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FAQ about End-of-Life Experience and Care The Four Things That Matter Most Landmarks and Taskwork for the End-of-Life Promoting Excellence in End-of-Life Care
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| DyingWell.org |
Beyond
Symptom Management:
Physician Roles and Responsibility in Palliative Care
Ira
Byock, MD; Arthur Caplan, PhD; and Lois Snyder, JD,
for the American College of Physicians - American Society of Internal Medicine
End-of-Life Care Consensus Panel,
2001
Objective
The goal of the American College of Physicians-American Society of Internal
Medicine End-of-Life Care Consensus Panel is to identify clinical, ethical, and
policy problems in end-of-life care where improvement is needed, to analyze
critically the available evidence and guidelines, and to offer consensus
recommendations on how to improve care of the dying.
Its focus is providing practical clinical and other guidance to
clinicians who are not specialists in end-of-life care.
This paper on the goals of palliative care provides a context for
examining and improving end-of-life care by focusing on what palliative care is
and the role and responsibilities of the physician in good palliative care.
Participants
The Consensus Panel was convened in 1997 and is comprised of 13 national medical
and bioethics experts, clinicians and educators in care at the end of life. Experts were selected by the ACP-ASIM. Meetings of the group have been supported by the Greenwall
Foundation.*
Evidence
A literature review including a MEDLINE search and review of the end-of-life
care literature and organizational bibliographies was conducted.
Unpublished references and sources
identified by participants and clinical anecdotal experience were also
considered in the development of the statement.
Consensus Process
A draft paper based on a synthesis of the best of the above evidence was
developed by panel and staff authors and debated at committee meetings by the
full panel through numerous revisions until consensus was reached among all
panel members. The paper was then
subjected to outside peer review, review by generalist physicians who do not
consider themselves expert in palliative care, and additional revision before
the journal peer review process. Papers
developed by the Consensus Panel are also reviewed and approved by the
College’s Ethics and Human Rights Committee, although they are not official
policy of the College.
Conclusions
Caring for people as they live with eventually fatal illness is a central role
for the physician. Palliative care
integrates medical expertise and an interdisciplinary team approach to care for
patients and their families. Beyond
pathophysiology and management of symptoms, palliative care is focused on
alleviating suffering and improving quality of remaining life.
Palliative measures must not be withheld until disease-oriented therapy
fails or until death is imminent. Early attention to symptom relief,
individualized patient advocacy and care coordination, and support for coping
with illness-related disability and issues of life completion and life closure
are within the realm of palliative services to which physicians can contribute.
When neither cure nor significant longevity are possible, physicians can
strive to ensure comfort and enhance the quality of life and experience for
patients and families.
The
Role of the Physician in Caring Beyond Cure
Chronic
illnesses are now the most common causes of death.[i]
For many patients, medical care can slow the course of the illness and improve
quality of life. But as illness advances, continued life-prolonging
interventions can impose increasing burdens and offer diminishing returns.
Often, there is no clear point of transition. The lack of reliable physiologic
markers for determining when a patient is “dying” remains an obstacle to
research and policy development to improve end-of-life care.[ii]
[iii]
[iv]
[v]
[vi]
Despite
the inherent uncertainty of identifying when precisely patients are approaching
life’s end, physicians must provide care that meets recognized clinical
standards and responds to the needs of patients.[vii]
Caring for people approaching death will always draw on the art and humanity of
the practitioner. The responsibility of ensuring excellent medical care for the
dying patient lies with the attending physician.
Recent
studies have documented serious deficiencies in access to and quality of care in
the months, weeks and days before death.1 [viii] [ix]
[x]
Correcting deficiencies and raising practice standards and expectations within
the professional culture, and developing improved models for end-of-life care
delivery, are important challenges.
The
Principles and Practice of Palliative Care
In practice, the
transition from life-prolonging to palliative treatment is often gradual and may
only be recognized in retrospect. The anonymous 16th century aphorism, “To
Cure Sometimes, To Relieve Often, To Comfort Always,”[xi] describes an integrated continuum of care
that sets a standard for physicians and the health care system to meet.
In providing treatment to enhance comfort and support to improve quality
of patients’ lives, physicians who care for patients with progressive illness
routinely incorporate a palliative approach to care within their range of
practice.
