Where You Can Go To Deal With Death, Bill Palmer Ep. 23

A Life & Death Conversation with Dr. Bob Uslander

Bill Palmer has dedicated much of his life to helping people get comfortable with death. Hear why he has hosted more than 75 Death Cafes and what he's learned from them and the people who attend. Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Contact Death Cafe website Transcript

Dr. Bob: My guest on today's podcast has been on a really interesting journey over the past several years. Bill Palmer is a successful executive coach and management consultant who lives in Oakland, California. After a personal experience with a loved one who died while being supported by an excellent hospice organization, Bill was inspired to come home to Oakland and start volunteering with other people on hospice. And then he began hosting Death Cafes.

To date, Bill's hosted over 75 Death Cafes for members of his community up in Oakland. If you're not familiar with Death Cafes, you will be after listening to this very informative podcast. Bill has had incredible insights through many, many hours spent with hundreds of people openly discussing death and dying. From the very practical aspects to the emotional and spiritual issues. On this podcast, he shares some of the insights that he's gained with us. I believe this can help you become more comfortable having those meaningful and really important conversations that you should be having with your loved ones and with yourself.

I hope you're as grateful for these insights and reminders as I was, as I was speaking to them. Bill, thank you so much for being willing to spend some time with us and share a bit of your experience and knowledge with the listeners.

Bill Palmer: Sure you're welcome.

Dr. Bob: You have an interesting life, I'm assuming. For some reason, you have chosen to dedicate yourself to helping people get more comfortable talking about death. How did that come about? What was the ... My understanding is that you're a business coach and that you're coaching people through different aspects of business and leadership. How do you become a Death Cafe leader from that place? What was your journey?

Bill Palmer: The journey really started actually, quite a few years ago when my mother was admitted as a hospice patient in Florida. She received incredibly good care at the Hospice of Palm Beach County where she lived at the time. As a business coach, and as an organizational development consultant, I was struck mostly by the wonderful care that she and my family received, but I was also struck by the incredible business alignment and sense of higher purpose in that hospice.

At the time, I thought it was unique. And since then I volunteered in several different hospices. I found that to be more the rule than the exception. Somehow, rather, and I don't recall exactly how I came across a guy named John Underwood who lived in London, and who was the founder of Death Café. It just seemed like a great idea to me at the time. I became a hospice volunteer because I wanted to give something back. It didn't especially require any special skill to be a hospice volunteer. Sometimes just sitting with somebody, visiting, doing a respite visit something like that.

But Death Cafe appealed to me because I could bring to bear some of the skills that I feel I have in terms of leading groups and speaking with individuals in an open and honest and kind of free, willing environment. So, I decided I would take John's advice and example and do a Death Café, which is actually pretty easy to do.

Dr. Bob: You have the model, right? He shared the model with you and ... From my understanding ... Tell us what a Death Cafe for people who don't really understand it.

Bill Palmer: Well, first of all, there's a website called www.deathcafe.com, and it gives a full explanation not only of what a Death Cafe is but how to start one if you want to in your own community. A Death Cafe is simply a free and open ... Free meaning there's no fee to attend, a group meeting of people, whoever wants to come, who want to talk about any aspect of death that interests them.

That could be anything from where do I get a will to, deep philosophical and religious concerns to, what are the regulations about scattering ashes to, my companion died 40 years ago and I'm still grieving to, my spouse died last week and I feel nothing. There's an incredible richness of experience and this is going to sound really strange, but they're actually fun. There's a lot of laughter in a Death Cafe. Some of that laughter is just nervousness about speaking about a taboo subject, but some of it is just appreciation of life.

If I could make one generalization about the Death Cafes, people leave feeling strongly that what they're doing in their lives right now, whether they're close to death or whether they feel like they're very far away, takes on an added significance if they can find a way to accept the fact that we're all going to die. One thing that surprised me about the 75 Death Cafes I've led is the number of people who apparently, intelligent, responsible, normal people who actually don't really think they're going to die.

