Dr Ira Byock: On The Four Things That Matter Most

Good morning, it's nice to see you.

Well, it's a delight to be here. I imagine that there are very, very few people in Australia who know who I am, which is totally fine. I'm a 74 year old American physician who started my medical training and career quite certain that I was going to be a small town, rural family doctor. And I trained, I went to a very kind of intensive postgraduate residency training program to learn family medicine, kind of cradle to grave family medicine. Did a lot of pediatrics, obstetrics, gynecology, neonatal care, but also elder care and everything in between. And life had other plans for me. And I ended up getting drawn on the one hand into emergency medicine, which I practiced for about 14 years or so, and on the other hand into caring for people who were seriously ill and likely to die of their medical conditions, which it seems utterly dichotomous, but frankly in my experience was not. I saw emergency medicine and caring for people through sort of hospice care as kind of an extension of the same thing. Just trying to give people the best care I possibly could during this situation in their lives, this age or stage of their lives anyway. So that's who I am. And because of my advanced seniority or something, I have been able to contribute to the, really the development of this still young field of hospice and palliative care in the United States really since the late 1970s and early 1980s. So name recognition is not high for me, which is fine. But in the small community of American hospice and palliative care, I'm known.

It was an evolution. I have a couple of kind of origin stories, but back in my residency in a place called Fresno, California, which is the Central Valley of California, it's a big agricultural region, lot of migrant workers, many Spanish speaking only people. I trained at a large county hospital there, and training was intensive and quite excellent. But as a young physician in training, I recognized that while we really did a lot of things superbly well in our hospital and health system, when somebody was acknowledged to be dying, there was sort of just this lapse and sort of a blind spot. And in the hospital where I did a lot of my training was working with patients who had been admitted to hospitals. I'm not kidding. People who were acknowledged to be dying were literally sort of put down the hall, ostensibly for their privacy, but really it was because those of us physicians particularly who were doing our daily rounds and stuff, it was awkward. We were sort of uncomfortable around people who were dying. We didn't know what we were supposed to do. And so we left it to the nurses. And the whole thing was just sort of. It struck me as like, when did they stop mattering? Like, what's going on here? And as a sort of a lapse in our commitment to excellence, but also as frankly sort of a social injustice culturally. It was an odd thing for me. The story that I often related, because it really ended up being, I think, what changed my career, though it took a long time, is a story of a fellow. I remember his name as Mr. Rodriguez. He was a middle aged man in his probably late 40s with advanced colon cancer. It had filled up his liver. He was. Had jaundiced from liver failure and he was a migrant worker and impoverished and he was in the hospital and he was dying. And he knew he was dying because I had the conversation with him myself. And one morning I came in to see him on rounds and I knelt by his bed to kind of get to his eye level. I said, Mr. Rodriguez, how are you doing today? And he looked me straight in the face, Melissa. And he looked into my eyes and he said, he smiled, he said, I'm well, doctor, how are you? And I have to say, it seems so simple, but it kind of knocked me back. I just sort of sat back on my heels like, I'm well, doctor. And I thought to myself, well, that's odd, you know, it must be the morphine or drugs, you know, it's the drugs, you know, it's the steroids we're giving him because of his bulky liver disease. It's a little. He's euphoric. But I later came to realize that, no, he chose his words carefully. And he wasn't the only person, though it was rare. But I heard things like that. Occasionally a family would come back to see me and say, you know, when you told us mom was dying, it was the worst thing we'd ever heard. I mean, she's the center of our large family. But, you know, this last month has been the best month we've ever had together. In my Western culture. I had no place to put that. Remember I said I was learning cradle to grave medicine. I was steeped in childhood development and human development. Abe Maslow and Eric Erickson in Neonatal Piaget and, and they talked about well being and growth and development in childhood and early adolescence. But I was finding that, as they all said, by the way, that actually human development is a lifelong process. It became clear to me that well being was actually possible even when you acknowledged that you were dying. And with all of this sadness and the physical discomfort and it's, you know, dying is not pretty and it's, it's just a lousy thing to go through. Right. But people can be well within themselves. So that Mr. Rodriguez's experience and a few others fascinated me. It got under my skin. I really became obsessed with how is that possible? What makes that happen? How could I help make it happen more often? And how do you talk about it? What's the language that you use to talk about? Not just suffering or its alleviation, but a sense of well being. Wow.