In
current usage, "palliative care" also refers to an area of distinct
practice delivered by clinicians with particular expertise and by specialized
teams, such as hospice programs or hospital-based palliative care services.[xi] In the United
Kingdom, palliative medicine has formal status as a medical specialty.
In the United States, the Institute of Medicine recommended,
“Palliative care should become, if not a medical specialty, at least a defined
area of expertise, education, and research.”1
Whether the term is used to connote a general approach or refer to
an area of specialized practice, palliative care does not represent a departure
from the tenets of general medicine. It is, instead, distinguished by its strong
emphasis on specific principles, such as alleviation of suffering, symptom
management, good communication, and supportive counseling related to illness,
disability and limited prognosis.
Specialized
programs of palliative care rely on an interdisciplinary team model comprised of
professionals and trained volunteers.[xii]
Each member of the team brings particular skills and areas of emphasis.[xiii]
Within this interdisciplinary team dynamic, the physician’s area of
concentration includes symptom management, as well as continued, appropriate
application of disease-modifying therapy. The
person with his or her family as the focus of care with “family” being
operationally defined as the people who most matter to the patient, and for whom
the patient matters. Dying is
regarded as an inherently difficult, but normal, stage in the life of
individuals and families. In contrast to problem-based medicine, a patient need
not have acute or active “problems” to warrant evaluation and intervention.
A diagnosis of progressive, incurable illness or any constellation of medical
problems that result in progressive disability or an eventually terminal
prognosis are indications for palliative care. By identifying quality of life as
a central focus, attention is shifted to patients’ subjective experience.
During the initial period of bereavement, typically through the first
anniversary of the person’s death, palliative care offers support for the
family and screens for instances of complicated grief requiring referral for
formal counseling.
Table 1. Precepts of Palliative Care [xiv] [xv] [xvi]
-
Ethical decision making that respects patient autonomy and the role of family or legal surrogates
-
Interdisciplinary team approach to care
-
Patient with his or her family as the unit of care
-
Effective and (when necessary) intensive symptom management
-
Dying understood as a time of life; improving quality of life is a primary goal
-
Recognition of the importance of the “inner life” of the person
-
Bereavement support to family during initial period of grieving
Specialized
palliative care services and programs expand the resource base and complete a
full spectrum of essential health care services.[xvii]
In the United States, hospice is the best known delivery model for
palliative care. The most
experienced and skillful hospice programs provide a “best practice” standard
against which to assess the quality of palliative and end-of-life care.[xviii]
Relief
of physical distress is the first priority for palliative care. Symptom
management requires an organized, ongoing approach that is careful,
comprehensive and, when necessary, intensive. Pain is a cardinal symptom
associated with late-stages of cancer, advanced HIV infection and progressive,
crippling diseases. However,
dyspnea, nausea, profound weakness and delirium are all common sources of
physical distress among dying patients.[xix]
[xx]
[xxi]
Specialists in medical and radiation oncology, anesthesiology, neurology,
surgery and neurosurgery commonly contribute to the team process of palliative
care. The “intensive” nature of symptom alleviating interventions -- such as
neurolytic blocks for unrelenting neuropathic pain or sedation for management of
otherwise uncontrolled terminal agitation -- is properly limited only by
patient-imposed restrictions.
Suffering
for the dying patient often extends beyond physical distress, involving
emotional, social and spiritual dimensions.
As function wanes and the activities, roles and responsibilities that
have given life meaning fall away, a sense of impending disintegration and loss
of meaning may be experienced.[xxii]
[xxiii]
Clinicians caring for patients who are struggling with issues of life closure
best serve the dying person and family by staying involved, listening, and
expressing a willingness to support the person in exploring his or her own
answers.[xxiv]
Sources of emotional and spiritual distress can be acknowledged, assessed and
effectively responded to without requiring the assignment of psychological
diagnoses. Beyond alleviation
of physical symptoms and psycho-emotional distress, physicians can help patients
to live as fully as possible and complete tasks they identify as most important
during this poignant time.
