This article examines the evolution of and need for "end-of-life conversations."
Barriers to end-of-life discussions that have been identified in patients
and families, health care professionals, and health care systems can seriously
interfere with the quality of remaining life for terminally ill patients.
Strategies for enhancing end-of-life discussions are most productively linked
to (1) physicians' interpersonal communication skills, (2) a patient-centered
model of care, (3) a focus on quality of remaining life, and (4) innovative
clinical models for implementing these discussions earlier in the care process.
We conclude that end-of-life conversations must become a routine, structured
intervention in health care and that advance care planning is best viewed
as one component in a series of ongoing end-of-life discussions. Randomized
trials are needed to examine new approaches and models for enhancing end-of-life
conversations.
For patients and families facing advanced illness, the medical interventions
and quality of life that lie ahead are largely determined through a series
of conversations they have with their physicians and other health care providers.
These discussions occur between initial diagnosis and death and include many
emotionally charged topics, such as unfavorable prognoses and treatment failure,1-3 treatment choices and
family responses to them,4 advance care planning,5,6 concerns about one's ability to cope,
life goals and other life-closure issues,7
anticipatory mourning,8 and the meaning of
the illness and the suffering it creates.9-11
When these often difficult discussions are avoided or are managed poorly,
the quality of remaining life for patients can be seriously jeopardized.
Recent investigations of hospital care of the seriously ill highlight
the need for more timely and effective end-of-life discussions. Numerous studies
reveal that (1) patients are dying after prolonged hospitalization or intensive
care, often in unrelieved pain; (2) preferences concerning life-sustaining
treatments are not adequately discussed, documented, or adhered to; and (3)
referrals to hospice and home care, which could address these shortcomings,
occur late or not at all.12-14
Only about 20% of patients who die in the United States receive hospice care.15 The admission criterion of having a prognosis for
survival of less than 6 months has inhibited referrals to hospice, and an
increasing trend of late referrals further limits use of hospice care.16
These disappointing results and the demands of a baby boomer generation
for greater control during life's final passage are galvanizing widespread
efforts to improve end-of-life care.13,17,18
As critical components of this care, end-of-life conversations are a major
focus of these efforts.
Barriers to end-of-life conversations
An expanding literature explores reasons that end-of-life conversations
often do not occur or are conducted poorly. Barriers to end-of-life discussions
have been identified in patients and families, health professionals, and the
structure of the medical care system.
Most analyses of failed communications in end-of-life contexts attribute
failures almost exclusively to the health care professional. However, recent
findings emphasize the role of patients, who often manage to keep conversations
away from certain topics.19-21
Patients may conceal the full extent of their pain, feelings of self-blame,
anger, loss, fears about prognosis, and other difficult experiences that could
be the content of end-of-life discussions.22,23
Often patients avoid end-of-life discussions because of the stigma and embarrassment
they associate with these topics.24 Shyness,
confusion, fears of death and dying,25,26
and cultural prohibitions27 can also inhibit
such discussions. Family members and significant others can also block or
complicate end-of-life conversations when they are unable to discuss and accept
the advanced nature of the patient's disease or the patient's preferences
concerning end-of-life care. They can overestimate the chance of cure or fear
potential regret28 and unreasonably demand
that the physician "do everything."29 Medical
information available to patients and families through the Internet and popular
media can further complicate these discussions.
Health Care Professionals
According to Morrison,3 physicians might
avoid end-of-life conversations because they (1) fear causing pain and bearing
bad news, (2) lack knowledge of advance directive laws and training in delivering
bad news, (3) view death as an enemy to be defeated, (4) anticipate disagreement
with the patient or family, (5) have medical-legal concerns, and (6) feel
threatened by such discussions.3(pp123-128)
Physicians and other health care providers are less likely to initiate
end-of-life discussions when they believe they lack the needed interpersonal
skills. A survey of physician trainees found that residents felt competent
to discuss "do not resuscitate" orders but felt less competent to discuss
a hospice referral and did not feel competent to discuss treatment withdrawal
or to conduct family conferences.30 The authors
concluded that physicians-in-training lack competence and comfort in key areas
and that these areas should be emphasized in end-of-life educational programs
for residency training.
The structure of the medical care system also discourages productive
end-of-life conversations. First, end-of-life discussions are not a routine
part of care, and clinicians rarely have a structure for discussing end-of-life
issues within their busy schedules.31 Coordination
of these conversations, which becomes more necessary as the illness progresses,
is also not a routine part of care. Second, care is frequently conducted by
multiple physicians in multiple sites (eg, office, hospital, home), and it
is often unclear who is responsible for initiating and documenting the discussions.
