Death is personal for this physician [PODCAST]

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“In Wooster, Ohio, where I practiced, a small not-for-profit hospice agency relied on local physicians, clergy, and many other volunteers to supplement the skills and dedication of their employed staff. It was through this work with Hospice of Wayne County, in making home visits when needed, that I learned the immeasurable value of presence. By continuing to care for my cancer patients until they died, I acquired insight into the equally essential virtue of nonabandonment. When I first attended a hospice and palliative medicine conference in the early 1990s, I realized that I had found my home—a community of professionals of various disciplines who had found what I had discovered: that it is the people, not the diseases, that matter. It would be years before I would totally focus my medical practice on the care of the dying, but in the meantime, the lessons I learned from those at the end of their lives made me a better oncologist and maybe even a better person. As I mentioned above, the most important of those lessons is the realization that I also am mortal, and I too will die.”

Jeff Spiess is an oncologist and palliative care physician. He is the author of Dying with Ease: A Compassionate Guide for Making Wiser End-of-Life Decisions.

He shares his story and discusses his KevinMD article, “Death is personal for this physician.”

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today on the show, we have Jeff Spiess. He’s an oncologist and palliative care physician, and he’s the author of the book Dying with Ease: A Compassionate Guide for Making Wiser End-of-Life Decisions. He contributed an excerpt from that book on KevinMD, and that’s titled “Death is personal for this physician.” Jeff, welcome to the show.

Jeff Spiess: Thank you, Kevin. It’s a delight to be here. I’ve been looking forward to this.

Kevin Pho: We’ll get into your book and article in a little bit, but first off, can you share your story and your journey to where you are today?

Jeff Spiess: Sure. I started off in hematology oncology back when they were always combined, in the mid-’80s, and found very quickly that what kept me going in practice was the cancer patients and learning their stories, getting to know them, their families, and what was going on in their lives. For me, taking care of these patients with cancer also involved continuing to take care of them until they died. I know that’s not typical for a lot of oncologists, but it was for me.

I was practicing in a small Midwestern city. There was a local hospice that was all volunteers, and so I became a volunteer hospice medical director. I gradually increased my interest there and had an opportunity in about 2001 to make a career change. I was able to jump back into the academic world, where I joined the faculty at the University of Iowa College of Medicine. I taught and saw cancer patients to earn my salary, and I headed up the palliative care program, because that’s what I wanted to do. Then, since 2005, I was a full-time hospice medical director in Cleveland at a large urban and multi-county hospice, and I retired from there very recently.

Kevin Pho: Let’s talk about your book and the article that you contributed. The title of the excerpt is “Death is personal for this physician,” and it comes from your book, Dying with Ease: A Compassionate Guide for Making Wiser End-of-Life Decisions. Now, for those who didn’t read that excerpt, can you just walk my audience through it and share the story of why you decided to share it?

Jeff Spiess: Sure. The excerpt starts with just the facts: About three million Americans die every year, and the big statistic that often doesn’t get talked about is that the most common cause of death, of course, is being alive. I also then compared a way to think about dying with the idea of thinking about being born. None of us remembers that, but we all know what happened. I use a little bit of a thought experiment to think about your navel and why it’s there, to look at it, and just remember why it’s there, and use it as a reminder that, as you were born, you will also die.

Then I run through a little bit of the career thing that I talked about, and the fact that what really informed my writing this excerpt, and also the book, was the things that I learned from the patients I was taking care of. You know, Kevin, if we are aware of what’s going on, we all learn from our patients. Sometimes that’s the disease stuff, or sometimes that’s treatment stuff, but for me, it was also meaning stuff. The big thing that I learned was that it’s OK to recognize that I’m mortal, and it’s actually more than OK; it’s really necessary.

I’m convinced that as docs, we would do a better job in counseling our patients and helping them with their decision-making, doing those advance care planning and advance directive discussions, if we were more comfortable with our own mortality. Just like it’s frightening for the patient, and just like it’s frightening for the family members sitting in the room, it’s also a little frightening and a little threatening for us. I think if we did our personal death work a little better, we might actually be more effective in caring for our patients.

Kevin Pho: So what are some suggestions of ways that we in medicine can come to terms with our mortality? Do you have any techniques or exercises that you recommend?

Jeff Spiess: Yeah, I do. Of course, I’ll recommend everybody buy my book. But what did it for me was an exercise that I actually included in a chapter, and it’s not unique to me. I learned it from being a participant in a group exercise. It is a thought experiment that takes a person from being a normal, healthy person, and when I did this in groups, it started with, “I’m in the shower, and I feel a little lump in my neck.” In the book, I had to change the story to make it work in written form, and it starts with getting your picture taken and your wife noticing that your eyes look a little yellow, and then going from that healthy person through sequential loss.

One thing that we as living, healthy people share with the dying is that we know about losing things, and that losing might be losing your phone for 10 minutes, or it might be losing your mother. But one thing that the dying do is they lose everything. To go through that exercise is, I think, really quite informative, because it gets to the fear. It gets to where the real issue is, which isn’t so much the “Yes, I know I’m going to die, and I need to get my advance directives done, and I need to have my estate planning done,” and this kind of stuff. It gets from here to here, and that’s where the fear is. That’s where the suffering happens.

