BY: IRA BYOCK, MD
Dr. Byock is director, palliative medicine, Dartmouth Hitchcock Medical
Center, Lebanon, NH.
As the 21st century begins, dissatisfaction with medical care is high and the
U.S. health care system is in need of repair. Costs continue to climb, while
quality is uncertain. Medical errors are rampant.1
Both acute and chronic pain are undertreated, and a public health crisis involves
care of patients with advanced, incurable illness and support (or the lack of
it) for those patients' families. Medical services are commonly viewed as impersonal
and lacking in human values. Too often, relationships among patients, their
professional caregivers, and the health care system verge on adversarial.2
The situation is particularly grave in the realm of end-of-life care. Contemporary
studies of medical care for dying persons and support for their families reveal
many deficiencies.3 Pain among patients with
advanced disease is often inadequately evaluated and treated.4
Communication between doctors and patients often falls victim to a conspiracy
of denial involving patients, their families, and physicians.5
Increasingly, time-pressured clinical encounters make it easy to avoid talking
about the real implications of disease progression and about dying. Absent discussions
of the full range of caring options, the "system default" is to persist with
aggressive life-prolonging treatment as long as possible and at all costs. The
human costs incurred can extend to entail needless physical discomfort and loss
of all sense of dignity for the person dying.6
How Did This Predicament Develop?
Much has been written on the evolution of medical treatment during the 20th
century and the trends which have shaped our current approach to seriously ill
patients.7 However, several key assumptions
and cultural features of clinical practice deserve attention for their synergistic
effect of constricting our care and limiting our ability to perceive a full
range of possible human responses to suffering people and their families.
"Subtractive" Themes in Practice and Biomedical Ethics The principles
of autonomy, nonmaleficence, and distributive justice have dominated clinical
ethics in the 20th century. A corresponding reduction of emphasis on beneficence
has contributed to "subtractive" themes in practice and ethical discourse. This
trend is reflected in the literature, discussion, and debate related to withholding
or withdrawing potentially life-sustaining treatments. Early formative developments
of clinical ethics focused on the sanctity of a person's body and protection
of the body from unwanted intrusion. Landmarks in this trend include Union
Pacific Railroad v. Botsford (1891) and Schloendorff v. New York Hospital
(1914); the Quinlan, Barber, and Cruzan cases; and the report of a presidential
commission and a number of key white papers.8
Each of these court decisions and published statements emphasized principles
concerning patient autonomy and nonmaleficence. Collectively, they established
parameters and guidelines for avoiding or removing treatments that were prolonging
or might prolong life.
Throughout this period, the assumed community standard of medical care has
been maximal life-saving medical interventions. "Doing everything" for a patient
has meant doing anything possible to keep the patient alive. Ethical advocacy
in this context often emphasized protection from unwanted medical interventions,
including the right to refuse surgery, cardiopulmonary resuscitation, mechanical
ventilation, and artificial nutrition and hydration. Similarly, many advances
in clinical ethics have taken the form of carefully crafted guidelines and procedures
for withholding, withdrawing, or refusing medical therapies. Extensions of these
principles have led to broad agreement regarding the role, responsibilities,
and rights of families (or formally named legal surrogates) to refuse medical
interventions on behalf of seriously ill, injured, or otherwise incapacitated
persons.9 Advance directives, developed as
tools for extending an individual's personal autonomy into a possible future
period of incapacity, have been used almost exclusively to refuse unwanted treatments.
In this context, beneficence has been generally understood as saving life whenever
possible; withdrawing treatments when unwanted; and alleviating suffering, especially
when cure is not possible.
As ethical thought evolved, the clinical professions and society as a whole
asserted their rights as stakeholders to participate in decisions regarding
the propriety of medical interventions and the use of limited resources. This
has been reflected in cases and literature related to withholding or withdrawing
life-prolonging medical treatments under the principles of futility or distributive
justice and the responsible allocation of limited social resources. More recent
ethical debate has included questions related to defining categorical circumstances
within which society and the clinical professions may offer less-than-maximal
life-prolonging care.10 Each of these topics
concerns services being reduced, withdrawn, or avoided.
The active debate regarding legalization and social sanctioning of physician-assisted
suicide and euthanasia — the intentional removal of life in service of the
sufferer — may be seen as a logical extension of these subtractive themes
in clinical ethics and care.
To its advocates, physician-assisted suicide represents a new medical service
that responds to the demands of suffering patients, their families, and a public
fearful of suffering. Proponents of legalizing physician-assisted suicide11
and euthanasia12 assert that in certain circumstances
of suffering, pre-empting death is beneficent as well as an extension of personal
autonomy. A countervailing view holds that while beneficence encompasses any
caring intervention, including sedation for otherwise intractable symptoms,
it does not encompass eliminating the sufferer. Intentionally causing
another person's death falls outside the realm of acceptable human interactions,
even in response to suffering. Therefore, actions to preempt death fall outside
the realms of proper clinical practice and biomedical analysis.13
In this view, whether or not death is considered to be in an individual's best
interests or desired by the person him- or herself, the nature of care — reflected
in the definition "to look after, to provide for14
extends to an open-ended future in which death is inevitable but not predetermined.
