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Clinical and Ethical Susan D. Block, M.D.

Issues in Palliative Care


Abstract: Over the past 15 years, in response to widely-recognized gaps in the care of patients at the end of life, pallia-
tive care has emerged as a recognized subspecialty, focused on the care of patients with advanced, progressive, life-

SYNTHESIS
CLINICAL
threatening illness. The aim of palliative care is to optimize the quality of life for the patient and family through the
provision of expert interdisciplinary care, including symptom assessment and treatment, psychosocial and spiritual sup-
port to the patient and family, help with complex decisions about treatment options, coordination of care in the com-
munity, and bereavement care for families. A growing evidence base demonstrates the effectiveness of palliative care
clinical programs in improving symptoms, quality of life, communication, concordance between patient wishes and
care received, family satisfaction, and bereavement outcomes and in reducing costs. There are many opportunities for
psychiatrists to contribute to care for patients at the end of life through enhanced involvement in palliative care teams.

Over the past 15 years, in response to public and physical suffering, even if such treatment might
professional recognition of problems in the care of hasten death (the so-called “double effect”) (6), and
patients at the end of life, palliative care has greater appreciation of the role of psychiatric disor-
emerged as a clinical discipline focused on the pro- ders (e.g., depression and anxiety), as well as pa-
vision of comprehensive, interdisciplinary care fo- tients’ psychological characteristics (e.g., desire for
cused on maintaining and enhancing quality of life control), as factors in patients’ desires to hasten
for patients living with advanced, progressive, life- death (7). A growing evidence base in palliative care
threatening illness and for their families. In 1994, has identified patient perspectives on high-quality
the Study to Understand Prognoses and Prefer- end-of-life care, focusing on the elements of opti-
ences for Outcomes and Risks of Treatment (SUP- mizing physical comfort, maintaining a sense of
PORT) of more than 9000 patients in five aca- continuity of one’s self, maintaining and enhancing
demic medicine centers across the country, relationships, making meaning, achieving a sense of
demonstrated pervasive problems in care of pa- control, and confronting and preparing for death
tients at the end of life, including deficits in pain (8, 9).
management, knowledge of and adherence to pa- The field of palliative care has grown rapidly in
tient preferences for life-prolonging care, frequent the United States, mirroring earlier growth in the
use of aggressive care without benefit, and deple- United Kingdom. Hospice use has grown from
tion of family resources (1, 2). Additional research 158,000 patients per year in 1985 to 1.2 million
has demonstrated high levels of family dissatisfac- patients per year in 2005 (10) (approximately one
tion with symptom management, communication, third of all deaths) and has become a $9 billion care
emotional support, and respect provided to the pa- system; more than 2200 physicians have been cer-
tient; the highest levels of satisfaction were reported tified in Hospice and Palliative Medicine, and more
for patients cared for by hospice (3, 4). Undertreat- than 1300 hospitals have developed clinical pallia-
ment of symptoms, especially in nursing homes, tive care services. In 2007, Hospice and Palliative
remains a significant issue (5). Discussions about
physician-assisted suicide (PAS) built on patients’
fears that they would suffer and that their wishes
CME Disclosure
would not be honored at the end of life and resulted Susan D. Block, M.D., Dana-Farber Cancer Institute, Brigham and Women’s Hospital, and
in the legalization of PAS, under specified circum- Harvard Medical School Center for Palliative Care, Harvard Medical School Boston.
stances, in the state of Oregon in 1997. In addition,
this often-contentious dialogue contributed to the No relevant financial relationships to disclose.
strengthening of the ethical foundation for with- Address Correspondence to: Dr. Susan Block, Division of Psychosocial Oncology and Palliative
holding and withdrawing life-sustaining treatment, Care, Dana-Farber Cancer Institute, 44 Binney Street, Boston, MA 02115; e-mail,
aggressive use of medications for pain and other susan_block@dfci.harvard.edu.