Illustrative Case: A 67-year-old attorney with non-small cell lung carcinoma, metastatic to the brain
Mr. Baker is a
67 year old attorney. Ten months ago he noticed a subtle change in right-sided
fine motor control while writing. When his secretary questioned his signature on
a letter, he made an appointment with Dr. Jones, his internist. During that week
he also became aware of intermittent difficulty with word searching. Dr. Jones
noted slight right sided weakness. An MRI revealed a 2.5 cm left
parietal-temporal lesion and a smaller left posterior lobe lesion. Chest x-ray
showed a solitary left upper lobe nodule. A transbronchial needle biopsy
confirmed the diagnosis of non-small cell lung carcinoma, metastatic to brain.
Whole
brain radiation was promptly begun and tolerated without problems. Mr. Baker's
neurologic symptoms rapidly resolved. A consulting medical oncologist presented
the risks and potential benefits of combination chemotherapy for his condition.[xxv]
[xxvi]
Mr. Baker decided against chemotherapy.
Mr.
Baker has continued to see Dr. Jones for monthly checkups.
He has not had further focal neurologic symptoms or acute problems;
however, gradual weight loss, diminished energy and exercise tolerance have
slowly progressed.
Four
days ago Mr. Baker developed significantly increased low back pain and two days
ago noted bilateral weakness in his legs. Contacted
by phone, Dr. Jones sent Mr. Baker to the emergency room of the University
hospital where he is evaluated by Dr. Young, a first year resident.
After
discussion with Dr. Jones, morphine is given for immediate comfort and Mr. Baker
is admitted. Dr. Young elicits a
report of recent onset of urinary incontinence and “numbness” in his feet
and examination uncovers 3 over 5 lower extremity weakness, abnormal plantar
responses and diminished rectal sphincter tone. An emergency MRI reveals
impending lumbar spinal cord compression due to a metastatic lesion, and an
additional mid-thoracic vertebral metastasis. A bone scan details another
probable lesion in his right proximal femur.
High dose intravenous dexamethasone is administered. Urgent neurosurgery
and radiation oncology consultations are obtained and, following discussions
with Dr. Jones and Mr. Baker, local radiotherapy to the vertebral metastases and
the femoral lesion is begun on an emergency basis.[xxvii]
Mr. Baker’s pain rapidly improves and neurologic symptoms stabilize. But lower
extremity weakness persists.
Mr.
Baker wants all available information and makes his own decisions. Each day Dr.
Jones and Dr. Young review the latest test results with him. Dr. Jones answers
all his patient’s questions in non-technical terms. He suggests that it is now
time to consider involving the hospice team in his care. Mr. Baker initially
bristles, “Are you giving up on me doctor?” and then bluntly asks how much
longer he has to live. Dr. Jones assures Mr. Baker that he is not going to stop
caring for him and responds that, while it is always difficult to estimate with
certainty, his life expectancy is probably weeks to at most a few months.
During the conversation, Mr. Baker reluctantly agrees to a hospice
referral.
During the intake interview with the hospice nurse case manager and
social worker, Mr. Baker’s living situation and social history are reviewed.
His law practice has always consumed most of his time. He has been divorced
twice and lives alone. He and his
first wife, Margaret, maintain contact. Their three children live out of state.
A son and eldest daughter are each married with young children, and a younger
daughter attends graduate school. Mr.
Baker's strongest wish is to stay at home until he dies.
Mr.
Baker is transferred to a rehabilitation unit while receiving daily radiation
therapy. Oral long-acting morphine controls his back pain. Baclofen is started
for leg spasms and lorazepam is available for intermittent anxiety. Occasional
nausea is treated with perchlorperazine.[xxviii]
Dexamethasone is tapered and prednisone 20mg per day is begun as an adjunct for
analgesia and to improve appetite and general well-being.[xxix] Physical
and occupational therapy are begun, including transfer skills and the use of
assistive devices so that Mr. Baker can continue to dress and toilet himself.
Mr. Baker complains little. His most serious symptomatic distress occurs when, due to an oversight, no bowel regimen is prescribed and constipation is overlooked for five days, resulting in painful abdominal cramps. Multiple enemas and digital disimpaction resolve the problem. Mr. Baker tells Dr. Jones the experience is an assault on his dignity. Thereafter, stool softeners with stimulant laxatives are prescribed for routine use and doses of oral sorbitol adjusted on a daily basis. [xi]
Mr.
Baker’s children arrive from out of town.
