INTRODUCTION
Controversies about health care choices for patients approaching the
end of life have played a prominent role in the brief history of the
discipline of bioethics. In the 1970s and 1980s, early debates in
bioethics in the United States focused on the scope and limits of patient
rights to refuse life-sustaining treatment (President's Commission, 1983). Two of the most
widely discussed issues in bioethics in the 1990s, namely, the appeal to
futility to limit access to life-sustaining treatment and the
justifiability of euthanasia and physician-assisted suicide, also
addressed treatment decisions at the end of life (Moskop, 1999). Prompted in part by these continuing
controversies, medical researchers and professional groups have begun to
pay increasing attention to the topic of end-of-life care. Their efforts
include investigation of patient desires regarding care at the end of
their lives and examination of patterns of end-of-life care.
Comparison of data about patient desires for end-of-life care and the
actual course of end-of-life care suggests that there is a significant
discrepancy in the United States between the kind of care that most people
want and the kind of care that they in fact receive. Increasing
dissatisfaction with current options for end-of-life care has prompted
groups and individuals to propose a variety of strategies for improving
care at the end of life. After a review of two studies of patient desires
regarding end-of-life care and two studies of the actual course of
end-of-life care, this article will examine one important strategy for
improving care at the end of life, namely, advance care planning, a
recently developed approach to preparing for end-of-life care choices. The
article will describe the basic components of the advance care planning
process and cite results from a community-wide advance-care planning
program in LaCrosse, Wisconsin, to illustrate the benefits of this
approach.
WHAT KIND OF END-OF-LIFE CARE DO MOST
PATIENTS WANT?
Based on an analysis of interviews with 126 patients, including
dialysis patients, persons with human immunodeficiency virus (HIV)
infection, and residents of a long-term care facility, Singer et al.
(1999) found five frequently identified areas of
concern about end-of-life care. The five areas these patients most often
identified were:
- receiving adequate pain and symptom management;
- avoiding inappropriate prolongation of dying;
- retaining control over their end-of-life decisions;
- relieving burdens that their dying would impose on loved ones;
and
- strengthening relationships with their loved ones.
Singer et al. conclude that research and practice in end-of-life care
should focus on these five patient-identified desires.
Partial confirmation of the importance for patients of the above set
of desires can be found in a second study of important factors at the end
of life. Steinhauser et al. (2000) administered
a survey about attributes of a good death to a national sample of 340
seriously ill patients in the U.S. Veterans Affairs (VA) health care
system. Attributes rated as important by at least 80% of the
patient-respondents included a number of factors related to pain and
symptom management and to avoiding prolongation of dying (being kept
clean, being free of pain, being free of shortness of breath, being free
of anxiety, and maintaining one's dignity), other factors relating to
control over decision making (naming a decision maker, knowing what to
expect about one's physical condition, knowing that one's
physician is comfortable talking about death and dying, feeling prepared
to die, and having treatment preferences in writing), and still other
factors relating to relieving burdens and strengthening relationships with
loved ones (having financial affairs in order, saying goodbye to important
people, resolving unfinished business with family or friends, sharing time
with close friends, believing family is prepared for one's death, and
having family present).
These reports offer at least a provisional account, subject to
modification by future studies, of North American patients' most
important desires for care at the end of life. How do they compare to the
end-of-life care commonly provided in the United States?
WHAT KIND OF END-OF-LIFE CARE DO MOST
PATIENTS RECEIVE?
The most comprehensive data on end-of-life care in the United States
come from SUPPORT, the Study to Understand Prognoses and Preferences for
Outcomes and Risks of Treatment (The SUPPORT Principal
Investigators, 1995). SUPPORT was a five-year, multicenter study,
in two phases, of treatment decisions and outcomes for 9105 adult patients
hospitalized with life-threatening illnesses; 47% of the patients died
within 6 months of enrollment in the study.
In the first phase of SUPPORT, investigators observed the care
provided to 4301 patients. Notable among the reported observations are the
following: (1) 50% of the conscious patients who died in the hospital
experienced moderate or severe pain during most of their last 3 days of
life; (2) 50% of all the patients who died in the hospital spent 8 or more
days in an ICU, on mechanical ventilation, or in coma before their deaths;
and (3) 31% of all patients did not want cardiopulmonary resuscitation
(CPR); of these patients, 49% did not have a do not resuscitate (DNR)
order written during their hospitalization.