Now, if people don’t want to go through a big formal article or a big formal exercise, one thing that’s really quite informative for anybody is to make out those advance directives and then to have the honest conversation with the person you choose as your surrogate decision-maker, not just to say what you want, but to say why you want it. That gets you, then, a bit to who you are as an individual, and to being OK a little bit more with dying.

Now, I am looking forward to this myself. I’m not suggesting we all go jump off bridges or anything like that, but to think, “OK, I’m going to die. I can’t do anything about that fact. I can do something about what happens leading up to it, but what I need to do is to make sure that whatever happens, it’s OK, that somehow I’ll be OK with it.”

Kevin Pho: Now, I’m in internal medicine, and I do primary care, and like many primary care doctors, the number of check boxes, the number of requirements that we’re forced to do within shrinking time requirements in each patient visit, is just getting worse. What are some tips that you could share to continue to include end-of-life decision-making and advance directives within a constrained primary care visit?

Jeff Spiess: That is a brilliant question, Kevin, and that’s one of the reasons I didn’t stay in primary care, because, well, I don’t think I could have done it. When I talk to my internist, I just can’t imagine what he’s going through. I think it’s tough.

One of the things is that you don’t have to do the big, long conversation as a big, long conversation. It can be little snippets, and sometimes it is best that you say, “OK, we’re going to make an appointment, and this is what we’re going to do: We’re going to talk.” Sometimes that works. I guess the one piece of advice I have for all docs is to listen more and talk less, and I know people can ramble; I’m a good rambler. But bring it up: “Have you thought about, do you have an advance directive? Have you thought about it? Tell me about that.” And maybe then bring it up again another time or two down the road.

One thing that is a helpful technique actually came from an oncology study that showed that when you’re having conversations with people about what decisions to make to include a little negative information. In the study, it was lung cancer. It was for people, say, going into a second-line therapy for non-small cell lung cancer. If you include a little bit of negative information, it changes the dynamic down the road. For the lung cancer, it was going from something as simple as saying, “This new treatment has about a 25 percent chance of working,” versus, “This treatment has about a 25 percent chance of working, but most of the time, it’s not helpful.” That doesn’t change the decision that’s made, at least it doesn’t often change the decision that’s made at that time, but it changes the decision the next time, because once people have heard, they get past that shock business.

Another piece of advice I would give to docs is to use the words. The number of people that I had had referred to my oncology practice who had never heard the word cancer applied to them: They heard tumor, malignancies, swelling, lumps, lesions, things like that. They hadn’t heard the cancer word. And it still happens in the hospice world, the number of people referred to hospice who don’t realize that this is about living the last bit of time before you die. Use the words death and dying. A friend who’s a chaplain at the Cleveland Clinic, in teaching medical students to use the “die” word, at least in their own conversations, says, “Expiring is for magazines and milk, and passing is for kidney stones and exams. People die.”

Kevin Pho: We’re talking to Jeff Spiess. He’s an oncologist and palliative care physician, and he’s the author of the book Dying with Ease: A Compassionate Guide for Making Wiser End-of-Life Decisions. Jeff, from the research and writing of your book and the response that you’ve gotten from the book, what would you say are still the biggest challenges that face palliative care going forward?

Jeff Spiess: Wow. Well, the biggest immediate challenge facing palliative care going forward is workforce, because one of the issues is just what you said: Primary care docs are increasingly judged by throughput and getting all the boxes checked, and even hospitalists now have the same kinds of approaches. Having the palliative care ability to help with the conversations, I think, is a gigantic thing, but there’s just not enough people to do it. The idea of training primary palliative care, I think, is good, but, as you mentioned, that adds one more thing to your skill set, but also to your responsibilities. So the initial thing is workforce. Think about it as a career, everybody out there. It’s good.

Kevin Pho: And if primary care clinicians want to find out more about how they can improve their palliative care skills, other than your book, are there any resources online that you recommend?

Jeff Spiess: Oh boy, I should have looked to get things. But CAPC, the Center to Advance Palliative Care, is a great resource. If you’re more interested in the end-of-life piece of that, the National Hospice Palliative Care Organization or the American Academy of Hospice and Palliative Medicine have lots of good resources out there.

Kevin Pho: And my final question: What’s your take-home message that you want to leave with the KevinMD audience?

Jeff Spiess: I think the take-home message that I would like to leave is: Recognize that you’re mortal, be OK with that, and let it then inform your practice.

Kevin Pho: Yes. And, Jeff, how can people find your book?

Jeff Spiess: I’m on Amazon. If they want to get directly with me, the website is DrJeffSpiess.com.

Kevin Pho: Jeff, thank you so much for sharing your time and insight, and thanks again for being on the show.

Jeff Spiess: Thanks a lot, Kevin. It’s been a delight.

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