Page 1676 - Hematology_ Basic Principles and Practice ( PDFDrive )

1494 Part VIII Comprehensive Care of Patients with Hematologic Malignancies

TABLE Specialty Level Palliative Care Versus Hospice Care
92.5
Palliative Care Hospice Care
Interdisciplinary Model of Care Interdisciplinary Program of Care
• Clinical specialty, offers expert: • Medicare hospice benefit, delivers:
• Symptom management and communication • Symptom management and communication
• Psychosocial and spiritual care • Psychosocial and spiritual care
• Inpatient, outpatient and home care consultations to the primary • Home, inpatient, or respite care in a nursing home under the
team direction of the patient’s physician
• Coordination of care among treating teams • Continuity with referring care team
Eligibility Eligibility
• Any patient with serious or life-threatening illness • Estimated 6 months or less prognosis
• Any stage the illness • Eligible for Medicare or secondary insurance
• Concurrent with curative or disease-directed therapies • Focus is quality not life prolongation
Interdisciplinary Consult Team Interdisciplinary Care Team
Palliative care physicians, advance practice nurses, physician assistants, Hospice medical director (physician), advance practice nurses, physician
nurses, social workers, chaplains, and bereavement counselors and assistants, nurses, social workers, home health aides, chaplains,
others volunteers, administrative personnel, medical consultants, occupational
therapists, physical therapists, speech therapists, and bereavement
counselors.

death. After the formal program ends, the bereaved are welcome to grief experienced by trainees with little previous experience with
continue to participate in any bereavement activities that have been death and dying. Interns are in special need of emotional support
meaningful to them. following a patient’s death. Reviewing each death on the next morn-
At the time of death, survivors may seem numb, confused, or ing’s rounds provides the needed debriefing and shows respect for the
dazed and experience disbelief. By the second month after the death, patient who has died. When possible and it feels appropriate, clini-
yearning has replaced disbelief. During the next months, disbelief, cians can write a card or attend the funeral or memorial service, which
depressed mood, and yearning decline gradually, and by 6 months may facilitate closure.
after the death, most people will have accepted the reality of the death For all these reasons, the professionals who engage in this extraor-
and are beginning to think about reengaging in relationships and dinarily rich and demanding work articulate significant needs for
work, discovering new meaning and purpose. Siblings are especially support themselves. Otherwise, the toll of cumulative unresolved
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vulnerable in the year following a child’s death. By a year or two, grief exacts a heavy toll in their personal and professional lives. A
most survivors have accommodated to their loss. They become aware cohesive team and/or the opportunity for individual and group
of the changes that must be made if they are to resume old relation- consultation are crucial for those who are intimately engaged in
ships and responsibilities, or to establish new ones and risk recurrent repeated cycles of attachment.
loss.
About 10–20% of survivors, however, suffer either from depres-
sion and/or from a symptom complex previously called complicated CONCLUSION AND FUTURE DIRECTIONS
12
grief, now identified as prolonged grief disorder. Patients with depres-
sion manifest symptoms of sadness, anhedonia, and psychomotor Patients with hematologic malignancies and their families face unique
retardation, but they are not yearning for the deceased or unable to challenges compared with patients with solid tumors. These chal-
accept the death. Depressed survivors benefit from counseling and lenges include: the need to undergo high-risk treatments with signifi-
consideration of pharmacologic treatment. Patients with prolonged cant symptom burden and prolonged hospitalization to achieve cure;
grief disorder, in contrast, have grief symptoms that last beyond significant prognostic uncertainty; difficult decisions about the ben-
6 months and cause functional impairments. Such patients are at efits and burdens of life-sustaining transfusions of blood products
increased risk for medical and psychiatric illness and should be when the prognosis of the cancer is weeks to months; increased likeli-
referred for psychiatric or spiritual counseling. Persons at higher hood of receiving more aggressive care in the last month of life; and
risk for this disorder include those with a history of attachment more deaths in the hospital. 5,22,27
disorders (childhood abuse, childhood separation anxiety), aversion There is growing evidence that integration of palliative care into
to lifestyle changes, being unprepared for the death and unsup- the care of patients with hematologic malignancies is achievable and
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ported after it, and a particularly interdependent relationship with the can improve patient and family outcomes. Appropriate triggers for
deceased. members of the hematologic oncology team to request a palliative
care consultation could include patients with high risk of refractory
symptoms (e.g., severe graft-versus-host disease) or high mortality
SELF-CARE FOR CLINICIANS risk (e.g., relapse after bone marrow transplant, or hospitalized
patients with end-stage disease). Research is needed to characterize
Even while providing steady care for the patient and family, profes- and alleviate the symptom burden of patients with hematologic
30
sional caregivers are often experiencing their own distress in a sort of malignancy at all points in their illness trajectories, and measure the
parallel process. The professional often feels anguish and helplessness effectiveness of specialty-level palliative care interventions to relieve
in witnessing a child endure pain and suffering—physical or psychic. patients’ and families’ suffering. 14
He or she often identifies with the parents of the child. This reaction
intensifies when the caregiver is also a parent, especially if his or her
healthy child is the same age as the patient. For the caregiver who REFERENCES
does not yet have children, the specter of a fatally ill child may loom
threateningly. In surveys, medical and nursing staff often cite the 1. Institute of Medicine: When children die: Improving palliative and end-of-
personal pain of losing a child as the most difficult experience in their life care for children and their families, Washington, DC, 2003, National
work with dying children. Special attention should be paid to the Academy Press.