ISD II - Subspecialties
Ethics/Humanities/Health Law
Friday, June 6,
This package contains:
·
“Bioethics
for Clinicians: 5. Substitute decision-making.” CMAJ, 1996, 155: 1435-1437.
·
“Bioethics
for Clinicians: 6. Advance Care Planning.”
CMAJ, 1996, 155: 1689-1692.
Material from the sessions on
confidentiality (Pediatrics), capacity (Psychiatry)
and consent (Musculoskeletal) is also relevant to this session.
Objectives:
·
This session will address ethical and legal
issues in the care of geriatric patients.
·
The session will draw together a number of the ethical
and legal issues that have been dealt with over the course of ISD II
Outline:
The session will be focussed on a discussion
of a detailed case (to be provided in-class).
The session will consist of three parts:
1. Lecture (Barbara
Barrowman & Andrew Latus)
2. Small group
discussion sections
3. Panel Discussion of the case
(The panel will include, at least, Bill Bavington,
Howard Strong, Barbara Barrowman, Andrew Latus)
Article Summaries
Bioethics for clinicians: 5. Substitute
decision-making
Neil M. Lazar, MD, FRCPC;
Glenn G. Greiner, PhD; Gerald Robertson, LLB, LLM;
Peter A. Singer, MD, MPH, FRCPC
Canadian Medical Association Journal 1996; 155: 1435-1437
Dr. Lazar is Assistant
Professor of Medicine at the University of Toronto, Staff Physician with The Toronto
Hospital and a member of the University of Toronto Joint Centre for Bioethics,
Toronto, Ont. Dr. Greiner is Associate Professor in the Division of Bioethics,
University of Alberta, Edmonton, Alta. Mr. Robertson is Professor of Law at the
University of Alberta, Edmonton, Alta. Dr. Singer is Director of the University
of Toronto Joint Centre for Bioethics, Associate Professor of Medicine at the
University of Toronto, and Staff Physician with The Toronto Hospital, Toronto,
Ont.
Dr. Singer's work is supported by the
National Health Research and Development Program through a National Health
Research Scholar Award. The views expressed here are the authors' and not
necessarily those of their supporting groups or employers.
Paper reprints may be
obtained from: Dr. Neil M. Lazar, 10-EN 214, Toronto General Division, The
Toronto Hospital,
Series editor: Dr. Peter A. Singer,
© 1996 Canadian Medical Association (text and abstract/résumé)
Substitute decision-making is
a means of making health care decisions on behalf of people who are incapable
of making these decisions for themselves. It is based
on the ethical principle of respect for autonomy. Substitute decision-making
poses two main questions: Who should make the decision for the incapable
person, and, How should the decision be made? Because
the applicable statutory and common law varies across
Mr. N is a 35-year-old man
with advanced AIDS who has recently been diagnosed with AIDS-related dementia.
When he was still capable he told his partner and close family members that if
he ever "lost his mind" because of his HIV infection he would want to
receive only comfort measures for any new medical problem. During the past 2
weeks Mr. N's caregivers have noticed that he is having increasing difficulty
breathing. In view of his medical history they think he probably has a
recurrence of Pneumocystis carinii pneumonia (PCP). A chest x-ray shows probable
PCP. The physician knows that Mr. N has had a lot of difficulty with adverse
drug reactions in the past and wonders whether or not the patient should be
admitted to hospital for further investigations and treatment.
Mr. O is an 85-year-old widower who was
diagnosed with Alzheimer disease 10 years ago. His clinical condition has
deteriorated, and he is no longer able to maintain an adequate energy intake by
mouth. Feeding by nasogastric tube has been tried,
but the patient repeatedly pulls out the tube. The option of using a surgically
placed feeding tube is being considered by his caregivers. His family include
five adult children, all of whom are available. Two of them think their father
would want the feeding tube, two others think he would not want it, and one
does not know what he would want.
Mrs. P, a 73-year-old widow with advanced
chronic obstructive pulmonary disease and osteoporosis, has recently moved into
a nursing home because of deteriorating health. Her closest family members
include three married children. One daughter lives in the same city, and the
other two children live more than an hour away by car. Mrs. P's breathing
deteriorates suddenly and she is transferred to hospital for assessment and
treatment. When she is seen in the emergency department she is confused because
of either respiratory failure or the toxic effects of an infection. Blood
analysis reveals significant hypoxemia and respiratory acidosis. The attending
physician wonders whether or not Mrs. P should be intubated.
