Page 1670 - Hematology_ Basic Principles and Practice ( PDFDrive )

C H A P T E R 92

PALLIATIVE CARE

Kristen G. Schaefer, Janet L. Abrahm, and Joanne Wolfe

Palliative care is an approach to care for children and adults provided • The heterogeneity of illnesses, many rare, requires the involve-
by an interdisciplinary team with a focus on individual patient ment of many disciplines and specialists.
and family goals, values, preferences, and relief of suffering in the • Many children have genetic diseases, so there may be more than
1
face of serious illness. In a seminal 2003 report, and again in the one affected child in a family.
recent “Dying in America: Improving quality and honoring individual • The time course of some illnesses can be extremely variable.
2
preferences near the end of life”, the Institute of Medicine (IOM) Pediatric palliative care may extend over years, even decades.
defined the unique role of palliative care for children and adults • A broad developmental spectrum is represented, including changes
with serious illness: “Palliative care seeks to prevent or relieve the in the individual child through time.
physical and emotional distress produced by a life-threatening medical • The underlying principles and ethics of palliative care are universal
condition or its treatment, to help patients with such conditions and across the life span. However, as in all specialties, children bring
their families live as normally as possible, and to provide them with with them unique issues and dilemmas.
timely and accurate information and support in decision making.” • A child or adolescent diagnosed with a life-threatening or life-
The IOM report also outlined the need to improve patient access, limiting illness throws an assumed sequence out of order. A time
education of health professionals, and research in palliative care of role reversal is expected, when children will care for dying
(Table 92.1). In 2006, hospice and palliative medicine was accepted parents. When parents instead find themselves watching their
as a specialty by the American Board of Medical Specialties. In child face death, a sense of tragic absurdity prevails. Not only is
2007, the Accreditation Council for Graduate Medical Education time shortened, but its order is shattered. A child or adolescent
began accrediting fellowship programs, and the first qualify- with a life-threatening illness represents a premature separation to
ing examination in hospice and palliative medicine was given in the family. Even before the child has become a differentiated
2008. Palliative care subspecialists provide clinical support in more individual through a natural developmental sequence, that child
complex situations and are also responsible for improving palliative is wrenched away. There is little preparation for separation by
care education, innovation and research, but all clinicians should death when a psychological separation has not yet been effected.
integrate high-quality palliative care into their care of patients with The adolescent who is beginning to negotiate an independent
serious illness. 3 existence is often the hardest to face when that “moving forward”
Palliative care practitioners have expertise in communication, in is irreversibly halted, or at least disrupted. A child has not even
treatment of physical symptoms, and in relieving social, psychologi- had the time to begin to form life goals.
cal, and spiritual and existential distress. Such care and assistance is • The necessity for palliative care—the concept and the clinical
not limited to people thought to be dying and should be available approach—may emerge at different points in the illness trajectory,
concurrently for patients receiving curative or life-prolonging treat- depending on the prognosis for the child, the decisions that must
ments. Emerging evidence suggests that concurrent palliative care in be made in choosing treatment options, and always, the manage-
serious illness can decrease costs and improve outcomes, and patient ment of pain and suffering in the provision of optimal quality of
access to high-quality specialty-level palliative care is becoming the life. One of the foremost goals is to initiate palliative care for
2,4
standard of care at most academic cancer centers However, overall children earlier in the illness trajectory—in a proactive manner—
rates of referral to palliative care remain low, particularly for patients so that effective care planning can be implemented. Care of the
with hematologic malignancies. 5 family, with a particular focus on the young siblings, is a
6
Recently published oncology consensus clinical guidelines high- priority.
light the integral role of specialty-level palliative care throughout
the cancer trajectory, and align with increasing public demand
for better advance care planning and more timely referral to COMMUNICATION
2
specialty-level palliative care and hospice. This chapter will review
core elements of palliative care for children and then for adults Good communication can dispel fears of abandonment. Breaking bad
in each section, with specific attention to growing awareness and news and discussing prognosis with patients with advanced disease
understanding of palliative care needs in patients with hematologic are occasions when clinicians can demonstrate their commitment to
malignancies. an ongoing partnership with patients and families. Conversations
must demonstrate respect for cultural differences and the conviction
that psychosocial and spiritual growth can occur even at the end of
PEDIATRIC PALLIATIVE CARE: SPECIFIC ISSUES life. If done well, the groundwork will be laid for further discussions
of patient hopes and fears, goals, values, and spiritual concerns that
I just wish that I had armfuls of time. form the basis of decisions about resuscitation and artificial life
— (4-year-old child) 7 support. These conversations should be documented in the medical
record, and recorded as a physician order when possible, for example,
Pediatric palliative care is an emerging frontier in the comprehensive a signed MOLST (Medical Order for Life-Sustaining Treatment) or
8
care of children. Specific issues related to palliative care for pediatric POLST (Physician Order for Life-Sustaining Treatment) form. 2
patients and their families include the following: 9 Communication with a child…
• Smaller numbers of dying children than adults mean that there is When I first heard my diagnosis, one question kept going around and
less professional expertise and underrepresentation of children in around in my head: “How long do I have, Doc?”
palliative care protocols. — (12-year-old child) 7

1488