Third, the US medical system does not significantly compensate physicians
for psychosocial conversations, including end-of-life discussions.24,32,33 Finally, decreasing
contact time and fewer long-term relationships between physicians and patients
are additional barriers to end-of-life discussions. A recent study of how
physicians communicate about advance directives showed that the conversations
about advance directives averaged 5.6 minutes and physicians spoke for two
thirds of this time.34 Although advance directives
were introduced, patients' values and attitudes toward uncertainty were infrequently
dealt with, rendering the discussions less useful in decision making. When
end-of-life conversations do occur, these discussions require that the physician
sensitively probe the patient's concerns, questions, and needs.
Enhancing end-of-life conversations
How can the barriers to end-of-life conversations be overcome? Evolving
theory and practice suggest that the quantity and quality of these discussions
will in the future be closely linked to improving physicians' communication
skills, adopting a patient-centered model of care, focusing on improving the
quality of remaining life, and developing clinical models and programs designed
to support such discussions earlier in the health care process.
Interpersonal Communication Skills
An assumption in the field is that the quantity and quality of end-of-life
discussions can be improved by teaching communication skills to health care
professionals working in end-of-life care.35
There is agreement that outcomes in end-of-life care are strongly related
to communication between clinicians and patients, and numerous training programs
exist to address skill deficits.
The American Medical Association has produced an extensive training
program: Education for Physicians on End-of-life Care (EPEC).36
The program teaches communication skills that are critical to a wide spectrum
of end-of-life conversations. The standardized core EPEC curriculum teaches
fundamental skills in communication, ethical decision making, palliative care,
pain and symptom management, and other end-of-life treatment issues. The EPEC
curriculum addresses the gap in training for care of the dying in medical
education.37 Other palliative care educational
programs for medical students and practicing physicians have been developed.35,38-42
Specific end-of-life discussions are targeted by other training programs.
Buckman and Kason1 present a guide for breaking
bad news, with a detailed discussion of skilled responses and guiding principles
for physicians in these situations. They offer guiding principles to physicians.
For example, when responding to despair, clinicians are advised not to promise
anything they cannot deliver, to always allow the patient to express his or
her despair, and to reinforce that the patient will not be abandoned.1(p146)
Specific recommendations for more effective end-of-life discussions
with patients and family members can help physicians in their daily practice.
Lo et al43 stress the importance of active
listening and empathy as the physician assesses symptoms, family issues, and
spiritual concerns, when voiced. A simple question directed at specific end-of-life
issues and followed by active listening responses (eg, follow-up questions
or paraphrases that use some of the patient's own words) is often most effective.
They suggest asking questions that can be helpful if appropriately timed:
"How is treatment going for you and your family?" "What has been most difficult
about this illness for you?" "As you think about the future, what is most
important to you?" "Is faith (religion, spirituality) important to you in
this illness?" Lo et al also emphasize the value of gently sustaining a focus
on palliative care while disease-remitting treatments continue.
We have suggested44 a framework for initiating
appropriate end-of-life discussions that respond to the realities of advancing
illness and changing treatment goals that includes (1) focusing on the patient's
unique experience of the disease and the patient's decision-making process
by asking such questions as, "Can you tell me about the history of your illness?"
"What do you understand as your treatment options?" and "What are some of
the concerns you have at this time?"; (2) helping the patient to confront
fears and take control by asking, "What, if anything, are you worried about
or afraid of?" "If you've lost family members or other loved ones, how did
they die, and what was that like for you?"; (3) addressing practical issues,
including advance care planning and family communication by asking, "What
practical problems is your illness creating for you?" "Are there any family
members or loved ones who need to know what's going on?"; (4) shifting to
a palliative focus in care at the appropriate time by refraining from saying,
"There is nothing more I can do for you," and instead saying, "There is a
lot I can do for you at this time to control your pain, keep you comfortable,
and help you live each day to the fullest extent that you can"; and (5) helping
the patient to achieve a peaceful and dignified death by responding, "Sometimes
people want to be sure to say good-bye to the people they love. If that is
something you feel a need to do, how might you do that?" or "Are there any
incomplete aspects of your life that you want to bring some closure to?"
The question of how to sensitively implement end-of-life conversations
earlier in the process of advancing illness remains a pivotal challenge. For
example, discussing palliative care issues while disease-remitting treatments
are continued without creating a perception of abandonment requires the utmost
empathy and skill.43 A more refined assessment
of how both patient and physician view the current medical plan (curative
vs uncertain vs palliative) could provide the guidance needed for the content
and timing of end-of-life conversations.
