Background: Hospice medical directors (HMDs) play an important role as part of the interdisciplinary hospice team. Family caregivers (CGs) play a critical role in caring for patients receiving home hospice care. Understanding the challenges HMDs face when working with CGs is important when addressing potential gaps in care and providing quality end of life (EoL) care for the patient/CG dyad. Objectives: To understand issues HMDs encounter when working with and caring for CGs and to determine how they manage these issues in the home hospice setting. Design: Twelve semistructured phone interviews with certified HMDs were conducted. Data were analyzed using standard qualitative methods. Subjects: Participants included certified HMDs obtained from a public website. Results: Participants’ responses regarding the major issues HMDs faced when working with CGs were categorized into 6 themes: (1) assessing CG competency, (2) CG financial burden, (3) physical burden of caregiving, (4) managing CG expectations, (5) CGs denial of patient’s terminal condition, and (6) CGs unwilling or unable to engage with providers about their needs or the patient’s needs. Conclusions: HMDs confirmed the important role CGs play in providing care to home hospice patients. Challenges faced by HMDs vary from assessing CG competency in providing care to the patient, dealing with the physical and financial toll that CGs face, and addressing CGs’ expectations of hospice care. Future studies are needed to explore solutions to these issues to better support CGs in the home setting.
With the growth of palliative and hospice care, patients with a terminal illness and their family caregivers have opportunities to pursue care focusing on alleviation of symptoms and optimizing quality of life in the home setting. However, caregivers are often overburdened with caregiving responsibilities leading to poor physical and mental health. Given the importance of family caregivers for patients who elect to receive hospice/palliative care at home along with the negative outcomes associated with caregiving, conducting a review of caregiver interventions is critical to understand what has been studied and identify gaps in the field. A scoping review was conducted to describe interventions focused on family caregivers providing care to terminally ill patients who receive palliative/hospice care in the home setting. Variables collected included intervention delivery details, study population, participant demographics, and measured outcomes. Our search yielded 14,527 articles, of which 70 articles on 54 unique interventions were included in the final analysis. Over three-quarters (77.8%) of the interventions were conducted in North America and Europe. Interventions commonly aimed to reduce the physical burden of caregiving (53.7%), educate the caregiver (53.7%), and improve psychological well-being (48.1%). The majority (58.6%) of the articles evaluated interventions for feasibility outcomes. The lack of studies in non-Western countries points to a cultural disparity in this field. Secondly, despite the variety of interventions, religious and spiritual needs in palliative care need to be further addressed. As palliative and hospice care is an emerging area of research, most studies are still implementing interventions and assessing feasibility.
Context: Given that the composition of hospice patients’ terminal diagnoses has become increasingly diverse, understanding whether hospices provide quality care to patients, regardless of disease, is important. However, data comparing diagnosis and caregiver-reported outcomes remain scarce. Objectives: To analyze the association between the composition of patients’ terminal diagnoses and caregiver-reported quality measures. Methods: Using cross-sectional, publicly available data from the Centers for Medicare & Medicare Services (CMS), we analyzed data collected from 2015–2019. We conducted general linear model analyses to identify associations between hospice characteristics/practices and caregiver-reported outcomes. Results: Of the 2810 hospices, those that cared for a greater percentage of dementia patients had fewer caregivers, on average, who rated hospice a 9 or 10 (where 0 = low, 10 = high; β = −.094; 95% CI = −.147, −.038), reported they always received help for pain and symptoms (β = −.106, CI = −.156, −.056), and reported definitely having received the training they needed (β = −.151, CI = −.207, −.095). Those caring for more stroke patients had fewer caregivers, on average, who rated hospice a 9 or 10 (β = −.184, CI = .252, −.115), reported they always received help for pain and symptoms (β = −.188, CI = −.251, −.126), reported definitely having received the training they needed (β = −.254, CI = −.324, −.184), and reported that the hospice offered the right amount of emotional/spiritual support (β = −.056, CI = −.093, −.019). Conclusion: Hospices that cared for a greater proportion of dementia and stroke patients had poorer scores on caregiver-reported quality measures. These findings support efforts to identify mechanisms underlying these differences and to design strategies to ensure optimal outcomes for hospice patients regardless of diagnosis.
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