Opponents of euthanasia and physician-assisted suicide thus enthusiastically
welcome the development of new ways to alleviate suffering.
The "Problem-Oriented Model" of Medicine The "problem-oriented model"
of medicine had its inception in the development of the problem-oriented medical
record. Introduced in the 1970s, this innovative reporting format revolutionized
the manner in which medical care is organized.15
Having heard a patient's chief complaint and made an initial evaluation, a physician
creates what is known as a "problem list" for the patient. The problem list
then serves as a table of contents for his or her medical record. The physician
will approach each identified problem through the collection of subjective
and objective information; for each problem an assessment is made
and a plan of care is developed. This S-O-A-P format of charting shapes
the contemporary clinical encounter. It has emerged as the de facto conceptual
framework for medical care and has inadvertently contributed to a narrowed understanding
of beneficence. Its unintended consequences have rarely been examined.16
Within the prevailing medical model, people come to doctors with problems.
If a person should appear to have no identifiable problem, the physician may
assume that no substantive evaluation or interventions are required. Faced with
an asymptomatic patient, clinicians may well assume that there is nothing to
do, or at least that nothing needs to be done. (In adult medicine, vaccinations
and limited, disease-based screening comprise the extent of nonproblem-oriented
care.) In an era of increasing financial pressures, this approach may at times
provide a convenient rationale for constraining the scope of care. Within this
operational framework, the tacit definition of "health" is the absence
of identified problems associated with illness or injury.
Today an individual patient's plan of care is the aggregate of plans for specified
problems. Active efforts to improve a person's quality of life find no place
in this approach. In mainstream medicine, unless a patient manifests depression
or disruptive behavior, or his or her psychological distress crosses the threshold
of a psychiatric diagnosis described in the Diagnostic and Statistical Manual
of Mental Disorders17, nothing triggers
the health system to act. In general, patients today must earn their doctors'
attention by suffering.
This constraining influence is reflected in the domains and individual items
that comprise commonly used "quality of life" (QOL) scales.18
The items that constitute most QOL surveys, scales, and indices have to do almost
exclusively with symptoms, social and physical function, and independence. Such
assessment tools may deliberately exclude domains of personal experience, even
those of central importance to patients. As a key researcher of QOL assessment
has noted, apparently without irony, "Undoubtedly, such issues as happiness
and life satisfaction factor heavily into an individual's judgment of his or
her quality of life. Yet, these issues are so distal to the goals and objectives
of health care that it would seem inappropriate to apply them as criteria against
which to judge the efficacy of medical interventions."19
This kind of thinking tends to be reinforced by the problem-oriented clinical
model and corresponding QOL assessment tools in common use. Embedded in many
such tools is the assumption that a person's QOL can be improved only in
direct proportion to the extent that pre-illness performance can be restored.
This assumption may be valid for most people during most phases of illness,
but there are important exceptions.
Although the assumed linear relationship between QOL and a person's physical
and functional status may be valid during earlier stages of illness, it commonly
proves to be false in the context of far-advanced illness. Empirical evidence
from clinical narratives reveals that, in the face of death, people can experience
contentment and an ongoing sense of importance, meaning, and value in life despite
considerable discomfort and profound functional limitations.20
As two observers have noted:
From time to time, a terrible event happens to someone, and yet the survivor
finds herself or himself better off. Through injury, a person is rendered
paraplegic, or even quadriplegic; cancer strikes, requiring debilitating chemotherapy
and raising the specter of a shortened life. The person suffering the calamity
transcends the suffering and the loss and finds new meaning in life. Living
becomes a richer, more satisfying experience and, in extreme instances, people
feel that they never really appreciated life until their tragedy."21
One such individual has been described in an early paper concerning the limitations
in QOL assessment.
I shall long remember the young patient who in dying commented that his final
months (which had been characterized by relentless physical deterioration
and considerable suffering) had been "the best year of my life." The day he
made that comment this young athlete, scholar, and executive who had measured
10/10 on the [Spitzer] QL [scale] throughout his life, measured 2/10. Clearly
he was referring to something not embraced by the scales measuring activities
of daily living and not reflected in the Spitzer QL."22
Palliative Care and Pediatrics: Safe Harbors from Problem-Bound Medicine
Two disciplines in contemporary health care have resisted the confining
influence of problem-oriented medicine: palliative care and pediatrics. They
would, at first glance, seem unlikely partners in this resistance. However,
the conceptual frameworks through which the two approach the clinical encounter
are remarkably similar. Beginning as the hospice movement, palliative care in
America was a response to the perception that care for dying patients had become
often ill-considered and inhumane. Hospice in the United States originated outside
the mainstream of health care. In its early years, hospice represented a counterculture
among the clinical disciplines in its approach to care. Hospice advocates alleged
that a technological imperative within medicine resulted in patients becoming
depersonalized objects of medical intervention.
