This article is an excerpt from the upcoming book Journey’s End: Death, Dying, and the End of Life, written, compiled, and edited by Victoria Brewster, MSW, and Julie Saeger Nierenberg, MEd, with an anticipated release date of Spring 2017.
“Death is seldom good, desired or welcome. The task is to help patients and families bear what may seem unbearable, to work toward relief of as much physical, emotional, and spiritual distress as possible, and to enable patients to live well during this precious and important time with as much meaning and dignity as possible.”
– Dr. John Shuster, M.D., Chief Medical Officer, MindCare Solutions
After I went into medicine, I struggled for a time with my vocational direction, wondering, “What is my purpose?” I thought about being called into ordained ministry and nearly left medicine, back in the mid-90s when the big hospice and palliative care wave was just hitting, to go to seminary. That’s when I started doing hospice and palliative care work.
I am trained as a psychiatrist and had always worked in consultation psychiatry, taking care of cancer patients, AIDS patients, and potential organ transplant recipients. I was very often ‘the last doc standing’ for some of my patients and, by default, became their hospice doctor and loved that. When I was at University of Alabama at Birmingham, I became the medical director of its hospice program, founded The Center for Palliative Care there, and it clearly became the thing that really felt most like a vocation.
An earlier experience that influenced me was the death of my grandfather, a really wonderful man from rural northern Alabama, and one of the most contented people I’ve ever met in my life. At 81 years old he always seemed virtually indestructible to me. One day, after overexerting himself, he had a pretty massive heart attack. He didn’t tell anyone for over a day until he started to cough up pink, frothy sputum from heart failure. He was admitted to a local hospital that had about a dozen beds, a little community facility.
My grandfather was the kind of guy who really didn’t like going into town much, let alone being in the hospital. The “natural” thing to do at the time would have been to send him off to a larger tertiary care facility in one of two sizable cities nearby, and my grandfather would have died in a coronary care unit. Instead, the local doctor who took care of him in this small hospital recognized that he’d suffered a really big “widow maker” heart attack. The doctor knew that my grandfather wouldn’t have wanted interventions and surely wouldn’t have wanted to go to an intensive care unit. He got my grandfather stabilized and in good enough shape to bring him home, breathing comfortably. There at home, he spent three glorious days with the whole family gathered around.
My grandfather was not the kind of guy who kept it a secret how much he loved you. He would greet you at the door each time like it was a joyous reunion. So the fact that he spent that weekend telling each one of us how much he loved us was not out of character at all. At the time, I was a second-year medical student and, when my wife and I left to go back to Atlanta, I had a clear sense that it was the last time I was going to see my grandfather. He died peacefully in his sleep that same night.
For my grandfather, that was about as good as it could have been. And it really took a little while to sink in that the experience was actually quite extraordinary. The easy thing to do, the “default setting,” would have been to pack him up in an ambulance and send him off to an ICU. It took not only wisdom, but also courage, on the doctor’s part to say, “I’m not going to do that. I know enough about this patient as a person and as a member of this family, about what his goals and preferences are, to know that it would not be a kindness, given the extent of his disease, and would not yield the outcome everyone would hope for. So why make this wonderful man spend his last few days in a place that he would hate?”
It was after that experience, along with getting further into my medical training and exposure to patient care, that I came to recognize how truly extraordinary that scenario is. I was motivated to think that such a death as he had should really happen as often as possible.
When I am asked to comment on “the good death” I am not certain there really is a good death. When I first started working in this field, I was young and thought that I could relieve suffering and that is what I was supposed to do. That is a really naive way to approach this work. I have come to respect and develop a healthy amount of humility for what we can do.
We strive to do everything we can, and we eradicate sources of symptoms if we possibly can. If we can’t eradicate them, we minimize and alleviate them as much as possible. We help bolster the patient’s capacity to bear suffering when we can. That’s where hope, meaning and dignity come in. The ultimate human response to suffering is to help people bear the unbearable. It’s the way people deal with things that can’t otherwise be borne; they bear them together.
The current shape of the hospice benefit requires the doctor to explicitly say, “I am referring you to this hospice, and the hospice doctor and I are going to have to agree that if things run their normal course, you have six months or less to live.” That is an incredibly painful and difficult conversation to have, even if one does this a lot. If a doctor doesn’t have that conversation regularly, it can be excruciating. And even when you do it often and are more comfortable with it, every single encounter is unique and particular for the patient and family members. I often tell the people I work with, “Although this may be the tenth person facing the end of life that we admit today, these folks have never had their loved one die before.”
