Physician John Mulder: Combat Misconceptions About Palliative Care

Patients, families and clinicians in other fields need a better understanding of palliative care in order to fully realize the clinical and financial benefits of those services, according to physician John Mulder, M.D. The palliative care community also needs a more substantial reimbursement structure to ensure that providers can meet rising demand and to attract new talent to this medical specialty.

Mulder is well-known in the hospice and palliative care community through his work at several organizations and for speaking at national industry conferences. Currently, he is chief medical consultant for hospice and palliative care at Holland Home, the largest provider of elder care services in Michigan. He also serves as executive director for the Trillium Institute, which provides education for clinicians on managing serious and terminal illness.

Mulder is director of palliative medicine for the Michigan State University College of Human Medicine, medical director for palliative care at Metro Health, University of Michigan Health, and program director for Mercy Health Grand Rapids palliative medicine fellowship program. He is also a member of the board of directors for the data analytics firm Acclivity Health. In 2019, he received the Project on Death In America Palliative Medicine Community Leadership Award from the American Academy of Hospice and Palliative Medicine.

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Hospice News spoke with Mulder about misconceptions that plague the palliative care community and how providers, policymakers and payers can move the needle on education, reimbursement and improved access to those services.

What are some of the misconceptions that are out there that people have about palliative care?

To understand the misconceptions, it helps to understand the history of palliative care, which grew out of the hospice industry. Hospice began here in the United States in 1974 as a predominantly volunteer organization that was centered around the work of nurses, social workers, and chaplains providing assistance to folks in their dying days. When the Medicare Hospice Benefit came into being in 1982, part of the structure was that physicians would be a part of the interdisciplinary team and the hospices would receive Medicare funding. We’re required to have a medical director. 

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In some circles, I think that some of the hospices were saying: What do you mean? We don’t need no stinking doctor, we are getting by just fine without them. But others really sort of embrace that reality that the docs can be a valuable member of this team. Doctors embraced that role and really became meaningfully functional members of the team, began understanding and applying complex symptom protocols to these two dying patients. It became a really meaningful advance in medicine.

In the mid-to-late 1980s, there were groups of us that said that what we’re doing is something unique, something special, and two things emerged out of that. One was: Why do you have to be sick and dying to be able to receive expert symptom control?

We started seeing opportunities to expand the application of these protocols outside of the hospice realm. Physicians began working and doing this independent of the hospice team, because these are patients who didn’t qualify for hospice but still could benefit from that level of skill. 

The other thing that happened was understanding that what we do in medicine is unique and distinct from other branches of medicine. We set out to form the specialty of palliative medicine in 1997. We started offering certification exams so people could demonstrate expertise and specific skill and sort of within the palliative care realm.

When that was established, we really felt that we wanted to become official card carrying members of the medical subspecialty field. That occurred in 2006; we became a formalized subspecialty. Because we grew out of the hospice industry, both the lay public as well as the medical establishment still considered us part of the end-of-life community. Quite frankly, that’s one of the misconceptions that we’re somehow still seeing as exclusively within the palliative realm.

I remember having a doctor approach me and say, “Boy, I’ve got a lot of patients that I really would like you to see, but I’m not sure they’re ready yet.” I said that my job is to enhance quality of life and relieve the burden of suffering. Help me understand when someone’s not ready for that. 

In many circumstances, the message is that [patients] are not ready because they’re not dying yet. That’s one of the hurdles that we in the discipline of palliative medicine have really continued to seek to overcome.

Are these misconceptions kind of limited to the general public? Or do they also exist among clinicians and other health care fields?

We still see it within the medical profession. I don’t necessarily blame them. Many have not been in an environment in which they’ve been exposed to [palliative care] in a meaningful way such that their preconceived notions could be challenged.

Do you feel that these misconceptions impede access to palliative care for patients?

So I think that the term “impede access” is really importantly worded. We in palliative medicine do not believe that people have impaired access to us. It is more attitudinal than anything else. The misconceptions impede access by virtue of the fact that you’ve got people who need it, who are being cared for physicians, who because of their misconceptions are not referring them to us. This is because it’s not necessarily as widely promoted within the general public realm, as it should be. You don’t necessarily have patients seeking it.

In other words, you don’t have direct-to-consumer advertising on TV for palliative care. So patients are not running to their doctor to say they need some that palliative stuff as much as they might a psoriasis medication that they see on TV. You don’t have a lot of consumer demand for it, because how would they know?

We are seeing meaningful advances in this. We’ve got a long way to go, but we’re seeing meaningful advancement in different pockets of the country and different pockets of certain specialties. I think we’re doing better than we were.

How do you think greater understanding and access to palliative care would impact patient outcomes and quality of life?

The seminal article for that was by Jennifer Temel [et al.] in The New England Journal of Medicine in September 2010, in which she and her cohorts demonstrated that for folks with terminal lung cancer getting a palliative consultation early in the course of the disease improved their perception of their level of comfort and symptom management.

They experienced 50% less depression, fewer days in hospital and fewer [emergency department] visits and lower costs. They also lived on average about a month longer than the folks who received usual treatment. They sent separate [patient] groups. One received usual treatment; the other received usual treatment plus a palliative consult. That was really one of the first scientifically proven evidence that palliative care makes a positive difference in the outcomes.

