerable groups have often been used in ethically
problematic research and that if the incompetent could be
used as research participants in ordinary projects there is
a risk that they would become an easy source of research
material.
The second focuses on the intersection of interests between
the person with a specific condition and the group of suffer-
ers with that condition. The argument is that even if a per-
son does not realize a personal benefit from the research, he
is benefited indirectly through the benefits accruing to the
group.
The third possible justification is the pragmatic one that
unless we allow some kinds of research without consent into
conditions where all sufferers are incompetent, very little
progress will be made in the treatment of such conditions
(the “golden ghetto” argument), but such research should be
limited to those projects that cannot be performed in any
other way to minimize the infringements caused by research
without consent.
End of life issues
Three types of end of life issues are currently under dis-
cussion in medical ethics: (1) withdrawing and withhold-
ing treatment, (2) physician assisted suicide, and (3) active
euthanasia.
There is no doubt that a doctor can withdraw or withhold
any treatment if either (1) a competent patient refuses the
treatment or (2) the treatment is futile (i.e., cannot benefit
the patient). But there are still three open questions in rela-
tion to withdrawing and withholding:
• Is there a moral difference between withdrawing and
withholding?
• What about treatments that are not completely futile, or
not futile from all points of view?
• Is the provision of nutrition and hydration treatment?
Doctors often feel that there is a difference between with-
drawing and withholding a given treatment. It feels more
difficult to stop a treatment that is going on than it feels not
to start a treatment. But it is very difficult to find any good
justification for this feeling. The consequences of stopping
and not starting are often the same (e.g., think of stopping
and not starting respiratory support in a patient who needs
it). And the reasons for the decision are almost always also
very similar (e.g., it is not in the patient’s best interest to
continue/initiate this treatment). This has meant that there
is a growing consensus that despite the phenomenological
difference (i.e., the difference in how it feels), there is no
real ethical difference between decisions to withdraw and
decisions to withhold.
When thinking of withdrawing or withholding a treat-
ment from a patient it is not difficult to reach a decision if
the treatment in question is completely futile, if it has no
chance of benefiting the patient in any way. But there are
many situations where the treatment is not completely futile.
It may have some small chance of being successful, or it may
be likely to prolong the patient’s life but raise the subse-
quent question of whether this longer life is worth having
seen from the point of view of the patient. A typical situa-
tion where these issues arise is when contemplating cardio-
pulmonary resuscitation and the appropriateness of a do not
resuscitate decision. If the patient is competent, all of this
can be discussed with the patient and the patient can decide.
But in the case of the noncompetent patient, others must
decide what is in the best interest of the patient. It is not
possible to give a percentage figure for when a treatment can
be regarded as futile but it is generally agreed that a mere
theoretical chance that something will work does not make
it a worthwhile treatment.
The final controversial issue in relation to withdrawing
and withholding is whether nutrition and hydration or “food
and water” should be defined as treatment or as basic humane
care that can never be withdrawn or withheld? Part of this
controversy has been a discussion of whether withdrawal of
nutrition and hydration leads to suffering and whether such
suffering (e.g., thirst) can be relieved, but this discussion is in
some sense a red herring. The real core issue in the contro-
versy is not suffering but whether it can ever be justified not
to provide this basic level of care. Legally the position is now
settled in many jurisdictions by explicit legal judgments that
it is acceptable to withdraw nutrition and hydration, but the
ethical discussion is still not over, partly because it involves the
thorny question of whether it is ever better for a person to be
dead than alive. This links the withdrawing/withholding issue
to the discussion of physician-assisted suicide and euthanasia.
Physician-assisted suicide and euthanasia
Physician-assisted suicide (PAS) is the situation where a
doctor provides a patient with the means to commit suicide
(e.g., by issuing a prescription for a lethal combination of
drugs), but the patient performs the physical act of actually
taking the drugs.
Active euthanasia is the situation where a doctor actively
ends the life of a patient (e.g., by injecting a lethal combi-
nation of drugs). In relation to active euthanasia, it is pos-
sible to distinguish between voluntary euthanasia where the
patient has requested euthanasia, nonvoluntary euthanasia
where the patient is incompetent and nothing is known
about his or her wishes, and involuntary euthanasia where
a patient is killed against his or her will. Involuntary eutha-
nasia is murder and nonvoluntary euthanasia raises a host of
complex ethical and legal problems so the discussion about
euthanasia is usually focused on whether or not voluntary
active euthanasia should be legalized.
Physician-assisted suicide and/or voluntary active eutha-
nasia has been legalized in a few countries. PAS is legal in
Switzerland, the Netherlands. and the U.S. state of Oregon
and active euthanasia is legal in the Netherlands and Bel-
gium. In all cases, except in Switzerland, there are extensive
procedural safeguards in place to try to ensure that the deci-
sion to ask for PAS or euthanasia is well considered and fully
voluntary.