Prior to discharge a family meeting is held.
Margaret agrees to participate in his care. Hospice volunteers are
assigned to help with household chores, errands and transportation.
Dr.
Jones asks the hospice nurse to administer a quality of life survey designed to
assess the subjective experience of patients with far-advanced illness.[xxx] Mr.
Baker’s responses suggest feelings of guilt and low self-worth. These issues
are explored by the hospice social worker and in sessions with the hospice
chaplain in which, to his family’s surprise, Mr. Baker shows great interest.
During
a second family meeting, Mr. Baker and his children talk openly about their
disappointments and fears. Mr.
Baker asserts that, despite his law career, in his heart his children have
always been most important to him.
In
the weeks that follow, the family spends considerable time visiting. Generalized
weakness progresses and Mr. Baker is bed bound. At the chaplain’s suggestion,
with help Mr. Baker tapes several hours of stories from his childhood as a gift
to his grandchildren.
On
one visit in which Dr. Young is present, Dr. Jones asks Mr. Baker if he feels
there would be anything left undone, if he were to die suddenly. After a moment
of thought, he smiles wryly and responds, “Oh, I’d like to live twenty more
years, but the truth is that everything is in place.”
Two months after coming home, Mr. Baker abruptly becomes
confused and unable to speak or swallow. Emergency evaluation by the hospice
nurse confirms increased right sided weakness. In phone consultation with Dr.
Jones, the symptoms are attributed to a probable intracranial hemorrhage or
other cerebral-vascular compromise. Consistent with Mr. Baker's wishes and the
plan of care, no diagnostic workup is initiated. Oral medications are
discontinued. A low-dose subcutaneous morphine infusion is administered, to
replace oral narcotics, providing for continued analgesia and preventing
possible withdrawal symptoms. Additional rescue bolus doses are prescribed pro re nata for signs of discomfort such as grimacing or muscle
stiffening on turning. A small dose
of subcutaneous midazolam is administered by continuous infusion as an
antispasmotic, an anxiolytic and as prophylaxis for possible seizures.[xxxi]
[xxxii]
Dr. Jones is unable to visit but calls Margaret, inquiring about Mr.
Baker’s status and level of comfort, and reviews the current plan of care and
orders with the on-call hospice nurse.
The
family gathers at the home. Mr. Baker is mostly somnolent, although he
intermittently becomes alert, acknowledging his family. He is often touched, his
hand held and his skin cleansed or oiled while family members talk.
They each say goodbye. Mr.
Baker dies quietly the next morning with his family present.
Dr.
Jones is out of town the day of the memorial service, but sends a condolence
card. He encourages Dr. Young to attend. During a eulogy given by Mr. Baker’s
son, Dr. Young is moved to be acknowledged by name.
Dr.
Young confides to Dr. Jones that this case has been one of the most profound
clinical experiences he has had. Later that spring, Dr. Young arranges to spend
a full day attending the hospice interdisciplinary team meeting and making
rounds with Dr. Jones. He is surprised by the range of diagnoses among the
hospice patients, including several with advanced emphysema and congestive heart
failure, two with far advanced dementia, and a patient with renal failure who
had just stopped dialysis. Dr.
Young remarks about the appreciation expressed by patients and families for the
importance of this time in their lives. He
decides to take a month-long elective hospice rotation in his third year.
Six
months after Mr. Baker’s death, the hospice team continues to make
intermittent contact with Margaret and his children. Margaret has joined a
bereavement support group.
Discussion of Case
Mr.
Baker was fortunate to have a physician who knew him well, was adept at
palliative interventions, and who recognized an important role in supporting
patients at the end of life. Medical
house staff frequently encounter patients who have lacked consistent medical
care prior to an acute hospitalization. Within
the context of bedside and specialty rounds, attending physicians typically
focus on the disease modifying treatment and, to an increasing extent, on
symptom management. Living situations of patients and families may only be
assessed to the extent they impact discharge planning and patient placement.
Within teaching hospitals, medical direction for incurably ill patients’ care
may be delegated to interns and resident physicians.
Patients discharged to nursing homes commonly have primary care
transferred to physicians covering the receiving institution.
