Hospices Adapt to Support Patients Without Family Caregivers

Cultural changes to family dynamics and demographics may require hospices to adjust their care and business models to care for patients who have no family support.

Since its inception, hospice has been centered on both the patient and family, not only through providing services to the family but also relying on them as an essential part of the patient care team.

Patients often lack caregivers due to outliving their relatives, being childless, divorce, having no siblings, or changes in geographic mobility. Few hospices can maintain round-the-clock care for patients in their homes, thus a lack of family caregivers can contribute to increased hospitalizations or nursing home admissions, as well as create ethical and legal challenges. Many of these patients have limited decision-making capacity and need assistance making health care choices, including decisions regarding hospice enrollment.

A 2014 study found that older adult patients without family support, often called “unbefriended,” often do not enroll in hospice due to inadequate state policies governing third-party medical decisions for these patients. With 1.4 million patients in hospice care and approximately 4% of older adults unbefriended, hospices can expect to see more of these patients as the population ages and hospice utilization continues to rise, according to the American Bar Association’s Commission on Law and Aging, 

“Demographically we are going to have to keep thinking about this,” said Katherine Ornstein, M.D., of the Icahn School of Medicine at Mt. Sinai Medical Center in New York. “There is a lot that we don’t know because I think the role of other relationships, friendships, outside of the traditional family that support older adults in the community needs to be studied a bit more, but I think that it is such an important issue. We know how difficult it is for individuals who have devoted family members, what about those who don’t?”

Different states have different mechanisms for how to care for unbefriended patients; many have enacted public guardianship programs, in which a state social services agency appoints an attorney to become the patient’s legal guardian. The State of Indiana operates a Volunteer Advocacy Program in which the attorney appointed as guardian assigns a volunteer trained to make third-party health care decisions to the patient. 

However, these types of guardianships introduce a significant potential for conflicts of interest that could lead to unnecessary or undesired use of services by the person under guardianship. It also could result in the denial of necessary services when cost cutting is mandated,  according to Alexia Torke, M.D., associate director, Indiana University Center for Aging Research, Regenstrief Institute in Indianapolis.

Encouraging referral partners and other health care providers in the community to discuss advance care plans with patients can help prevent later complications in medical decision making, allowing the patient’s wishes to be documented before their decision-making ability becomes impaired.

Early conversations are positively associated with decisions to limit or withdraw life-sustaining treatments, fewer in-hospital deaths, fewer unplanned hospital admissions, shorter hospital stays, satisfaction with end-of-life care, and increased odds of receiving strong opioid pain medications in the last 24 hours of life, according to a study in the March issue of the Journal of the American Medical Directors Association.