Four Challenges Inhibiting Palliative Care Growth

 In Expanding Services

What is palliative care? Ask 10 providers and you just might get 11 different answers. Many define palliative care as pre-hospice care, others see it as pain and symptom management for serious diseases, while some describe it as holistic care for chronic and serious conditions. The reality is there are numerous forms of palliative-type care in practice today and demand for all these types of care is increasing. But, how do you position your palliative care practice for growth when definitions are all over the board?

Recently, Stan Massey of Transcend joined Samira Beckwith, CEO of Hope Healthcare, on a NHPCO webinar to talk about communication barriers, clinical inconsistencies and operational obstacles that could inhibit the growth of palliative care. Below are a few of the highlights of the conversation. NHPCO members can access the full webinar through the NHPCO website.


1. Inconsistent definition and understanding of palliative care

Samira: There really is not a clear and consistent definition of what palliative care is, and because of that, if somebody’s referring physician says to them, “I’d like you to see a palliative care specialist,” people don’t know what that means, and people are still fearful about what they don’t know.

People are afraid that maybe that means now I’m closer to hospice, and because people still misunderstand hospice, I think that’s an obstacle. So, until we as a healthcare community can better explain, define, and have consistent conversations about goals of care, how palliative care fits in, I think we’re going to continue to see that misunderstanding, and that then remains an obstacle.

Stan: In 1990, the World Health Organization specified palliative care as a service separate from hospice care. Then, in 2006, palliative medicine was officially recognized as a distinct medical specialty and the number of hospitals offering palliative care as a specialty quadrupled. In the years since, most hospitals and hospice providers have added some form of palliative care to their services.

At Transcend, we started tracking consumers’ understanding and perceptions of palliative care in 2012 because the Center to Advance Palliative Care was trying to refine definitions. Back then, 70 percent of people said they’d never heard the term before. We’ve seen that change somewhat in recent years. Awareness has increased, especially because of additional media coverage during the COVID pandemic. It’s gone from about 30 percent awareness to about 45 percent of people who have said, “I have at least heard the term before,” so that’s some progress.

What’s really been amazing to me is that research consistently shows that many physicians admit they do not distinguish between hospice care and palliative care. They see palliative care as comfort care for the very end of life. That is missing such a huge opportunity and need, as we define palliative care for any stage, any illness, any age, in conjunction with curative treatment, improving quality of life.

It really is almost the polar opposite of end-of-life care. Yet, that misunderstanding still persists. If we don’t define it well among those that are referring to palliative care and those that we expect to welcome palliative care into their lives, it really makes it a major obstacle.

Samira: There’s a special way to have the conversation to let people know that this is about providing relief of suffering. I think that’s really the major point about palliative care that needs to be stressed, not just the focus on pain control and symptom management, but the relief of suffering and the fact that people suffer when they have serious illness or advancing illness, so we’re not even talking about terminal prognosis or illness. We’re talking about serious illness.

We have to give people language that everyone can understand, and that people can hear. Sometimes, we talk louder to someone who doesn’t speak English. Having grown up in a family where we came to this country when I was five, people just talk louder when you don’t understand English. That doesn’t help, so we have to find language that people can hear. If they can’t hear it one way, let’s find other ways to explain what palliative care is. First, we need a definition that everyone understands or agrees to, and then we need to find different ways to talk about it, language that people can understand.

2. Limited understanding of palliative care benefits to patient, family, payer and health system

Stan: We’ve talked for a long time now about a quadruple aim in healthcare, that focus on the right care by the right people at the right time at the right cost. A few years ago, the Center for Hospice and Palliative Care in Buffalo, New York, did a formal study.

The study incorporated them as the provider, a major healthcare system or hospital in their region, and a major insurance provider. That study alone showed that the addition of palliative care – not hospice care per se – in the last three months of life saved the payer $4,000 a month per patient. That’s $12,000 saved per patient in the last three months of life. Then during the last two weeks of life, that difference in cost per patient was a little over $7,000.