In
current practice, the subjective experience of dying patients or their families
may only become a priority for treating physicians when suffering gives rise to
disruptive or otherwise demanding behavior. Over-reliance on a problem-based
approach can lead to an unfortunate constriction in scope of physician practice.
To confine medicine’s focus to physiologic interventions is to limit
the art, and heart, of medicine. A
physician who avoids imposing a “hospice philosophy” on patients in order to
maintain a value-neutral therapeutic stance is mistaken. Although palliative
care is value-laden, it is not more so than are prevailing modes of disease
modifying treatment. Limiting patients’ choices constrains their ability –
and right – to make autonomous decisions.
As the case illustrates, life-prolonging and palliative care need not be an “either-or” choice. At the time of diagnosis, no curative treatment was available for Mr. Baker. Care continued; when symptoms developed, prompt diagnostic workups were conducted, consultants were involved and appropriate disease modifying and symptomatic interventions promptly begun. Life-prolonging and comfort measures were provided concomitantly, reflecting the concordant nature of these goals. Mr. Baker’s authority to make final treatment decisions was respected.
Dr.
Jones’ plan of care extended beyond ensuring that his patient was fully
informed and providing meticulous symptom management. He directed an organized
assessment of the impact of physical discomfort, functional limitations and
awareness of death’s approach on Mr. Baker’s emotional well-being and his
subjective quality of life. He provided anti
Dr.
Jones helped Mr. Baker identify “things left undone” and identify meaningful
and realistic goals. He listened. He
related stories of previous patients and families who had used similar times to
express mutual forgiveness and reinforce their appreciation and affection for
one another, and similar opportunities for closure.
When
Mr. Baker was admitted to hospice, the hospice nurse assumed the role of case
manager. Dr. Jones retained
leadership of his patient’s health care team and final authority for his care.
Dr.
Jones was conscious of the learning opportunity that Mr. Baker’s care afforded
Dr. Young. In his role as clinical instructor, he provided Dr. Young with
information and the reasoning behind appropriate symptom alleviating medications
and interventions. He modeled
skills in communication, including listening.
In treatment and in counseling, Dr. Jones conveyed to Dr. Young the
importance of caring for patients as they die. These are important aspects of
the role of clinical instructors and warrant consideration in processes of
advancement for academic physicians.
Not all patients are as receptive to this type of care and support as Mr. Baker and his family. And not all cases are as well managed. Barriers to providing good palliative care exist.
Table
2: Barriers to Palli
-
Time limitations
-
Barriers within the culture of medicine
-
Life-prolonging and curative orientation of medicine
-
Death as a "bad outcome"
-
Clinical barriers
-
Prognostic uncertainty
-
Insufficient knowledge and skills
-
Inadequate prescribing for pain control
-
Inadequate physician-patient communication
-
Ethnic, cultural and religious challenges
-
Legal, regulatory, procedural and financial barriers
-
Education and training deficiencies
Perhaps the most obvious barrier encountered by busy physicians is too
little time to do all that they would like to for patients and families.
Excellent palliative care requires more than knowledge of symptom
alleviation and basic counseling skills; it requires time to impart information
as well as time to listen. Meaningful communication regarding matters of dying
and options for care requires time to explore whatever questions patients and
family members may have.
Our societal tendency to avoid the subjects of dying and death
is another barrier to communicating with and counseling people who suffering
emotional, psycho-social or spiritual distress related to advanced illness.
The life-saving orientation of mainstream medicine also tends to
reinforce a denial of death.1 Physicians may be
reluctant to refer to palliative care and hospice programs fearing that patients
will interpret the suggestion as abandonment, as Mr. Baker initially did.
Patients and families may be reluctant to accept a referral, viewing it as a
loss of hope.
Rather
than conflicting, the cultural differences between life-prolonging and
palliative care can effectively complement one another. For many patients and
families, relentless disease progression and increasing disability
gradually erode denial of the approach of life’s end.
As with Mr. Baker’s appreciation of the hospice chaplain’s visits,
interest in and openness to addressing issues of meaning or spiritual
connection often surprises those who knew the patient well before illness. When
life-prolongation is exclusively pursued, a discrepancy can arise between
clinicians’ goals and plans of care and patient-centered priorities.