Earlier in the 20th century, a pivotal development in pediatrics had occurred
in response to an epidemic of "hospitalism" (later known as the "pediatric
failure to thrive" syndrome), a devastating condition that resulted in
many thousands of childhood deaths and near-universal, profound retardation
among infants raised in orphanages. The discovery that this syndrome was caused,
not by some toxin or infectious agent but rather by deficiencies in simple human
interaction, gave rise to a mandate for physicians who care for infants to focus
on the whole person of their patients, including patients' families (see
A poignant analogy to the hospitalism occurring in many foundling homes of
the early 20th century can be found in too many 21st century nursing homes for
America's most frail and elderly patients. Sensory and emotional deprivation,
engendered by the sparse physical and psychosocial environments of institutionalized
elders, results in a syndrome of geriatric failure to thrive as stark as that
described by the researchers who discovered hospitalism among foundlings.23
While many factors contribute to the paucity of human interactions that nursing
home residents experience, a pervasive and insidious influence is exerted by
revenue streams for long-term care and a regulatory environment that turn on
documented medical problems — problems that are increasingly tightly defined:
No active problems, no active service.
A nursing home resident's problem list and corresponding routine and as-needed
medications comprise the plan of care. Diagnoses such as high blood pressure,
mild dementia, osteoarthritis, osteoporosis, and benign prostatic hypertrophy
provide the lens for clinical assessment and response.
From this perspective, a nursing home resident's care may appear adequate even
though the person languishes. Since staffing and supportive therapy resources
are in short supply in today's long-term care facilities, physical and occupational
therapies are instituted only when there is a documented medical necessity and
demonstrated potential for rehabilitation. In many long-term care settings,
routine psychosocial screening is minimal. A resident's sense of personal well-being
is not a matter for professional concern unless the person's distress is overtly
expressed as "pain" or through disruptive behavior. Absent medical indications
for specific therapies, residents may remain untouched and unstimulated for
long periods of time and receive attention only when they are wet or it is time
for them to be fed. It is no wonder that people can feel infantilized by the
manner in which they are cared for.24
The meager nature of much nursing home care is widely recognized.25
Many people experience placement in a nursing home as abandonment by their families.
Correspondingly, adult children, while recognizing they had little choice, may
feel guilty about putting a loved one in such a home. It is common to hear someone
describe how a grandparent or parent "seemed to give up" after being admitted
to a nursing home.
While this distressing state of affairs is widespread, it is rarely caused
by either malfeasance or lack of caring. Indeed, even family members who emotionally
describe the withering of a relative often explicitly emphasize that the nurses
and aides were doing all they could.
Insufficient staffing is one root cause of this woeful predicament. No amount
of caring intention can suffice when there is no one to answer a call bell and
help the person to the bathroom; or to sit with a person who is agitated, lonely,
or afraid. Here again, the insidious forces that constrain individuals'
plans of care collectively pare staffing to a bare minimum, or beyond. Each
line item in the budget of an agency, department, or clinical program must be
justified by delineated needs.
Toward a Balanced Approach
Within an ethic of caring, principles of autonomy and protection from unwanted
intrusion can be balanced by giving proportionate weight to the principle of
mutual responsibility. Attention to nonmaleficent avoidance of harm and beneficent
protection from unwanted life-prolonging care must be balanced with reliable
provision for basic needs for shelter, hygiene, assistance with eating, drinking,
It is insufficient to call attention to the pernicious constraints imposed
by prevailing assumptions and trends without also exploring alternatives to
them. Fortunately, such an exploration is supported by empirical data in both
biographical literature and the clinical literature of palliative care. Individual
narratives provide compelling evidence that the human experience with illness
and dying encompasses more than suffering or its alleviation. The narratives
suggest that at times life with illness, even when acknowledged to be terminal,
can be highly valuable for the affected person as well as for those who love
them. Stories about positive aspects of people's experience with dying
challenge us conceptually to expand our understanding of beneficence.
They challenge us clinically to extend the range of caring services and
human interactions so that those services and interactions can potentially benefit
seriously ill individuals and their families.
The principle of beneficence finds completion and internal balance when it
complements alleviation of suffering with preservation of opportunity.
Correspondingly, in clinical practice interventions to alleviate suffering can
be complemented with caring efforts to improve quality of life, including deliberate
efforts to evoke pleasure and joy.
