Geriatrician and palliative care specialist Diane Meier, M.D., founder and executive director of the Center to Advance Palliative Care (CAPC), has been a leading voice in the movement to improve access to palliative care in the United States. She is the author of more than 200 articles and several books and has appeared in numerous media outlets, including Hospice News.
Meier recently announced that she would be stepping down as the leader of CAPC and has made no on-the-record statements about her future plans. She recently sat down with Hospice News to discuss her legacy at CAPC and the future of palliative care in the United States and during a pandemic.
What would you say is your proudest achievement during your tenure at CAPC?
Demonstrating that the way to create change in the health care system is by developing practical tools, training and technical systems that make it easy for frontline clinicians to do the right thing in a way that does not require literally thousands of teams across the country to figure it out from scratch. That opportunity cost would be so high that innovations wouldn’t scale.
The combination of appealing to a commonly held set of moral values about the importance of relieving suffering and then making it easy to act on those values is different than what I’ve seen elsewhere. That palliative care has scaled so rapidly despite a fee-for-service payment system that works against it is evidence that positive change can happen in our health care system.
People want to do the right thing. They entered the health professions in order to help people, but they can’t do it if it means they have to go on a retreat for three months to figure it out. The easier we can make it, (both from a knowledge standpoint and a moral and peer support standpoint), the higher the likelihood of uptake and spread. Change is hard, and it’s lonely, and you get pushback. You not only need a template for a business plan nor a needs assessment, for example, you also need to know that the problems and barriers you’re encountering are typical and normal. Everyone else faces them too, and this is how they can be overcome.
What are some lessons you have learned through your work at CAPC?
Earlier in my career I would have said payment and policy changes were the only thing that would lead to change in clinical practice. There has been no policy change for the spread of palliative care. There’s no Medicare benefit. There’s no accreditation or regulatory requirement. Yet palliative care has reached the great majority of U.S. hospitals. That was an interesting lesson.
The second interesting lesson is how quickly a model can scale when the opportunity costs are reduced and when it aligns with what most people working in health care believe and care about. When something is better for patients it motivates people at all levels in health care, from clinicians to Chief Financial Officers. Most people are working in health care, as opposed to Wall Street, because they actually want to help people.
The third take home lesson is that none of this works without effective leaders. No matter how good an idea is — no matter how much support there is for that idea, no matter how much technical assistance there is — if the person trying to do it is an incompetent leader, they will fail. That is why CAPC has pivoted to a very intensive investment in leadership development. Bizarrely, leadership skills are not part of nursing and medical training at all, despite the obvious need for these abilities. Many leadership skills are the kinds of things you learn in business school — understanding your costs, understanding your revenue, understanding how to line up what you do for patients and families and what is feasible with your revenues. That is what leads to sustainable high quality programs.
We spoke in 2019 about the need for a national strategy for palliative care. Do you think we’re any closer to achieving some type of national plan or community based benefit?
We definitely are. Follow where the equity and venture money is going. A lot of it is going into community-based capabilities for high-need, high-cost patients. Is it going in the best possible way? Do we know what the quality is? Is it equitably accessible? No, no, and no. But there’s a reason that community based primary and palliative and urgent care is where the equity money is going. There’s a recognition that the legacy health care system simply does not meet those needs and leaves people with no alternative but to manage their chronic illnesses with 911 calls, ED visits, and hospitalizations. It’s the only way to get help at home unless you are dying and eligible for hospice.
When you call a doctor after five o’clock [p.m.], the tape says that if this is a medical emergency hang up now and call 911. That is still the case. And you want to reduce hospitalizations and [emergency department] visits in that system? The venture and equity folks see that, and they see that under value-based payment there’s money to be made by avoiding those totally preventable crisis 911 calls. They’ve shone a light on the community as really the highest priority setting for delivery of health care. They’ve shone a light on the ways in which we’re over-bedded and using emergency departments and hospitals to manage chronic disease because we don’t know how to manage chronic disease in the community.
