- Dying in the home can lead to greater satisfaction of end-of-life care, according to research.
- Patients’ preferences around death should be respected when discussing palliative care options.
- Dying in the home can not only benefit patients and their families, but can also reduce healthcare costs.
Older adults who die in their home are more satisfied with their end-of-life care than those who die in hospital settings, a new study has found.1
Researchers out of Johns Hopkins University analyzed data from the National Health and Aging Trends Study (NHATS) of Medicare beneficiaries with and without cognitive impairment who died at 65 or older to see if place of death affected their satisfaction of end-of-life care. The team found that the most common place of death for seniors with cognitive impairment was in the home. People without cognitive impairment were equally as likely to die at home or in the hospital.
Based on the seniors’ “last month of life” interviews, researchers found that participants were more satisfied with the end-of-life care they received when they died at home.
“Many people ‘bond’ with their home, which is known as place attachment,” Natalie G. Regier, PhD, an assistant professor at Johns Hopkins University School of Nursing and the study’s lead author, tells Verywell.
“Human beings, even ones who live alone, can actually experience a reciprocal emotional relationship with a place, meaning there is interaction with and investment in that environment.”
Why Dying at Home Can Lead to Improved End-of-Life Care
While Regier’s study was a secondary data analysis—meaning she was unable to do a deep dive into specific reasons behind satisfaction ratings—she says there are some hypotheses as to why people reported higher satisfaction ratings when they receive care at home.
Based on her own research and many other studies, people experience a comfort in being in their own home, “particularly during vulnerable and uncertain time periods such as coping with an illness.” For people with moderate to severe dementia or cognitive impairment, hospitalizations can be traumatic, she explains.
“The unfamiliar and often chaotic hospital environment can lead to anxiety, confusion, and disorientation for this population, and is associated with poorer end-of-life outcomes,” Regier says. “Furthermore, hospitals are usually not tailored for meeting the needs of people with dementia.”
Even for people without cognitive impairment, there are various reasons why palliative patients prefer to die at home, says Susan Enguídanos, PhD, an associate professor of gerontology at the University of Southern California. Enguidanos has researched home-based palliative care and has found that patients who receive in-home treatment report greater satisfaction with care than hospital patients.
She says while higher satisfaction rates may not specifically be tied to dying itself, it likely has to do with the type of health care they receive in the home, including nurses, social workers, doctors and chaplains. It’s also often preferable to be surrounded by family in the home rather than a more sterile environment, like a hospital, that lacks the same privacy and comfort.
Enguídanos points to a study that shows cancer patients who died at home had less physical and emotional distress and better quality of life at end of life compared with those dying in the hospital. The study also found that ICU or hospital deaths were associated with an increased risk of mental health distress for caregivers.2
Reduced Cost of Care
Aside from the emotional and mental benefit, people who received home care were less likely to visit the emergency department, resulting in lower costs to the health care system, according to one of Enguidanos’ studies.3
“Our hypothesis is that because they received more and regular care in the home, plus their caregivers received training in how to manage their symptoms [and] they had access to a nurse (and doctor if needed) 24/7, they had improved management and therefore had less need for emergency room visits and subsequent hospitalizations,” Enguidanos tells Verywell.
Need for Patient Planning Around End-of-Life Care
Based on research, it’s clear that patients’ preferences and feelings around end-of-life care can have a significant impact on the quality of their last days. Regier and her colleagues’ findings indicate that discussions of end-of-life care planning can help inform palliative policy and “facilitate greater well‐being at end‐of‐life.”
For patients with dementia, Regier says these end-of-life care conversations should happen as soon as possible. Preferably prior to the onset of dementia, or before dementia or other illnesses have progressed to more advanced stages.
“Conversations about goals of care help to guide the treatment approach, keep the lines of communication open, and make sure everyone is on the same page regarding what constitutes optimum care for the patient,” Regier explains.
What This Means For You
Patients should be involved in their end-of-life care planning, as research shows preference around care can have a significant impact on their well-being.
Enguidanos echoes this stance, and says that given the evidence of improved patient outcomes for home-based palliative care and lower medical costs, it makes sense to support this model of care should a patient desire it.
“I do believe we need to transform our payment structures to better support this type of care,” Enguidanos says. “Currently, there is no widespread payment structure to support home-based palliative care; in other words, Medicare does not pay for this care.”
>Regier says end-of-life planning needs to include more than just medical information or certain aspects of advance care planning, like preference for life-sustaining measures. This is because “patient preference for the actual place of death is often overlooked.”
This is especially true for seniors with cognitive impairment, she says.
“Research shows that very few people with dementia who are at end-of-life are treated with palliative care, despite the many benefits of this approach (e.g., decreased behavioral symptoms, decreased pain),” Regier says.
“There needs to be greater awareness among providers and families that a palliative and hospice care are wholly appropriate and beneficial for people living with dementia and not just the cognitively healthy.”
- Regier NG, Cotte VT, Hansen BR, Taylor JL, Wright RJ. Place of death for persons with and without cognitive impairment in the United States. Journal of the American Geriatric Society. 2021 Jan. doi.org/10.1111/jgs.16979
- Wright AA, Keating NL, Balboni TA, Matulonis UA, Block SD, Prigerson HG. Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers’ mental health. Journal of Clinical Oncology. 2010 Oct;10;28(29):4457-64. doi:10.1200/JCO.2009.26.3863
- Brumley R, Enguidanos S, Cherin D. Effectiveness of a home-based palliative care program for end-of-life. Journal of Palliative Medicine. 2003 Oct;715-724. doi:10.1089/109662103322515220
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