Dr. Bob: They certainly act like that, right?

Bill Palmer: Yeah. Like I said, responsible, taxpaying, voting, civic-minded people who don't have a will, who don't have an advanced care directive, who've never discussed their wishes for their care towards the end of their lives. It is just an indication of the power of the taboo that people who in most every other aspect of their lives behave quite responsibly. But in this one area, even after they see and hear about the chaos that ensues if you die without a will, if you die without an advanced care directive, if you die or become disabled, even after they hear stories about that, it doesn't seem to get them.

Dr. Bob: Do you think that people are denying that they're going to die or that they just think somehow things are going to work out? They just don't want to ... They don't feel like they need to do the preparation because things just have a way of working out?

Bill Palmer: Well, I guess on an intellectual level, of course, they know they're going to die. But I think on some kind of emotional level, like a child, they don't really believe it. But I think it's probably a little bit of both, is just if you've never sat down and filled out an advance care directives, and you're using a good one, I'd ask some pretty tough questions.

For example, if you don't really know what resuscitation is like, you might think sure, resuscitate me. And if you find out what resuscitation is actually really like in many cases, you might decide something very different.

Dr. Bob: Right, in most cases. I think people, they watch TV shows, they watch ER or St. Elsewhere, these shows that depict somebody having a cardiac arrest. They do a couple of things and then a few seconds later they sit up and everyone's relieved, and it doesn't depict the absolute horror that ensues when somebody's doing chest compressions and ribs are breaking, and there's virtually no chance of survival in the vast majority of cases.

So, yeah, are those kinds of things discussed even at that kind of graphic level? Are people open to hearing those kinds of things when they show up for the Death Cafes?

Bill Palmer: Yeah, I think so. Anyone who leads a Death Cafe, including myself, leads it with a very light touch. There's no schedule of activities. There are no small groups. There are no icebreakers or anything like that. It's just open conversation. If somebody brings that up, people listen, and I think people are affected by it.

There is a great deal of information that gets shared. A common statement is, my family won't discuss my death with me. I will or someone else in the group will say, "Well, here are some great resources." The conversation project, for example, can give you some tips and guidelines and do's and don'ts for, how do you have this conversation with people that don't want to talk about it? It's not an easy thing.

So, I think there's that and there's a sense of comfort and community and that people find out well, gosh, I'm not alone in this. Other people feel this way too, or are afraid of the same thing, or have had a similar experience. I think it's comforting to people.

Dr. Bob: Yeah. Oh, it's rich, and like you say, it's a safe space. Interestingly, I haven't been to one for a bit, but when I went to a few Death Cafes here in San Diego, and they did break up into small groups like four people and then there were some sample questions to stimulate conversation.

There was a little bit of discussion as a group. I think as I remember, representatives from the small groups talked about some of the insights that came out. But I felt like there were so many people in the room, there were maybe 50 to 60 people in the room, and I felt like we missed getting the insight from more people in that space. So, I feel like maybe the open format like you're describing could be even more effective if everybody who wants to speak has a chance to.

Bill Palmer: Well, anyone who's interested in starting a Death Cafe can read on the Death Cafe website, very specific and clear instructions for leading one. I think that if someone is fortunate enough to get 50 or 60 people at a Death Cafe, that's nice, but I think it's an unwieldy number. I know that I've always limited the attendance of Death Cafe to 20. Even at 20, it can be a bit unwieldy.

So, I think the smaller group dynamic works. I know I was asked to help with a Death Cafe that was being sponsored in a retirement community here in the East Bay in California. 40, 50 people showed up. Yeah, we split up into small groups, but it just wasn't as satisfying. It is just really difficult to manage. If anybody's considering doing it, I would strongly recommend that you limit the attendance. You can use a website like Eventbrite which is a free ... It's like Evite, or Eventbrite, one, they're pretty much the same. You can invite people to purchase free tickets, or just sign up for registration. Then you can limit it to 15 or 20.

