Page 1645 - Hematology_ Basic Principles and Practice ( PDFDrive )

1466 Part VIII Comprehensive Care of Patients with Hematologic Malignancies

treatment. 32,52 Most long-term HSCT survivors express satisfaction TABLE Long-Term Consequences of Therapies for
with their quality of life and describe themselves as productive, stable, 90.1 Hematologic Cancers
and well adjusted without significant physical, functional, psycho-
logic, and social problems related to their disease or HSCT treatment. Anxiety
However, there is a group of patients with a high rate of psychosocial Depression
morbidity who are vulnerable to ongoing and intermittent psycho- Fear of recurrence
social distress. Empiric evidence showed that as many as 9% to 30% Disfigurement
of long-term survivors with hematologic malignancies experience Conditioned nausea and vomiting
significant psychologic distress, including anxiety, depression, and Unemployment
posttraumatic distress symptoms. 53,55,58 Denial of life insurance
Psychologic aspects of survivorship may include concern over Denial of health benefits
termination of treatment; fear of relapse; preoccupation with somatic Increase in life insurance rates
symptoms; reentry into previous roles; lingering affinity with death; Difficulty changing health care coverage
and financial, job, and insurance difficulties. These issues may mani- Breakdown of marriage or relationship
fest in a variety of ways, including denial of past illness, leading to Decline in participation in leisure activities
medical compliance issues; ongoing problems with anxiety, panic, Diminution of support from others
and depression; and inability to reenter or modify previous roles. Fear Disruption in sexual functioning
of recurrence by both patients and family members can severely affect Fertility
quality of life. 48,59 In her classic article “The Enduring Seasons in
Survival,” Dow stated that the season of extended survival is domi-
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nated by fear of recurrence. In fact, Baker et al showed in a group
of cancer survivors that “being fearful my illness will return,” “concern through prevention, assessment and treatment of pain and other
about relapsing,” “fears about the future,” and “difficulty making physical, psychologic, and spiritual problems.” 68
long-term plans” were a problem 68%, 60%, 58%, and 41% of the Palliative care began with the hospice movement. Since the
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time, respectively. Mellon and Northouse found that the strongest concept of hospice was first introduced in England in the 1960s,
predictors of quality of life 1 to 5 years after treatment were concur- hospice care has been recognized as the state-of-the-science end-of-
rent family stressors, family social support, family member fear of life care, and hospice services are now available around the world.
recurrence, family meaning of the illness, and patient’s employment However, hospice care has not been integrated into the care of
status. 61 patients dying with hematologic malignancies. 69,70 Despite the strong
There is increasing interest in patients’ experiences with post- emphasis on providing end-of-life care in accordance with patients’
traumatic stress disorder (PTSD). Studies have consistently described wishes and empiric studies showing that most terminal patients prefer
a higher incidence of PTSD in patients with hematologic malignan- spending their final days of life and dying at home, hematologic
cies than in the average population. 62–64 Predictors of PTSD severity malignancy is the only diagnosis that has been repeatedly and con-
among patients with hematologic diagnosis include higher levels of sistently shown to predict hospital death. 71,72
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distress and high avoidance coping coupled with low social support. The reasons for such insufficiency have been attributed to many
These researchers describe how providers can assess coping and pres- factors. Manitta et al in their article “Palliative Care and the Hemato-
ence of family support and potentially mitigate the effects of a dis- Oncologic Patient: Can We Live Together?” identified barriers
tressing experience with the cancer diagnosis. Considerable evidence between the expectations of two specialties: (1) the dying trajectory
indicates that the wide range of surgical, chemotherapeutic, and can be rapid with more unpredictability and more technology, (2)
radiation therapies leaves permanent damage to organs and physiologic the various hematologic diagnoses are not uniform in response and
functioning and disfigurement across the different hematologic treatment, (3) the goals of care can be unclear, (4) the focus on cure
diagnoses (Table 90.1). Health care providers should be mindful of can preclude the focus on palliation, (5) lack of knowledge exists
psychologic sequelae among patients, even within the context of among hematologists about palliative care principles, and (6) the
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remission and a hopeful prognosis, and refer patients and family health care system does not encourage collaborative care. Many of
members to a mental health specialist for further evaluation, as these issues are not unique to hematologic conditions, but are clearly
needed. challenges to be overcome. In our experience, one of the most sig-
nificant barriers to initiation of hospice care for patients with
hematologic malignancies is the ongoing need for blood product
Terminal Stage and End-of-Life Care transfusions, which is often not provided by hospice agencies. Explo-
rations around how much benefit these transfusions concretely
Technologic advances in health care have improved the potential for provide are often helpful to bridging this gap. Additionally, partner-
cure of many previously fatal hematologic malignancies. However, ing with insurance agencies to carve out blood products for ambula-
many patients still have disease that is unresponsive to treatment, tory patients may be possible.
continues to progress, and is considered incurable. When cure is In addition to systematic barriers, personal barriers exist. Health
acknowledged to be impossible and alternative efforts to combat the care providers, first and foremost, must examine their own attitudes
progress of disease are exhausted, patients are recognized as terminally toward death and dying and avoid imposing their own values on
ill or dying. In the past, experts had advocated for the pursuit of patients and their families. Respecting patient and family wishes,
hospice care at this point in time foregoing further active treatment appropriately managing and alleviating distressing symptoms, and
and shifting the emphasis of medical care to control of distressing providing care tailored to meeting patients’ needs can help patients
symptoms and maintenance of quality of life at an optimal level. 59,65,66 dying of hematologic malignancies reach the end of life with peace
Over the past few years, the paradigm has shifted in the field of and dignity.
palliative care to initiating palliative care alongside curative treatment
with the philosophy that it should be implemented across the illness
trajectory. The ultimate goal is to improve the quality of life and FACTORS THAT INFLUENCE
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facilitate relief of suffering over the course of one’s illness. In non- PSYCHOSOCIAL ADJUSTMENT
hematologic diseases such as severe heart failure or metastatic lung
cancer, palliative care has been shown not only to improve quality of Psychosocial responses to cancer vary widely and are influenced by
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life but extend it. The new World Health Organization definition several factors that clinicians should bear in mind when considering
states: “Palliative care is an approach to care which improves quality the responses of individual patients. A review of the literature points
of life of patients and their families facing life-threatening illness, to key factors that may have an impact on psychosocial adjustment