Physicians who, for instance, assume that mundane details of bathing and
transportation or psychosocial tasks are not their concerns, may neglect the
needs that patients may feel are most important. Physicians may miss
opportunities to suggest involvement of consultants and valuable resources --
such as home health aides, social workers, and clergy -- and leave patients and
families feeling unsupported in the very issues that most affect their quality
of life.
Problems
related to health care systems, logistics and even financing often can be
alleviated by individualized, case-by-base advocacy and coordination.
These services are, themselves, time-intensive. While physicians can
assist in these efforts, care management is often overseen by a primary nurse or
social worker. Clerical staff also may help patients gain access to needed
services and coordinate visits, transportation and home-based care.
Working
in their own health systems and communities, physicians can view these barriers
as opportunities for institutional and programmatic quality improvement efforts.
Collectively, the medical profession can provide leadership by reducing barriers
to excellent, inclusive care for dying patients and their families through
professional education, research, clinical quality improvement, policy
development, and participation in public education and advocacy.
Preservation
of Opportunity: A Clinical Role and Responsibility
Although
symptom management and relief of suffering are the first priorities for
palliative care, they are not the ultimate goals. The experience of living with
progressive illness impacts every dimension of a person’s life: physical,
social, emotional and spiritual. Consistent with ethical tenets of medicine,
patient and family priorities properly guide treatment priorities reflected in
the plan of care. To avoid
interfering with important, poignant and potentially meaningful time in the
lives of dying patients and families, whenever possible, expediency in the
scheduling of medical tests and delivery of treatments should be subordinated to
the personal goals of those being served. Medication
schedules can be adjusted, home-based services initiated and care coordinated
among local providers. In hospital and ICU settings, deliberate attention is
warranted to minimize blood draws and x-rays and related intrusions and
distractions. Routine measures, such as daily weights, measurement of intake and
output, cardiac and oxygen saturation monitoring, blood pressure readings, which
no longer contribute to an individual patient’s current clinical priorities
and goals, may be discontinued. Meals need not be delivered to patients who are
not eating. A sign on the door, alerting visitors to check with the patient’s
nurse before entering, can help preserve a semblance of intimacy for a
hospitalized patient and family.
Dying
from a progressive illness presents opportunities for reminiscence and
life-review that can facilitate life completion.[xxxv]
[xxxvi]
[xxxvii]
[xxxviii]
Patients and families can be aided in using activities to deepen a sense of
meaning about the life lived. Story
telling can be more than a pleasant pastime, becoming a means to transmit
one’s special knowledge and wisdom to others.[xxxix] Families of patients with advanced, incurable
illness can benefit from the chance to express their love in words and through
the care they provide. For the
patient who desires spiritual exploration, palliative care providers can
acknowledge and encourage the process. Patients are well served by clinicians
who are willing and able to remain emotionally involved, visiting as time
permits, if only to listen in a non-judgmental manner.
Barriers
to Satisfactory Life Closure
While
a number of valuable opportunities exist during the time of living identified as
“dying,” they are just that-- opportunities. Developmental assessments must
not, however, become criteria on which a patient or family’s worth is judged.
Some issues of personal and family history will not lend themselves to
forgiveness and extremely difficult clinical or social situations may afford no
chance for introspection or the intimate communication required for
reconciliation. Sudden death, critical care settings, severe, uncontrolled
symptoms, serious family dysfunction, social circumstances, poverty or
psychosocial problems all represent significant challenges to satisfactory sense
of life closure.
Table 3: Barriers to Satisfactory
Life Closure
|
Severe
Uncontrolled Symptoms |
Physical
distress, when extreme, captures the attention of the sufferer and those around
him. Severe pain, dyspnea or nausea robs people of opportunities for reflection
and communication. While the capacity for reminiscence may be preserved in early
dementia, the cognitive failure of agitated delirium or far-advanced dementia
obviate tasks such as life review.
|
|
Poverty
|
Problems
of housing, transportation, inadequate medical care for family members all can
command time, attention and energy required for achieving satisfactory life
completion and life closure.
|
|
Family
Dysfunction |
Issues
such as child abuse, physical or sexual violence, may prove impossible for
family members to forgive, leaving unfulfilled a dying person’s, or family
member’s, emotional need for forgiveness. |
|
Critical
Care Environments |
The
near-constant activity and noise of critical care settings act as a distraction
and can interfere with the intimacy required for the taskwork of dying. However,
even in the context of intensive care units and emergency departments, work
related to life closure can be undertaken. By acknowledging when death cannot be
forestalled and by respecting the interpersonal, emotional and spiritual
dimensions of life closure, physician leadership can protect the opportunity for
patient and family to say the things that they identify as needing to be
expressed. |
|
Sudden
Death |
The
introspection and communication that underlies and enables people to achieve a
satisfactory degree of completion within their personal affairs and
relationships can be facilitated, but obviously requires time.