In phase 2 of SUPPORT, nurses were assigned to specific patient groups
to facilitate communication among patients, families, and physicians about
patient prognosis and treatment preferences. Despite this intervention,
however, phase 2 results showed no improvement in study outcomes for the
intervention groups over the control groups or over phase 1 results. A
large number of the study patients still experienced significant pain
prior to death and spent many days in an ICU, on mechanical ventilation,
or in a coma before death. As in phase 1, patients' wishes regarding
resuscitation were often not known by their physicians.
A more recent national study of the dying experience strongly suggests
that the deficiencies in end-of-life care identified by the SUPPORT
investigators have not disappeared. Teno et al. (2004) conducted a mortality follow-back study of
deaths in the United States in 2000, interviewing family members or other
knowledgeable informants regarding the last few weeks of life of 1578
decedents. Nearly one-fourth of the respondents reported that the patient
did not receive any or enough help with pain or dyspnea, and half reported
that the patient did not receive enough emotional support. Some 30.1% of
the respondents wanted, but did not have, contact with the patient's
physician, and an additional 23.9% had concerns about the physician's
communication about medical decision making. One-third of the respondents
also expressed concerns about emotional support for the patient's
family. In nearly all areas examined, significantly higher rates of
concern were reported when the patient's last place of care before
death was a nursing home or hospital.
A DISCREPANCY BETWEEN DESIRES AND REALITY IN
END-OF-LIFE CARE
The studies outlined above suggest a significant discrepancy between
the kind of end-of-life care most patients desire and the kind of care
they are likely to receive. Patients desire freedom from pain, but many
experience moderate or severe pain in the days before death. Patients do
not want their lives prolonged inappropriately, but many are kept alive
for days or weeks before death by intensive care or mechanical
ventilation. Patients desire control over end-of-life treatment decisions,
but physicians are often unavailable to patients and families or unaware
of their patients' treatment preferences. Patients desire to ease the
burden of their dying on their loved ones, but prolonging the dying
process through aggressive medical treatment will likely increase the
emotional and financial burden on the family. Finally, patients desire to
strengthen their relationships with their loved ones, but intensive care
isolates patients and makes communication with family and friends
difficult.
Why do the above differences between patient desires and the reality
of end-of-life care persist? Many factors, cultural, personal,
professional, and social, are likely contributors to this situation.
Culturally, Americans tend to place a high value on youth, productivity,
and independence, and to fear and avoid problems of aging, dependence, and
death (Becker, 1973). Thus, many patients and
their families may be ignorant about their options for end-of-life care
(Silveira et al., 2000), and may have
unrealistic expectations about the power of medicine to prolong their
lives (Murphy, 1988). Medical education, until
very recently, has emphasized a responsibility to fight aggressively to
prolong life and has portrayed the death of a patient as a failure for the
physician (Cassel, 1996). Medical curricula have
typically not included formal training in pain and symptom management or
in communicating with patients about terminal illness and about
end-of-life care. For example, only 4 of 126 U.S. medical schools taught a
separate required course on care of the dying, according to a
1997–1998 American Medical Association (AMA) survey (AMA, 1999). Social and structural barriers to quality
end-of-life care also persist, including limited availability of hospice
and palliative care programs and limited funding for these programs (Committee on Care at the End of Life, 1997).
In recent years, problems in end-of-life care have attracted
increasing attention. As noted above, ongoing debate in the United States
about the issue of legalizing physician-assisted suicide has called
significant public attention to deficiencies in end-of-life care like
those identified in the SUPPORT study. Professional and public
organizations have proposed and implemented a variety of efforts to remedy
these deficiencies, including public education campaigns about end-of-life
care options, new professional specialties in hospice and palliative care,
and public policy initiatives to support institutional and individual
caregivers. The rest of this article will describe and recommend one of
these efforts, namely, advance care planning.
IMPROVING END-OF-LIFE CARE THROUGH ADVANCE
CARE PLANNING: A CASE EXAMPLE
How can advance care planning contribute to better end-of-life care?
To answer this question, let us first consider the following case
example.
Mr. Smith is a 75-year-old man with multiple illnesses, including
chronic obstructive pulmonary disease and congestive heart failure. He
lives at home with his wife, who is his primary caregiver. When he
suddenly stops breathing one evening, his wife calls the local emergency
telephone number. The rescue squad arrives promptly, resuscitates Mr.
Smith, and transports him to the Emergency Department (ED) of the local
hospital. In the ED, he is intubated and then he is admitted to the
medical intensive care unit (MICU).
One week later, Mr. Smith is still in the MICU. He is on ventilator
support and has not regained consciousness. A consulting neurologist
reports that he has suffered anoxic brain damage and may never regain
consciousness. He has also developed aspiration pneumonia and will soon
require a tracheostomy for long-term ventilator support. Given the
patient's multiple problems, Dr. Johnson, Mr. Smith's attending
physician, estimates his chances of leaving the ICU alive are no better
than 20%.
