Page 1672 - Hematology_ Basic Principles and Practice ( PDFDrive )

1490 Part VIII Comprehensive Care of Patients with Hematologic Malignancies

missing an opportunity for a cure or prolonged time. The physician hopes on disease remission. They may have forgotten how to hope
and team’s role shifts from leadership in recommending a curative for anything else. Physicians and the teams they work with can help
treatment plan to the clarification of experimental and palliative patients with advanced hematologic diseases develop new kinds of
options and consequences. In most instances, the parents make the hope by encouraging them to reintegrate into activities that were
decision; however, to varying degrees, when asked in a sensitive meaningful before their disease began and they rearranged their lives
manner, children as young as 10 years of age are able and willing to around treatment schedules. Paradoxically, discussion about limited
talk about their experiences and end-of-life decisions. 8 prognosis can lessen fears of abandonment and strengthen the trust
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During the last decade there has been increased recognition of the patients have in the oncology team. As disease progresses, despite
child’s participation in making treatment decisions. Crucial to this ongoing treatment, patients who have begun to reengage in non–
process is an assessment of the child’s or adolescent’s ability to appre- treatment-related activities and who have developed a broader rela-
ciate the nature and consequences of a specific medical decision. This tionship with their physicians are more likely to understand that the
becomes particularly complex when the wishes of the child differ physician is not abandoning them when he or she says that the goals
from those of the parents. Because actual assessment tools are only of treatment should be comfort.
in the early stages of development, professionals must rely exclusively
on their clinical judgment to assess children’s understanding of the
contingencies they are facing. This is often a juncture when input CAREGIVERS
from members of the interdisciplinary team can be crucial: children
often express their understanding, awareness, and thoughts about People who are not caregivers don’t understand the continuous burden
treatment options and living or dying to individuals other than their of the role … the stress feels as if I’m constantly holding my breath.
parents or primary physician. — (Family member about caring for a loved one
The following example illustrates the remarkable capacity of a with advanced disease) 2
young child to address the transition towards end of life.
Families and other nonprofessional caregivers, who provide the vast
A 7-year-old girl told her parents that she was too tired to fight majority of care for patients with advanced cancer, are stressed by the
anymore, and that she wanted to give up. She added: “If I have to patient’s disability and degree of suffering, the lack of coordination
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continue suffering, I would rather be in heaven.” These statements of care, and underlying family, work, or financial pressures. As many
were major determinants in the parents’ choosing a palliative care as 32% of these caregivers either have a major psychiatric condition
plan without any further attempts at life-prolonging treatment. She (panic disorder, major depression, posttraumatic stress disorder, or
went home on hospice care and died peacefully several weeks later. 7 generalized anxiety disorder) or access mental health services after the
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patient’s diagnosis. Caregivers are likely to need the support of many
Adult patients and families also want to be prepared for the end members of the team therefore to continue in their difficult role.
of life, to be able to name someone to make decisions, know what to
expect about their physical condition, have financial affairs in order,
know that the physician is comfortable talking about death and RELIEF OF SUFFERING
dying, feel that the family is prepared for their death, have funeral
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arrangements in place, and have treatment preferences in writing. Suffering includes physical, psychological, social, and spiritual or
For this to happen, patients must know how long they are likely to existential dimensions.
have left to live. For adults with refractory hematologic malignancy,
prognostic uncertainty about when to stop therapy in pursuit of cure
and when end-of-life begins can be a barrier to palliative care Symptom Management in Children
referral. 14
Therapist: If you could choose one word to describe the time since your
The median survival of older adults with leukemia is not that differ- diagnosis, what would it be?
ent from advanced pancreatic cancer or stage IV lung cancer … but — Child: PAIN. 7
we are stuck with this tail and so what do we do with that? We live
on the tail, this 5% to 10% tail. Maintaining patient comfort is a critical issue throughout treatment,
— (Hematologic oncologist at an academic cancer center) 15 as well as during the end stages of life. Although effective pain control
is a hallmark of palliative care, pain is only one of many distressing
Although most patients report wanting prognostic information from symptoms. The spectrum of physical symptoms includes (although
their oncologist, patients with advanced refractory disease may not it is not limited to) dyspnea, fatigue, seizures, loss of appetite, nausea
ask about their prognosis, and oncologists often do not initiate the and vomiting, constipation, and diarrhea. Early studies among
discussion. In one recent observational study of patients after their bereaved parents or children who died of cancer indicate that optimal
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first oncologic visit for a hematologic malignancy, only half of symptom management is still far from being achieved, even in major
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patients were told unambiguous prognostic estimates for mortality or pediatric teaching centers, and in one study more than 10% of
cure. parents had considered hastening their child’s death; this was more
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Discussions of prognosis can be very painful for clinicians, who likely if the child was in pain. A recent study among children with
may experience feelings of guilt, failure, or sadness. Clinicians inter- advanced cancer confirmed high suffering from physical and psycho-
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ested in improving their skills may refer to practical educational social symptoms according to the children themselves. Relief of a
handbooks and articles that outline how to discuss these issues both child’s end-of-life distress may have long-lasting implications for
with patients who want to know their prognosis and with those who bereaved parents, who are negatively affected by the child’s experience
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do not or are ambivalent. Online resources for communication in of pain years beyond the death.
serious illness training include the Center to Advance Palliative Care Psychologic symptoms such as depression and anxiety are also
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(capc.org) and VitalTalk (vitaltalk.org). prevalent in children at the end of life. Children also experience
existential concerns. Creating opportunity for communication
around these sources of distress involves using creative strategies that
Impact on Hope incorporate the developmental stage of the child. Strategies may
involve verbal communication using open-ended questions such as
The rigors of treatment regimens and the physical and emotional “What are you hoping for?” and “What are you worried about?”
demands of the complex care required for patients with advanced However, many children communicate best through nonverbal
disease tend to isolate patients and their families and focus all their means such as artwork and music. Children may be more willing to