She has never required intubation before, and her
hospital records give no instructions with regard to resuscitation. Mrs. P's
daughter has just arrived and is waiting to talk to the physician.
In theory, incapable patients
have the same right to consent to diagnostic tests and treatments as do capable
patients. In practice, however, incapable patients cannot exercise this right.
Substitute decision-making is a means of making decisions about health care on
behalf of patients who are incapable.
The primary ethical rationale
for substitute decision-making is the principle of respect for autonomy.[1] It
is an attempt, albeit an imperfect one, to extend the patient's control over
his or her own health care. This rationale has a number of important practical
implications.
First, the substitute decision-maker should
be the person or persons with the best knowledge of the patient's specific
wishes, or of the patient's values and beliefs, as they pertain to the present
situation. In general, close relatives are preferred as substitute
decision-makers in the belief that they will know the patient well enough to
replicate the decision that the patient would make if he or she were capable.
Of course, the patient may be estranged from his or her spouse, parents,
children or siblings, and in some instances a friend or perhaps the patient's
primary care physician or nurse will know the patient's wishes best.
Second, the task of substitute
decision-makers is to decide not how they would want to be treated were they in
the patient's situation but, rather, how the patient would want to be treated.
Despite the best intentions and most sincere efforts of those involved, it
sometimes remains a mystery what the patient would have chosen. When good
information about the patient's wishes, or values and beliefs, is lacking, or
when the available information is contradictory, the decision-maker may be
forced to make a judgement as to the patient's best interests in the given
circumstances.
Finally, when relatives disagree they should
be encouraged to focus their attention on the question of what the patient
would want to be done or what is in the patient's best interests.
Nonstatutory law relating to substitute decision-making is rather
uncertain. It is probably the case that family members do not have the legal
power to make health care decisions on behalf of an incompetent adult patient
and that only a court-appointed guardian, or the court itself, has that power.[2,3] In practice, of course, family members are often
consulted and viewed as having decision-making authority. The
Substitute decision-making is
an important part of the health care policies of health care facilities and
professional organizations.[4,5] For instance, the CMA
policy on resuscitative interventions includes provisions related to substitute
decision-making.[6]
Studies have demonstrated
that partners and close family members cannot accurately predict patients'
preferences for life-sustaining treatments.[7–9] This
should raise concern about uninformed
substitute decision-making and encourage advance care planning. (Approaches to
advance care planning will be discussed in the next article in this series.)
The process of substitute
decision-making poses two important questions. First, who should make the
decision for the incapable person? Second, how should the decision be made? Although the answer to these questions varies from
one jurisdiction to another, the overall goal of substitute decision-making is
to replicate the decision the patient would make if he or she were still
capable.
The most appropriate person to act as
substitute decision-maker is someone appointed by the patient while he or she
is still capable, or by a proxy advance directive or by a court. Other
substitute decision-makers, in their usual order of ranking, include the
patient's spouse or partner, child, parent, sibling or other relative. In some
jurisdictions a public official will serve as substitute decision-maker for a
patient who has no such person available.
The criteria on which the decision should be
based are the specific wishes previously expressed by the patient, the
patient's known values and beliefs, and the patient's best interests. The
patient's wishes are those preferences expressed by the patient while he or she
was competent that seem to apply to the decision that needs to be made. Some
patients record their wishes in an advance directive. Values and beliefs are
less specific than wishes but allow the substitute decision-maker to infer, in
light of other choices the patient has made and his or her approach to life in
general, what he or she would decide in the present situation. The calculation
of a patient's best interests is based on objective estimates of the benefits
and burdens of treatment to the patient.
The role of the health care professional is
to facilitate the process of substitute decision-making by providing
information that will enable the substitute to make an informed choice on the
patient's behalf. Health care professionals should guide the substitute to
consider the patient's previously expressed wishes, values and beliefs, or best
interests (in this order). When it is apparent that the substitute is making a
choice that is significantly different from what the patient might have chosen,
health care providers find themselves in a difficult situation and should seek
advice from colleagues, ethics committees and legal counsel.
