By Stacey Kusterbeck
There is growing awareness of the need to integrate palliative care in the home health setting. “Palliative care is for acutely ill patients. Home health care patients are exactly this type of patient. It is very strategic to move in that direction,” says Jingjing Shang, PhD, RN, FAAN, a professor at the Columbia University School of Nursing. However, two important ethical questions remain unanswered. Is the home health care workforce ready to deliver palliative care? And are home health patients ready to accept palliative care?
In a new Columbia University School of Nursing study, researchers conducted a literature review to find out what survey tools were available to assess patients’ or caregivers’ attitudes on palliative care.1 None of the surveys were geared toward the home health care setting. The researchers developed two questionnaires about palliative care geared toward home health care clinicians, patients, and caregivers.
“Home health care clinicians include nurses, physical therapists, occupational therapists, speech therapists, and social workers. It is quite a multidisciplinary team,” observes Ashley Chastain, DrPH, MPH, the study’s lead author. Next, the researchers interviewed 35 clinicians, 15 patients, and 16 caregivers at a large urban home health care agency about the questionnaires. First, though, the researchers wanted to assess the participants’ palliative care knowledge. The first survey question was: How would you assess your knowledge of palliative care? About half of the patients and caregivers had never heard the term before. Only 13% said they had sufficient knowledge of palliative care.
In light of this, the researchers provided a short description of palliative care at the beginning of the survey. Some patients and caregivers felt that the description given was difficult to understand. One stated, “I’m not really sure what palliative care is, based on [the] definition given — [it] doesn’t really come ‘alive.’ You should add living examples that are quick to read.” Participants also wanted clarity on the differences between palliative care and hospice services. Participants preferred the terms “legal primary caregiver,” or “power of attorney” instead of the term “surrogate decision-maker.” “It became clear that the current definitions of palliative care are quite academic. Those did not really resonate with most patients and caregivers,” says Chastain.
One caregiver expressed regret for a previous decision to decline palliative care on behalf of a loved one because of not knowing what palliative care was. Participants generally had favorable attitudes toward palliative care. “For us, this was a sign that if these services were offered, and the appropriate education was there, that they are likely ready for this,” says Chastain.
As for clinicians, less than half reported having had previous training in palliative care. Clinicians had some misconceptions about pain management, opioid use, end-of-life issues, and ethical and legal aspects of palliative care. Almost all clinicians had positive attitudes about palliative care. However, only 54% felt confident in their ability to provide palliative care in the home setting.
In the hospital setting, ethicists can encourage clinicians to educate patients and caregivers about palliative care early in their illness. That way, when the home health care provider meets the patient, whether the patient is coming from the community or the hospital setting, the patient is more likely to accept palliative care. “Palliative care can be provided in all different healthcare settings. The more palliative care is introduced, the more it becomes commonplace. Then everybody might be more willing to accept these services, if offered,” says Chastain.
Reference
- Chastain AM, Shang J, Murali KP, et al. Development of and testing novel questionnaires assessing palliative care-related knowledge, attitudes, and confidence among home healthcare clinicians, patients, and caregivers. Home Healthc Now. 2025;43(1):21-31.
There is growing awareness of the need to integrate palliative care in the home health setting. However, two important ethical questions remain unanswered. Is the home health care workforce ready to deliver palliative care? And are home health patients ready to accept palliative care?
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