Assessing the palliative care needs and service use of diverse older adults in an urban medically-underserved community

Abstract

Although palliative care (PC) has become increasingly familiar, considerable gaps persist in access to and use of services. Community-based programs remain rare, and low-income, minority communities significantly under-utilize hospice and palliative services. We used community-based participatory research (CBPR) methods to conduct a mixed-methods community needs assessment of seriously-ill older adults (n=100) and providers from community-based programs and churches (n=41) in an urban medicallyunderserved community in the U.S. to explore: (I) the prevalence and severity of illness-related symptoms and psychosocial-spiritual concerns; (II) the scope and quality of community supports helping older adults manage their symptoms; and (III) the perceptions and utilization of palliative and supportive care services among older adults and community-based service providers. Participants reported high rates of chronic illness-related symptoms (i.e., pain, fatigue, sleeping difficulties, depression, and anxiety), and many described unmet needs around symptom management. Few had ever utilized PC or pain management services, and most relied primarily on family, friends, and faith communities to help them manage burdensome symptoms.Barriers included lack of familiarity with PC, limited access and financial concerns. Older adults were largely unfamiliar with PC, and many described unmet needs and desire for help with symptom burden. Findings support the need to further explore community-level and cultural barriers to PC among diverse, underserved older adults. Development of innovative community partnerships may help raise awareness of PC and address the physical and psychosocial-spiritual challenges facing chronically-ill minority older adults and their families.

Full Code to Do-Not-Resuscitate: Culturally Adapted Palliative Care Consultations and Code Status Change Among Seriously Ill Hispanic Patients

“…As other research has established, patients in ethnic minority groups are also less likely to have advance care directives prior to EOL discussions or palliative care consultations. 23-25 Similarly, the results of this analysis likely reflect both that our Hispanic patients had lower levels of advance directive knowledge and lower rates of pre-existing advance directives prior to palliative care consultations. However, the importance of cultural adaptation is critical to maximizing the effectiveness of palliative care consultations with Hispanic patients.…”

“…Members of minority ethnic groups in the US are reportedly on average less informed about advance directives and are less likely to support their use. 23-25 African Americans have been consistently found to prefer the use of life support, an intervention that is typically inconsistent with the goals of hospice care, as compared to other US racial groups. 23 Additionally, Hispanic patients, despite their preference for comfort over prolonging life, are more likely to die full code.…”

Awareness and Perceptions of Palliative Care Among the Elderly: A Qualitative Study

“…This fact fully proves that the popularization of palliative care knowledge is a necessary precondition for decision making. 54 Finally, in addition to building and improving the supplyside facilities of palliative care, 55 attention should also be paid to the reality of the demand side of palliative care 56,57 such as lack of awareness of palliative care, 58 misconceptions, 59,60 reluctance 26 and so on. Elderly people are mostly concerned about the cost of palliative care and national policies.…”

Measurement Properties of ID-PALL, A New Instrument for the Identification of Patients With General and Specialized Palliative Care Needs

“…Depending on care settings, illnesses, co-morbidities and frailty, reported prevalence of palliative care patients varies between 7% and 73%. Despite the development of palliative care worldwide, access remains limited, especially for non-cancer patients, older people, and vulnerable and cultural minority patients (1)(2)(3)(4). It is an ethical obligation to provide palliative care access to all patients irrespective of their diagnoses (5).…”