Mr. N is incapable because of
his AIDS-related dementia. The situation is not an emergency. The physician
speaks to Mr. N's partner and close family members, who all agree that he would
not want to be admitted to hospital to undergo any invasive procedures. They
feel he would want to go home, perhaps with supplemental oxygen therapy to
relieve some of his distress. They tell the physician that after his last
episode of PCP Mr. N instructed them that he would never wish to go through the
necessary treatment again. Palliative home oxygen therapy is arranged, and the
patient dies 72 hours later.
Mr. O is permanently incapable because of his
Alzheimer disease. The problem is that his five children cannot agree on what
treatment he would choose. In such situations, sensitive counselling with the
family is needed; if this still does not resolve the conflict, referral to a
board (e.g., the Consent and Capacity Board in
Mrs. P is judged to be temporarily incapable.
After discussing the patient's incapacity, the physician asks the daughter
whether she knows what her mother would want if the situation deteriorates
further. The daughter says that Mrs. P's quality of life declined after her
husband died. Although she has never discussed this sort of situation directly
with her mother, she does not think that her mother would want resuscitation.
However, she is uncomfortable making this decision on her own. The physician
suggests that she consult with her siblings. The physician says that in the
meantime everything possible will be done to avoid intubation;
however, intubation will proceed if it becomes
medically necessary. Two hours later the daughter reports to the physician that
all of the children feel that Mrs. P would refuse intubation
if she were capable. Although the physician makes it clear that Mrs. P might be
able to make this decision herself if she recovers from the current episode,
the daughter requests that a "do not intubate"
order be placed on the patient's chart. The physician agrees to write the order
and plans to discuss it with the patient if her capacity improves.
Bioethics for clinicians: 6. Advance care planning
Peter A. Singer, MD, MPH, FRCPC;
Gerald Robertson, LLB, LLM; David J. Roy, STL, PhL, DrTheol
Canadian Medical Association Journal 1996; 155: 1689-1692
Dr. Singer is Director of the
University of Toronto Joint Centre for Bioethics, Associate Professor of
Medicine at the University of Toronto, and Staff Physician with The Toronto
Hospital, Toronto, Ont. Mr. Robertson is Professor of Law at the
University of Alberta, Edmonton, Alta. Dr. Roy is Director of the Centre
for Bioethics, Clinical Research Institute of Montreal, Research Professor at
the Faculty of Medicine, Université de Montréal, and
Director and Coordinator of the Quebec Research Network in Clinical Ethics, Fonds de la recherche en santé du Québec, Montreal, Que.
Dr. Singer's work is supported by the
National Health Research and Development Program through a National Health
Research Scholar Award. The views expressed here are the authors' and not
necessarily those of their supporting groups or employers.
Paper reprints may be obtained from: Dr.
Peter A. Singer (series editor),
© 1996 Canadian Medical Association (text and abstract/résumé)
Advance care planning is a
process whereby a patient, in consultation with health care providers, family
members and important others, makes decisions about his or her future health
care. Grounded in the ethical principle of autonomy and the
legal doctrine of consent, advance care planning helps to ensure that the norm
of consent is respected should the patient become incapable of participating in
treatment decisions. Physicians can play an important role by informing
patients about advance care planning directing them to appropriate resources,
counselling them as they engage in advance care planning and helping them to
tailor advance directives to their prognosis.
Mrs. Q is 63 years old and
has no significant history of illness. She presents for a routine visit to her
family physician. She recently read a newspaper article about a new law on
living wills and wants to obtain some advice about them.
Mr. R is a 40-year-old man who was diagnosed
2 years ago with HIV infection. He presents to an internist with symptoms of
early dementia. The internist considers what Mr. R. should be told about
advance directives.
Advance care planning is a
process whereby a patient, in consultation with health care providers, family
members and important others, makes decisions about his or her future health
care.[1] This planning may involve the preparation of
a written advance directive.[2,3] Completed by the patient when he or she is
capable, the advance directive is invoked in the event that the patient becomes
incapable. (The question of capacity is discussed in the third article in this
series [see sidebar].) Advance directives indicate whom the patient would want
to make treatment decisions on his or her behalf and what interventions the
patient would or would not want in various situations.