Dr. Johnson explains the situation to Mr. Smith's wife and his
adult son and daughter and asks what kind of care they believe Mr. Smith
would want. In response, Mrs. Smith insists that Dr. Johnson not
discontinue any life-sustaining measures and do whatever he can to keep
her husband alive. Mr. Smith's son disagrees, however. He tells the
physician that his father informed him that he would not want to be kept
alive on machines and gives the physician a copy of a living will, signed
by Mr. Smith, stating in general terms a desire not to be kept alive by
“extraordinary means” in a “hopeless condition.”
Mrs. Smith acknowledges that Mr. Smith prepared a living will many years
ago, but she doesn't believe he meant it to apply to the current
situation. Mr. Smith's daughter is unsure what kind of care her
father would want, but says she will support her mother in this difficult
situation. How should Dr. Johnson proceed?
Though this is a hypothetical case, many physicians and nurses in the
United States will be familiar with similar difficult situations. The case
poses an apparent moral dilemma for Dr. Johnson. There are two obvious
alternatives, to continue life support or to withdraw life support and
allow Mr. Smith to die. Plausible reasons can be offered for each
alternative. Continuing life support honors Mrs. Smith's explicit
instructions, and it may preserve Mr. Smith's life, at least for a
time. Withdrawing life support may be what Mr. Smith would want, given the
limited prospect for survival or for a good quality of life. There are
unavoidable uncertainties about the consequences of treatment and about
Mr. Smith's wishes. A decision is necessary, but there is no obvious
“right answer,” that is, no answer that all will accept or
that will prevent recriminations and hard feelings.
Much effort could be devoted to analyzing this case (and others like
it), attempting to determine what Dr. Johnson should do. Another fruitful
approach to such cases, however, is to ask whether the moral dilemmas they
pose can be prevented. In the rest of this article, I will argue that
engaging in a process of advance care planning can forestall many
end-of-life treatment dilemmas.
WHAT IS ADVANCE CARE PLANNING?
Advance care planning is the name most often used for an
approach to preparing for end-of-life care that has attracted increasing
attention in the United States during the past decade. One recent guide
defines advance care planning as “an organized approach to
initiating discussion, reflection, and understanding regarding an
individual's current state of health, goals, values, and preferences
for future treatment decisions” (Hammes &
Briggs, 2000). The concept of advance care planning grew out of
previous efforts to encourage the use of advance directives, documents
designed to guide health care decisions for a person after he or she has
lost the mental ability to participate directly in making such decisions
(Moskop, 1989). Though one type of advance
directive, the living will, has been available in the United States for
about 25 years, most Americans have not prepared an advance directive for
themselves. Limited use of advance directives is likely due to a variety
of factors, including the previously mentioned reluctance to think about
death, the fact that most people require assistance in understanding and
completing these documents, and fear that completing an advance directive
may adversely affect one's treatment (Orentlicher,
1994).
Advance care planning is a strategy that involves the use of advance
directives, but is designed to overcome the limitations of too narrow a
focus on the directives themselves (Singer et al.,
1998). In advance care planning, expressing one's plan for
end-of-life care in an advance directive is only one step, albeit an
important step, in a larger and ongoing process that includes education,
reflection, communication, and review. Advance care planning advocates
argue that each step in this process can contribute to improved care at
the end of life.
COMPONENTS OF ADVANCE CARE PLANNING
As noted above, advance care planning is a multistage process of
recognition, education, reflection, decision making, communication, and
review regarding one's preferences for end-of-life care. Let us
consider each of these components of the advance care planning process in
turn.
Recognition
To engage in advance care planning, people must first recognize that
they have different options or choices in end-of-life care and that they
can plan ahead for their end-of-life care by identifying and communicating
their preferences in advance. Some may participate in end-of-life
treatment decisions as they care for their own parents or other loved ones
at the end of life, but may not realize that advance planning is possible.
An effective way to initiate advance care planning is for health care
professionals to introduce this topic to their patients or clients as a
routine part of good health care. Routine introduction of this topic by
health professionals may help to overcome the initial reluctance of many
patients to talk about death and dying, and it can prevent patients from
jumping to the mistaken conclusion that any discussion of these issues
must mean that the patient has a life-threatening illness. If the patient
does in fact already have a serious illness, introduction of the topic of
advance care planning may be a valuable way to encourage the patient to
confront the situation directly and to examine options for responding to
it.
One way to motivate initial patient interest in advance care planning
is to characterize it as a kind of gift to the patient's loved ones.