Palliative care clinicians relate stories about withdrawn and profoundly demented
patients who have been determined to be dying, but then thrive, becoming more
alert and interactive, once they have been admitted to a hospice program. Ironically,
under current reimbursement rules and regulatory scrutiny, sustained improvement
renders a patient ineligible for continued hospice care — and thereby forces
his or her withdrawal from the very services that might well improve the quality
of his or her life. The success of programs to improve stimulation of people
with dementia, and of the Eden Alternative movement in nursing homes, offer
persuasive evidence of the positive impact that increased stimulation can have
on institutionalized elders, particularly patients with moderate and advanced
dementia.26 (For an example of such a case,
see "The Story of Ester O'Hara".)
A Developmental Framework for End-of-Life Care
The conceptual framework of lifelong human development underlies a therapeutic
approach to palliative care that resembles mainstream pediatrics. Palliative
care recognizes dying as a normal stage in the life of the individual and his
or her family and applies a "treat, prevent, promote" intervention strategy
to alleviate suffering, improve quality of life, and preserve meaningful opportunities
for patients and their families.27 Dying,
at whatever chronological age the process occurs, constitutes a profound developmental
challenge for every person. Suffering in the context of a terminal condition
commonly includes physical discomfort and functional disability, but it also
often extends into other dimensions of a person's life. Suffering often derives
from a felt loss of meaning and purpose in life and the impending disintegration
of one's self.28 The dying person is forced
to confront discomfort, disability, dependence, and ever-closer death.
From the perspective of developmental psychology, the challenge involved in
integrating these unwelcome facts into one's ongoing personal experience
resembles other life-stage crises. An ill person's assumptions about the
world and sources of confidence and stability may be threatened. The expectations
of others toward the dying person tend to shift and the person may discover
that habitual ways of being no longer fit, having become irrelevant to his or
her new life situation. All the activities, roles, relationships, plans, and
possessions that have hitherto given meaning, purpose, and pleasure to life
and on which a person's very sense of self is built may be threatened by
a terminal illness. It might seem impossible (despite its similarities with
earlier developmental crises) for a person to adapt to, perhaps even grow through,
such a crisis, since death portends personal annihilation. In the world of experience,
however, we observe that such adaptation and growth can occur.
Although suffering associated with dying is all too common, it is neither ubiquitous
nor immutable. Instances of people emerging from the depths of hopelessness
to a sense of wellness in the face of death may be uncommon, but the fact that
such transformations occur, even if only rarely, provides a window into the
core of the therapeutic encounter.29 Indeed,
ignoring this aspect of the phenomenology of human experiences would erode the
scientific integrity of palliative care.
One important advantage of having a developmental framework for clinical care
is that patients who experience suffering associated with dying need not be
labeled "ill" or "dysfunctional" for their distress to be
acknowledged and addressed. Instead, most cases of emotional turmoil and personal
suffering can be understood as part of the difficult — but normal — process
of living with the profound challenges of progressive illness, functional disability,
and the awareness of impending demise.
When "health" is tacitly understood as the absence of injury or illness, the
dying person is obviously unwell. However, the fact that a person has a medical
illness need not in itself define him or her as unwell. A developmental model
can encompass an understanding of suffering as arising from the symptoms and
physical disability of illness and the attendant loss of social roles and accustomed
sources of meaning and felt purpose in life. Yet a developmental framework is
not confined to symptoms and suffering. It can encompass positive experience
associated with the last phase of life and can assist in understanding the transitions
that sometimes occur between these poles of human experience evoked by confrontation
Preservation of opportunity for human development at the end of life has been
recognized as an essential component of palliative care.31
A developmental model better enables clinicians to assess and understand the
psychological and emotional dynamics that underlie personal adaptation. Each
person approaches the end of life with a unique sense of what is most important
and what would be left undone if he or she were to die suddenly. A developmental
conceptual framework provides a clinical framework for actively assisting patients
and families with issues of life completion, life closure, and healthy grieving.
In doing this, it does not supplant, but rather complements, a problem-oriented
medical model which is appropriately employed in countering disease pathophysiology
and symptom management.
The development framework is sufficiently broad and flexible to encompass issues
of interpersonal relationships, as well as spiritual or transcendent dimensions
of personal experience. Developmental terminology that is affirming and nonjudgmental
can be used in exploring religious and cultural concerns. The concept of lifelong
human development provides a basis for assessing patients' personal experience
and a means of bringing specificity to psychosocial and spiritual interventions.
A Consistent Ethic of Caring
It may seem that, for the patient, the absence of an anticipated future
constitutes a fundamental difference between palliative and pediatric care,
and that the proximity of death renders issues of human development irrelevant
for hospice and palliative care. This existential objection assumes that the
value of life is rooted in its duration. An alternative premise appears at least
equally valid: that the value of life is rooted entirely in the present moment — that
the days of life remaining to a person, no matter how few, are more precious
because they are limited.