Ethics
Advance care planning helps to ensure that
the norm of consent is respected when sick people are no longer able to discuss
their treatment options with physicians and thereby exercise control over the
course of their care. This norm is grounded in the principle of
self-determination and respect for autonomy, a classic expression of which is
Justice Benjamin Cardozo's statement in 1914 that
"Every human being of adult years and sound mind has the right to determine
what shall be done with his own body."[4]
Although the principle of self-determination
places high value on individual liberty, the usefulness of advance care
planning is not limited to those whose world-view valorizes individualism.
Advance care planning also rests on the principle of respect for persons, and
this respect must extend to those whose cultural values emphasize the
interdependence of human beings and the well-being of the family or community
as a whole. Advance care planning recognizes that sick people suffer a loss of
dignity when they cannot command respect for their considered and cherished
intentions and that such intentions may be shaped by cultural values.
Advance care planning cannot avert all
ethical uncertainties and conflicts in clinical decision-making. Some patients
change their views as time passes, and others request life-prolonging
interventions that subsequently prove to be unrealistic. Moreover, substitute
decision-makers are not always sure that a patient's situation is equivalent to
that described in an advance directive.
Law
Policy
The CMA supports the use of advance
directives,[16] and some hospitals and long-term care facilities have policies
regarding advance directives.[17,18]
Empirical studies
Key findings from empirical studies can be
summarized as follows.
The previous article in this
series addressed the role of advance directives in substitute decision-making
for incapable patients [see sidebar]. In this article we focus on the process
of planning care with capable patients.
The main goal of advance care planning is
"to ensure that clinical care is shaped by the patient's preferences when
the patient is unable to participate in decision making."56 Moreover, it
has recently been recognized that such planning is a social process that
requires communication among all concerned; it is not simply the act of
completing an advance directive form.[1,57]
The role of the physician in advance care
planning is still being defined. Some authors believe that the physician's role
is central. For example, Emanuel and associates[57]
describe a framework for advance care planning within the context of the
physician–patient relationship. This conception does not take into account the
fact that many Canadians complete advance directives with the assistance of a
lawyer in the context of estate counselling, or that over 2 million people
requested Power of Attorney for Personal Care forms from the Office of the
Public Guardian and Trustee after the Substitute Decisions Act was passed in
Ontario. A broader view of advance care planning suggests that it occurs
outside the context of the physician–patient relationship. Some preliminary
research findings support this view.[58]
Understanding advance care planning in a
broader social context calls for a re-evaluation of the part that physicians
and other health care providers have to play. If advance care planning occurs
within families, for example, the physician should support that planning rather
than direct it. The physician's primary role is that of educator. Physicians
who raise the issue of advance care planning with patients who are unaware of
their rights with respect to advance directives perform a valuable service.
Patients who request assistance with advance care planning should first be
directed to relevant information sources; these include documents provided by
provincial governments, self-help publications such as Let Me Decide[59] and
the Living Will booklet and video available through the
Once a patient has obtained general
information about advance care planning, the physician can help him or her to
tailor an advance directive to the particular health situation of concern.
Compared with the "generic" approach of preprinted
advance directive forms, a "disease-specific" approach is less
hypothetical and can be based on more precise prognostic information.60 For instance, a physician caring for a patient with severe
chronic obstructive pulmonary disease could draw the patient's attention to the
issue of intubation and ventilation in the event of
respiratory failure.
The physician can also ensure that the
patient has correctly interpreted the information contained in a preprinted advance directive and is capable of completing
it.[61,62]
Lawyers can make an important contribution by
ensuring that an advance directive conforms to provincial legislation and is
consistent with the patient's overall planning with regard to future incapacity
and death. (This may involve other matters such as designating power of
attorney for finances and preparing an estate will.)
Research conducted at the
Physicians should suggest that patients
review their advance care plans when their health status changes. This will help
to ensure that the patient's preferences as expressed in an advance directive
are current and likely to apply to future treatment decisions.
When the patient becomes incapable and his or
her advance directive takes effect, the physician will seek consent to proceed
with the proposed treatment plan from the substitute decision-maker appointed
in the advance directive, as discussed in the previous article in this series.
Mrs. Q is requesting
information about advance care planning. Her physician should refer her to one
of the available information sources and encourage her to begin the process of
advance care planning with her preferred substitute decision-maker. After a
period of time, Mrs. Q and her substitute might together meet with the
physician. At this meeting, the physician can review Mrs. Q's treatment
preferences to ensure that she has understood the information in the advance
directive form and is capable of completing it. If Mrs. Q is concerned about
the legal validity of her advance directive, the physician might recommend that
she consult a lawyer. If her health situation changes, the
physician should recommend that Mrs. Q update her advance directive.
