Perceptions of Palliative Care: Voices From Rural South Dakota

Abstract

Objectives: This study aimed to explore health professional, patient, family, and caregiver perceptions of palliative care, availability of palliative care services to patients across South Dakota, and consistency and quality of palliative care delivery. Methods: Six focus groups were conducted over two months. Participants included interprofessional healthcare team members, patients, family members of patients, and caregivers. Individuals with palliative care experiences or interest in palliative care were invited to participate. Recruitment strategies included emails, flyers, and direct contact by members of the Network. Snowball sampling was used to recruit participants. Results: Forty-six participants included patients, family members, caregivers and interprofessional health care team members. Most participants were Caucasian (93.3%) and female (80%). Six primary themes emerged: Need for guidance toward the development of a holistic statewide palliative care model; Poor conceptual understanding and awareness; Insufficient resources to implement complete care in all South Dakota communities; Disparities in the availability and provision of care services in rural SD communities; Need for relationship and connection with palliative care team; and Secondary effects of palliative care on patients/family/caregivers and interprofessional healthcare team members. Significance of Results: Disproportionate access is a principle problem identified for palliative care in rural South Dakota. Palliative care is poorly understood by providers and recipients of care. Service reach is also tempered by lack of resources and payer reimbursement constraints. A model for palliative care in these rural communities requires concerted attention to their unique needs and design of services suited for the rural residents.

Examining Barriers and Facilitators to Palliative Care Access in Rural Areas: A Scoping Review

“…Common questions raised by patients and their families/caregivers were the definition of PC, service options, eligibility and providers (generalists and specialists), and cost and reimbursement. 18-21 For example, a family caregiver from rural South Dakota stated that”…when I think of palliative care, I always think of hospice…I don’t know the difference.” 18 Veterans from rural Washington tended to associate PC with dying and with cancer patients only and misunderstood it as no treatment at all. 22…”

“…Among clinicians, “…many, in general, are confused by the fact that palliative care and hospice are not the same thing.” 23 Their understanding of the role of PC varied due to different education and training opportunities. 18,21,23-26 Across studies, low competency in PC provision concerned many providers who were not specialized in PC. 22,24,25,27-31 Some regional providers, especially primary care providers, had feelings of geographic isolation and had encountered challenges consulting PC specialists when needed.…”

“…31 Additionally, communicating with family members who held different opinions on care planning further complicated the usage of medications in PC. 18,37…”

“…Providers from several studies perceived lower competency with spiritual, religious, and cultural aspects of care. 18,32,35,38 Providers from various settings (e.g., nurses in rural emergency departments, oncologists in rural cancer centers, and primary care providers) were concerned that psychosocial care was time-consuming and often sacrificed with various other competing care priorities. 29,30,35 It was made even harder when psychologist and social worker shortages stepped in.…”

“…20,37-40 The general lack of qualified PC providers in rural areas made it fundamentally difficult for patients and families to access PC information. 18,25,38,41-43 Some patients and families found it hard to connect with their providers; some providers failed to recognize the PC needs of patients and families or failed to introduce PC timely. 25,38-40,44 Notably, poor health literacy and language barriers restricted the already limited communications.…”