In truth, the concept of value is wholly subjective, and the value of a life
would seem solely dependent on the perspective of the individual whose life
it is. In addition to duration, the intensity, depth, importance, and meaning
of life and one's satisfaction in living all contribute to life's
subjective value. Adept clinicians recognize and make use of people's capacity
to shift perspective, thereby assisting seriously ill, functionally compromised
patients to reframe their life situation in ways that contribute to improving
their experienced quality of life. Additionally, because ill or injured patients
and their families are intertwined and together constitute an inextricable unit
for palliative care, they have a living future to be considered. For these reasons,
those who provide palliative care should pay attention to issues of human development.
A developmental approach to therapeutic planning and intervention fosters additive
themes in clinical care and ethical analysis. The fullest extension of beneficent
approaches that complement alleviation of suffering with efforts to preserve
personal opportunity and enhance quality of life is expressed by the phrase
"tender, loving care." The philosophical and ethical ramifications
of this approach merit consideration.
"Love" in this context is not an abstract notion or philosophical
stance. Neither is it merely a quality that emanates from the environment, beatifically
radiated by caregivers toward their patients. In the circumstance of a clinical
response to a suffering patient, active modes of care are required. Loving
care may occur through routine nursing tasks — such as bathing, toileting,
and grooming — each of which is performed in a manner that intentionally
evokes feelings of comfort, pleasure, and nurturance. An onlooker, watching
a skillful nurse or aide bathe a patient, might think the purpose of the bath
was to soothe and bring pleasure to the patient. The fact that the patient becomes
clean often seems almost incidental to the process.
Actively loving care opens a realm of therapeutic possibilities that is foreclosed
by a strictly problem-oriented medical model. Clinicians ministering to a patient
in relentless suffering, despite proper application of all the pharmacologic
potions and clinical protocols, are provided by loving care with tangible things
to do. In this way loving care provides an antidote to the therapeutic paralysis
that results when clinicians feel helpless, impotent, and unable to imagine
what else might be done to aid a dying patient.
Gently massaging a patient's hands or feet, or oiling a patient's
skin can be soothing interventions. They are frequently used in many hospice
and palliative programs, but are infrequently recognized as the potentially
powerful therapeutic modalities they are. Soft song, even lullabies, can soothe
dying patients in distress. Listening is a profound skill for any clinician.
Simply keeping company with a patient in distress can at times be a powerful
Although interventions of these sorts are often relegated to nursing, no ethical
constraint precludes physicians from engaging in these direct aspects of care.
Physicians can practice loving care most simply by "showing up." A
brief home visit to a bed-bound patient or even a short phone call can represent
therapeutically powerful interventions. Often by simply stating what is most
obvious — "You have been on my mind and I wanted to see and hear how
you are doing" — a physician can communicate genuine caring and strengthen
his or her therapeutic connection with the dying person. There may be little
else that needs to be said. Besides attending to a patient's discomfort,
a doctor can, with moments of active listening that bear witness to and perhaps
acknowledge fears and struggles, provide tangible evidence to such patients
that they still matter to their physician.
Whether or not such services prove effective in quelling a given patient's
distress, they reflect beneficent intent and fulfill the ethical mandate to
do no harm. Caregivers are sometimes concerned that touching patients
with the intention of causing comfort and even eliciting pleasure will be seen
as manipulation or even sexual exploitation. They need not worry. As legitimate
caring interventions, these practices are subjects of care planning and remain
open to inspection. Indeed, they require and deserve oversight, scrutiny, and
As a society we can strive for a vision in which people are born into the welcoming
arms of a loving community and die from the reluctant arms of a loving community.
An Alternative to Euthanasia and Suicide
Problem-oriented medicine and an incomplete concept of beneficence have
contributed in mutually reinforcing ways to narrow the scope of clinical practice
and the care of people who are dying. Physician-assisted suicide and euthanasia
are, in a sense, the logical result of this narrowing tendency in medical care
and biomedical ethics. To some people, these preemptive, deliberate deaths seem
almost merciful, given the constricted prevailing clinical and ethical framework.
When suffering is severe and persisting, appearing to capture every thread of
a person's existence, there may seem to be nothing else to do.
Drawing on lessons from pediatrics, palliative care can complement the problem-oriented
approach to disease treatment and symptom management with a fuller concept of
beneficence and within a conceptual framework of lifelong human development.
Caregivers can, by examining empirical evidence drawn from the range of human
experience with illness and dying, strengthen the scientific basis of palliative
care and expand the range of therapeutic options. Tender, loving components
of human caring offer potentially powerful interventions for alleviating suffering
and improving the quality of patients' lives. By integrating approaches that
complement problem-oriented medical modalities, we can fortify the ethical foundation
of therapeutics and enhance our capacity to serve suffering and dying persons.