Mr. R, unfortunately, may soon be incapable
of making health care decisions. The physician should raise the subject of
advance care planning with him in a sensitive manner and follow the same steps
as described for Mrs. Q. However, in the case of Mr. R, the physician will have
to pay particular attention to the issue of capacity. This situation also
represents an opportunity for the physician to tailor the information
considered by Mr. R in advance care planning to the likely future: progressive
cognitive deterioration.
Bioethics for clinicians: 15. Quality end-of-life
care
Peter A. Singer, MD, MPH; Neil MacDonald, CM,
MD
CMAJ 1998;159:159-62
Dr. Singer is Sun Life Chair
in Bioethics and Director,
Series editor: Dr. Peter A. Singer,
Correspondence to: Dr. Peter Singer,
© 1998 Canadian Medical Association (full text / résumé)
A physician who receives a call from the
emergency department to see a patient with heart failure will have a clear
framework within which to approach this problem. The thesis of this article is
that physicians do not have an analogous conceptual framework for approaching
end-of-life care. The authors present and describe a framework for end-of-life
care with 3 main elements: control of pain and other symptoms, the use of
life-sustaining treatments and support of those who are dying and their
families. This 3-part framework can be used by clinicians at the bedside to
focus their efforts in improving the quality of end-of-life care.
The cases in the Bioethics
for Clinicians series reflect the authors' experience and are not intended to
refer to any particular cases.
Dr. H is sitting at home enjoying dinner when the phone
rings. The caller is Mr. J, an acquaintance of Dr. H's. He is distraught. He
asks how much air must be injected into an intravenous line to cause a person
to die. When asked why he wants to know, he explains that his 72-year-old
father, currently a patient in a local hospital, has end-stage metastatic lung cancer and is in excruciating pain. Mr. J
cannot bear to see his father in such pain and wants to end his suffering by
means of an air embolism.
Mr. K, a 68-year-old man with a 100 pack-year
history of smoking and known chronic obstructive pulmonary disease, presents to
the emergency department with pneumonia and respiratory failure. He has been intubated 4 times before for respiratory failure. He uses
oxygen at home and is dyspneic at rest. He has
hypoxemia and hypercapnia and is delirious. The
emergency physician, Dr. L, tries to stabilize his condition with oxygen, salbutamol, steroids and noninvasive
ventilation, but Mr. K's respiratory status worsens.
Dr. L cannot locate Mr. K's family. She calls Mr. K's family physician and respirologist
to find out whether they have ever discussed re-intubation,
but unfortunately neither has done so. Although she is uncomfortable with this
situation because of the uncertainty about the patient's wishes, Dr. L decides
to perform the intubation.
What is end-of-life care?
A physician who receives a call from the
emergency department to see a patient with heart failure will have a clear
concept of what heart failure is, as well as a framework within which to
approach the condition and its management. Our thesis in this paper is that
physicians do not have an analogous conceptual framework for approaching
end-of-life care. Several aspects of end-of-life care are addressed in other
articles in this series, especially those on truth telling,[1]
consent,[2] capacity,[3] substitute decision-making,[4] advance care
planning,[5] euthanasia and assisted suicide,[6] and appropriate use of
life-sustaining treatment.[7] Our purpose here is to incorporate these pieces
into a coherent conceptual framework that physicians can use to approach the
care of patients at the end of life. Our framework, described in greater detail
in the section "How should I approach end-of-life care in practice?," has 3 main elements: control of pain and other
symptoms, decisions on the use of life-sustaining treatment, and support of
dying patients and their families. This article underlines the primary purpose
of the "Bioethics for Clinicians" series: "to elucidate key
concepts in bioethics and to help clinicians to integrate bioethical knowledge
into daily practice. . . . [T]he goal is to support
performance: what clinicians actually do."[8]
Why is end-of-life care important?