Advance care planning is a gift to loved ones because it gives them a
clear idea of the patient's desires for care and so relieves them of
the burden of deciding, without knowing the patient's wishes, what
kind of care the patient should receive. As noted above, many people
express a desire for control over treatment decisions as they approach the
end of life. Advance care planning can also be introduced as a way to give
people greater control over these decisions.
An obvious requirement for engaging in advance care planning is that
the person have sufficient mental capacity to understand his or her
medical condition and options for care in the future. Professionals must,
therefore, consider the patient's mental capacity in their decision
about introducing the topic. After presenting the topic of advance care
planning, professionals should also be guided by the patient's
willingness to pursue it.
Education
Once people recognize the availability of advance care planning, they
need several kinds of information in order to pursue it effectively.
First, they need to understand their health condition, and, if they have a
chronic or progressive illness, how their condition may change. Second,
they need information about different options for care in response to
possible or anticipated medical events, such as the significant worsening
of a progressive disease. This information should include a description of
the treatments themselves and of their major anticipated benefits and
risks. Finally, they need to know what mechanisms are available for
expressing and communicating their desires about future treatment
options.
This educational component of advance care planning offers health care
professionals an excellent opportunity to assess and to enhance their
patients' knowledge in all of the above areas. Advance care planning
training programs assist professionals in educating patients by providing
them with various methods and materials, including checklists of important
information for different types of patients and informational brochures
and worksheets for preparing advance directives to share with patients and
families (Emanuel et al., 1999; Hammes & Briggs, 2000).
A concern about advance care planning commonly expressed by physicians
is that time constraints in the clinical setting will not allow them to
engage in the process of educating patients about future treatment options
and helping them to develop a plan. This is a genuine concern, but several
responses can be offered. First, advance care planning need not occur
“all at once” in a lengthy meeting. It can, instead, be
pursued in a series of briefer discussions, perhaps including one to
introduce the concept and provide educational materials, a second to
answer patients' questions, and a third to complete a written plan.
Second, the advance care planning process can involve a team of
professionals, not only the physician and patient. If, for example, a
patient expresses interest in advance care planning in an initial
discussion with her physician, the physician may arrange for the patient
to meet with a professional colleague, often a nurse or medical social
worker, who is trained to facilitate the planning process. The colleague
can guide the patient through the process and inform the physician about
the results. The physician can then review the patient's wishes and
plans with her at a later appointment.
Reflection
Armed with adequate knowledge about their health condition and
potential treatment options, patients can reflect on what options they do
in fact prefer. Professionals can encourage this reflection by asking
patients to think about what it means for them to live well at the present
time and what kind of life they would desire if their medical condition
were to change significantly. Because people differ greatly in their basic
values and goals, they are also likely to differ in their desires for
end-of-life care. Thus, one cannot assume that patients' preferences
will be the same as those of their caregivers or even of their relatives.
Patients can, however, be encouraged to discuss these issues with both
caregivers and loved ones in order to test, refine, and communicate their
reasoning and their choices. One value of engaging in a process of
deliberation and reflection, then, is that it can help patients to select
the treatment options that best embody their values and achieve their
goals.
Decision Making
The processes of education and reflection about end-of-life care reach
their initial conclusion in decision making. Relying on their knowledge
and reflection, people who engage in advance care planning can make
informed decisions about what kinds of care they would and would not want
in different situations. They can also make decisions about how their
treatment preferences will be expressed and communicated to others,
especially their loved ones and their health care providers. Basic choices
here include whether to complete a written advance directive, which type
of advance directive to use, whether to express one's preferences in
very specific or more general terms, whether to designate a health care
agent with authority to make treatment decisions on one's behalf, and
if so, whom to designate as one's health care agent. Health care
professionals should be prepared to offer advice and support to patients
in making these decisions.
Communication
Once they have made basic decisions about their wishes for end-of-life
care, individuals should be encouraged to communicate their decisions with
loved ones and with their health care providers. Such communication is
essential to respecting the person's wishes, because others cannot
respect a patient's wishes unless they have been informed about them.
If the person has chosen to appoint a health care agent to make decisions
for him or her by means of a health care power of attorney, it is
obviously extremely important that the person inform his or her agent
about what the person's wishes are and ascertain the agent's
willingness to carry out those wishes. If a person's plans have been
recorded in an advance directive of any type, copies of that document can
be given to family members and caregivers. Health care institutions,
including hospitals, long-term care facilities, hospices, and home health
agencies, are required by federal law in the United States to inquire of
their patients or clients whether they have an advance directive. More
institutions are now making advance directives a part of the
patient's permanent medical record so that they can be easily
retrieved and made available to caregivers when needed. Several private
organizations and governmental agencies have established on-line advance
directives registries that enable individuals to register and access their
directives via the Internet (North Carolina Department
of the Secretary of State, 2004; U.S. Living
Will Registry, 2004).
