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Palliative Care
Palliative care for seriously ill children and adults is provided by an interdisciplinary team of clinicians who focus on communication about values and goals of care and ameliorating suffering from physical, social, spiritual, existential, and psychological concerns. Members of the interdisciplinary palliative care team include registered and advanced practice nurses, physician assistants, social workers, pharmacists, chaplains, and adult and pediatric physicians, many of whom are ABIM certified in Hospice and Palliative Medicine. Palliative care teams augment rather than replace the active treatment of illness, striving to enhance patients’ quality of life in concert with patient and family goals.
The Institute of Medicine (IOM) recommends improved access to palliative care, expanded education of all healthcare professionals in palliative care domains with an emphasis on communication, and expanded research in the areas of caregiver support, innovative payment models to incentivize team-based palliative care, and use of health information technology in care coordination and communication.
Palliative care is not reserved for patients at the end of life; it should be available as well to patients of any age receiving curative or life-prolonging treatments. Recent expert consensus practice guidelines, including those by the American Society of Clinical Oncology (ASCO), recommend palliative care concurrent with oncological care for patients with advanced cancer and/or high symptom burden. Early palliative care integration alongside treatment of solid tumors improves patient quality of life and symptom management and may extend lives. While palliative care subspecialists provide clinical support in more complex situations and palliative care education, innovation, and research, all clinicians should integrate high-quality palliative care into their care of patients with serious illness because there are not now nor in the future will there be enough palliative care providers to meet the need.
National Comprehensive Cancer Network (NCCN) guidelines advise palliative care referral for patients with refractory or relapsing hematologic malignancies (HMs) and intractable cancer pain. However, although patients living with HM and hematopoietic stem cell transplant (HSCT) have palliative care needs and an especially high symptom burden, they are less likely than solid tumor patients to receive palliative care referrals. Unique barriers to palliative care and hospice involvement in HM care include significant prognostic uncertainty related to many HM diagnoses and the benefit of palliative blood transfusions. HM patients are more likely to receive more aggressive measures (e.g., chemotherapy, hospital admissions, intensive care unit admissions) in the last 30 days of life and are less likely to enroll in hospice at the end of life. Furthermore, many hematologic oncologists still view palliative care as end-of-life care. HSCT physicians report concerns about palliative care specialists’ lacking adequate knowledge about HSCT and that patients perceive a palliative care referral signifies the end of further cancer-directed therapies.
This chapter reviews core elements of palliative care for children and adults, with specific attention to the growing understanding of palliative care needs in patients with HM/HSCT and newer models of palliative care integration within HM/HSCT care.
Pediatric Palliative Care: Special Issues
Pediatric palliative care is an emerging frontier in the comprehensive care of children. Specific issues related to palliative care for pediatric patients and their families include the following :
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Because there are smaller numbers of dying children than adults, there are fewer palliative care pediatric professionals and children are under-represented in palliative care protocols.
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The heterogeneity of serious illnesses, many rare, requires the involvement of many disciplines and specialists in the palliative care team.
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Many children have genetic diseases, so there may be more than one affected child in a family.
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Pediatric palliative care may extend over years, even decades. A broad developmental spectrum is represented, including changes in the individual child through time.
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The underlying principles and ethics of how to care for patients with serious illness are universal across the lifespan. A child or adolescent diagnosis of life-threatening or life-limiting illness, however, throws an assumed sequence out of order. Children expect to care for dying parents. When parents instead find themselves watching their child face death, a sense of tragic absurdity prevails. Not only is time shortened, but its order is shattered. A child or adolescent with a life-threatening illness represents a premature separation from the family. Even before the child has become a differentiated individual through a natural developmental sequence, that child is wrenched away. When a psychological separation from parents has not yet been affected, the child and the parents have little preparation for the separation caused by death. The adolescent who is beginning to negotiate independent existence is often the hardest to face when that “moving forward” is irreversibly halted, or at least disrupted; a younger child has not even had the time to begin to form life goals.
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One of the foremost goals is to initiate palliative care proactively for children earlier in the illness trajectory, prioritizing the care of the family, with a particular focus on the young siblings. The timing of palliative care consultation and the clinical approach may differ depending on the prognosis for the child, the decisions that must be made in choosing treatment options, and the need for improved management of pain and suffering to provide optimal quality of life.
Communication
Prognosis and Decision Making
Pediatric Population
Surveys of bereaved parents indicate that physician communication about prognosis is not optimal, and bereaved parents consider high-quality communication to be the most important element of quality physician care. Compared with physicians, parents are overly optimistic about the child’s chances of cure, and this is especially true when the prognosis is uncertain. Parents value clear information that is communicated sensitively and includes the child, when developmentally appropriate. Although they find prognostic information about their child upsetting, a majority of parents want as much information about the prognosis as possible. Being aware of these beliefs may help physicians discuss the prognosis with greater frequency and clarity.