In addition, patient satisfaction and family satisfaction was through the roof for those that received palliative care. They had a conversion from palliative care to hospice care at 70 percent versus 25 percent when patients experienced palliative care first, and then a really big outcome was that those patients that transitioned to hospice care from palliative care, their median length of stay was 34 days compared to nine days. So, if you think about the impact of that on length of stay and the revenue that it represents to the provider, it is a win-win-win situation. And, that’s only in the last three months of life.

Patients were better cared for, they had higher satisfaction, the providers got to provide better quality of care and transition those patients to hospice care earlier, get the reimbursement for that, and the payer obviously was delighted that they were delivering quality care at a lower cost per patient.

Samira: We’re listening to what people need in the community, and then having those conversations about how we can either open up our palliative care program so that we can have even more access, or begin palliative care programs, depending on where our communities are in terms of offering those types of programs. Because it’s going to be even more important going forward in the future.

Medicare Advantage plans now are looking at providing social determinants, so that’s opened up the conversation about how we can offer some additional services that will help with quality-of-life palliative care, and start to be reimbursed better for that, so I wanted to just mention that, too.

Stan: It’s really vital to have conversations with those referral sources, whether you’re currently providing palliative care or not, just to assess their knowledge, understanding, opinions and openness to palliative care. Find out if they would be open to referring to a program, especially for home-based palliative care that is providing a service that the referrer’s organization or their office might not.

Simply ask: “Would you be willing to try palliative care with a problematic patient whose symptoms are really hard to keep under control?”

3. Confusion about the essentials of an effective palliative care program

Samira: To start, you’ll need a palliative care physician, advanced nurse practitioner, depending on your state, if that’s an APRN, or depending on how they refer to the advanced practitioners. We also have a nurse that can help with remote monitoring. As a result of COVID, we added a social worker to the mix to help connect with community resources to make the patient and family more comfortable. We also have chaplains if there is a spiritual question, existential crisis that somebody’s in. We’re offering these services in homes as well as in assisted living facilities, and also in nursing homes.

Stan: If you aren’t really looking at or paying attention to the existing and rapidly emerging technology that’s available out there from some pretty cool companies for remote patient monitoring, COVID really opened the genie bottle on telehealth and remote care. Not only did patients and families embrace it, in fact, a survey Transcend conducted revealed that more than 60 percent of family healthcare decision makers said that they had experienced telehealth to some degree and would really embrace it going forward, because, the family saw value in what telehealth can provide.

Additionally, staffs are shrinking. It’s getting harder and harder to recruit people to healthcare. Younger generations aren’t going into healthcare at quite the pace prior generations did. We are going to need technology to have the efficiencies required and the productivity required to provide care to the coming tsunami of Baby Boomers.

If you’re not already tracking the direct correlation of patients on your palliative care program and what their outcomes are, especially in the language that’s really important to other providers and payers, you need to document how palliative care helps your patients reduce hospital admissions or readmissions, reduces ER visits, increases patient satisfaction, helps increase things like HHCAPHS and HCAHPS scores – because data talks, especially when it relates to financial implications.

4. Weak reimbursement for palliative care

Stan: The present stand-alone reimbursement for palliative care means a lot of providers lose money on their palliative care programs. Those providers with a larger continuum of services may benefit from emerging programs like CMS’ Seriously Ill Population program and other initiatives that allow palliative care-type services at better reimbursements. Medicare Advantage programs have the greatest opportunity for innovation and creativity. Whether you’re participating in a program or not, getting your data together and analyzing it is a critical place to start.

Samira: Be sure to know the value you’re delivering to patients, payers and providers. Use that information to help you get fully reimbursed for the value you’re delivering. We’ve also been negotiating with managed care companies to reimburse us to provide a palliative care stay in our hospice house, because the person needs more intensive supervision, or to pay us to provide palliative care whether it be a private payer, too.

Samira and Stan had a lot more to say about leveraging the full value of palliative care during the NHPCO webinar. If you have the opportunity to hear the entire discussion, we encourage you to do so.

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