So I just want to affirm what you just said. I give a lot of public talks or, and interviews and I try to emphasize that illness and dying are fundamentally personal and only partly medical. And while that sounds like, you know, obviously oh, duh. Sure. In mainstream American culture, and certainly in healthcare culture, that's not obvious. People actually kind of assume that when they get a cancer diagnosis or a heart failure diagnosis that their experience is fundamentally medical. But frankly, it's only fundamentally or mostly medical if you're suffering, if your pain isn't being well treated, or you're constipated constantly, or you're itching, or that you haven't gotten good care so that you have attention to what matters most to you during the times of illness. But illness and caregiving and dying and grieving are fundamentally personal, which means that it need not end in failure, that it's possible to live fully through these inherently difficult and unwanted but entirely normal experiences of human life. These stages of human life.

I don't want to get overly philosophical, but I think I'm aware that we're all going to be a dead a long time and a. There's no reason to rush it. You know, we should be getting exercise and eating well and sleeping well and doing all of that. Right. Because we're all going to be dead a long time. But also we should be living as fully as possible, you know, as vigorously as possible, as joyfully as possible during each age and stage of life.

That's the healthy response to the force majeure.

Absolutely. As a culture, Western culture, we need to grow the rest of the way up. You know, we need to acknowledge that this is a part of life and then talk about what it means to live fully and to live well and die well. You know, I've written three books for the general public and my first one was called Dying well and the title is actually a play on words or a double entendre, because when you hear it first, there's a sense that dying well is a phrase about the best way to Die. But it's actually the word well is even more provocatively heard as an adjective defining or describing the person who is dying to be well. Can one die with a sense of well being? Can you die well? And my resounding response to that is yes. So that first book, all my books but are story driven books. Stories of real people dying well opens with my dad's story. And the book kind of explores and illustrates the various ways that people can experience and have expressed to me a sense of well being in these very difficult circumstances and unwanted situations of, of being ill and not likely to survive.

I learned those phrases when I was an intern and family practice resident. They were not quite as crisply packaged, but I heard things that people should say to one another before they die from a couple of nurses and one social worker I remember well, with whom I was working at that county hospital. And it kind of just caught with me. And I started to think about it and ruminate about these things which I tend to do. And I, I wordsmithed them as well as I could. And I began, I was giving lots of little talks. When you're in medical training, you know, you teach as well as learn. And as a young doctor, I gave a lot of lectures and was trying to stand up a little fledgling hospice program. And this notion of saying five things before you die was a routine part of basically every talk I gave to residents or, or fellow physicians in practice. Please forgive me. I forgive you. Thank you, I love you, and goodbye. Goodbye being the fifth. And it resonated. And probably it was the most common. It was definitely the most common response I got back and questions or people stopping me afterwards and saying, well, that was really good and, you know, all of that. And after a number of years, enough people approached me after lectures or during the Q and A section of a public talk and said that, that I finally, and it took a while, realized that, you know, maybe this is what I, I can put into the culture to kind of Help the culture grow the rest of the way up. Right? And I also realized that all these people who were coming up to me, they likely had a story or two. So I started either stopping them and giving my card and saying, I'll bet you have a story. Would you talk later and could you give me a call or let's communicate by email. And I started then by intention, collecting stories. I realized because some, occasionally somebody would say it to me is, you know, Dr. Bayock, you don't have to be forced to say goodbye before those other four things. You don't have to be dying to say, please forgive me. I forgive you. Thank you. I love you. You just have to be mortal, right? And even if you think you're immortal, if you love somebody who's mortal, well, that still puts you at risk on any given day of losing opportunities to say these things before that relationship.

