By Jim Parker
Hospice and palliative care physician Bruce (B.J.) Miller has made it his mission to help people “live well in the face of death.”
A hospice and palliative care physician at the University of California Helen Diller Family Comprehensive Cancer Center and former executive director of the Zen Hospice Project, Miller speaks nationally about end-of-life care, including the benefits of hospice and palliative care, and was featured in the Netflix documentary short film, End Game.
His new book, A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death, co-authored with journalist Shoshana Berger, is designed to educate the public about the options and obstacles that patients and families encounter at the end of life.
Miller’s has experienced palliative medicine both as a clinician and as a patient. An accident during his college years resulted in the amputation of one arm below the elbow and both legs below the knees.
“Part of the reason that I wound up becoming a doctor is that I came close to death in my own life, earlier than expected and in a dramatic enough way that I had little choice but to sit up and take notice,” Miller wrote in the book.
Miller spoke with Hospice News about perceptions of death in our society and its influence on patients’ choices, including hospice election, how patients should be cared for at the end of life, as well as the policy, practical and financial considerations that can impact that care.
“Hospice is a business too, and is affected by the same mundane staffing issues as any other: Illness, vacations, car trouble. The difference here is that a long wait for a bad latte will never be comparable to a late nursing visit when you are in desperate need for help,” Miller and Berger wrote in the book. “The hospice system is a part of our stressed health care system and that means it is stressed too. Burnout and turnover are significant problems across the industry; meanwhile, training programs struggle to impart the sort of knowledge and grizzled experience that good patient care requires.”
Regarding your book, A Beginner’s Guide to the End, what factors led you to decide that a resource like this was needed?
Being a clinician working in the hospice and palliative care space, I see patient after patient and family after family languish and suffer due to lack of information. This is certainly true anywhere in health care, but especially in our field because our explicit mission is to ease suffering. And this has proven very tricky. Most people don’t know what palliative care is. Many people know what hospice is, but they have so many misunderstandings of it.
I felt there was a need to get a general book out there to cover the waterfront, the hope being that essentially that we could raise the floor. We are not going to blow off the ceiling, but at least we can raise the floor and level the playing field so most everybody has some access to sound, up-to-date information. That was the impulse.
At several points in the book it’s mentioned that there is a kind of taboo around the topic of death. How do you think that influences people’s choices at the end of life, including electing hospice?
Our language gives us away. We have this old-fashioned notion that life is a fight against death, as though death were a foreign invader instead of a natural thing that is completely entwined with life.
We talk about death as a failure. In medicine we say, “He failed treatment.” That they “lost the battle,” and so forth. So we find all these exotic ways to keep the subject at a distance, and in daily life it has become easier and easier to become distracted from this. And it means that so many people wait way too long to elect hospice. And if they do enter hospice at all, it’s often in the final days where there is not much time to do all that we can to bring life to a close and provide some comfort.
Even beyond the election of hospice I think if we built awareness of our mortality into our daily lives, my guess is that we’d be much kinder to ourselves and to each other and much more appreciative of the life we have while we have it.
How do you see the hospice and palliative landscape changing? How you think the space could be different five years from now?
My hope would be that medical training in general absorbs the principles of hospice and palliative medicine and drives this kind of care earlier into the picture. Just about any clinician of any stripe should have some kind of basic facility with these concepts — eventually 100% of their patients are going to die.
My hope is that our workforce grows to meet the rising demand, and that payment gets worked out so people are incentivized to pursue careers in this important field. From a policy standpoint, hopefully there will be some legislation passed promoting training for hospice and palliative care.
I do think we in the field also really have to take quality seriously. We used to be able to just absorb the idea — it was just a fact that hospice in particular provided superior quality care as a medical model — and that’s still largely true. But we have to be careful, it’s not just about getting more people into the field; we have to keep our eyes on quality.
Do you think that current payment models for hospice, in particular the Medicare Hospice Benefit, are copacetic with the mission of providing multidisciplinary person-centered care in accordance with patients’ goals and wishes for end of life?