Ethics and law
From an ethical perspective, the principle of
beneficence requires that pain and other symptoms be controlled. The legal
status of control of pain and other symptoms is not absolutely clear, but
physicians should not risk legal peril if they follow established guidelines
distinguishing these practices from euthanasia.[9]
Aspects of "life-sustaining
treatment" comprise advance care planning, decisions to withhold or
withdraw life-sustaining treatment and appropriate use of life-sustaining
treatment. Advance care planning is ethically supported by the principle of
respect for autonomy and is legally recognized in most Canadian provinces.[5]
Decisions by patients or substitute decision-makers to withhold or withdraw
life-sustaining treatment proposed by a physician are supported by the ethical
principle of respect for autonomy and the legal doctrine of informed
consent.[2–4] In contrast, the ethical and legal issues related to appropriate
use of life-sustaining treatments demanded by patients and substitute
decisions-makers over the objections of physicians are not as clear.[7]
Both euthanasia and assisted suicide are
illegal in Canada.[6]
Policy
Recent policy initiatives have framed
end-of-life care as an issue in health care quality — a positive development,
in that it focuses organizational commitment to quality on the problem of
end-of-life care. But what does quality end-of-life care entail? In the United
States, several organizations have published a "statement of
principles" of quality end-of-life care that includes the following
domains: treatment of physical and emotional symptoms, support of function and
autonomy, advance care planning, aggressive care near death, patient and family
satisfaction, global quality of life, family burden, survival time, provider
continuity and skill, and bereavement.[10] The Committee on Care at the End of
Life of the US Institute of Medicine, National Academy of Sciences, has
proposed the following 6 categories of quality end-of-life care: overall
quality of life, physical well-being and functioning, psychosocial well-being
and functioning, spiritual well-being, patient perception of care, and family
well-being and perceptions.[11]
Empirical studies
Although euthanasia consumes the attention of
the media, the critical ethical issues vexing physicians, patients and families
lie elsewhere. In particular, pain is often poorly managed.[12–14]
In one study of older patients who were conscious during the last 3 days of
life, 4 in 10 had severe pain most of the time.[15] In a survey of physicians
and nurses at 5 US hospitals, 47% of respondents reported that they had acted
against their conscience in providing care to the terminally ill, and 55%
reported that they sometimes felt the treatments they offered patients were
overly burdensome.[16]
Consistent with the recent focus of policy
efforts, quality improvement strategies have been applied at the organizational
level to the problem of end-of-life care.[17,18] For
example, in an innovative program called "Dialogue to Action,"
Jacobson and associates[19] arranged for the next of kin of patients who had
died to describe their experiences of end-of-life care to members of the
hospital ethics committee. It is likely that appropriate organizational change
will require both the elicitation of "actionable reports" —
narratives of care that highlight specific clinical areas for improvement — as
well as the development of innovative ways to change clinical practice, for
instance, by focusing traditional "morbidity and mortality rounds" on
quality end-of-life care.
How should I approach end-of-life care in practice?
To address this question, we recommend a
conceptual framework with 3 main elements: control of pain and other symptoms,
decisions on the use of life-sustaining treatments, and support of dying
patients and their families. We do not believe that a conceptual framework will
magically solve the documented problems in end-of-life care; we do, however, believe
that this is an important step.
Control of pain and other symptoms
No patient should die in pain or with other
treatable symptoms. Indeed, before social, psychosocial and spiritual problems
can be properly addressed, good symptom control must first be achieved: it is
difficult to contemplate spiritual issues or to reflect on life's
accomplishments when in pain or with kidney basin in hand. The undertreatment of pain and other symptoms is well
documented, but aside from inadequate training of health professionals[20,21]
the causes are complicated and not well understood. On occasion, physicians may
be concerned about balancing good symptom control with the risk of hastening
death. Guidelines have been developed to assist physicians in distinguishing appropriate
analgesia from euthanasia by lethal injection.[9] Controlling other symptoms,
such as nausea, fatigue and breathlessness, may be even more challenging than
controlling pain, but effective approaches have been developed.[22]
Physicians must keep in mind that the
problems of dying patients have their genesis at an earlier time in the
trajectory of illness. Thus, palliative care should not be isolated as simply
an end-of-life option; it must be intermeshed with therapies aimed at
prolongation of life or cure. As in other areas of medicine, prevention or
early control of a symptom is preferable to a rescue attempt on preventable,
but now out-of-control, suffering. Every physician who cares for dying patients
should ensure that he or she has adequate skills in this domain, as well as
access to skilled consultative help from palliative care specialists. A list of
leading journals and other information sources is given in the sidebar.
