We have to remind ourselves that healthcare exists on behalf of humanity, on behalf of quality of life for everybody, that is its core genius and joy. For those of us working in it becomes morally distressing to be separate from that mission.
About BJ Miller, MD
Informed by his own experiences as a patient, Dr. BJ Miller powerfully advocates for the roles of our senses, community and presence in designing a better ending. His interests are in working across disciplines to affect broad-based culture change, cultivating a civic model for aging and dying and furthering the message that suffering and dying are fundamental and intrinsic aspects of life.
He invites us to think about and discuss the end of our lives through the lens of a mindful, human-centered model of care, one that embraces dying not as a medical event but rather as a universally shared life experience. Dr. Miller is a longtime hospice & palliative care physician and educator. He’s been on faculty at his alma mater, UCSF, since 2007 where he’s worked in all settings of care: hospital, clinic, residential facility, and home. He now sees patients and families at the UCSF Helen Diller Family Comprehensive Cancer Center.
Dr. Miller’s Story
I’m a palliative care physician from San Francisco. My clinical work is at the University of California San Francisco, where I practice and teach. But most of my work these days is being out in the world on the speaking circuit trying to sort of beat the drum around helping everyone deal with illness and trying to prepare for end-of-life issues. That’s the bulk of my work and then the third piece right now is working on a book call A Beginner’s Guide To The End. It will be out next July.
I was injured in college and that made me a patient for an extended period, for months and I came close to death myself. What really turned me on to issues around health care and caregiving in general was becoming disabled myself. That turned me on to two things, the power of our mortality and the finiteness of our time on this earth. Also, it turned me on to the healthcare system both its splendors and its ills. So that kind of prompted me to pursue this line of work, those two things together.
Americans With Disability Act: Built & Lived Environments
I think especially as a disabled person, the biggest thing I became aware of is how the built environment is not really made for you. This was 1990—‘91 when I was injured. That’s right at the time of the passage of the Americans with Disabilities Act. It was just becoming law that we had to guarantee access for people using wheelchairs etc. That’s not that long ago. If you look around you’ll see a world that really kind of carves out– it’s built for people who are able-bodied, but those of us who have disabilities, it becomes much more challenging. It’s just becoming aware and my eyes being turned on to how we create a world that accidentally or otherwise leaves a lot of people out. That has been a driving force for me.
Complexities of the Human Experience
I think life is hard. I think for any human being life is hard, it’s just we are born with these imaginations that allow us to imagine a world better than the one we’ve got, and so a lot of us always found ourselves either disappointed in life or disappointed in our response to life. I guess one thing to get across is disabled or not I think life is just difficult and I think we’d all be better off if we just cop to that, if we just gave ourselves that credit and gave each other a sort of a benefit of the doubt that no matter how big the smile on our face. No matter how able-bodied or well we look, that we may be having all sorts of struggles internally and that suffering is a universal experience you don’t have to be an amputee to have suffered etc.
Societal Impact on the Human Experience & Healthcare
I think part of the social queue here is for all of us to wake up and see the other inside of ourselves, and see the relationship between us and others. If we could all do that, I think we would be living in a much kinder place. I think we’d be living in a much kinder world, a world without shame. I think one of the hardest things I witness in myself and others, particularly my patients is not only do we have to deal with illness or disability and the pains that go with that, but we have to deal with the shame that goes on top of that. That shame comes from cues that people send us, that of charity or pity or otherzing us.
If you spend a few moments in these shoes, you start realizing that not only is that unfair to receive that kind of vibe, that shame from people, but it also rises a sort of indignant in each of us, on myself. Because it’s not like any of us has just got it all down and we’re all clear, everything’s good and everything’s hunky-dory, none of us if we’re really honest that state doesn’t exist. So, it’s not like the world is easy if you’re able-bodied and horribly hard if you’re disabled, it’s just hard no matter what.
These are variations on themes, I don’t care if you have four limbs or six limbs I don’t care, it’s just difficult. It’s a really important cue and I do think it starts with of us seeing ourselves as others, seeing the parts of ourselves that are alienated from the world etc. How we accidentally divide ourselves from each other, how we accidentally alienate each other. To me it feels like the evolution of humankind, for us to see this unity among ourselves and so that there really no need for even the word other.
The Evolution of Health Care
Health care needs to radically shift, we keep putting band-aids on the system but I think the system is flawed at its core. Basically, the Department of Health and Human Services should back up and rewrite a mission statement. Being apart of the healthcare industry myself, I’m not even sure what this is all for. We’ve become self-serving, we invent gizmos that may or may not help people, but we just find a way to pay for them and develop them. We’re just loaded up with all sorts of gear and gizmos that end up becoming other forces to get in the way of us being humans dealing with life. We have to be reminded that healthcare with all its gizmos and its wizardry, I mean there’s nothing wrong with its wizardry, it’s just misplaced. We have to remind ourselves that healthcare exists on behalf of humanity, on behalf of quality of life for everybody, but that is its core genius and joy. For those of us working in it becomes morally distressing to be separate from that mission. That’s sort of an overarching thing.
We have to revisit the ethos of health care not just the machinery of it, that whole ethos of care. Beyond that I think we have the sort of cultural issue, where as you point there’s this vertical orientation doctor up here, patient down here, or doctor up here nurse, social worker, chaplain, there’s this pecking order, that’s just insane and it doesn’t really work. That’s where we end up with these conjuring craggily old doctors all burned out because too much is expected of them. Those working underneath them were burned out because they’re treated like hell. With all of that I think the source of that moral distress that I see is principally because somehow in the culture of healthcare, we are not invited to own our own otherness, our own disability.
Back to this sort of central shift that I think you and I long for in society. Every doctor I’ve ever met has been sick, every doctor I’ve ever met is going to die, every doctor I’ve ever met has lost someone they love but those experiences aren’t welcome in their work. We need to open that pathway where physicians and clinicians get to bring their own experiences as human beings to the mix. Not the current status as you basically are taught to ignore those things if I want to be a good doctor I’m supposed to stay up all night for nights on end I’m supposed to not have a personal life etc. That does not work, that does not work at all.That turns us into mindless machines and it makes patients feel awful for needing them. I guess I keep pointing back to however the machine of healthcare needs to change, I think it will flow nicely if we recraft the ethos and the mission of the work in the first place.
I guess that’s my last wish Kistein, the work is inherently so gorgeous. I mean you have all these people going through so much trouble to learn so much on behalf of helping each other, so the potential for health care or the root of health care is one of the most gorgeous things. It’s right next to sort of spiritual care, pastoral care or something godly something beautiful, humans helping humans. At its root it has the potential to be the envy of any industry in the world but we are so far from that potential. My final word is, let’s remember this potential and work towards that.