As lawmakers wrestle with necessary improvements to hospice program integrity, they should seek input from the professionals who provide that care, Dr. Holly Yang, incoming board president of the American Academy of Hospice and Palliative Medicine (AAHPM) told Hospice News.
Yang, who is board-certified in internal medicine and hospice and palliative medicine, will soon succeed Dr. Tara Friedman as board leader for the academy, a professional organization for clinicians in the field.
She recently spoke with Hospice News about the industry’s changing environment and the potential to revise aspects of the Medicare benefit, as well as top priorities for her upcoming term at AAHPM.
Do you think there are aspects of the Medicare benefit as it’s currently designed that need to be changed or updated?
It is a really important benefit and has done a lot of incredible things for our community and provided really wonderful care for people at the end of life. That being said, I think that there are things that can be looked at and improved. We need to think about the guidelines, how people get onto hospice and at the evidence base to make sure that we are allowing the patients who need hospice to receive it.
Sometimes people are not getting the care until it’s late, because it’s hard for them to fit all of the guidelines when actually they are very close to the end of life. That’s a shame. Pediatrics has a concurrent care model, and I think that would be very helpful for a lot of our patients. But that would affect the reimbursement rates and what you can cover with the hospice benefit.
Some patients are served very well by our current benefit. And there’s a lot of patients where if we looked and thought carefully about their needs, we could make it better. It’s important to look at the evidence, how people become eligible and what services they are allowed to receive.
There’s been a lot of discussion around program integrity in the hospice benefit. What actions do you think the government should take in regard to program integrity and how should providers themselves respond?
From a government standpoint, we need to make sure that they work with stakeholders who understand hospice care to ensure there is no fraud, make sure that we have good oversight because that impacts the trust and the care that all of us can provide.
And [the government] needs to hear from the people at the bedside when they’re thinking about changes so that we can make sure it’s not increasing the burden to the point where the people cannot provide the care that patients need. It’s a delicate balancing act.
Fraud cannot be tolerated. Poor care for patients cannot be tolerated. I think there’s not a single person I’ve talked to who isn’t outraged about some of the things that have been in the media lately, and that is going to be an ongoing challenge. But we absolutely have to be engaged as individuals and as organizations.
Are there ways for providers to enhance the support they offer to families and caregivers to ensure that their efforts and contributions to the patient’s care are sustainable?
I think that is really difficult. Some people have great family systems and friends that provide lots of support when people are caring for someone in their own home, and others don’t. I think that as a nation we don’t value caregivers in a way that would make it easier on them. We don’t have great paid family leave, for example.
It’s very difficult for many people to provide care for loved ones in the home setting. And, obviously, some people have the financial ability to hire caregivers in the home and others don’t. But that is absolutely a huge problem that I hear about over and over again every day in my practice.
People want to do the care, but it’s just really hard. Our clinicians, especially our social workers and nurses that work in care management, try very hard to connect people to the services that they need because it is overwhelming as a family member to understand the different pieces of care and how they are financed. We need to try to make that as clear as possible for families and patients so that they know what their choices are, given their own situation and finances.
As clinicians and providers in our own disciplines and professions, we can advocate for better support of family caregivers at that state and national levels. And I think that we don’t need to do that alone. There are lots of other people outside of hospice and palliative care that absolutely understand that this is important. I think everyone at some point in their lives is impacted by this. There’s more advocacy work that can be done to create better benefits for home caregivers.
What are some of your top priorities as you begin your term leading the academy?
So, part of my goal with the pandemic — which is still present, but no longer controlling our every day lives— is really to help us reconnect and find some of that joy together again. Our communities have been doing really well virtually, but I’m really excited to become president as we’re meeting together for the first time at our assembly in Montreal after years of being apart. The community component of who we are as a field is really important.
The other thing is just continuing to advance our evidence base, our high-quality care whether that is in palliative care or hospice. Many of us sort of practice in both worlds and see it as sort of one big world. I think making sure that people have access to education is a priority so they’re able to advocate, supporting our researchers and our different communities to do that work.
The landscape is changing quite a bit. We’re actually going to go into strategic planning for our field a year early because the world has changed quite a bit since the last time we were together.
What are some of the other ways that the academy fosters community among its members?
Our diversity, equity and inclusion work is something that we have been focusing on for some time. But I think it’s one thing to say you have a focus, but then to try to actually integrate it into all of the things that we do. That it is just part of our work. It is just part of who we are. That is an emphasis for us this year, and that is absolutely a part of community formation.
We aim to be a place where people can find community. So we have forums and special interest groups that people can join and really plug in, especially if they’re new to the field.
We have councils as well, which is a larger group within palliative medicine and hospice medicine and two that have existed for some time. We really try to foster growth and mentorship. I’ll give you an example. We often have people who are more senior, and we always think about who we can bring into the field and mentor them into these skill sets and roles.
Are you seeing any kind of uptick among clinicians in terms of interest in hospice and palliative care as a specialty or a profession?
We have done some workforce surveys of graduating fellows in the past, but we have not done one since the pandemic started. It’s been a number of years now. But as someone who co-directs a fellowship program in my day job, I see the enthusiasm of people coming into the field.
I think that the pandemic has been quite painful for many people, if not all people in health care or even just the world. But thinking about finding meaning and purpose in your work has brought a lot of really thoughtful people into applying for our fellowship. They want more than just doing a job, but really finding something that they feel can feed them and keep them from burning out and actually bring them joy in their practice and deep fulfillment.
When I think about our applicants over the last few years, there’s always been that flavor. But I think the pandemic has sharpened that in some ways.
You’ve mentioned that idea of fostering that sense of joy among clinicians in their work. It occurs to me that hospice and palliative care are not often associated with the word “joy.” Can you tell me how you find joy in your work?
I find joy because no matter what is happening in a situation, even if it is quite difficult and tragic, there’s always something that we as a team can do to help. That could be exquisite symptom management with cutting edge infusions, or it is just being with someone and being present in silence with their suffering and just letting them know that somebody cares.
There is joy in being able to make a difference for each person in front of you. It is quite a privilege to bear witness to people who are selflessly loving each other, whether that means the person in the bed or the person who was caring for them. It goes in both directions.
One of my mentors said this to a patient a long time ago who had asked how they did this work, and they said, “Because I get to witness selfless love every day, and that’s not something that a lot of people get to do.” And that is true.
And then there’s being together with my team, I’m not by myself as a doctor. I have my nurse colleagues, my nurse practitioner, pharmacy, social work, chaplains, aides — all of these wonderful people thinking about how we do a good job taking care of the patient. Doing something meaningful with colleagues and friends is just powerful, and I think it is sustaining.