Near Death Experience Led This Physician to Help People Die

Session 301

BJ Miller is a hospice and palliative care specialist at UCSF. A near-death experience as a teenager left him with a unique perspective on disability and death.

BJ Miller is a hospice and palliative care specialist at UCSF. A near-death experience as a teenager left him with a unique perspective on disability and death.

Back in 1990, he became a triple amputee after he got into an accident when he was in college. He was climbing aboard a train in the hourly hours and getting shocked with 11,000 volts from the overhead electrical current. He woke up in a hospital seeing his two legs and one arm having been amputated.

He then went on to finish his degree and work until finding his path to become a physician and went to UCSF. He is now a palliative care physician at UCSF. He has an amazing TED talk and he has been featured on New York Times.

BJ talks about his resolve for how we’d look at dying and death. It’s something every premed student should be thinking about as you go through your medical training.

[03:45] His Interest in Medicine

Navigating healthcare and disability early in life due to his accident, BJ got turned on about the idea of being a doctor. No lifelong dream to become a doctor really, but it was seeing healthcare from a patient’s point of view that got him interested.

BJ talks about how he was bathed with medical issues at a very young age. His mom had polio and post-polio syndrome and was progressively disabled from that. He also draws a picture of this tension between the disabled population and medicine, which he finds ironic. So growing up, he was very much tuned into disability issues but it seemed to be anti-medical on some level.

It wasn’t until those issues were brought home for him personally when he was in those shoes that she got turned on into the medical issues and the medical system issues underlying all this. That being said, he didn’t really think about being a policymaker to have a bigger impact on the system, although he was more interested in this.

As an art history student in college, he did premeds after college in postbac programs. So his way in was all coming from a different angle. His first impulse was to get involved with patient care and work one on one with people and their families. Medicine was a skill set he thought he could learn to be in that position with individuals.

He points out that even if you love patient care, at some point pretty soon, you’re tuned into all the things that make practicing medicine and giving care and receiving care harder than they need to be. So he never saw himself in politics but as time went on, he became interested more in those things.

[07:55] Handling the Course Work and Fear of Failing

BJ was confident with is academics. But the biggest thing that he came across was death and this really changed his relationship to fear and the fear of failure. And it was at that time coming out of his injury that he had a different confidence. He was not so caught up in comparing himself to others nor was he caught up in any fear of failure. Because for him, he has been through an enormous failure in where his body was coming apart. And to come back from that, the idea of medical school wasn’t scary.

Mostly, his experience was from a patient’s point of view. He was filling his imagination of what it would be like to be on the other side of the white coat. He did have a little bit of shadowing back in Chicago, where he spent a day with a medical director. He describes this as an extremely impactful experience, both in terms of the realities of practicing medicine and watching someone how has honed his craft. This was also an eye-opener for him towards hospice.

[11:20] Creating His Narrative as a Triple Amputee for the Medical School Application

This was an internal conversation he had with himself. He was talking himself out of worrying if he failed. When medical school application time came, he applied to about 15 schools and got invited to around 3-4 interviews.

There were a couple of schools that were enlightened on this issue. They quickly saw that not only his disability as something he could get beyond but in fact, it could actually be a really important part of what would make him a potentially good doctor. That was key.

Moreover, the coaching he got was from his own impulse in his own life’s work to make this disability as not something he “overcomes.” Disability should be something that you get beyond and then get back to being a normal person kind of mindset.

Also, the language can undermine all the lessons and benefits you gain from the experiences of being disabled, which is indirectly relevant to patient care.

So he was careful to come to the interviews and come to medical training with a pretty good narrative, not just as a sales pitch, but for himself. He was understanding what he was doing there and what he was bringing to the table. Part of that was being puzzled with death and having dealt with all the modifications one makes to accommodate disability in their life. And to really learn from it to explicitly lean into his disability as a teacher and as a means to learning more, and not to have a life of less.

[15:00] The Hardest Challenge in Medical School

For BJ, the challenge has been less mechanical. He thought he really didn’t need that much accommodation through medical school. Just by the details of his disability, he didn’t really need a lot of practical accommodation.

On the other hand, the biggest challenge for him is working within a system and bumping up against colleagues in that system who have a worldview that ends up accidentally otherwise dis-including a lot of people.

He has always been aware of watching the medical system responds to people whom it cannot fix. That’s the central theme in palliative care. That’s been the theme in his life and he has observed it and felt it. The barriers were more of a moral distress. He’s working on behalf of the system who has really good intentions but by virtue of its training and its structures.

It keeps life harder than it needs to be for its patients and the people working in it. There is no medical training around coping and what it means to live with the illness, the philosophy, the spirituality, etc. All this was absent from his medical training.

It’s stuff they had to figure out for themselves. The most basic part of being a healthcare worker is having dealt with those kinds of issues, adaptation, what does it mean to be a human being, how to handle loss, how to deal with things you can’t change or can’t control. For BJ, that was and still remains the biggest challenge for him in healthcare.

[19:00] How to Change the Thinking

BJ says it’s things like these – the podcast, conversations, the whole entire field of palliative care. He thinks there is a sense of wider conversation going on around patients and families speaking of burned out doctors and nurses. It’s not a secret to most people that the American health care system is an enormous mess in so many ways. BJ sees an increased awareness as well as a sense of other modes of thinking into the mix.