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BLOCK

Medicine became an Accreditation Council for of life, whereas Hispanics prefer aggressive care, but
Graduate Medical Education (ACGME)- and receive it less often (24). New strategies for treat-
American Board of Medical Specialties (ABMS)- ment of depression in advanced illness (25, 26),
recognized subspecialty of Internal Medicine, with psychotherapies to enhance quality of life at the end
10 cosponsoring boards, including the American of life (27, 28), and complicated bereavement are
Board of Psychiatry and Neurology. Over a similar also emerging (29).
time frame, the ACGME and the Liaison Commit-
tee on Medical Education (LCME) have promul- THE PALLIATIVE CARE CLINICAL
gated standards for education in end-of-life care for APPROACH
medical students and residents (11, 12). Although
medical students and residents continue to have Palliative care clinicians seek to understand and
major deficits in their preparation to care for pa- treat the physical, psychological, spiritual, and so-
tients with palliative care needs, research demon- cial components of the patient’s and family’s dis-
strates positive attitudes and interest in learning tress, within a model that views the patient and
these clinical competencies. Psychosocial care and family as a single unit. The focus of care is on alle-
communication emerge repeatedly as areas of par- viation of suffering and restoring the patient to a
ticular weakness in physicians’ educational prepa- sense of “wholeness” (30). Care is provided across
ration for caring for patients at the end of life (13). the entire age spectrum (31). Outstanding commu-
Research in palliative care has lagged behind clini- nication competencies are integral to the practice of
cal and educational development; however, the ev- palliative medicine (32). Whereas the traditional
idence base for the field is rapidly improving. focus of medicine is cure and life prolongation, pal-
liative care complements these goals with the focus
TREATMENT STRATEGIES AND EVIDENCE
on optimizing quality of life for the patient and
family. Palliative care clinicians provide expert
A growing body of evidence suggests that the symptom assessment and meticulous treatment of
provision of palliative care services is associated pain, often using medications, nonpharmacologic
with improved symptom control, improved quality treatments (e.g., meditation or hypnosis), and in-
of life, better communication, greater concordance terventional approaches; similar intensive strategies
between patient wishes and care received, reduced are used to treat other common symptoms at the
caregiver distress, improved family satisfaction, a end of life, including nausea, fatigue, insomnia, and
greater likelihood of death at home, enhanced be- constipation. Palliative care clinicians also seek to
reavement outcomes for survivors, and reduced evaluate and treat psychiatric disorders (e.g., de-
hospital costs.(3, 14 –20). We are learning that spir- pression, anxiety, and delirium) as well as to help
ituality and religion represent valuable resources patients explore feelings of grief, loneliness, fear
that help patients cope and that spiritual support is and uncertainty about the future, and concerns
associated with better quality of life in patients with about loved ones. Spiritual/religious and existential
advanced cancer (21). Although only about one issues are also a focus of assessment and treatment.
fifth of patients with advanced cancer are both Anger at or isolation from God, guilt about past
aware of their terminal prognosis and at peace behavior, and uncertainty and fear about the after-
about it, this state of “peaceful awareness” is asso- life are among the common issues that arise in this
ciated with better mental health and quality of domain; in addition, existential concerns about the
death; physician communication about prognosis meaning, purpose, and value of one’s life arise fre-
appears to be associated with peacefulness at the quently and are the subject of attention. The im-
end of life (22). Proactive communication strate- pact of the patient’ s illness on family members, the
gies, including providing a brochure, as well as toll of caregiving, preparation for death, bereave-
greater opportunities for families to express their ment, and exploring concerns about key relation-
feelings and concerns, appear to enhance family ships are commonly a focus of palliative care. Be-
support, appropriate end-of-life decision making, cause of the breadth and intensity of issues, as well
and bereavement outcomes among patients hospi- as the shortened time frame for addressing them, an
talized in an intensive care unit and their families interdisciplinary team involving physicians, nurses,
(23). Cultural differences in values about end-of- social workers, a chaplain, pharmacist, and, ideally,
life care are now appreciated, enabling clinicians to a psychiatrist works together to provide personal-
better understand the wishes of an increasingly di- ized treatment. Care can be provided in the inpa-
verse population. For example, African Americans tient, outpatient, nursing home, and home settings;
are more likely to prefer and receive less informa- inpatient palliative care programs may provide con-
tion disclosure and more aggressive care at the end sultative services or have specialized units for care of

394 Fall 2007, Vol. V, No. 4 FOCUS THE JOURNAL OF LIFELONG LEARNING IN PSYCHIATRY
BLOCK

patients with palliative care needs. Hospice is an Figure 1.Traditional and Contemporary
invaluable resource for the provision of care in the Palliative Care Approaches.
community; more than 90% of hospice services are Traditional Model for Patients with Advanced Illness Care
provided in patients’ homes, whereas a small pro-
portion are provided in nursing homes and inpa-
Palliative
tient hospice facilities. Disease-Directed Treatment
Care
Over the past 10 years, clinical guidelines for the
provision of palliative care have been developed by Time of Death
a variety of organizations. The National Consensus Diagnosis

Standards for Quality Palliative Care (33) and the


National Comprehensive Cancer Network (34)

SYNTHESIS
CLINICAL
have promulgated recommendations for patients Integrated Care for Patients with Advanced Illness

with advanced disease. Whereas past practice has

Bereavement
incorporated hospice or palliative care only when Disease-Directed Treatment

Hospice
curative or disease-modifying treatments have
failed, contemporary palliative care practice inte- Palliative Care
grates palliative care principles and approaches Time of Death
from the time of diagnosis with a life-threatening Diagnosis

illness as demonstrated in Figure 1.