Advance care planning is the most widely discussed and studied of all
end-of-life conversations. Although many strategies are currently used to
increase completion rates among the general public and patient populations,
fewer than one quarter of patients have an advance directive.5
Although discussion and documentation of advance directives is a critical
end-of-life conversation, it is just one of the many end-of-life conversations
needed to adequately prepare patients for the predictable problems advancing
illness presents. Zuckerman and Wollner45 suggest
reconfiguring the advance planning model because it focuses almost exclusively
on what should be avoided (cardiopulmonary resuscitation, feeding tubes, ventilator
use), not on "what can be anticipated, planned for and embraced, in a positive,
proactive way."45(p99) For example,
in end-of-life discussions, physicians could focus on foreseeable mental status
changes, anticipated pain, or other symptoms that might require palliative
care, as well as anticipated changes in functional capacity. Optimal end-of-life
care requires open dialogue and direct attention to emotional issues and frequently
avoided topics.43,46 Although
people want varying amounts of information about their health care and levels
of involvement in their treatment,47-49
all deserve the opportunity to prepare for—and cope with—the realities
of advancing illness.
Finally, quality end-of-life care and conversations must be family-centered
and address the complexities of working with both patients and their loved
ones. Rothchild4 discusses the range of family
responses to decision making on withholding or withdrawing life-sustaining
treatment. Physicians are encouraged to involve family members as early as
possible, to keep explanations as simple as possible at each step until more
detail is needed, to keep them informed throughout changes in the patient's
condition, and to share responsibility by recommending a preferred care plan.4(p257) Small group meetings with the family
are recommended. Interventions with children are also called for. Research
indicates improved bereavement outcomes for children if they are prepared
for a sibling's death.50
Physicians are uniquely responsible for breaking bad news and must strive
to engage patients and family members in expanded conversations at the end
of life. However, no matter how dedicated and interpersonally skilled physicians
are, the family, spiritual, ethical, cross-cultural, practical, and existential
issues that rapidly rise in importance in end-of-life care will present formidable
challenges to their time and expertise. Other professionals (nurses, social
workers, clergy, psychologists) can, and perhaps must, play key roles in facilitating
these diverse conversations. In addition, a new professional role in health
care might be called for that includes responsibility for orchestrating and
documenting end-of-life conversations. The person in this role (a nurse or
social worker) could work under the physician's direction and could supplement
the physician's ongoing end-of-life discussions with the patient. A recent
review of best practices in chronic illness–coordinated care highlights
the potential of such a model for the integration of care fragmented by setting
or provider and its potential for raising the overall quality of health care51; coordinated care for advanced illness and end-of-life
care might show similar results.
End-of-life conversations are supported by medical practice that is
patient-centered.52,53 Research
and theory on effective interpersonal care are identifying elements of patient-centered
medicine characterized by mutual-participation relationships that encourage
informed choice and patient autonomy. At the heart of the patient-centered
approach is the need to understand the meaning of the illness for the patient,
a central goal of any whole-person approach to end-of-life care.54
Roter and Fallowfield46 see patient-centered
medicine as broadening the biomedical view to one that "sees through the patient's
eyes" and appreciates the web of relationships and contexts within which a
patient suffers. This approach recognizes that it is the patient who must
ultimately make the decisions that will determine the outcomes in his or her
life; it seeks to empower the patient to make the best choices, given his
or her values and needs. Key to a patient-centered clinical method is responding
in a way in which patients sense that their ideas, feelings, expectations,
and fears are understood54—essential
elements of all end-of-life conversations. Patient-centered communication
skills are also essential to physicians because they enable physicians to
develop the positive relationships and emotional connections with patients
that predict physician satisfaction.46
Successful end-of-life conversations help patients and family members
overcome the "collapse of personal efficacy"55(p302) and loss of a sense of control that frequently accompany the
diagnosis of serious illness. The beliefs people have about their capabilities—their
self-efficacy beliefs—are critical determinants of the goals they pursue
and the control they are able to exercise over their environments.55 In end-of-life care, clinical interventions can be
viewed as strategies for enhancing patients' self-efficacy for coping with
advanced illness and dying.56 Key coping tasks
facing patients with advanced illness can be assessed, such as coping with
treatment-related adverse effects, maintaining a positive attitude, and seeking
and understanding medical information.57 Other
tasks for the end of life, such as reconnecting with one's family, making
funeral and/or burial plans, or finding meaning in the dying experience, can
be conceptualized within a framework of life-long human development that helps
physicians anticipate the issues patients might be struggling with but that
could be overlooked if the patient's distress is the sole focus.10
The view that we can cope better or less well with death and dying is
relatively new to our culture. In the past, coping with advanced illness and
dying has typically been viewed as a crisis that overwhelms normal coping
processes and precludes notions of "manageability." This shift in perspective,
combined with public and community awareness efforts presenting a different
image of dying, is an essential element in the evolution of end-of-life conversations.