Dr. Bob: How did you go about finding a location? Because if you're there's no fee, I'm assuming you've done 75 of these, I'm assuming that you're trying to avoid spending a lot of your own money on these. Is there money available from any organization to help defray costs of putting these on?

Bill Palmer: Actually, to be specific, The Death Cafe, you can charge a fee if it's to reimburse the cost. For example, if you rent some space or if you provide some refreshments, you can recoup the cost with nominal fees.

I was very fortunate. There's a funeral home here in Oakland called Chapel of the Chimes. They have a long, long history of community involvement and a beautiful setting. They have a lovely acreage and their buildings are fantastic. They have a high commitment to community service. So, I called him up and I said, "Would you sponsor a Death Cafe? I.e. give us free publicity, give us free space?" They said, "Yeah, we'll do that, and we'll also provide coffee and cookies and donuts for you. Because it's right in line with the way that we want to be involved with the community."

Death Cafe Oakland gets free space and a little bit of free publicity. They get 20 people a month walking in there who maybe otherwise wouldn't know about Chapel of the Chimes. They've just been great to us. Churches are likely spots, community centers are likely spots. Synagogues are likely spots, and funeral homes I think. There's an obvious disincentive for certain people, well, I don't want to go to a funeral home ever for any reason, but it's worked for us very well.

Dr. Bob: Right? Well, my sense ... So, a great alignment, it seems like a great partnership as long as everybody's approaching it with the right intention, and it's comfortable. You don't want to partner with somebody who's going to be pushy and pushing their services. It sounds like that's clearly not happening. But the people who are coming to Death Cafes are probably the same people who don't mind walking into a funeral home.

Bill Palmer: That's probable.

Dr. Bob: You've got a bit of a self-selected group. Well, that's helpful. I appreciate that. So, you've done 75 of the Death Cafes. When was your first one? Do remember-

Bill Palmer: March, of 2013. We actually had our 76th last night.

Dr. Bob: Fantastic. So, you've spent 76, and then they're probably what, an hour and a half to two hours each?

Bill Palmer: Two hours, yeah.

Dr. Bob: Okay. You've had a lot of time to hear people sharing. I'm sure that you are well aware of some of the gaps and the challenges and the struggles around living and dying. Can you share some of the top insights that you've gained from the experience, and offer some of those to the listeners?

Bill Palmer: I've thought about this a lot. Something that jumps out at me is that how we die in America is largely a function of race and wealth. Death Cafe in Oakland or the part of Oakland that we're in is a very different thing than a Death Cafe might be in a very different part of Oakland. That jumps out at me constantly.

Another thing that jumps out at me is, we live in a secular world, many of us do. Certainly, here in California, at least in the East Bay, in the Bay Area. I'm not sure that that's a bad thing but another thing that jumps out at me is that the loss of rituals, of customs, and community, most religions supply ... Things are taking their place but if you look at the Jewish religion, or you look at Islam, or you look at Catholicism, really any of the major world's religions, Hindu, there are very specific rituals and customs around death that are a comfort, and that allow people to navigate or at least help them to navigate through what is painful and difficult.

So, I think that a lot of the interest in Death Cafe and in the conversation around death, it's much larger than Death Café, is around some of the loss of those rituals and the lack of replacements for them.

Dr. Bob: I started to write down the statement because I'm sure it was going to be something really valuable. Could you finish the statement, the loss of rituals, customs and community around the time of death has-

Bill Palmer: Left a vacuum where people are alone. They don't have a way to navigate through that first, terrible few days, weeks, months. I just think it makes it harder.

Dr. Bob: It's a vacuum, I can see that. So, people were coming to the Death Cafes in part to help to fill that void, that vacuum, or because they're afraid that that will be there?

