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Start the most difficult conversation American isn’t having- the conversation about our end of life preferences

Securing Hospice Care: An Interview With Dr. Kathleen Unroe

Nursing home patients have longer hospice stays when compared to similar individuals receiving care at home or in their local community, according to a new study published in the Journal of General Internal Medicine. Nursing home patients also tend to be older, less financially secure and female.

Researchers, led by Dr. Kathleen Unroe, a Regenstrief Institute investigator and Indiana University Center for Aging Research scientist, determined that nursing home hospice patients are more likely to receive aid from both Medicare and Medicaid and suffer from dementia. Nearly 3,800 patients were surveyed.

The study, which also details how hospice patients move-in-and-out of care settings, aims to provide policymakers with guidance for best practices. One-third of U.S. hospice patients live in nursing homes.

Unroe spoke with Life Matters Media about the benefits of hospice care, the importance of advance health care planning and Medicare spending.

What inspired you to study hospice care in nursing homes?

I’m a nursing home physician, and I care for patients in a facility that specializes in dementia. I’m interested in understanding more about who in nursing homes uses hospice, who doesn’t and how it impacts the quality of end of life care.

I’m also interested in health policy, and there are also some tricky things about how the hospice benefit is structured. For example, if a patient is hospitalized and clearly near the end of life and hospice eligible, often he or she will still go to a nursing home on a skilled nursing benefit, because of the way that benefit is paid.

In this particular data set, I have linked Medicare and Medicaid claims, as well as minimum data set assessments on nursing home patients. It’s a nice, rich data set to follow the experience of patients.

Why are nursing home hospice patients older and less financially secure?

Nursing home hospice patients are reflective of the overall nursing home population, which tends to be a very elderly population, which also tends to be female. Nursing home days are predominately paid for by Medicaid.

Being in a nursing home is so expensive that most people will become impoverished to the point where they become eligible for Medicaid in order to pay for their care. Medicare does not pay for long-term care, so a person has to pay for nursing home expenses out-of-pocket or have long-term care insurance pay until Medicaid eligibility. Many people exhaust their resources to pay for 24-hour custodial care.

Dr. Kathleen Unroe
Dr. Kathleen Unroe

Nationally, 40 percent of Medicare patients die with hospice care. Your thoughts?

Hospice is only a few decades old, and it is now reaching 40 percent of all people. I think that when you consider how many people have short lengths of stay – in my study, 27 percent had hospice for a week or less – then yes, the benefit is underutilized.

Late referrals are especially problematic, because people are not getting enough time to truly benefit from the services hospice provides. Why is it only 40 percent, and why are so many people of that 40 percent on hospice for such a short time? I think there are a number of reasons.

In the nursing home population, prognosis is especially difficult. There are a lot of people with advanced dementia as a primary cause of death or suffer from a number of medical problems. It is not as clear-cut a trajectory as terminal cancer.

So, it is difficult to know how much time someone has left, and it complicates referral to hospice, because the hospice benefit has the six-month eligibility criteria. Two physicians need to confirm that your prognosis is six months or less. People wait.

There are also some people who will never accept hospice as it is currently structured. Hospice replaces your Medicare Part A benefit, so you have to forego curative therapy. Some people will never seek it.

How can physicians and nurses encourage more seriously ill patients to opt for hospice care earlier?

I think the heart of it is advance care planning. In Indiana, we just launched a POST program, Physician Orders for Scope of Treatment, which is based on the national POLST model.

I think POST makes a big difference, because if nursing homes build into their policies and procedures- or even just their culture- a goal of addressing these issues in a proactive way, they can better identify people whose goals-of-care are comfort focused.

Advance care planning helps get end of life conversations started earlier, and even helps build relationships between hospices and nursing homes. But advance care planning is so often missed. Every nursing home patient deserves an hour-long conversation about prognosis, about goals-of-care, about expected symptoms and complications from disease.

Medicare declined to reimburse physicians for end of life conversations in 2015, would that have helped to encourage advance care planning?

Time and reimbursement are issues, but I have also come to the belief that it doesn’t have to be the physician to lead these conversations. Yes, physicians must be involved, and I don’t want to absolve us of our incredibly important role in these conversations, but don’t leave it all up to us.

I think that social workers and nurses that have received additional training in having these conversations can lead, and then a physician can be involved to answer specific questions and sign orders. We need to encourage our partners to create time and space to have these conversations that should not be rushed. I don’t know if doctors can ever have these conversations with every patient, or at least not be the only person involved.

Yes, providers should be reimbursed for doing this important part of our job.