- R. J. Melker, "The Institute of Medicine Report on Medical Errors,"
New England Journal of Medicine, vol. 343, no. 9, 2000, pp. 664-665;
R. Gibson and J. P. Singh, Wall of Silence: The Untold Story of the Medical
Mistakes that Kill and Injure Millions of Americans, Lifeline Press, Washington,
- R. Lamm and S. Altman, "Between a Rock and a Hard Place: Conflicting
Demands on Our Health Care System," Healthplan, vol. 40, no. 6,
1999, pp. 32-39; M. Angell, "Patients' Rights Bills and Other Futile
Gestures," New England Journal of Medicine, vol. 342, no. 22,
2000, pp. 1,663-1,664.
- E. J. Emanuel, D. L. Fairclough, J. Slutsman, et al., "Assistance from
Family Members, Friends, Paid Caregivers, and Volunteers in the Care of Terminally
Ill Patients," New England Journal of Medicine, vol. 341, no.
13, 1999, pp. 956-963; SUPPORT Principal Investigators, "A Controlled
Trial to Improve Care for Seriously Ill Hospitalized Patients," JAMA,
vol. 274, no. 20, 1995, pp. 1,591-1,598; C. Levine, "The Loneliness of
the Long-Term Caregiver," New England Journal of Medicine, vol.
340, no. 20, 1999, pp. 1,587-1,590; R. Bernabei, G. Gambassi, K. Lapane, et
al., "Management of Pain in Elderly Patients with Cancer," JAMA,
vol. 279, no. 23, 1998, pp. 1,877-1,882; and C. S. Cleeland, R. Gonin, A.
K. Hatfield, et al., "Pain and Its Treatment in Patients with Metatastic
Cancer," New England Journal of Medicine, vol. 330, no. 9, pp.
- Cleeland; W. Breitbart, B. D. Rosenfeld, S. D. Passik, et al., "The
Undertreatment of Pain in Ambulatory AIDS Patients," Pain, vol.
65, nos. 2 and 3, 1996, pp. 243-249; D. G. Larson and D. R. Tobin, "End-of-Life
Conversations: Evolving Practice and Theory," JAMA, vol. 284,
no. 12, 2000, pp. 1,573-1,578; S. C. Miller, V. Mor, and J. M. Teno, "Hospice
Enrollment and Pain Assessment and Management in Nursing Homes," Journal
of Pain Symptom Management, vol. 26, no. 3, 2003, pp. 791-799; and J.
M. Teno, S. Weitzen, T. Wetle, et al., "Persistent Pain in Nursing Home
Residents," JAMA, vol. 285, no. 16, 2001, p. 2,081.
- A. M. H. Seaver, "My World Now," Newsweek, June 27, 1994,
p. 11; L. Ganzini, M. J. Silveira, and W. J. Johnston, "Predictors and
Correlates of Interest in Assisted Suicide in the Final Month of Life among
ALS Patients in Oregon and Washington," Journal of Pain Symptom Management,
vol. 24, no. 3, 2002, pp. 312-317.
- "Looking Back on the Millennium in Medicine," New England Journal
of Medicine, vol. 342, no. 1, 2000, pp. 42-49; E. J. Cassell, "The
Principles of the Belmont Report Revisited," Hastings Center Report,
vol. 30, no. 4, 2000, pp. 12-21; and R. A. Mularski and M. L. Osborne, "The
Changing Ethics of Death in the ICU," in R. J. Curtis and G. D. Rubenfield,
eds., Managing Death in the Intensive Care Unit, Oxford University
Press, New York City, 2001, pp. 7-17.
- Union Pacific Railway Co. v. Botsford, U.S. vol. 141, 1891: 250; Schloendorff
v. New York Hospital, NY vol. 211, 1914: 125, 129; President's Commission
for the Study of Ethical Problems in Medicine, Making Health Care Decisions,
U.S. Government Printing Office, Washington, DC, 1982, pp. 1-12, 493-545;
Guidelines on the Termination of Life-Sustaining Treatment and the Care
of the Dying, University of Indiana Press, Bloomington and Indianapolis,
- M. B. Zucker, The Right to Die Debate: A Documentary History, Greenwood
Press, Westport, CT, 1999.
- L. J. Schneiderman, K. Faber-Langendoen, and N. S. Jecker, "Beyond
Futility to an Ethic of Care," American Journal of Medicine, vol.
96, no. 2, 1994, pp. 110-114; M. Angell, "The Case of Helga Wanglie — A
New Kind of ‘Right to Die,'" New England Journal of Medicine,
vol. 325, no. 7, 1991, pp. 511-512; and D. Callahan, The Troubled Dream
of Life: In Search of a Peaceful Death, Simon & Schuster, New York
- T. E. Quill, "Death and Dignity: A Case of Individualized Decision
Making," New England Journal of Medicine, vol. 324, no. 10, 1991,
pp. 691-694; T. E. Quill, C. K. Cassel, and D. E. Meier, "Care of the
Hopelessly Ill: Proposed Clinical Criteria for Physician-Assisted Suicide,"
New England Journal of Medicine, vol. 327, no. 19, 1992, pp. 1,380-1,384;
M. P. Battin, The Least Worst Death: Essays in Bioethics on the End of
Life, Oxford University Press, New York City, 1994; T. E. Quill, L. B.