Bill Palmer: Yeah, I think on two levels. One is simply, what are rituals that I could participate in that I no longer an observant and fill in the blank. Catholic or Jew or Muslim or whatever. There are rituals that people have created in this country or reinvented in this country about dying at home, and how to care for the body of someone who has just died, against the medicalization and hospitalization, and institutionalization of death.

So, I think it's both those things. Some of it is just information. What am I supposed to do? Where can I go to find some community around it?

Dr. Bob: The practical issues that can really lead to a lot of stress and anxiety if they're not addressed or planned for.

Bill Palmer: Yeah, exactly.

Dr. Bob: Any other big insights that are jumping out for you?

Bill Palmer: Unfinished business. I can't tell you. I haven't done an exact count, but probably in the 75 Death Cafes, we've had, oh gosh, 500, 600 people come through there. What I constantly hear is five years, 10 years, 20 years after someone died, that the unfinished business that I had with that person haunts me. I never forgave them, or they never forgave me. I had a sister, brothers, spouse, father, mother, son, daughter, and I never resolved what it was that drove us apart.

To me, unfinished business in our relationships is the gasoline that gets thrown on the fire of grief. It just makes it all that much worse because you can't fix it once they're gone, they're gone. So, that's something that I hear over and over again.

Dr. Bob: Do you offer resources ... it seems to me like ... I think one of the things that felt a little bit dissatisfying for me about the Death Cafes, was that there were people who are clearly looking for support and needing additional help and resources, and there wasn't ... Because it's not promotional, you're not giving out pamphlets or directing people specifically to resources.

It feels like there would be an opportunity to bring in some experts and to have people bring in their specific questions to get that kind of guidance. What's the thinking on that?

Bill Palmer: Well, I think the thinking is, and it may be flawed is that, above all, John Underwood the founder of Death Cafe did not want to commercialize. I've had any number of invitations from perfectly respectable, fine people who have a book, they have a program they have this, that or the other thing, and they want to come in and in effect, make a sales pitch. Under normal circumstances, I'd say that'd be fine. But I think it leaves us open to having to vet them, having to know what they say.

My solution has been to, I've created a Facebook page for Death Cafe Oakland. I post resources there. If somebody says, "Well, gee, how do I start this conversation with my spouse?" I can mention the conversation project. I can also tell people to look on that Facebook page, which is open to the public. You don't have to have attended Death Cafe Oakland to see it. You can find wills, you can find an Advance Care Directive. You can find lots and lots of research.

So, I agree with you that the one thing I do specify is that, and I say this at the beginning of every Death Café, is this is not grief counseling. So, if you're grieving, what I say is, please talk about if you want to, we will support you, but it's not grief counseling in the sense that I personally cannot offer you continuing support.

Dr. Bob: Yes, it's not a support group. It's a forum, right? With a lot of people coming for different reasons?

Bill Palmer: Right. I can refer them ... They can do a Google search as easily as I can on bereavement groups. There's many of them. But I agree with you, my solution is a bit of a compromise, and hopefully, it's workable, but probably every single person who ever came to Death Cafe Oakland who wanted a specific resource for a specific need sometimes didn't get it.

Dr. Bob: You're staying true to a mission and that's honorable and it makes sense because you could open it up for all kinds of challenges if you don't keep the boundaries clear, and you're providing ... Again, you're doing this all as a volunteer, right? You have a career and you have to divide your time between things that allow you to pursue that and to ... I really applaud you, commend you for your passion and commitment to this. It's really remarkable.

Bill Palmer: The irony is I get more than I give. I appreciate you for saying that, thank you.

Dr. Bob: Just to quickly follow up on that, what have you gotten? How has it changed you to have this experience and to be part of this movement?

Bill Palmer: Well on a very practical level, to avoid any hint of hypocrisy, I have filled out every form known to humanity with regard to my death, and I'm closer in terms of age, I've got a lot more behind me than I do ahead of me. I think that what I've gotten, the most valuable thing I've gotten about that is, if not an acceptance of it, but a clear idea of, if I have my way, how I want it to go to know exactly what I think is right for me in terms of end of life care. If I'm not able to make decisions or to be mentally competent, a great deal of faith in the agreements that I have with my family, specifically my daughter and my son, who I 100% trust will carry out my wishes should I not be able to act on my own.