A Focus on Quality of Life at the End of Life
A shift toward a quality-of-life focus is occurring throughout medicine
and is part of the patient-centered model of care. In this approach, clinicians
respond to issues of greatest importance to patients and their families. It
is known that bereaved family members express dissatisfaction with end-of-life
discussions and pain control and that they would like physicians to have a
greater bedside presence. Research shows that patients and families tend to
value clear communication about the patient's condition, effective symptom
management, preserving autonomy and a sense of control, avoiding prolongation
of dying, minimizing burden to one's family, strengthening relationships with
loved ones, attending to issues of spirituality, and attention to site of
death.58-60 Clearly,
a broad spectrum of discussions is essential to successful end-of-life care
that is responsive to these quality domains. Reviewing their survey findings
on quality end-of-life care, Singer et al59(p167)
suggest that clinicians ask themselves: "Am I adequately treating pain and
other symptoms?" "Am I inappropriately prolonging dying?" "Am I helping patients
achieve a sense of control, relieve burdens on their families, and strengthen
relationships with loved ones?"
A focus on human development during the crisis of advanced illness and
dying has recently been articulated in the end-of-life literature.10,26,61 Growth in these contexts
consists of successful adaptation and shifts in personal experience toward
peacefulness and a sense of wellness.10 Dying
well cannot be ensured. However, it is crucial for clinicians to recognize
that personal growth can occur during life's final stage and that it is valued
by patients and their loved ones. With meticulous symptom management, opportunities
for personal development can be preserved. By gently exploring issues of most
importance to patients and families and by skillfully guiding opportunities
for interpersonal communication and self-determined life closure, clinicians
can facilitate this developmental process for patients and their families.
Innovative Programs and Models for Enhancing End-of-Life Conversations
Skillful, patient-centered, and comprehensive end-of-life care may be
necessary, yet not sufficient, conditions for the enhancement of end-of-life
conversations. Models of clinical care that support these discussions and
extend their impact may also be needed. The Study to Understand Prognoses
and Preferences for Outcomes and Risks of Treatments (SUPPORT) investigators
underscored this when they concluded their seminal report with a call for
more "proactive and forceful" interventions.12
A search for more forceful clinical models for implementing end-of-life conversations
that occur earlier in the care process and that are better integrated with
host institutions62 has led to a variety of
expanding palliative care services, including: palliative care centers of
excellence, hospice consultation teams,63 prehospice
and care management programs,17 advance directives
efforts,6,31,64,65
models for facilitating structured end-of-life conversations,3,14,44
and advanced illness coordinated care programs.66
This overview of the evolution of end-of-life conversations points to
several conclusions. First, where culturally appropriate, end-of-life conversations
should become a routine part of health care delivery. They cannot be initiated
solely in response to disclosures by patients because patients and health
care professionals tend to avoid these uncomfortable discussions.
Second, structured and content-based interventions are needed to ensure
that critical aspects of the patient's physical, psychological, and spiritual
experience are not excluded from care. A more seamless transition from curative
to palliative care can be effected when end-of-life conversations occur within
a patient-centered model of care and a framework of anticipatory care planning
that strengthens patients' and family members' sense of control and personal
efficacy.
Third, because these skills and topics receive little attention in medical
and nursing training, health care professionals require additional training
in conducting end-of-life conversations. The emotional and time demands of
these discussions must be acknowledged and addressed in clinical training
and practice.
Fourth, our review of the literature on end-of-life conversations suggests
that no single health care professional can successfully undertake all aspects
of this challenge. The necessary discussions can draw on the expertise of
several disciplines, and the creation of a new professional role specializing
in this area might be considered.
Fifth, advance care planning must be viewed not as a final outcome but
as one component in a series of ongoing conversations that together can assist
the patient with advanced illness to approach death in accord with his or
her own values and wishes.
Sixth, randomized trials examining new approaches and models for enhancing
end-of-life conversations must be conducted. These trials would include measures
of the frequency and quality of end-of-life discussions, perceived control,
quality of life, and pain management. Combined with a cost-benefit analysis,
they would provide the data needed for a reimbursable end-of-life care management
strategy.
Finally, extensive community awareness and educational programs are
needed to lay a foundation for successful end-of-life conversations in advanced
illness.67 As Field and Cassel13(p265) note, "It seems that this nation has not yet discovered how to
talk realistically but comfortably about the end of life, nor has it learned
how to value the period of dying as it is now experienced by most people."
As a nation, we must move from a stance characterized by avoidance and powerlessness
to one in which this most significant life event is approached with the same
kind of planning, emotional preparedness, sense of efficacy, and active involvement
that we strive for in other domains of life. The evolution of conversations
at the end of life may hold the key to this transition.
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