[The Centers for Medicare & Medicaid Innovation (CMMI)] took its $10 billion and sent out millions of dollars to multiple different demos, most of which did not achieve the aim of improving quality and reducing costs. Private equity can move fast towards scalable solutions without the many constraints limiting what government can do to experiment.
A number of states have passed legislation in an effort to expand and educate people about palliative care. With that in mind, can you say a little bit about why a national or federal approach is necessary?
A federal approach is necessary because of Medicare, that’s why. The states don’t control Medicare policy; the federal government does. States have a lot of power on professional training and licensing requirements. States could do much better on mandating really rigorous training in geriatrics, aging, chronic conditions, and palliative care that right now is not taught in any meaningful way in nursing and medical school. These are the patients who are both desperately in need and bankrupting the country because of the mismatch of how we pay for and deliver care and the actual needs of the older adult population.
States could do a lot more about that, but there’s 50 different states. You’ve got to have local organizing and local advocacy and local pressure to get stuff done at the state level. That is something that CAPC is trying to support, working with partner organizations like the National Academy of State Health Policy to help people working in palliative care and in hospice to understand how much their advocacy at the state level actually matters and what an influence it can have.
But the federal government controls Medicare, and Medicare sets the tone and the template for all the (mostly) private insurers doing Medicare Advantage. So you need both. We need Medicare policy. We need workforce and training investment at the state level and also at the federal level. And if we’re going to see a shift towards global budgets and capitation, only the federal government can do that. No matter which party is in power, that is a very difficult political thing to do. The people who are doing very well in the current system pay very effective lobbyists to prevent the shift that is needed in our payment system.
While fully acknowledging the distinction between hospice and palliative care, many hospices are trying to move their care further upstream. Do you think that there’s a leadership role for hospices in terms of progress on palliative care?
Hospices, according to [CAPC’s] mapping community palliative care report, account for half of the community-based palliative care in the country. The other half is administered by health systems. Those are two-year-old data. I don’t know what it would be now if we looked at the numbers and included the Aspires, Prosperos, Landmarks, Turn-Keys and the many others providing community based primary and palliative care to high need, high cost Medicare beneficiaries. These businesses are growing really rapidly, many starting out in three or four states a few years ago, and now spread to 20 to 30 states.
But two years ago, hospices and health systems were the main drivers of home-based palliative care. Hospices are already in the community. They already understand the community partners and the needs of patients and families. The challenge for hospices is that hospice staff are accustomed to seeing every patient as dying. It’s very hard to shift your cultural mindset from preparing a patient and a family for a peaceful end-of-life to helping somebody live another five years with congestive heart failure or dementia or frailty. It is a different population, and the skill set and the training of many hospice professionals is highly developed for the dying and not highly developed for the medical complexity and needs of people over a long time with a heavy burden of chronic disease.
People are trained and acculturated in a certain way. They do a great job when they’re in the right place and when their training and acculturation matches the needs of the patients. You can’t just plop somebody into a new patient population and a new payment model and expect them to transform their skills and practices overnight, and I think that’s what happened in many hospice based palliative care programs.
One of the challenges for hospices getting serious about community-based palliative care (without seeing it as a loss- leader or as a way of getting more and earlier referrals to hospice) is the need to see it as a separate, standalone business line, with a quite different patient population, with different needs, and different eligibility. I don’t think it works when you think about it as a way to populate your hospice faster. When you think about it as a different clinical model to meet a very different set of clinical needs, then you’re asking the right questions.
What is the role of the palliative care provider in a pandemic?
I think everyone agrees, although I can’t pull quantitative data to support this, that recognition of the need and the importance of palliative care has skyrocketed during the pandemic. The demand for our services has been really high all across the country. Partly that is because the frontline staff are so overwhelmed that they realize that- despite wanting to- that they cannot meet the human needs of their patients. They’re running from one hypoxic patient to the next, and they feel like they’re letting their patients and families down.
We in palliative care are the team they can turn to. Our colleagues will know that we are still providing humane and compassionate care because they can call their palliative care colleagues. They know that palliative care will have their back, and that of their patients and their families.