Home-Based Palliative Care: Perspectives from Patients With COPD & Their Caregivers

Adults with advanced COPD often experience episodes of dyspnea, anxiety, depression, fatigue, and anorexia as their disease progresses. “After patients are hospitalized with a COPD exacerbation, a lack of supportive services may result in unaddressed care needs,” explains Karen F. Hyden, PhD, MSN/Ed. This can increase healthcare utilization and risks of rehospitalizations while decreasing health-related quality of life (HrQOL) for patients.

When COPD reaches the moderate to advanced stage, palliative care—specifically, home-based palliative care (HBPC)—can become a vital aspect of care. HPBC allows for the provision of advanced symptom management, advanced care planning, and conversations on goals of care in a setting in which patients and their caregivers are likely comfortable. Although HBPC offers potentially meaningful benefits to patients with COPD and their caregivers, questions remain as to which aspects of HBPC are most meaningful to them. Identifying these aspects could decrease confusion about HBPC and increase patient satisfaction when it is offered.

Assessing Patient & Caregiver Perspectives

Dr. Hyden and colleagues published a pilot study in Chronic Obstructive Pulmonary Disease that described domains of HBPC considered meaningful by patients with COPD and their caregivers. “Our goal was to learn what patients and caregivers found most meaningful from their palliative care services,” Dr. Hyden adds. “We also wanted to inform clinicians on the importance of referring these patients to HBPC as part of their continuum of care.”

Using a descriptive design with narrative analysis methodology, the study team interviewed 10 patients with COPD and their caregivers to investigate their experiences with HBPC in the 30 days after hospitalization for a COPD exacerbation. Patient and caregiver interviews were analyzed in dyads using thematic analysis.

HBPC Found to Be Meaningful

According to Dr. Hyden, although patients continued to experience COPD symptoms and some rehospitalizations, they found that HBPC was meaningful for reasons outside of physical care (Table). “The aspects of care that patients and their caregivers perceived as being meaningful most often were spiritual support and education about their diagnosis and prognosis,” she says. “Palliative care specialty providers are trained to explore patients’ spiritual preferences and beliefs, as well as how they relate to coping with serious illness. They offer support and can coordinate services with chaplains and other community spiritual leaders to support them. This is a holistic model that focuses on the entire person, mind, body, and spirit.”

Dr. Hyden notes that palliative care specialists are also trained to have conversations with patients and caregivers to elicit information that identifies gaps in disease understanding. “They then fill in the knowledge gaps by providing education about the diagnosis and prognosis, what to expect as the disease progresses, and how to best manage symptoms at home,” she says. “Empowering patients with a better understanding of these factors often results in less stress and better HrQOL. This information can ensure patients are comfortable with plans for their own care moving forward.”

An Extra Layer of Support in the Home

In light of the findings, Dr. Hyden says HBPC should be viewed as a service that patients and caregivers find meaningful. “When a serious illness like moderate or advanced COPD is diagnosed, this should serve as trigger to offer a referral to palliative care,” she says. “Palliative care can overlap with other healthcare services and is covered by Medicare and most commercial insurances. Knowing that HBPC can have a positive impact on patients with COPD and their caregivers by offering an extra layer of support in the home setting should drive healthcare providers to refer their patients to this service.”

More research is needed to explore how well clinicians understand palliative care and their comfort level in discussing palliative care with patients with COPD to determine if these are barriers to HBPC referral. Dr. Hyden notes that some studies have indicated that clinicians are uncomfortable with prognostication in COPD. “Addressing these issues may help us develop solutions for better access to HBPC for patients with COPD,” she says. “Ultimately, we need to be better at getting these patients the right level of care at the right time.”