Review
Completion and communication of one's plan for end-of-life care
are important steps in the process of advance care planning, but they are
not necessarily the final steps. Advance care plans often express
preferences about treatment options that may be encountered many years in
the future. In the intervening years, however, the person's goals,
values, and preferences for care may undergo considerable change. The
person's health condition, and the options available to treat a
particular condition, may also change dramatically. The person one has
chosen to act as one's health care agent may no longer be available
or be willing to perform that role. For all of these reasons, it is
advisable periodically to review and, if necessary, to update one's
plans. Health care professionals who have a long-term relationship with
their patients can raise this issue at regular intervals to reaffirm or
revise existing plans. Professionals assuming the care of new patients
should inquire whether they have advance directives and, if they do,
should confirm that the directives are up to date.
BENEFITS OF ADVANCE CARE PLANNING
The above description of the components of advance care planning
suggests a number of significant benefits of this approach. Professionals
who are able to offer persuasive reasons for engaging in advance care
planning may find it easier to help patients overcome initial barriers of
ignorance, fear, and avoidance of end-of-life issues. Once they overcome
these barriers, many patients will recognize that advance care planning
can help to satisfy their own desire to retain control over their care and
also avoid imposing a potentially burdensome responsibility on their loved
ones. Advance care planning gives patients a clear, socially recognized
opportunity to record their wishes in advance directives and to
communicate those wishes to family and caregivers. Patients'
willingness to address these wishes directly gives their caregivers a
clearer understanding of their treatment preferences and thus makes it
easier for caregivers to respect those wishes.
Consider once again the case of Mr. Smith. Suppose that Mr. Smith had
engaged in an ongoing process of advance care planning with health
professionals and loved ones prior to his emergency hospital admission.
Might this have prevented the dilemma that arose in his case? Mr. Smith
had apparently expressed some previous interest in end-of-life care, since
he had prepared a living will some years earlier. Continuing discussion
about his medical condition, possible complications, and treatment options
may have given him a better understanding of his situation and allowed him
to express his treatment wishes more clearly and explicitly. Additional
information about advance directives may have enabled him to choose a type
of advance directive better suited to his situation, perhaps a health care
power of attorney authorizing his son to act as his health care agent. Mr.
Smith might also have been encouraged to discuss his wishes with his wife,
children, and primary care physician; such discussions might have helped
them to understand and accept his wishes. Periodic review of his plan with
his physician and family could have reinforced their awareness of his
wishes. If his advance directive had been made a part of his permanent
medical record at the local hospital, it could have been retrieved and
given to his physicians on admission, so that they would have an earlier
and fuller understanding of his wishes and, if Mr. Smith had appointed a
health care agent, would know who was authorized to make treatment
decisions on his behalf. These preparations might well have prevented the
treatment dilemma that arose in their absence.
Advance care planning is a relatively new approach to improving
end-of-life care. To be successful, it will require professionals who are
willing and able both to assist their patients through the advance care
planning process and to honor their patients' preferences at the
appropriate time. It will also require health care institutions that are
willing to support the planning process to retain plans, to make them
available when decisions are needed, and to ensure that plans are honored.
Results from one U.S. city, LaCrosse, Wisconsin, suggest that a vigorous
community-wide advance care planning education program can enable large
numbers of local residents to complete advance directives, and
institutional policies can enable advance directives to be honored in the
appropriate circumstances (Hammes & Rooney,
1998). Of 540 decedents studied during a 1-year period in La
Crosse, 85% had written advance directives, and 95% of those with advance
directives had the document in their medical record at the time of their
death. Almost all of these advance directives requested that
life-sustaining treatments be forgone as death neared, and treatment was
forgone in 98% of the deaths.
Advance care planning is not a panacea; it cannot resolve all of the
various problems that may arise as patients approach the end of life. It
can, however, help patients to make their treatment preferences clearer
and better known to their caregivers and loved ones. Greater clarity and
understanding of patient desires regarding end-of-life care, along with
formal recognition of the authority of advance directives, can, in turn,
make it easier to achieve the worthy goal of honoring those
directives.
ACKNOWLEDGMENTS
Major work on this article was completed while Dr. Moskop was an
Overseas Research Fellow of the Program of Applied Ethics at the
University of Stellenbosch, South Africa. Dr. Moskop is most grateful for
the support of the Program of Applied Ethics, its Director, Dr. Anton van
Niekerk, and the National Research Foundation of South Africa.