So, that's a huge gift, that really is. Just the incredible richness and variety of the people who show up, I'm always interested in groups of people. I'm never bored in a group because I'm always watching to see and hear and feel what's going on, and they never disappoint me. It's always fascinating.

Dr. Bob: Yeah, I couldn't agree more, especially when they're talking about issues that are so vital and important to them. Do you still have any fear or concerns about what lies ahead for you?

Bill Palmer: Sure. I think the idea of gradually losing capabilities is what bothers me and bothers most people that I talk to. Not that I'll be dead, but that I won't be able to move, or I won't be able to speak, or I won't be able to hear, or see, and then that gradual loss of capability, of mobility. Of course, I'm afraid of that.

I've also been a hospice volunteer and seen people who seem to live with a quality of life, whose lost a lot. So, I take a little comfort in that. But yeah, that scares me.

Dr. Bob: That is such an interesting awareness, right? That some people when they lose certain capabilities, certain degrees of independence, when they're dealing with challenges, some people are ready to die because they've lost these things and it's intolerable for them and they're ready to check out as soon as possible. Then there are others who just handle it with such grace and acceptance and even joy. I don't know what the secret formula is, I'm looking for it. Because I want to be able to A, have it for myself, and B, be able to prescribe it for my patients.

But it's such a unique individual, I guess, a way of being in the world. I try to figure it out, but I haven't been able to, and I'm still working on that.

Bill Palmer: Let me know when you do.

Dr. Bob: Yeah, I will. You'll be one of the first ones. As far as ... I think most of us share a little bit of the fear of the unknown of what's coming. I guess one of the things that I'm really passionate about now is helping to give people a greater sense of understanding, a greater sense of control over the circumstances that they may find themselves in.

Part of that is by doing all the right preparation, filling out all the right paperwork, having the conversations with those who will be responsible for making those decisions if you can't. But also, I think ... Do you feel like you have a medical team, do you feel like you have a physician who if and when things become really challenging or intolerable for you, will engage at the level that you need to support you through that difficult challenging last journey?

Bill Palmer: Yeah, I do. I am a Kaiser Permanente member. And one of the criteria for my primary care physician that I insisted on was somebody who would not only understand my wishes about that but who would act upon them. The interviews that I did, I found a physician who I'm reasonably certain will honor my wishes. My advanced care directive is scanned into my medical record there... it's a crapshoot a little bit-

Dr. Bob: A little bit, it always is.

Bill Palmer: You fall down on the street and nobody knows who you are, and they take you to whatever hospital, the ER people are bound by law and by custom to do everything that they can to resuscitate you. Is there a chance it could all go sideways? Yeah, but I feel like ... I've taken every precaution I could to try to make it go the way that I want, and my physician she seems like she's just fine with it. So that's important.

Dr. Bob: Well, let's hope whenever it happens, many many years in the future, she'll probably be retired, and you'll have to have a new person who comes on ... I guess that's a good reason to try to find younger doctors so that you connect with.

Well, this has been great. I feel like we've given people a great overview of what the Death Cafes are designed to do, and hopefully given some insight into where some of the challenges and struggles people face are, and how to try to mitigate those.

I appreciate your time. If you have any burning thoughts that you want to share before we sign off, I am all ears. If you feel like you're complete with what we've discussed, that's totally cool too.

Bill Palmer: No burning thoughts, but I want to thank you for the time, and for your thoughtful questions and statements. It was great to connect with you and someday, some way I hope our paths will cross. Thank you again.

Dr. Bob: Thank you, Bill. Bill Palmer, founder and curator of Death Cafe Oakland, and I'm sure our paths will cross hopefully fairly soon.