- A new study examined medical records of people over age 70 with dementia who received hospice care.
- The study showed that a majority of the patients fared better in terms of quality of care and mental health, and they were less likely to be moved to a different facility.
- According to the experts interviewed for this story, hospice care is an underutilized option for people with dementia and can provide support and care for up to six months.
Families of people with dementia are sometimes reluctant to use hospice care. It can feel like you are giving up on your loved one. But hospice care often provides excellent care and relieves anxiety and sadness compared to dementia patients who do not receive hospice care, according to a new study published in Health Affairs.
Researchers at the University of California San Francisco and Icahn School of Medicine at Mount Sinai, New York City, looked at the medical records of 2,059 seniors over 70 who died between 2011 and 2017. Of those, 40 percent had a diagnosis of dementia, and 59 percent of those used hospice care.
“The overall goal of hospice care is to provide dignity, supportive, and comfort measures to end-of-life patients and their families,” says Gail Trauco, RN, BSN-OCN. It includes regular visits by nursing staff, social workers, and clergy and is provided at the patient’s residence, an assisted living or nursing home, a dedicated area of a hospital, or a freestanding hospice.
Most often, children or spouses, proxies for the patients, provided information on end-of-life care their loved ones received. The finding included:
- 52 percent described the care as excellent compared to 41 percent of non-hospice patients
- 67 percent indicated that sadness and anxiety were managed as compared to 46 percent of non-hospice patients
- Hospice enrollees were less likely to be switched to a different care setting in the days before their death
Krista L Harrison, Ph.D., an assistant professor in the UCSF Division of Geriatrics, was surprised by the findings, “We honestly expected it not to be positive. Since the hospice model was designed for patients with cancer we expected end-of-life care to be worse for people with dementia,”
Hospice services are underutilized, says Dr. Scott Kaiser, Director of Geriatric Cognitive Health for the Pacific Neuroscience Institute. “While people may qualify for the last six months of their lives, hospice services are often only initiated in the final weeks or days.”
Families considering hospice care can start the process by contacting the patient’s family primary care physician, who can initiate referrals. Families can also reach out to hospice organizations directly and begin the conversation. According to Trauco, signs it may be time to consider hospice include:
- Increasing hospitalizations and visits to the doctor or emergency room
- A diagnosis of pneumonia, sepsis, cancer, COPD, heart failure, or congenital heart disease alongside dementia
- Weight loss or dehydration connected to trouble eating and drinking
- Difficulty sitting upright or walking without assistance
- Trouble swallowing or frequently choking on foods or liquids
- Minimal speech
- Urinary and fecal incontinence
According to Kaiser, hospice services can help decrease hospitalizations, control pain, and manage other symptoms. “It can fill many common gaps in care, providing a well-rounded suite of services focused on providing comfort and support. This includes services tailored to meet the needs of families and other caregivers. Hospice benefits can also extend to grief support for surviving relatives following a patient’s passing.”
Specialists complete an assessment of the patient and the family before hospice begins to determine the patient and family’s needs. The hospice provider uses this information to tailor the program to their unique needs.
Medicare does pay for hospice care, but “the eligibility criteria could mean that some patients with dementia face hurdles gaining access to hospice or may risk disenrollment,” the researchers found. There must be documentation of continuous decline for patients to remain eligible.
“To be eligible under Medicare, there are a few minor hurdles to clear before hospice can begin. First, your regular and hospice doctor must certify that you are terminally ill. Second, you must accept palliative care for your condition in place of medical care that aims toward a cure for your condition. Finally, you need to sign a document selecting hospice care rather than other Medicare-covered care for your condition,” explains Robert Rees, Vice President of Medicare Sales for eHealth.
The hospice organization can help you sort through insurance and financial obligations. “All hospice organizations should have financial support staff,” says Trauco. “Many are free because of donations and grants if insurance does not cover it.”
Most people who receive hospice care cease to receive curative medical care for conditions unrelated to their terminal illness. They do receive care to keep them comfortable.
Harrison said that hospice significantly benefits enrollees with dementia and underscores the need to ensure access to high quality end-of-life care for this growing population. “Future work should examine whether removing prognostic requirements from hospice eligibility for people with dementia positively affects timely access and care quality.”