ening the encounter and moving toward intense
THE ROLE OF THE PSYCHIATRIST
affect, and self-reflection focused on countertrans-
ference issues—are essential competencies for pal-
The differential diagnostic issues for mental liative care clinicians and are supported by the pres-
health disorders in the setting of advanced illness ence of a psychiatrist on the team, as well as explicit
are challenging because of the contribution of med- teaching about these issues. Issues that arise infre-
ical symptoms and comorbidities, complex drug quently, including, in particular, requests for phy-
regimens, and psychological issues; psychiatrists sician aid in dying, often arouse intense emotions
play an invaluable role in helping palliative care within the team, present challenging clinical issues,
teams tease out these interactions and in developing and can be stimuli for reflection and exploration of
a rational approach to management. In addition, issues of suffering; psychiatrists can play a key role
psychiatrists can play a role in helping palliative in helping the team work through these issues.
care teams understand and develop treatment plans
for patients with personality and substance abuse BARRIERSTO PSYCHIATRISTS’
disorders, as well as those with major mental illness INVOLVEMENT WITH PALLIATIVE CARE
and psychiatric disorders that may compromise de-
cision making. As nonpsychiatrically trained physi- Although psychosocial care and communication
cians, most palliative care physicians benefit from represent two of the most critical elements of excel-
collaboration with a psychiatrist who is able to lent palliative care practice and education, psychia-
teach them about management of these challenging try has been sparsely represented in the palliative
patients. Understanding loss and grief is a key com- care movement. Yet, many of the most challenging
petency for palliative care clinicians; many psycho- clinical problems in the field are those about which
therapies deal centrally with loss, and our comfort psychiatrists could have much to offer: how do pa-
in working with patients dealing with other losses tients move from denial and fear to a state of peace
can be a valuable resource in helping a palliative and acceptance of approaching death? How is de-
care team learn how to deal with intense suffering pression best recognized and treated in the setting
from the losses of advanced illness. Further, the of terminal illness? How do patients and their fam-
psychiatrist can often play an important role in fa- ilies process and “metabolize” loss? Do drugs help?
cilitating team reflection about their experiences in Is the desire for PAS a manifestation of psychopa-
caring for patients who are dying and in supporting thology or a healthy adaptive response? How does
effective self-care strategies for their palliative care repeated exposure to death and loss affect health
colleagues. Many of the elements of psychothera- care professionals?
py—intense, engaged, empathic listening to the Psychosomatic medicine/medical psychiatry ser-
words and the emotional “music” beneath the vices, in most settings, have little interaction with
words, attention to process, cognitive behavior palliative medicine and tend to focus on diagnosis
techniques such as reframing and problem solving, and treatment of disorders such as depression and
the ability to tolerate intense affect, skills in deep- delirium in the hospital setting, rather than the

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BLOCK

broad range of illness-related concerns that may be Recent research has begun to illuminate the role
associated with a life-threatening illness. Most of of key psychological phenomena in influencing
the psychosocial care and teaching within palliative care choices and outcomes for patients with life-
care clinical programs is carried out by social work- threatening illnesses. The impact of depression on
ers; few palliative care programs include psychia- treatment choices, the effects of physician commu-
trists. nication on patients’ psychological well-being at
Yalom (35) and others have observed that psychi- the end of life, how care of the patient before death
atrists tend to avoid dealing with death-related is- affects bereavement outcomes, new approaches to
sues within themselves and with their patients. Psy- facilitating dignity and peace at the end of life, and
chiatric training offers trainees very limited the impact of psychological factors in physicians on
exposure to the theories about response to loss, few care they provide to patients remain important
opportunities to work longitudinally with patients questions about the care of persons in the last phase
with serious medical illness and their families, lim- of life. These questions also have implications for
ited exposure to bereavement issues, and a growing how we train physicians to care for patients with
focus on diagnosis and pharmacotherapy. Whereas advanced illness, the use of aggressive medical treat-
palliative care focuses on identifying strengths and ments at the end of life, preventive interventions for
inner resources that help patients traverse this chal- the bereaved, and the role of psychosocial treat-
lenging developmental phase, psychiatry training ments in promoting quality of life in the setting of
emphasizes psychopathology. Reimbursement for advanced illness.
palliative care and for psychiatry are poor, making
it difficult to support a psychiatrist’s work with the RECOMMENDATIONS
team.
Patients cared for in our health care system
QUESTIONS AND CONTROVERSY
should be able to expect that they will receive high-
quality palliative care, along with excellent disease-
Palliative care services, through attention to bet- directed management for a life-threatening illness.
ter pain management, improved communication In 2007, with Hospice and Palliative Medicine
about patients’ desires for end-of-life care, en- now a recognized subspecialty, clinicians in all dis-
hanced emotional support for families struggling ciplines, including psychiatry, should have a basic
with intense feelings of grief and loss, and attention familiarity with the principles and approach of pal-
to palliative care needs across the continuum of care liative care. As psychiatrists, we have a responsibil-
from home to hospital, may have a role to play as a ity to advocate the inclusion of basic competencies
clinical and preventive arm of medical ethics. in psychosocial care at the end of life into expecta-
Armed with medications (e.g., opioids for pain) tions for this emerging subspecialty. Finally, we
and “procedures” (e.g., structured family meeting should contribute to the expansion of the knowl-
and goals of care conversation), palliative care clin- edge base and the clinical management options for
ical teams may be able to proactively avert conflict patients dealing with complex psychiatric issues at
and moral distress through the provision of expert the end of life.
clinical care, leading to improved outcomes for pa-
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NOTES

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