If it were a drug, Temel would have made billions of dollars and everybody would be clamoring for it because it lowered costs, improved outcomes and helped people live longer. I see oncology drugs that don’t improve outcomes or longevity by 30 days that are easily approved and wildly popular. 

Over the last decade since she published that article, we’ve seen other articles that have replicated and done similar studies with different disease states also demonstrating that palliative care leads to better outcomes.

What is the role of the palliative care provider in dispelling these myths?

The first is to do our job well. I still remember back in 2001 when I was starting a clinic at the cancer center at Vanderbilt University, the oncologists would reluctantly send patients to me. Those patients would come back and ask why they hadn’t been sent for palliative care earlier, because they felt so much better and their doctors were like: “Oh, I had no idea.”

I had a 21-year-old patient with curable cancer referred to me, and my consult said for end-of life-planning, “Why are they pursuing end-of-life planning for someone with a curable cancer?” 

He had been diagnosed, admitted to the hospital and placed on the first round of chemo three weeks earlier, and it was devastatingly symptomatic for him with intractable nausea and vomiting. He said that there was no way we could do this anymore. His parents were devastated, but they agreed that he couldn’t deal with this.

I said, “How about if we simply treat his nausea and vomiting?” The parents said, “Well, they’ve done everything they can.” I assured them that they have not; they’ve done everything that they know. I had him eating chicken McNuggets and drinking Coke the next day. He was able to complete this treatment.

Some weeks later, when he was in remission and leaving the hospital for the last time, his parents said they were so grateful and asked if there was anything they could do. I told them to thank their son’s physician for referring to palliative care. Even though the doc was doing it for the wrong reason, I wanted the doc to know that the family knew and appreciated how much palliative was able to do for them. That patient is still alive today.

To dispel the myths, number one, we need to do our job and do it well. I think that the other thing is that we need to be in constant communication with our colleagues, our non-palliative colleagues. I know in the early days of setting up programs in hospitals, I would spend inordinate amount of time just hanging out in the doctors lounges, meeting people coming through explaining what I did. I wasn’t necessarily trolling for referrals, but I wanted them to understand what palliative was and the difference that this could make in the lives of their patients.

I do a lot of speaking in community forums and in any service organization or church group that wants a lecture. I’ll go speak to them, so they have an understanding of what it is that we do.

How can providers educate physicians and patients and families to boost referrals?

That happens as much informally as it does formally. I’ve connected with lifelong learning programs at four area universities to get in there to do talks about the work that we do. Try to keep things informative and lighthearted, so that they take away a positive spin on what it is.I inject a lot of hope and encouragement in the way that I present. I take advantage of social engagements. If I am sitting on a plane and someone asks me what I do. I say, thanks for asking. I’d like to share a little bit about what it is I do.

In a formalized way , I try to get in front of their departmental meetings at the hospital. Give me five minutes at the Department of Medicine meeting, or the Department of Surgery meeting, or the Department of Pediatrics meeting. So I can explain what it is that we do and how it might benefit their patients. That’s all you need to get the ball rolling. Not everybody looks at the New England Journal of Medicine to make a determination of what they’re going to do with their next patient. They’re looking to their peers and their colleagues.

What kind of changes do you think are needed at a system level to sufficiently scale palliative care to meet the rising need?

The systems need to understand that the palliative care is an essential service for their patient care activities. It’s not an add-on. It’s not extra, It’s not the icing on the cake . It is an essential service. That needs to be number one.

They need to understand that as a practice itself, it’s a losing proposition. If I’m out there as an independent practitioner, I’m not going to be able to make a living. Certainly not what my other physician colleagues are receiving, because it doesn’t reimburse that well. Hospital systems and payer sources, the insurance companies are going to need to understand they have to subsidize these essential activities for the good of their patients and the good of their system. They’re going to have to hire nurses and nurse practitioners and even hire physicians to do this work.

Not only is that the right thing to do because patients and families will benefit from it, but also because it saves money for the health care system, especially the payer sources. Sometimes the hospital systems ask why they would want to avoid hospitalizations — that’s how we make money after all. But there are some other financial dynamics and metrics that do make sense from a hospital perspective to support this type of service. But especially the payer sources need to continue to develop innovative products to help under underscore the importance of this service to their beneficiaries.

Are there regulatory or legislative actions needed to improve access to palliative care?

From a legislative perspective we want to make sure that the disincentives are removed. I had a conversation where we looked at the potential challenges of doing home visits. For palliative providers, there are a couple of thresholds that you have to cross over to be able to bill for a home visit. Sometimes that’s a disincentive for getting involved in home-based care. These might be patients that have a difficult time getting to the doctor’s office. If they can’t get the home visit, they just may not go. Those are issues that can be fixed legislatively.

On a broader scale, we need initiatives that bring in more palliative care clinicians and help the reimbursement issues. Reimbursement for our field is not as lucrative as for others. That can be done both from a regulatory perspective as well as the legislative perspective. You have certain sub-specialists that can make in the upper nine figures a year, and you’ve got primary care docs and palliative docs that are at the very lower end of the pay spectrum at the peak of their careers. Incentives can be developed for both regulatory as well as legislative areas that would help to increase the numbers, but one of the ways you help to increase the numbers are by incentivizing their salary and benefits.

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