End-of-life care and resident choice

The one mantra the long-term care (LTC) industry is trying so hard to memorize these days is “resident-centered care.” In my view, that should mean that the care plan stems from the resident’s needs and wishes—that the resident is always given the power of choice. That applies in the same way to residents who enter a skilled nursing facility for short-term knee-replacement rehab and for residents who transition to hospice care to spend their last days. But do long-term care providers always incorporate a resident’s right to choose in the same way, under every care setting?

The answer is, maybe not.

This spring, hundreds of LTC thought leaders and high-level healthcare policy experts gathered in Washington, D.C., for a day-long conference on end-of-life care. The status report: end-of-life care is in a shambles, really. Several items came to fore:

• A significant disconnect seems to exist between the physician-focused system of treating life-threatening diseases versus the residents’ actual wishes, especially near the end of life, many attendees said.

• An additional layer of disconnect exists between what residents near death wish for and what they believe their personal rights are—especially pertaining to the care decisions they feel they are allowed to ask for and/or demand.

• The current Medicare payment system is off-kilter, many speakers said—a system that encourages people to wait until the very last weeks to seek palliative care.

• Many insurance benefits managers (including some of Medicare’s own programs) still view hospice care as a carve-out—an “all or nothing” choice model.

The D.C. conference dovetailed with another news item: a report that disovered interesting stats on whether a physician would tell a person about his/her own dementia-related disease. Although the Alzheimer’s Association report acknowledged that a person in whom dementia had been diagnosed may have a reduced capacity to choose future care options, the findings indicated that in 55 percent of cases, physicians would not tell a person of his or her dementia diagnosis. Yet, “[I]t is of utmost importance to respect people’s autonomy, empower them to make their own decisions and acknowledge that people with Alzheimer’s have every right to expect truthful discussions with their physicians,” Beth Kallmeyer, MSW, vice president of constituent services for the Alzheimer’s Association, said. “When a diagnosis is disclosed, they can better understand the changes they are experiencing, maximize their quality of life and often play an active role in planning for the future.”

Recent conversations have taught the LTC industry a lot about what is “broken” when it comes to our system of care delivery, especially when it comes to fatal diagnoses and end-of-life care.

What isn’t broken: The compassion and care delivery of skilled-nursing caregivers, regardless of setting—and especially for those who work in palliative care and hospice. Many attendees at the D.C. conference related stories of caregivers staying at the bedside of their dying residents long after their shifts were over, and then later choosing to attend their wakes. No one can ever over-value that kind of passion for a job, nor can we under-appreciate the toll it can take on staffers who faithfully choose to do that job every day.

LTC healthcare administrators need to work hard to mesh these issues, to gain better chronic care protocols and much, much more resident-centered care at the end of life.

Pamela Tabar

Pamela Tabar was editor-in-chief of I Advance Senior Care from 2013-2018. She has worked as a writer and editor for healthcare business media since 1998, including as News Editor of Healthcare Informatics. She has a master’s degree in journalism from Kent State University and a master’s degree in English from the University of York, England.