The ethical justification of PAS and/or euthanasia pro-
ceeds along two dimensions. The first line of justification
 Chapter 116  /  Ethical Issues in Geriatric Medicine
relies on respect for autonomy. If people have a strong inter-
est in leading their life according to their own values, then it
is plausible that they also have a strong interest in how that
life ends and that their choices should be respected. A hypo-
thetical example which is often discussed in this line of argu-
ment is the successful academic with the first symptoms of
Alzheimer disease who does not want his life to end in severe
dementia and who claims that such an end would make a
mockery of his life’s achievements and would furthermore be
undignified. Proponents of this line of argument often claim
that it is the individual person who has to decide whether
he would be better off dead and that only he can make that
evaluation.
The second line of justification focuses on suffering and
is based on the claim that if a person is in great pain, has
breathing difficulties, or severe psychological suffering and
there is no way to relieve the suffering then PAS or euthana-
sia may be justified to end the suffering.
The two lines of justification come together in the core
cases of severe irremediable suffering in a person with termi-
nal illness who wants the suffering to end.
The opposition towards legalizing PAS and/or euthanasia
may either be opposition to the two practices as such, for
instance based on the view that suicide or killing is never
right, or it may be opposition to the legalization of the prac-
tices. It is quite common for people to agree that there are
specific cases where active voluntary euthanasia is justified,
but still argue that it should not be legalized.
The arguments against legalization are primarily of two
kinds. One line of argument claims that it is important that
the law symbolically upholds the view that taking the life
of another human being is always wrong. The second line
of argument is worried about slippery slopes and a gradual
expansion from core cases to less core cases. Here the argu-
ment is that even if we write a law that only allows PAS or
euthanasia for people with terminal illness and irremedi-
able suffering who wish to die, then we will over time also
allow euthanasia in cases where the voluntary element is
less clear or in cases where the suffering is not present but
merely predicted for the future. Some also worry that we
will allow euthanasia in situations where the decision is for-
mally voluntary but based on motivations that are perceived
as problematic (e.g., if a patient wants euthanasia not to
be a burden to family or an economic drain on the health
care system). Would it not be better if these problems were
solved in another way for instance by appropriate allocation
of resources to health and social care for the elderly?
Priority setting and the elderly
Until this point the chapter has mainly been concerned
with decision making in relation to specific identifiable
patients but resource allocation decisions between groups of
patients also raise ethical issues. No health care system has
the resources to provide the medically optimal treatment to
everyone who is ill. There is always a mismatch between the
available resources and the claims on the health care system.
This means that priority setting between patients and patient
987
groups is a reality in all health care systems. Politicians may
want to deny this, but it is nevertheless a fact.
This raises the question how the health care claims of the
old should be prioritized? Should the claims of the old be
given the same, greater, or lesser weight than the claims of
the young? It is obvious that people’s unreflective opinion
on this issue vary according to how it is framed. We gener-
ally, and rightly agree that old people have the same worth
and importance as young people and that, for instance there
should be no difference in how we treat severe pain in the
old and the young. But many people will express the oppo-
site opinion if the issue is, for instance who should receive
a kidney transplant and the hypothetical choice is between
someone who is young and someone who is very old. Peo-
ple’s views are often further complicated by considerations
of merit and past contribution to the development of the
welfare state. Those who are old now did not have access to
the kind of health care we have today when they were young
and may therefore have a stronger claim now.
It is difficult to devise a resource allocation system that
takes into account of all these views concerning the rele-
vance of age to priority setting and far beyond the scope of
this chapter to try to settle which, if any is correct.
It is, however, important to note that some views on this
issue raise considerable ethical worries. Some of the major
tools of health economics directly institutionalize discrimi-
nation of the old. A range of these tools calculate the benefit
of an intervention in terms of the increase in welfare/health
or decrease in suffering/illness it produces and the time the
patient experiences this benefit. But because the old have
shorter life expectancy than the young, this has the conse-
quence that a given curative treatment counts for less if given
to an old person than to a young person, simply because
the older person is likely to have less life left in which to
benefit.1 This is clearly unjust and against all principles of
respecting every human being equally. The same is true of
any kind of resource allocation that primarily bases itself on
future contribution to society because that will also system-
atically discriminate against the elderly and old.
KEY POINTS
• The elderly and old have the same moral status and importance
as anyone else.
• The health care claims of the elderly and old should be treated
with the same attention as the health care claims of everyone else.
• Decision making for persons who are incompetent to make their
own decisions have to be guided by what is in those persons’ “best
interest.”
• The concept of “best interest” covers a wider range of
­considerations than merely “medical best interest.”
• Advanced decision making is most useful for patients with a
predictable clinical course.
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