The challenge of making this conceptual transition in care is a major systemic barrier to getting access to hospice. We are still largely taking care of patients in the last few hours to days of their life. The typical hospice admission is with us for days and not weeks, with a great number who are on hospice for less than a week. When you have someone who may be in hospice care for a few days, usually they are actively dying when we admit them, and most of what can be achieved is symptom control and physical comfort. In those cases we really don’t get to provide the marvelous kinds of things that can have an impact on a family and that really deal with the nonphysical elements, the things that really have to do with suffering.
This situation partly contributes to the misperception of what we do as really only being “symptomatologists.” While hospice and palliative care professionals need to have expertise and be experts in symptom control, to reduce what we do to mere treatment of symptoms would be selling short our role in end-of-life care.
Given all the hindrances to accessing hospice care, it is being utilized reasonably effectively. Could it be better? Sure. And I think that, no matter what happens with healthcare reform in the U.S., it will radically change the way we deliver hospice and palliative care. My hope is that hospice will be more integrated into a continuum of care and won’t be such a hard switch into a different care system and a different pay system, as it is now. Currently, it really is a big jolt, both physically and conceptually, and that is perhaps the biggest hurdle to utilization.
I am choosing to view new and upcoming healthcare developments as an opportunity to integrate and do things better so that hospice can be utilized more efficiently and effectively. With all things considered, and as much as I’d love for more people to have access to hospice care than typically do now, we are not doing too badly.
Being a hospice physician differs from being another kind of physician in a couple of significant ways. One is there is no avoiding death and mortality if you do this kind of work. Usually, when physicians and nurses approach me saying they think hospice work is what they would like to do with their life, I typically invite them to come and see. “Spend a week with us. If by Wednesday afternoon, you are still looking forward to Thursday, maybe this work is for you. If by Wednesday afternoon, you’re fantasizing about excuses to not come in Thursday, maybe you shouldn’t choose to do this.”
I’ve actually recruited a couple of physicians who had experience dealing with patients with chronic and ultimately terminal illnesses, who worked in long-term care facilities or as hospitalists, etc. These physicians dealt with complex, acutely ill and dying patients before, but to come and work in this setting, some physicians underestimate how challenging it will be, how much it will affect them, and how emotionally unprepared they are for doing this kind of work.
As a hospice physician you have to have, or to cultivate, a level of comfort within yourself about doing this work. If you have that ability, it can be incredibly fulfilling. My patients are dealing with the “big issues.” I learn so much from the patients I take care of about life and about courage. I meet inspiring people all the time. I meet lots of people who struggle, and it’s an honor to help them too. I meet many who are incredibly inspiring to take care of. For a doctor to be able to get to that place of fulfillment you have to have a level of comfort within yourself.
When I used to introduce myself as a psychiatrist at a cocktail party, people would generally make a nervous excuse to go talk to somebody else. Now, when I introduce myself as a hospice doctor, I either get a warm anecdote about some person they knew and loved that got wonderful care while in hospice or I get a comment about me being some sort of special person or angel on earth. Some say, “I can’t imagine how you could do that work. That would just be so depressing.”
The truth of the matter is, if you can get to a certain level of peace about this, it is the most fulfilling way to practice medicine that I can think of. I get to see all kinds of healing happen, even as people are dying. I see relationships healed and people thinking about their life in narrative terms, constructing meaning, living with hope, and honoring the ones they love and care for. It stuns people to hear that I think my work is very life-affirming and energizing. But one has to get to that level.
It does take some effort and self-care to prevent burnout, because it really is emotionally intense in a way that lots of other aspects of medicine aren’t: It’s less technical and more about the therapeutic relationship. I’ve often said that if I get cancer and need oncologic surgery or a chemotherapy protocol, and my surgeon or oncologist has a great bedside manner, with a presence and personality that are healing, it would be a bonus. I’d be willing to accept someone who is technically skillful but maybe wouldn’t be fun to “go out and have a beer with.” I would want to “hire” the best qualified person at surgery or chemo!
A hospice doctor, on the other hand, must be able to engage in a healing therapeutic relationship. If you cannot do that, then you don’t belong in that position; it’s a deal-breaker. To be able to engage in a healing therapeutic relationship and give enough of yourself to be an effective healer, without having the death of every one of your patients feel like a death in the family, is a difficult balance to strike. And one of the things we need to do in hospice is to look after and care for one another. That’s one of the really big differences in doing this kind of medicine, aside from the technical stuff and being an expert in opioids and opioid pharmacology. In some other medical specialties, even those where I used to practice, you can compartmentalize the technical parts of what you do, in some ways, from yourself as a person and still be really effective at doing what you do. You can’t really do that in hospice work.
*First published on LinkedIn- October 28, 2014