During the last decade, there has been increased recognition of the importance of the child's participation in making treatment decisions. Crucial to this process is an assessment of the child's or adolescent’s ability to appreciate the nature and consequences of a specific medical decision. This becomes particularly complex when the wishes of the child differ from those of the parents. Because actual assessment tools are only 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 from members of the interdisciplinary palliative care team can be crucial: children often express their understanding, awareness, and thoughts about treatment options and living or dying to individuals other than their parents or primary physician.
Adult Population
Similarly, adult patients living with serious illness and their families value clear information about the prognosis when communicated sensitively.
Although most patients report wanting prognostic information from their oncologist, patients with advanced refractory disease may not ask about their prognosis, and oncologists often do not initiate the discussion. In one recent observational study of HM patients after their first oncologic visit, only half of the patients were told unambiguous prognostic estimates for mortality or cure. This is likely due in part to significant prognostic uncertainty associated with HM diagnoses.
When first diagnosed, HM patients often need to start treatment immediately. Though great advances in the treatment of adult HM have improved survival rates, the clinical courses of these diseases vary significantly from patient to patient. Some HM patients respond to curative treatment attempts with long-term remission and after a period of time are considered cured. Others have an initial response to curative-intended therapies only to relapse later at an unpredictable time; some then respond to further treatments for eventual remission while others succumb. For some unfortunate HM patients, their cancer is so advanced at the time of diagnosis that they experience a rapid clinical decline and die. This unpredictability of an HM patient’s course can make decisions about when to stop cancer-directed therapies and when to start end-of-life therapies challenging.
Communication in Serious Illness: Strategies
Effective communication can allow clinical providers to align therapeutically with patients and family members. Discussing prognosis, breaking bad news, and discussing late goals of care with patients with advanced disease are all times when clinicians can demonstrate their commitment to an ongoing collaborative partnership. Conversations should demonstrate respect for cultural differences and the belief that psychosocial and spiritual growth can occur, even at the end of life. If these conversations are done well, they can lay the groundwork for further discussions about patients’ hopes, fears, goals, values, and spiritual concerns as they make decisions about their medical care, including their thoughts about resuscitation and life-sustaining therapies. These conversations should be documented in the electronic medical record and recorded as a physician order when possible (e.g., in a Medical Order for Life sustaining Treatment [MOLST] or Physician Order for Life-Sustaining Treatment [POLST] form).
Children with serious hematologic disorders have usually lived with the illness over months or years. Their knowledge, understanding, and awareness of their precarious life situation are often profound at physical, cognitive, and emotional levels. In the past, disclosure to the child of his or her prognosis (and even, in some instances, the diagnosis) was thought to be harmful. Since the 1980s, there has been a shift toward open communication. To shield the child from the truth may only heighten anxiety and cause the child to feel isolated, lonely, and unsure of whom to trust.
Clinicians interested in improving their communication skills when caring for patients with serious illness can refer to online resources, such as the Center to Advance Palliative Care ( capc.org ), the Serious Illness Conversation Guide ( https://www.ariadnelabs.org/areas-of-work/serious-illness-care/ ), and VitalTalk ( vitaltalk.org ). A few key communication skills strategies are described as follows.
Cultivating Prognostic Awareness
Even when patients are provided with clear statistical information about their prognosis by their oncologist, they may have an inaccurate impression of the goals of their treatment and of their prognosis. If they cannot process this difficult information, they are unlikely to be able to make appropriate personal or medical decisions.
Improving a patient’s prognostic awareness is an important component of early palliative care. Using advanced communication techniques, palliative care clinicians can facilitate patients’ prognostic awareness, and support patients as they swing between hope and the nightmare of awareness of how serious their illness is. After improving a patient’s prognostic awareness, palliative care clinicians can help patients with serious illnesses identify their hopes, values, and realistic goals.
Breaking Bad News
Table 100.1 contains an outline of the suggested steps to take when breaking bad news. For patients with advanced disease, the goal is to establish or strengthen trust and reassure them that the clinician is committed to caring for them, even though their disease cannot be cured.
Table 100.1
Breaking Bad News
Based on Abrahm JL. Update in palliative medicine and end-of-life care. Annu Rev Med . 2003;54:53; and Back A, et al. Mastering Communication With Seriously Ill Patients: Balancing Honesty With Empathy and Hope . New York: Cambridge University Press; 2009.
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REMAP: A Framework to Facilitate Effective Late Goals of Care Conversations
Table 100.2 contains an outline of the suggested steps of REMAP, a technique useful for goals-of-care conversations with patients and/or family members when current treatments for the disease have not worked and the medical plan needs to be re-evaluated.
Table REMAP Framework for Late Goals of Care 100.2
Conversations
From Childers JW, Back AL, Tulsky JA, et al. REMAP: A framework for goals of care conversations. J Oncol Pract . 2017;13(10):e844–e850.
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