While sudden deaths obviate these activities, in situations when life is
fleeting and death is proximate, clinicians can strive to protect and facilitate
critical communication. In such situations, time is not measured in length, but
in depth. |
Clinicians
are challenged to avoid nihilism that can undermine valuable opportunities for
dying patients and families while averting guilt or recriminations within
families when, for whatever reasons, such opportunities remain unfulfilled.
Difficult situations and the myriad sources of suffering that people encounter,
highlight the importance of the collective efforts – and potential synergistic
efficacy – of clinical teams.12
The more complex and troublesome a case becomes, the more pressing
becomes the need for involving the resource of the palliative care team.
Conclusion
When cure is no longer possible and life prolongation is a fleeting goal, the ongoing process of care presents an important and potentially satisfying role for physicians. Working with a team of prepared, committed providers, physicians can practice and model care that integrates life-prolongation with comfort and patient-defined goals. In this manner patients can be helped to live fully and die well.
*
This paper was authored by Ira Byock, MD; Arthur Caplan, PhD; and Lois Snyder,
JD for the ACP-ASIM End-of-Life Care Consensus Panel. Members of the ACP-ASIM End-of-Life Care Consensus Panel
were: Bernard Lo, MD, FACP, chair,
University of California (San Francisco, CA); Janet Abrahm, MD, FACP, University
of Pennsylvania (Philadelphia, PA); Susan Block, MD, Dana Farber Cancer
Institute (Boston, MA); William Breitbart, MD, Memorial Sloan-Kettering Cancer
Center (New York, NY); Ira Byock, MD, Palliative Care Services (Missoula, MT);
Kathy Faber-Langendoen, MD, SUNY Health Science Center (Syracuse, NY); Lloyd W.
Kitchens, Jr., MD, FACP, Texas Oncology (Dallas, TX); Paul Lanken, MD, FACP,
University of Pennsylvania (Philadelphia, PA); Joanne Lynn, MD, FACP, Center to
Improve Care of the Dying (Washington, DC); Diane Meier, MD, FACP, Mt. Sinai
School of Medicine (New York, NY); Timothy E. Quill, MD, FACP, The Genesee
Hospital (Rochester, NY); George Thibault, MD, FACP, Partners Healthcare System
(Boston, MA); James Tulsky, MD, VA Medical Center (Durham, NC).
Primary Staff to the Panel were Lois Snyder, JD (Project Director),
ACP-ASIM (Philadelphia, PA), and Jason Karlawish, MD (Clinical Staff),
University of Pennsylvania (Philadelphia, PA).
This paper was reviewed and approved by the College’s Ethics and Human
Rights Committee and Education Committee, although it does not represent
official College policy.
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[i]
Institute of Medicine, Approaching Death. Washington, DC: National Academy
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[ii]
Brody H, Lynn J. The physician’s responsibility under the new Medicare
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[iii]
Lynn J, Harrell FE, et al. Prognoses of seriously ill hospitalized patients
on the days before death: Implications for patient care and public policy.
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[iv]
Lynn J, Teno JM, Harrell FE. Accurate prognostications of death:
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[v]
Knaus WA, Harrell FE, Lynn J, et al. The SUPPORT prognostic model: Objective
estimates of survival for seriously ill hospitalized patients. Ann Intern
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[vi]
Lynn J, Harrell FE, Cohn F, et al. Defining the “terminally ill:”
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Beyond
Symptom Management:
Physician Roles and Responsibility in Palliative Care
Ira
Byock, MD; Arthur Caplan, PhD; and Lois Snyder, JD,
for the American College of Physicians - American Society of Internal Medicine
End-of-Life Care Consensus Panel
2001