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.
“All qualitative research exploring patients’ and family caregivers’ perspectives highlights that it’s up to health care professionals to start these conversations,” Silvia Gonella, R.N., co-author of the study, told Hospice News. “Unfortunately, this often does not happen, for different reasons —lack of time, difficult topic that staff prefers to avoid.”
Advance care planning ideally should begin as early as possible in the course of the patient’s illness, before they reach a crisis. Formal plans include documents such as advanced directives, living wills, and physician orders for life sustaining treatment (POLST forms) that can be entered into the patient’s electronic medical records. A key component of these conversations is to identify a third-party, a friend or relative or other representative, that the patient chooses to make decisions on their behalf should they become incapacitated.
“When you have someone in this category who still has decision-making capacity, it is important to get them to name someone who they would like to oversee their care. Many times, in conversation, they are able to name at least one close friend,” Torke told Hospice News.
In the absence of advanced planning, hospices may find themselves in difficult situations with unbefriended patients. Torke noted that patients with fewer social supports can often end up in acute care situations and may not receive the right care at the right time. And while hospice care can be given in long-term care facilities, patients must often navigate complicated insurance stipulations. This could all lead to higher medical costs and delayed enrollment in hospice.
“Hospices may be harmed a bit, but the person who really suffers is the individual who is walking their last chapters. It is our fiduciary responsibility to educate and provide resources. We need to understand what the patient needs and act on that,” Tim Ihrig, M.D., chief medical officer at Crossroads Hospice in Oklahoma City, said. “We have to understand why these patients are so expensive. It’s not because they’re old, unbefriended, and so on. [Their care] costs so much because of what the health care system does to them that neither enhances their quality of life or longevity.”
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Hospices Adapt to Support Patients Without Family Caregivers
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