I think in general the hospice benefit does a very good job. I think its sticking points are the requirement that patients have six months or less to live and the idea of all the things that you can’t do while you are on hospice.
Those things made sense in 1982, but they don’t make much sense anymore. For example there are a ton of treatments that might be considered life extending that are actually palliative in nature. I see a lot of patients who are fully aware of all these trade offs and forestall their hospice election because they want access to certain treatments that could maybe help them live longer but also could make them feel better.
So those two sticking points are ripe to be revisited. Otherwise I think the hospice benefit is very sound, but I wonder how much longer the hospice benefit will look like the hospice benefit of today.
How do you feel about a possible Medicare Advantage carve-in for hospice?
I am not a policy expert, and there may be some counter arguments. but I wonder what the unintended consequences of that would be.
Right now Medicare sets the guidelines, and therefore there is a centralized power and policy hub. In sending the hospice benefit to private companies, will Medicare Advantage plans be allowed to dictate their own hospice benefit? If so, I have to imagine quality would go down due to cost-cutting measures which ultimately would also be quality-cutting measures.
You have spoken about how the health care system has diseases rather than people at its center. Do you think that is starting to change and how can the health care community accelerate that change?
I believe it’s starting to change in that the phrase “patient-centered care” is pretty well known and recognized, and I don’t hear anyone arguing against patient-centered care. So I think there’s an opening dialogue around it.
But I also watch some of my medical colleagues roll their eyes at it, and for good reason: Our population, health, and disease and treatments are so complex that it’s practically impossible for patients to make an informed decision, because we haven’t done a very good job of educating them. So it’s unrealistic to say that we can do whatever the patient wants.
What it is realistic is a shared decision-making model in which your clinician is your advocate and together you are working on a plan that’s realistic for the options in front of you, and together you make decisions. I think that’s the golden chalice we are trying to find.
A good example is that if you were to follow patient satisfaction surveys — if those were the gold standard of a patient-centered system — data show that patients prefer doctors who prescribe more medications because that feels like their doctor cares, but more medications is not always the best clinical choice.
That’s a case in point where it’s much more complicated than the satisfaction of the patient or the family, so I think the refinement here is to elevate the patient’s voice in the decision-making process and do the listening on our side as clinicians and encourage patients to speak up for what’s important to them, and together move forward. That is how things should work.
One of the most pervasive barriers to bringing patients into palliative care and hospice is awareness. Most people simply don’t know what these things are. What can hospice and palliative care providers do to move the needle on that issue?
No one seems to understand the difference between hospice and palliative care, and I wonder what policy could come along to help smooth out these false divides. I keep waiting for someone to organize a kind of mass public service announcement, explaining to the public what the solutions are and explaining the field.
As a clinician I am explaining the distinctions to people all the time, and I struggle to do it in a succinct manner; so I think that you need some real communications expertise. It’s a very tricky and complicated communications challenge to distinguish between these concepts in a way that is understandable and relatable, especially when for a lot of people it’s inborn to want to look away.
I would love to see some sort of mass public communication effort. That would go very far even among the health care community. Many of my doctor and nurse colleagues themselves couldn’t tell you the difference between hospice and palliative care. That is very common, so we have a massive communications problem that will take a multimillion dollar effort to get past.
You have spoken about the need to bring intention and creativity into dying. Where does hospice fit into that?
Dying is way bigger than a medical event. Hospice begins with a conversation about what is important to the patient and what is not important to them, and just the nature of that conversation helps people to live with intention.
You help and encourage them to think through what is important, what can they live with, what can they live with, coming to terms with the finitude of their time, and then you can work from there and to some level design your days. Hospice facilitates those conversations all the time.
I think the creative spark is a way of life, a way of thinking in which daily life is a creative act, including at the end of life. We are all improvising all the time, bobbing and weaving, checking our plans versus the reality on the ground. Creativity often flows from reaction to limitations, and this is our limitation: We don’t have endless time.
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