Coombs, and S. Nunn, "Palliative Treatment of Last Resort and Assisted
Suicide," Annals of Internal Medicine, vol. 133, no. 7, 2000,
p. 563; and M. Angell, "The Supreme Court and Physician-Assisted Suicide,"
New England Journal of Medicine, vol. 361, no. 1, pp. 50-53.
- D. Humphrey, Final Exit: The Practicalities of Self-Deliverance and Assisted
Suicide for the Dying, Hemlock Society, Eugene, OR, 1991; S. B. Nuland,
"Physician-Assisted Suicide and Euthanasia in Practice," New
England Journal of Medicine, vol. 342, no. 8, 2000, pp. 583-584.
- I. Byock, "Consciously Walking the Fine Line: Thoughts on a Hospice
Response to Assisted Suicide and Euthanasia," Journal of Palliative
Care, vol. 9, no. 3, 1992, pp. 25-28.
- Webster's New Universal Unabridged Dictionary, 2nd ed., Simon
& Schuster, New York City, 1979.
- G. E. Nelson, S. M. Graves, R. R. Holland, et al., "A Performance-Based
Method of Student Evaluation," Medical Education, vol. 10, no.
1, 1976, pp. 33-42; I. Byock, "Conceptual Models and the Outcomes of
Caring," Journal of Pain and Symptom Management, vol. 17, no.
2, 1999, pp. 83-92.
- Diagnostic and Statistical Manual of Mental Disorders, 4th ed., American
Psychiatric Association, Washington, DC, 1994. Physicians refer to it as the
- I. Byock and M. P. Merriman, "Measuring Quality of Life for Patients
with Terminal Illness," Palliative Medicine, vol. 12, no. 4, 1998,
pp. 231-244; B. M. Mount and J. Scott, "Whither Hospice Evaluation?"
Journal of Chronic Disease, vol. 36, no. 11, 1983, pp. 731-736.
- N. Aronson, "Quality of Life Research in Cancer Clinical Trials: A
Need for Common Rules and Language," Oncology, vol. 4, no. 5,
1990, pp. 59-66.
- I. Byock, Dying Well: The Prospect for Growth at the End of Life,
Putnam, New York City, 1997; T. T. Williams, Refuge: An Unnatural History
and Place, Pantheon, New York City, 1991; P. Wilkes, "Dying Well
is the Best Revenge," New York Times Magazine, July 6, 1997, pp.
32-38; M. Kearney, Mortally Wounded: Stories of Soul Pain, Death and Healing,
Marino Books, Dublin, Ireland, 1996; E. Kubler-Ross and M. Warshaw, To
Live until We Say Goodbye, Prentice-Hall, Engelwood Cliffs, NJ, 1991;
S. Levine, Meetings at the Edge, Anchor, New York City, 1984; R. C.
Bone, "Lemonade: The Last Refreshing Taste," JAMA, vol. 276,
no. 15, 1996, p. 1,216; and R. C. Bone, "Maumee: My Walden Pond,"
JAMA, vol. 276, no. 24, 1996, p. 1,931.
- H. Guyatt and D. Cook, "Health Status, Quality of Life, and the Individual,"
JAMA, vol. 272, no. 8, 1994, pp. 630-631.
- Mount. The Spitzer QL was one of the earliest quality-of-life instruments
developed for end-of-life care.
- Spitz, 1945 and 1946; J. Hinton, Dying, Viking, London, 1967; W.
H. Thomas, Life Worth Living: How Someone You Love Can Still Enjoy Life
in a Nursing Home, VanderWyk & Burnham, Acton, MA, 1996; and W. Thomas,
"Remembering Hospitalism: The Eden Alternative Recognizes Growing, Living
Things as Essential Ingredients in the Health Care Mix," Balance,
vol. 2, no. 2, 1998, pp. 17-18.
- P. Span, "Welcome to the Future: Why Bessie Fischer's World May
Someday Be Yours," Washington Post Magazine, June 9, 2002, p.
- L. Teri, L. E. Gibbons, S. M. McCurry, et al., "Exercise Plus Behavioral
Management in Patients with Alzheimer Disease: A Randomized Controlled Trial,"
JAMA, vol. 290, no. 15, 2003, pp. 2,015-2,022; W. Thomas and M. Stermer,
"Eden Alternative Principles Hold Promise for the Future of Long-Term
Care," Balance, vol. 4, no. 4, 1999, pp. 14-17. For a description of
the application of Eden Alternative ideas in a Catholic long-term care center,
see G. Burnside, "A Ministry of Presence," Health Progress,
November-December 2001, pp. 52-55, 78.