BJ says that the disabled population has a group of anxieties. They have learned some things by adapting to those changes and then return to some old thoughts with new answers.

As to how you can make people become aware of this issue, BJ says he has been left with all sorts of suffering internally. If you look really close enough, the keys for empathy are already in there. Most human beings have suffered even the ones who look like they’re the luckiest ones in the world. And if we’re somehow okay to admit that and deal with that with lessons, the work for empathy is in us already. We’ve got to own our pain a little bit. We all have access to it. If we can do that, then we’ll get better at grieving. We’ll get better at acknowledging loss. We get better at sitting with things we can’t change. It doesn’t have to be dramatic. Everyone suffers. You just need to own it a little bit.

[24:50] What is Palliative Medicine?

BJ defines it as an interdisciplinary pursuit of quality of life. Or some say that their job as a palliative care clinician is to help patients and their families as good as possible.

For the future orthopedic surgeon or dermatologist, they should think about palliative care. In fact, he thinks every clinician needs to know at least about the basic tenets of palliative care. If you really want to feel good in your job and feel connected with your patients, you will be aware of why it’s important for their conditions to be fixed. As an orthopod, if you want to connect with your patients and be as good, you still need to remember why patients need to be fixed in the first place and why it hurts to have it broken and what they would want to do with that fixed ankle.

As clinicians, people are going to come to us looking for help to fill in those gaps. So it’s not just good enough to take a pure technician’s view on the body. If you have no sense of why it’s important to have molecules in the first place, you’ll be missing on a much bigger, much more interesting game of health.

[28:40] Solving Resistance to Palliative Care

BJ admits there is a ton of resistance to palliative care. A lot of health care professionals say they care a lot about their patients. But bring palliative care into the mix to make sure someone is caring about your patient. The truth is that most clinicians have this notion that somehow someone has to care about the patient when they really care about the patient. This is a big piece of the puzzle.

Additionally, some of us are intoxicated with the mode of cure. And that’s their rabid to cure and that’s their impulse. But the bigger narrative is that it requires us to think about the person as an individual and the subjective sense of life.

Not everyone has to do everything though. The third piece is to really understand what is palliative care as it’s hard to define. It still is vague and this is why it’s often being associated with hospice and end of life care since it’s what’s most people are accustomed to knowing.

Fourth, the reimbursement system undervalues palliative care and geriatrics. We don’t make much money in those fields. In this culture, we follow the money to see what’s valued. If we follow the money in healthcare, money doesn’t lead you here.

BJ recommends to physicians to realize that the field needs to be returned to the older way of care. Primary palliative care has the basic tenets that every physician should know. Then there’s specialty palliative care. So before you write a palliative care referral, take some extra training in palliative care so you can do it better yourself.

[36:50] State Laws on the Right to Die

BJ shares his insights into different states having this law on the right to die. A lot of people really did long for this option. They say that death was coming no matter what and death was a meaningful exercise for them. And he thinks that choosing when you leave is a very meaningful choice. So he is glad that the aid in dying is a small but a very important piece of palliative care.

Alongside there are limitations to palliative care too since you can’t ease every kind of suffering and help create meaning oto people. For all these reasons, he sees aid in dying as a useful piece of attending to patient suffering and meaning-making. Nevertheless, this is a small issue but it’s a very important, symbolic piece of legislation and policy.

Finally, it’s one thing to condone this for an individual who knows this situation but it’s very difficult to move to the abstract of legislation and to craft policy around it to protect people and allows access for the right people. Why is the fervor around access to palliative care? Why are we up in arms that we human beings suffer so much more than we need to? BJ thinks this is too convenient from a policy type point of view.

Some people struggle unnecessarily when there is an antidote in the medicine chest. And he thinks this is a disgrace making him less proud of his country. But he also understands that the details in policy and legislation are complicated. He also thinks there are things lacking here in terms of communication and conversation around this issue. As people, we need to soul search if this is something we need to be part and a common denominator we want to rely upon education and access to health. He personally believes there are other ways to fix it moving towards a value-based system.

[44:50] Resources on Palliative Care and Where to Next

BJ recommends the play Wit. There is also a documentary on Netflix that just came out about end of life. Extremis is also ICU-specific documentary on Netflix. Most of the music and art often revolve around love and loss in some ways.

Marinate in what it means to be a human being and what it means to lose, what creativity means. Bathe in those kinds of issues to see them.

Moreover, BJ is currently writing a book, The Beginner’s Guide to the End, which is meant as a practical guidebook for people and their families facing the end of life. So watch out for this on bookstores soon! BJ is also considering creating other resources like an app for people seriously ill as well as training centers or libraries where people could go and get good information. He also wants to create a version of UK’s Maggie’s Centres. Or he could just open his own clinic and provide palliative care.

[49:07] Final Words of Wisdom

It’s basic impulse as a human being to care for others. The root impulse in medicine is so beautiful as BJ describes it and it needs protecting. The health care is not a lost cause, it’s frustrating, but it’s very gorgeous and essential. So you need to have an activist heart these days, and if you do, bring your energies into this work

Links:

BJ Miller’s TEDTalk

New York Times article about BJ Miller

UK’s Maggie’s Centres

Extremis

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