Dr. Joe Rotella, chief medical officer of the American Academy of Hospice and Palliative Medicine (AAHPM), calls on hospices to maintain their core principles amid a churning sea of regulatory and economic changes.

Rotella began his medical career as a primary care physician in a small, rural town in central New Hampshire, where he stayed for 12 years. In time, he felt drawn to the patients with serious illness, those who probably weren’t going to get better. He saw health care practitioners “running away” from patients like these and began to wonder who was running toward them.

By 1999, this had led him to a new career, beginning as a medical director in a community-based program in Kentucky. Now, Rotella will soon retire from AAHPM. 

Hospice News sat down with Rotella to discuss the ways hospice and palliative care have changed during his tenure in the space, as well as the forces shaping the field’s future.

What are some of the accomplishments you’re most proud of during your time in hospice and palliative care?

There’s so much to think about. It’s spanned about 30 years. It has just seen so much growth in hospice and palliative care.

One encouraging thing is that we’re now having this conversation more than we used to. We’ve seen the development of hospice and palliative medicine as a recognized medical specialty. We have come together as an interprofessional field to provide this whole-person care, and we’ve actually laid out national guidelines for how to do that.

I’m proud that I’ve been able to be part of the Clinical Practice Guidelines for Quality Palliative Care, now in its fourth edition.

We were able to set those standards that say that this is about whole person care. This is about working together as teams, that we start with a comprehensive assessment that doesn’t just check in with you. What are your physical concerns? What are your medical problems? What matters to you? How are you doing socially? How are you doing spiritually? How are you doing mentally and emotionally?

I’m just very proud that we’ve really defined our specialty as being centered on the whole person. When I think about it, what really appealed to me way back in 1995, when I started working with that tiny hospice, is the effort to humanize what otherwise can be a very disorienting and alienating experience. We want to place human beings in the center of our care.

I’m proud that we had a project we did with the Hospice and Palliative Nurses Association called Measuring What Matters. We brought together experts in the field and said, “What quality measures are out there that would really indicate we’re providing good quality palliative care, and what’s missing?”

We were able to put out a Top 10 list of quality measures at the time that were the best ones used. Since then we’ve actually helped develop additional measures like feeling heard and understood or getting the help wanted with pain.

In the area of policy and quality, we’ve made a lot of progress. I think we have a long way to go to be able to say that we’re providing palliative care to everyone with serious illness, regardless of their stage of illness, regardless of whether they may ultimately be cured. We’ve got parts of the puzzle pieces in place, but we don’t have the continuum yet.

But we sure have a lot more going on than we did back in 1995. In fact, when I joined the academy in 1997, it was called the Academy of Hospice Physicians. It’s now the American Academy of Hospice and Palliative Medicine. So palliative care was really hardly even a concept back then, but now we see that most hospitals have it. Many community-based programs are popping up and that’s a good thing.

What are some of the ways that you’ve seen the field change during your tenure in hospice and palliative care?

This can be seen as maybe a good thing and also, in some ways, a bad thing. When we first started, we were really sort of a grassroots movement outside of standard medicine. The earliest hospices were voluntary hospices. There wasn’t a Medicare Hospice Benefit that paid for it or called it medical care.

So now over a few decades, we’ve got palliative care as really a core part of medical care. That’s great. It also sometimes means that we might forget some of the things that we based it on in the first place. So I’m happy to say that we’re a recognized medical specialty. Our specialty is also interprofessional, so we need to think broader than the way that some other specialties do. We now have ways of getting reimbursed to provide this care to people through maybe a Medicare Hospice Benefit or certain alternative payment models that at least cover some aspects of hospice and community-based palliative care.

What I worry about sometimes is that the founding principles that were based on humanizing this care for the whole person can get lost in the details of who’s paying me to do what, or what regulations let me provide or not provide. It’s a lucky thing that, when we provide the right care for people based on what matters to them, we usually avoid certain costs and waste that would otherwise occur. Not only do they have a better life, maybe even live longer, but it saves the system money. That’s great when that happens.

What I worry about is that people will think we’re here to save the system money. We’re not here to save the system money. We’re not here to generate an exhaustive list of regulations and policies. We’re here to treat people. We’re here to take care of human beings to place them at the center. That means sometimes we make decisions for that patient and don’t save the system money. That’s okay. That’s not why we’re here.

We’ve grown and become part of medicine. We’ve mainstreamed — more of the public knows about us, although again, there’s a long way to go. At the same time, I think we have to somehow connect back to the roots of why we exist and just make sure that we don’t become too much a part of organized medicine.