We matter to each other. If you ask somebody who's being wheeled into bypass surgery, heart bypass surgery, or facing cancer chemotherapy for the third or fourth time, what matters most now to you, I promise you the answer will always include the names of people they love. I don't care what color their skin is, what language you're having this conversation is, what their age is, what their diagnosis is. This one is a constant. We matter to one another. And so I think the four things are really not about dying. They're about completing relationships. And I don't even mean completing is different than ending. I mean completing relationships in the manner that a circle is. When a circle is complete, it's unbroken. It can roll on. Right. It's not fractured. So I like to keep my relationships complete and in that regard so that there's nothing critically important left unsaid. If I should die suddenly or, God forbid, one of my daughters or my wife or sister or somebody I love were to die suddenly. You know, I've started now for decades, trying to make sure there's nothing critically important left unsaid. And I think those four things, while I learned them from people who are Facing the end of life. I think they are a tool of well being and relational well being that can be applied at any time in life.

It's remarkable and strange and in a delightful way, my contribution to the Pit, which is a great show, it really is. And I, and I usually avoid medical shows too, but this one's really exceptional. And I was asked to spend an hour with the writers room. So my contribution is literally an hour with the writers room over zoom about, I don't know, a year or more before the show began to air. And because of my background in both emergency medicine and hospice and palliative care, they were interested in talking with me. I was delighted to do so. And what ended up being a very animated conversation, I pitched them a couple of ideas and I responded to some of the ideas that they wanted me to respond to. But I pitched them a couple of stories and the one that they really resonated with them and that they took and ends up in episode four was a four things story that is a real story that it actually, I was a physician in the emergency department and the medical situation was different, but a gentleman came in and had what's called leaking abdominal aortic aneurysm. And I got a call in the ER from the ambulance, described the situation. He had basically classic findings of this. So I was prepared. I actually called the OR before the guy got to the emergency department saying, it looks like we got a guy coming in with a ruptured aortic aneurysm. We better get the OR scrambled. And. And he hits the ed. And I evaluate him and talk with him and say, I think this is what's going on and this is life threatening. And he says, yeah, no, doctor, I actually am aware that I've had this condition and I've talked to my internist about it, and, and because of my other medical problems, I'm not going to go to surgery. I've known that if and when this happens, that this will be the way I, I die. And so we, I sat down, of course, and we're talking about this. And, and so that was the plan. He had thought it out, understood. I knew his internist, so I made him comfortable. We did the usual clinical protocols to buy some time and ease his pain because it's causes severe back pain, had the OR stand down, and then got him admitted to the hospital. During the time before he left the emergency department and went to his hospital bed, his family had come into the emergency department. I remember he had two adult daughters and his wife. And now he's quite comfortable. And I made the time to sit with him and say, you know, hopefully you have several hours, maybe overnight to be together upstairs. I don't know if it'd be a value, but it's been of value for many of my patients to have said at least four things to one another before they're forced to say goodbye. And I went through it. Please forgive me. I forgive you. Thank you, and I love you. They thought that would be great. Thank you very much. They went up to the room and I didn't hear anything else about the case. I was busy in the emergency department before I left for my shift that evening. One of his daughters stopped back by the emergency department and asked to talk with me. And she said, you know, dad died just about a half hour ago, and he was comfortable and he just sort of drifted off. And she said, you know, this afternoon was just remarkable. And we can't thank you enough for suggesting that we, during our visit, say those things to one another. And, you know, that's what I pitched them. And, boy, I didn't even interact with Noah Wiley. We know some people in common, it turns out, but I was working with another physician writer named Joe Stein. But Noah was in the room. He was in physically in that meeting, but he wasn't the one I was speaking with. I know they took the story because it's in the episode, but also, Noah Wiley's been very generous in interviews about the pit and that episode to Mention me and. And the Four Things that Matter Most. The book.

