___________________________________________ Palliative Care and Pain Management at the End of Life
Healthcare Team The delivery of comprehensive palliative care relies on a team of skilled providers with experience and training in the principles of palliative care ( Figure 2 ). The team may be organized around a primary care clinician or a palliative care specialist who functions as consultant or principal provider [15; 25; 26; 27]. Palliative care interventions have been shown to significantly improve patient outcomes, although the data are stronger for patients with cancer than for life-limiting diseases overall [28; 29]. This is illustrated by results of a randomized controlled trial of early palliative care provided as an adjunct to standard oncologic care for patients with metastatic non-small cell lung cancer. In this study, involving 151 subjects enrolled from a single academic practice, patients in the intervention group were seen by a palliative care clinician regularly (once or more per month) for 12 weeks; in comparison to the group receiving only standard care, the intervention (palliative care) group had a measurably better quality of life, lower rate of depression, and improved survival by 2.7 months [30]. The composition of a hospice care team is essentially the same as for a standard palliative care team. The primary service provided during hospice care is skilled nursing care and man- agement of distressing symptoms, followed by bereavement services and medical social services ( Figure 3 ) [31]. Clinical specialists (e.g., oncologists, cardiologists, pulmonologists) also become members of a palliative care team when they are involved with the care of their patients during the end of life. Family physicians and general internists typically provide primary palliative care; this level of care requires skill in core palliative care competencies (such as basic symptom assess- ment and management and knowledge of psychosocial and community services) [6; 8]. The composition of the healthcare team and the roles of its members may differ across palliative care settings, and roles and responsibilities should be clear and well documented to help members work effectively as a team. Team members’ roles should also be communicated to the patient and the family. The primary care physician is usually responsible for refer- ral to palliative care through hospice when the patient has a non-cancer diagnosis. In general, the primary care physician becomes the attending physician, assuming primary respon- sibility for the patient [32; 33]. The primary care physician should be prepared to relinquish some autonomy in order to work effectively with the interdisciplinary team [32]. Home- based hospice care is organized around a team that includes the attending physician, registered nurse, social worker, and counselor. These team members are necessary for Medicare reimbursement [34]. The attending physician collaborates with other members of the hospice team to manage symptoms and fulfills other basic obligations, such as admission orders, medication prescriptions and refills, certification of hospice eligibility, and signing of the death certificate [33].
High-quality palliative care also requires special expertise in honest, compassionate communication. In addition to enhanc- ing the patient’s and family’s experience, these skills help to establish trust and overcome barriers to adequate care and relief of symptoms. Several communication tasks are especially important: conveying accurate prognostic information while maintaining hope, eliciting information about symptoms, decision making about curative and palliative treatments, han- dling emotions, and dealing with requests from patients and families who have unrealistic goals [35; 36; 37]. The challenges of communicating effectively are discussed later in this course.
USE OF PALLIATIVE CARE AND HOSPICE SERVICES
Despite the increasing use of hospice, palliative care and hospice are underutilized services. The NHPCO statistics show the share of Medicare decedents who used hospice increased from 44.0% in 2010 to 51.6% in 2018; decreased to 47.3% in 2021, because of the COVID-19 pandemic; then increased to 49.1% in 2022 [1]. Hospice use varies according to several demographic factors. Patients treated in hospice are primarily women, although the gap has been closing, with 54.3% of the hospice population being female [1]. Studies show that White individuals are more likely to use hospice than are individuals in minority populations [38; 39; 40; 41]. However, from 2018 to 2022, NHPCO data show that hospice utilization by Medicare decedents increased among all race/ ethnicity groups surveyed. In 2022, 51.6% of White, 38.3% of Hispanic, 38.1% of Asian American, 37.4% of Black, and 37.1% of North American Native Medicare decedents were enrolled in hospice [1]. The lower rates of hospice use in minority populations have been attributed to many factors, including beliefs about health care, death, and end-of-life care; lack of awareness of hospice services; mistrust of the healthcare system; cultural differences in healthcare decision making and in disclosure of illness to the patient; lack of insurance; lack of healthcare professionals’ cultural competency; lower referral rates by health care profes- sionals; and the hospice caregiver requirement [40; 42; 43; 44]. Most Common Diagnoses Cancer and human immunodeficiency virus (HIV)/AIDS were once the predominant diseases in hospice and palliative care programs, but as treatments for these diseases have improved, the number of individuals with the diseases in hospice pro- grams has decreased while the number of individuals with chronic, progressive diseases has increased. In 2021, Alzheimer dementia/nervous system disorders/organic psychosis (25%), cancer (23%), and cardiac/circulatory system diseases (22%) were the three most common diagnoses (by ICD-10 code) in the hospice population, accounting for nearly three-quarters of all hospice beneficiary diagnoses ( Figure 4 ) [1].
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MDCA1525
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