We can always step a little bit outside of that and say, “Maybe the system isn’t doing everything it can right now.” We place patients first, not reimbursement, not coding, not regulatory stuff. If we can hang on to that and bring all these resources from being part of this crazy quilt of a health system we have, then we can do a lot for a lot of people.

That is an important distinction. And that statement, “We are not here to save money;” I think you gave me a headline. So thank you for that.

I meant it. It is a happy coincidence that when people get the care they need in the long run, it does save money. We can afford to do it. That’s the counterpart.

What would you say are some of the key forces currently shaping the future of hospice?

In this current role. I’ve done quite a bit of thinking about what’s coming down the road. There are some things coming down the road that are not limited to the American health care system that I think are going to have a big impact.

Just as the pandemic, for example, had a big impact on us that was broader than just our society’s long journey to come to terms with caring for people near the end of life or who have serious illness. We may have more pandemics on the way. I have not thrown away my masks. I think we may expect that we’re going to see more infectious illnesses and we should be ready.

Global warming is for real, and it is already having impacts and disrupting care to people. It will have broader and broader impacts as we move through this. We need to be ready for business to look different because we’re in a different world that’s overheated.

Technology is a great enabler. We learned during the pandemic that telehealth can be done safely and effectively, that professionals and patients and families can really benefit from it, that we need to not go backwards on that. But we need to think about what happens as we start to see artificial intelligence play into the equation. Can that be a good thing? Of course, it can be used in ways that save us time and allow us to focus on doing what we as human beings need to do. Also, it could bake in biases and end up affecting people’s care in a way that’s harmful. It’s happening fast and we need to be thinking about it.

I’m optimistic that the palliative care approach to people with serious illness, the hospice approach to families that are facing an end of life experience, is part of our future and is part of the solution to the problems we’re all facing.

Some of the forces we’re going to come up against are a lot bigger than what we’ve been dealing with so far. We’ll need to be looking for ways to make sure that people can access this care when there’s massive flooding, that people can access this care when we don’t have a big enough workforce, and things like that.

Can you say more about the ways that climate change is currently disrupting care?

It’s interesting to connect the dots. We currently have certain medications that are hard to get, even though they’re [U.S. Food and Drug Administration] approved. Even though maybe they’re generics, they’ve been around for a long time. They’re on backorder. Nobody is making them.

This really came to a head a few years back before the pandemic, when there was a shortage of IV tubing. There was a shortage of a generic diuretic furosemide that we’ve been using for ages for patients with heart disease and other conditions. And the reason that there were national shortages on these meds was because there was a hurricane in Puerto Rico that destroyed a big generic manufacturing center.

At the same time, a mainland based generic producer had to shut down for other reasons for a year, and there was no furosemide to be had. We didn’t have a system that could rapidly manufacture it outside of what was already established.

So I’m not going to say the big hurricane in Puerto Rico was 100% due to climate change. We’ve had big hurricanes before. But we know climate change is going to mean more intense hurricanes, more intense tornadoes, more flooding. And if these hit certain areas of vulnerability, like there’s only one generic manufacturer for a drug that many people need, we’re gonna have to have systems for how to deal with that.

What qualities do you think the next generation of hospice leaders will need to possess in order to succeed in today’s environment?

The first thing I can tell you is that I am really optimistic about the leaders, the younger leaders of today and the leaders of the future. One of the joys of being the chief medical officer at the academy is that I’ve been able to mentor a number of folks that are a little earlier in their career as hospice medical directors or other kinds of leaders in palliative care. I believe they’ve got the right stuff. We are going to be okay.

In fact, that’s one of the reasons that I feel like I can retire now, is that I really trust that the leaders we have now and the leaders I see coming are going to be able to get the job done and move us all forward.

We’re going to need to think really broadly about being very highly collaborative. What I’ve seen over the decades is there’s a lot more collaboration in our field now than there was in the early days.

We have coalition’s like the National Coalition for Hospice and Palliative Care that are really effective places for us to align our policy initiatives. But I think we need to think of even broader sorts of coalitions. How can we be working with other specialty societies? How can we be working with other health care entities? How can we be working with entities that are not specifically focused on health care?

We’re looking ahead to having to face some wicked, complicated problems, and it’s going to take a lot of smart people working together to get it done. The folks in our field are talented enough to represent us. But we’re going to need to be thinking even more broadly than we have up till now about who we should be partnering with, who we should be collaborating with.