I thought that we'd have more time.

Is your family religious?

Oh, God, no.

I had a teacher, mentor who told me about a Hawaiian ritual called hooponopono, or the Four Things that Matter Most. It's basically just a few key things that we can say when we're saying goodbye to a loved one that can really help at the early stages of loss.

What are they?

They're gonna sound really simple, but I swear I've seen them work.

Okay.

I love you. Thank you. I forgive you. Please forgive me.

That's it? Yep.

I told you it was simple.

Yes, and this connects back a bit to why I'm so invested in Violet and Violet succeeding in its mission. The episode on the Pit, and the Pit in general, is part of speaking into the culture. It is part of cultural maturation, of helping the culture grow the rest of the way up. What that episode and that storyline illustrated was something that happens not very often in emergency departments, though it's a real story. It happened in mine, but it happens every day in hospice and palliative care practice. This is a normal part of what we do. Not only preventing or alleviating suffering, but helping people feel that things are more complete, that there's nothing critically important left unsaid. It's a part of celebrating life and relationship in the midst of. Of the very waning stages of life and relationship. What's exciting to me about participating in something as broad and successful as the Pit is working at scale to foster cultural growth. And frankly, that's what I think Violet has the potential of doing. What you're doing really has an opportunity to be a cultural moment here where we look at one another and say, given that we're all mortal, that no one gets out of this one alive, we should make sure that we're communicating clearly, honestly, lovingly with one another. And Living as fully as we can, making sure that our own values and priorities are reflected in how we're cared for.

I do think that it tracks back to illness and caregiving and dying and grieving being personal, not just medical advance directives. I remember when they came about in the United States. I was right about the late 1980s and early 1990s. There was a famous law here, the Patient Self Determination act, which made them important. But they were developed largely by attorneys, very well meaning. And I was engaged with this process and they were kind of designed on the chassis of contracts. And when you step back and think about it, contracts are based basically in fear. You develop a contract, you sign a contract to protect yourself from either bad actors or bad actions or some risk that you think this relationship will put you at. Right? And I didn't realize this for a long time. A colleague of mine named Dr. Joseph Finn brought this out that most people don't want their medical decisions made out of fear. They want them made out of love. And so it became clear to me and changed a lot of my teaching and behaviors, clinical practice behaviors, when I realized that he's right, we can develop these things not so much as contracts, but more as kind of covenantally. Covenants are correlational acknowledgments and they're based in love. I want decisions that affect me if I have a stroke or have a head injury or in cardiogenic shock and my wife and daughters are left to make decisions on my behalf because I can't speak for myself. I want those decisions made out of love for me. And I have trust. Covenants are based in trust. I have trust that they will act on my behalf. So I decide to redesign advance directives and use them to build trust, whether they are formal documents or not. And I have two competing thoughts, but I want to say I think I'll come back to this. But I think the Care Compass is right along those lines. It builds relationship and trust. Years ago I was asked. I was part of a large non medical project in the United States called the Conversation Project, not terribly different than Violet. And I wrote a opinion piece for the Conversation Project describing why I have an advanced directive. I titled the piece Because I'm a dad, I have an advanced directive. Not because I just teach this stuff or I'm a doctor. I have an advance directive because I know that if I am in the emergency department with a head injury or stroke or whatever, my wife and daughters will hold the weight of making decisions. And that's the way it should be.

Exactly. Who else are they going to ask?

It's the only way I know of to lift a little bit of the burden of making those very poignant Emotionally difficult decisions from my loved ones. So just I wanted to first give them in the formal document, to give them clear authority, but more importantly, to give them a sense of what I think I would want so that they're supported in making these decisions.

So important.

You're so right. Really complex grief is about questions of did we do it right? The would haves, could haves, should haves, what ifs. In having the conversations as a normal part of planning, a normal part of planning for a full and healthy life, you really diminish complex grief. It's a preventative measure as well.