- Standards and Accreditation Committee, A Pathway for Patients and Families
Facing Terminal Disease, National Hospice Organization, Arlington, VA,
- I. Byock, "The Nature of Suffering and the Nature of Opportunity at
the End of Life," Clinical Geriatric Medicine, vol. 12, no. 2,
1996, pp. 237-252.
- M. Kearney, "Palliative Medicine — Just Another Specialty,"
Palliative Medicine, vol. 6, 1992, pp. 39-46; Byock, Dying Well.
- Byock, "The Nature of Suffering."
- Standards and Accreditation Committee.
The Discovery of "Hospitalism"
It had long been recognized that neonates institutionalized in orphanages universally
suffered from profound deficiencies in cognitive and behavioral development,
often had stunted physical growth, and were at greatly increased risk of dying
during infectious epidemics.
Researchers documented that the key difference among care settings lay in the
amount and quality of interactions with the child.* Infants
in the foundling home were well-fed, cleansed, and swaddled. They subsequently
lay undisturbed in bassinets until they were next scheduled to be fed or have
their diapers changed. The researchers concluded that the syndrome was caused
by profound sensory and emotional deprivation during a critical early stage
in childhood development.† Subsequent prevention of this syndrome
by prescribed "normal" interaction and stimulation of newborns confirmed the
etiology. Independently, other researchers provoked a nearly identical syndrome
by raising infant macaque monkeys in circumstances of emotional deprivation.‡
In hindsight, the cause of pediatric failure to thrive seems obvious. It is
important to note, however, that it was not at all obvious at the time. Despite
their best intentions, staffs of foundling homes focused their attention on
the physical necessities. As they saw it, an infant had no problem unless something
was physically wrong, such as difficulty feeding or diarrhea or a fever. The
recognition of pediatric failure to thrive as a profound, often fatal, and entirely
preventable syndrome spurred expansion of responsibility within pediatric medicines.
Pediatric providers were henceforth required to monitor and protect the emotional
and intellectual growth of the child. By extension, this mandate entails attention
to the health of the family system, at least as it affects the level of infant
stimulation, the child's living environment, and the quality of parenting.
* R. Spitz, "Hospitalism: An Inquiry into the Genesis of
Psychiatric Conditions of Early Childhood," in R. Eissler, ed., The Psychoanalytic
Study of the Child, vol. 1, 1945.
† R. Spitz, "Hospitalism: A Follow-Up Report on the
Investigation Described in Volume 1," in R. Eissler, ed., The Psychoanalytic
Study of the Child, vol. 5, 1946.
‡ H. F. Harlow and R. R. Zimmerman, "Affectional Responses
in the Infant Monkey," Science, vol. 130, 1959, pp. 421-432; and H. F. Harlow
and C. Mears, The Human Model: Primate Perspectives, V. H. Winston
& Sons, Washington, DC, 1979.
The Story of Ester O'Hara
Ester O'Hara, a woman in her late 80s, resided in a nursing home. She
had dementia and slowly progressive weight loss and was withdrawn, noncommunicative,
and entirely dependent on others for her activities of daily living. When she
developed a breast mass, her family asked that she receive hospice care.
Hospice intervention began with a review of Mrs. O'Hara's chart,
multiple medical problems, and prescribed medications, wound care, and other
physical treatments. The hospice physician performed a physical examination,
explaining each step to Mrs. O'Hara before proceeding. She kept her eyes
closed and remained mute and entirely passive during the examination. When the
doctor finished, he said, "Mrs. O'Hara, I am done now. Thank you for
your patience. It is a pleasure to meet you and to help care for you."
At that moment she abruptly opened her eyes, looked the doctor squarely in the
face, and replied, "Of course it is!" These were the first words anyone
had heard her utter in many months.
Mrs. O'Hara's response reminded the physician, the hospice team,
and the nursing home staff that they were caring for a whole person. Together
they developed a new plan of care that complemented the skilled nursing care
she was receiving. They made certain that Mrs. O'Hara had family members
or volunteers who would visit and talk or read to her. At meal times, her visitors
would encourage and help her to eat. For two months she began to gain weight
and became more responsive.
During this time, Mrs. O'Hara evinced a child-like quality that was in
contrast to her advanced years. While respecting the dignity of her age and
place as matriarch of a large family, the clinical team instituted a program
of nurturing Mrs. O'Hara, a program similar to the care that would be provided
to a young child. A favorite Teddy bear became her constant companion, and she
clutched it tightly during uncomfortable dressing changes and treatments. She
still spoke only intermittently and usually with just a word or two, but at
times her words seemed surprisingly well-considered. One day when the hospice
chaplain commented to Mrs. O'Hara that it was good to see her with her
bear, she said, "He and I have been through a lot together."
When Mrs. O'Hara died several months later, she was surrounded by nursing
home staff and family, some softly humming, each lovingly touching a part of
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