Use of life-sustaining treatments
To the extent possible, the patient and his
or her family should be able to choose the site and nature of the care that the
patient will receive in the last days of life and should be encouraged to
discuss in advance their desires regarding life-sustaining treatments and
personal care. Physicians should facilitate this advance care planning[5,23–26]
and guide and support the patient and the family through the process of giving
consent to treatment and arranging for substitute decision-making.[4] A key
skill here is the communication of bad news.[27] In addition, physicians need
to develop an approach to the opposite problem — when the patient or the family
demands treatment that the physician feels is inappropriate.[5] A key skill
here is the ability to negotiate a treatment plan that is acceptable to the
patient, the family and the health care team.[28]
Support of patients and their
families
The support that each patient and his or her
family needs from the physician is unique. The best way to find out what support
will be appropriate in a particular situation is to ask, "How can I help
you?"
Attention to psychosocial issues demands
involvement of the patients and their families as partners. Although physicians
should be sensitive to the range of psychosocial distress and social disruption
common to dying patients and their families, they may not be as available or as
skilled as nurses, social workers and other health care professionals in
addressing certain issues. An interdisciplinary health care team can help in
these areas.
Spiritual issues often come to the fore as
one is dying, and pastoral care teams should be available to assist the
patient's own clergy in counselling.
Although not all families need or desire
follow-up after the death of a loved one, many appreciate a letter or a
telephone call from the physician or a member of the palliative care team. Some
families will need more specific help. Physicians should be sensitive to risk
factors for poor adjustment to bereavement and should be knowledgeable about
local bereavement services.[29]
Both of the cases presented at the beginning
of this article represent failures in end-of-life care. In the first,
inadequate pain control led to a desire for euthanasia. What was needed was not
an air embolism but better pain control. When this was achieved, Mr. J was
relieved and did not pursue the idea of euthanasia. This case also illustrates
that physicians should not take requests for euthanasia at face value; rather,
they should explore and address the problems in end-of-life care that might
have led to such requests.
The second case represents a failure of
communication about life-sustaining treatments. Mr. K had end-stage lung
disease and had been intubated 4 times previously, so
he was ideally situated to know whether he wanted to undergo the procedure
again; indeed, it is very likely that he had considered this possibility. If he
did want intubation, knowledge of his wishes would
have relieved Dr. L's anxiety. (Although death was looming, it would be
difficult to claim that intubation would be futile in
this case, given that it had worked before.) If Mr. K did not want to undergo intubation, he missed his opportunity to communicate this
desire. Arguably, the family physician and the respirologist should have broached this issue with him and
helped him to make his wishes known in such a way that they would be
effectively communicated when respiratory failure occurred.
In summary, physicians caring for patients at
the end of their lives should ask themselves 3 questions: Am I managing this
patient's pain and other symptoms adequately? Have I addressed the relevant
issues with respect to the use of life-sustaining treatment? Am I supporting
this person and his or her family?
Dr. Singer is supported in part by a
Scientist Award from the Medical Research Council of Canada.
Sidebar: Resources for physicians providing
end-of-life care
Comprehensive textbook
Doyle D, Hanks GWC,
MacDonald N, editors.
Palliative care manuals
MacDonald N, Boisvert M, Dudgeon D, Hagen N, editors. Palliative medicine: a case-based manual.
Regnard C, Hockley J. Flow diagrams in advanced cancer and
other diseases.
Twycross RG. Symptom management in
advanced cancer.
Weller A, Caroline NL. Handbook of palliative care in
cancer.
Woodruff R. Palliative medicine:
symptomatic and supportive care for patients with advanced cancer and AIDS.
2nd ed.
Palliative care standards and policy
statements
Canadian Palliative Care Association
Standards Committee (Ferris FD, Cummings I, editors). Palliative care:
towards a consensus in standardized principles of practice [first-phase
working document].
Committee on Care at the End of Life,
Division of Health Care Services, Institute of Medicine (Field MJ, Cassel CK, editors). Approaching
death. Improving care at the end of life.
Journals
European Journal of Palliative Care
Journal of Pain and Symptom Management
Journal of Palliative Care
Pain
Palliative Medicine
Psycho-Oncology (journal of the psychological, social and behavioural
dimensions of cancer)
Supportive Care in Cancer (official journal of the Multinational
Association of Supportive Care in Cancer)
World Wide Web sites