Well, I think the whole thing is brilliant, frankly, because of the scale that you're doing it on. It begins to normalize the process culturally, and that reflectively makes it easier for people to do as well. It doesn't require a serious diagnosis. It becomes a bit of, well, this is just what we do as adults. This is part of how we care for one another. Within families, doing it at scale actually has extra value and benefits that, you know, reverberate through social behaviors. Very Important.

I think it's two and a half decades late.

Absolutely. Absolutely. This is normal adult behavior, right? You have health insurance, you have life insurance. You do this. Honestly, I think we need to normalize advanced care planning. You're not going to believe this, but I think it has to happen during the senior year of high school in the United States, when somebody turns 18, they are an adult. Their parents do not speak for them anymore unless their parents are given legal authority to speak for them. So this has to be normalized, I think, as part of healthy adult behaviors. And yes, they have to be refreshed from time to time. We usually talk about the various Ds, you know, every decade with a diagnosis, with a divorce, particularly if you get a diagnosis of dementia or other decline, you should refresh your advance care plans. But I think certainly when you turn 50, it's time. What you're saying is not provocative. It's, it's utterly conservative. It just really makes sense. I'm not even 75. My gosh. Right. That happens in February. If you want to send me a card.

Right now for us. The. Well, the Medicare well visits, annual wellness visits. That starts at 65 here. Does it?

It's a healthy adult behavior. Yeah, that's what you do and needs to be normalized.

Oh, it's not. It's not too young at all. No, no. And the downside of keeping it really toward people in their seventh decade of life is that in a subtle way, it still reinforces fear. Then that ties it to dying. And I think we really need to reposition it as a healthy adult behavior. This is what we do for one another. You know, on my advanced directive, by the way, there's usually a place for an addendum or, or just if there's anything else you want to add to your advance directive. This is the formal documents. What I've written in is a note to my wife and daughters if you're needing to use this document. It's likely I am very ill and I can only imagine that this is a stressful time for you. Please know that I've given you authority to speak for me because I trust you and whatever you decide will be fine with me. It's most important for me that you support and are loving to yourselves and one another.

Because I'm a dad. And because I could have a car accident or, you know, become seriously ill at any time. It happens.

Mostly that I do see evidence of an embrace of the fullness of life and kind of a challenging. Of the brittle notions that. That we should live as long as possible, even if our quality of life deteriorates, and that more medical treatment is always the best thing to do. I've always known that that's kind of silly, because everybody eventually dies of something. And I'm not reticent to use medical treatments, but it's important to realize we've yet to make even one person immortal. And so the question is not, do you want to live as long as possible? Really, you want to live as long as you can live well. And that doesn't mean that you have to be able to go to work or play tennis. Just, you know, you want to live as long as you can and use medical treatments as long as you can so that you can live fully and be well within yourself and right with the world and right with the people around you. There is evidence that the culture is starting to recognize that and shifting from assumptions about medicine from more is better to really, the right care is what we want. This is personal. And I think, you know, frankly, Violet is evidence of that. The traction that you are getting for these, frankly, simple suggestions is evidence that there is a cultural readiness to do this.

Very important. Why wait?

Tell people that you love them. There is value in stating the obvious. Part of the wisdom within saying, please forgive me, I forgive you, to people is that none of our relationships are perfect. We're human beings. We are imperfect as beings, so our relationships are imperfect. That's okay. We can practice love and forgiveness, the offering of forgiveness and accepting of forgiveness, expressions of forgiveness, gratitude, and love. And you'll find that in so doing, once you've done that and using it as a practice that your relationships become more joyful, honestly, they become honest and joyful. There's nothing left unsaid, so you might as well just enjoy one another's time together and company. And that's. I'm bending all the way back around, but we're all going to be dead a long time, right? Let's live as fully and joyfully as we can.

Truly a pleasure. Thanks for having me.