___________________________________________ Palliative Care and Pain Management at the End of Life
Underlying dementia makes it difficult to identify symptoms, especially pain and psychosocial disorders. As a result, suffer- ing is prevalent among patients with dementia. In fact, one study showed that 93% of patients with dementia died with an intermediate or high level of suffering [466]. The assessment of pain can be particularly challenging when the patient is unable to communicate. This situation calls for a multipronged approach consisting of observation, discussion with family and caregivers, and evaluation of the response to pain medica- tion or nonpharmacologic measures. Recommendations for assessing pain in nonverbal patients have been developed by the American Society for Pain Management Nursing [467]. As dementia progresses, behavioral disturbances become more frequent, and symptoms include hallucinations, sleep disorders, agitation, paranoia, delusions, anxiety, and combat- iveness. Care should be taken to differentiate these symptoms from those associated with the underlying disease or as an adverse effect of drugs. In addition, dementia can affect the prognosis of other chronic diseases, and health events or com- plications such as hip fracture, pneumonia, febrile episodes, or eating problems can substantially reduce the life span for patients with advanced dementia [175; 459]. The understanding of advanced dementia is limited, and as noted, the uncertainty of the disease course makes it difficult for advance care planning and referral to hospice care [175; 448; 468; 469; 470]. The progressive nature of dementia adds importance to the need for advance directives, and involvement of the family in decision making is crucial [175; 471]. Educational resources about palliative care and hospice can help family and patients better understand the language needed in advance directives and the benefit of hospice ser- vices [446; 471]. In an effort to enhance the quality of care at the end of life for older patients, the CAPC published the report Improving Pal- liative Care in Nursing Homes [472]. Based on their research, the authors of this report identified four different models for integrating preferred practices for palliative and hospice care for patients in nursing homes [472]: • Palliative Care Consult Service: Palliative care services are provided by healthcare professionals as requested by the nursing home Medical Director or Director of Nursing or the patient’s attending physician. • Hospice-Based Palliative Care Consult Service: Pal- liative care services are provided by healthcare profes- sionals employed at a local hospice as requested by the nursing home Medical Director or Director of Nursing or the patient’s attending physician. • Nursing Home Services Integrated Palliative Care: Palliative care services are provided by staff employed directly by a nursing home that incorporates one or more of the NQF’s domains of care.
• Hospice Care: Specialized end-of-life palliative care services are provided by contracted hospice providers to hospice-eligible residents. CHILDREN/ADOLESCENTS Although most physicians involved in the care of children/ adolescents with life-limiting diseases are likely to make refer- rals for palliative or hospice care, the rate of hospice use among eligible children/adolescents is lower than that among adults, estimated at less than 10% in the United States [473; 474; 475]. The cause of most deaths among children is cancer, and it has been proposed that referral to hospice at the time of disease relapse would enhance the quality of care for children and their families; yet, only 2.5% of referrals are made at that time [476; 477]. Instead, most hospice referrals are made at the time of disease progression (44%), at the end of therapeutic options (26%), or at the time of imminent death (20%) [476]. Similarly, most palliative care referrals are made late, with 30% to 44% of pediatricians preferring a palliative care consultation when curative therapy is no longer the goal [477]. One factor contributing to inadequate palliative/hospice care referral may be availability of appropriate services. A survey of institutions participating in Children’s Oncology Group clinical trials found that a palliative care team was available in 58% of institutions and hospice care in 60% [478]. Further- more, even when available, most services were not well used by patients [478]. In addition, many healthcare professionals are inexperienced with pediatric palliative care, and the avail- ability of sufficiently trained pediatric hospice professionals is limited [90; 473; 476]. Research has identified several additional barriers to palliative care at the end of life for children/adolescents, many of which differ from those in the adult setting ( Table 26 ) [14; 90; 476; 477]. The sense of failure or of “giving up” may be heightened among both pediatric healthcare professionals and family members because the potential death of a child goes against the natural order. Compared with pediatric oncology profes- sionals, parents are more likely to favor the use of aggressive treatment near the end of the child’s life and consider hope a more important factor in treatment decision making [479]. As with adults, integrating palliative care early in the disease continuum can help overcome conflicts in treatment goals related to uncertainty of the prognosis [90]. Although aggres- sive treatment should be discontinued when it is of no benefit, the Patient Protection and Affordable Care Act of 2010 now allows for disease-directed treatment to be given concurrently with hospice [480]. (A life expectancy of six months is still a criterion for eligibility.) Clinicians usually recognize the lack of a realistic chance for cure before parents do and should talk openly with parents about discontinuing aggressive treatment and directing attention to enhancing the quality of life that remains for the child [481]. Members of the palliative care team should discuss treatment goals with the family, outline choices for interventions as the end of life draws near, and establish limits of care as the health status changes [473; 482; 483].
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