Dr. Diana Barnard is one of those doctors you hope to have sitting in a room with you when decisions have to be made. Thoughtful, patient- and family-focused, able and willing to take the time it takes to think things through. She practices in Vermont, one of the first states to amend their laws so that non-residents can choose Medical Aid in Dying in that state. As she notes, “People want to be heard and understood. They want to know what their options are, and then they want to have a little say in what option makes sense for them… In almost any situation, it’s not black and white.” I think you’ll find value in her experience and insights about: Families and the End of Life, Autonomy and Choice, The Reality of Care Needs, The Longing for Options, Medical Aid in Dying, and more.

Transcript:

Diane Hullet: [00:00:00] Hi, I’m Diane Hullett. Welcome to the Best Life, Best Death podcast. I’m here today with a really interesting doctor who’s joining us from Middlebury, Vermont. This is Dr. Diana Barnard, and she works at the University of Vermont Health Network. Porter Medical Center, which we were just kind of chuckling.

It’s kind of a long name. So welcome, Diana. 

Dr. Diana Barnard: Thank you so much for the opportunity to chat. 

Diane Hullet: Well, I’m excited. I got your name from an article that I read when I saw that Vermont had changed its law for medical aid in dying. And I thought, okay, here’s a doctor who’s working in this State that has this new law that is different than any other state in the US.

So I wanted to reach out and just sort of hear, you know, how that law came into being and why Vermont was poised to do that. But before we get into that, just start by telling us a little bit about like, what’s your background? How did you get into this field? 

Dr. Diana Barnard: [00:01:00] Well, I always like to start with and the most important thing to know about me is that I was born and raised on a farm in Vermont.

And I say that tongue in cheek, but it’s actually really important because growing up on a farm. I learned really important lessons about so many things like being resilient and Quick thinking on your feet and living within your means. But I also learned things like the reality of the cycle of life and death.

And how we have to have many tools to address unexpected problems. And I’m really proud of being a Vermonter and what I learned about that. And somehow, and I won’t bore you with that story, but I ended up going into medicine. And what I will say is that my My interest in medicine really came more from fascination with how the body works and wanting to understand it myself and recognizing that I wanted other people to [00:02:00] understand it as well from a very early age when I saw medical problems and This was when my family didn’t even have health insurance.

I saw some interactions where information was shared that didn’t make any sense. And so I was motivated to know about my body and what was happening. And I saw people around me also wanting to know what was going on and wanting to make decisions that were. Assistant with their own particular values.

And as we say, treatment preferences, right? Because it’s not one size fits all. We are all different. We all live differently. And when we have illnesses, different treatments are going to make sense for different people. Yeah. 

Diane Hullet: I think that’s so well said because we, we somehow, when we think about it, we think there’s kind of this one size fits all, but people are so unique in terms of how they want to approach the disease process that they have or the end of life.

Dr. Diana Barnard: Yeah. People want to be heard and understood. [00:03:00] They want to know what their options are and then they want to have a little say in which option makes sense for them. And, you know, we do have standards of care and the best treatments for certain illnesses, but in almost any situation, it’s really not black and white.

And so I naturally was drawn to family medicine because knowing the people that I was treating and understanding who they are and how they navigate the world and what’s important to them. was such a big part of how I treated their cold or their fracture or their high blood pressure or a serious illness like cancer.

And so I was totally drawn to family medicine and I practiced that for about 15 years, including catching babies, which was delightful and lovely. And then, honestly, medicine started to change, and it started to change very fast. Now I’m going to start sounding like an old fart, but I’ve been doing this work now for almost [00:04:00] 30 years.

And just one concrete example, when I started practicing as a family medicine doctor in Middlebury, and I’ve spent my whole career practicing in Vermont, right? Where I grew up there was not a CT scanner at the hospital. In fact, there were only a couple in it and they were up in Burlington at the big medical center.

So if you can imagine practicing medicine when there was no CT scan, there was no direct to consumer advertising, and there was no electronic health record. And I liked that kind of medicine. I liked sitting down with people and having a conversation like you and I are having now and learning about them and exploring what’s going on and coming up with a plan and then seeing what would happen.

And then I started to see, oh, lots of technology, lots of medications and drugs that were being advertised and quick fixes. And the [00:05:00] very things that drew me to medicine and drew me to wanting to be a doctor We’re becoming less valuable as the system was running away. And so I was looking for a way to continue to serve and also find my work meaningful.

And I realized at the same time, I had a couple of experiences with people who were facing the end of life. And I thought, wow, we’re not doing this very well. People with serious illness and people who are reaching the end of their life need a different set of skills. And not everybody has those skills, but they’re skills that I have.

And I kind of like working on them and sharing my wisdom with others and working together. I, I think if you talk to patients that I met as a family practice doc, even if I saw them for a UTI would say that. When they left to visit with me, they felt heard and understood and I still come back to those words because they’re so important.

People need to be heard and understood. And [00:06:00] now I’m bringing that work to the other spectrum from childbirth from the end of life. And so I decided I wanted to start caring more for people and learning about how to care for people that are living with serious illness and that’s how I. made my way to the world of palliative medicine and hospice care.

And so I achieved mid year board certification in a second specialty, and I worked to find a way to offer that kind of care to people. And along the way, literally, if you want to want me to tell you how I got into the medical aid and dying piece. Sure. So I’m learning about end of life care. I’m realizing all the same principles that we talked about having people be heard and understood needing lots of tools, everybody needing different things.

And I started hearing people say things to me like, why do we treat our animals at the end of life one way when I’m [00:07:00] having to do this? Now that might sound kind of basic, but it’s really a quite provocative question. When we have people that, and pets that are so important in our lives, and we know how to give them a peaceful death, people were saying to me, why, why can’t we have the same thing?

So it made me realize we need more tools in the toolbox. for helping people manage the end of their life. And as it happens I was on the ethics committee at my local hospital and there was an article written in the Burlington Free Press about a group of retired docs and businessmen who had the idea to try to work toward having a medical aid and dying bill in Vermont.

So this was shortly after Oregon had passed their law, and some people said, why can’t we have that in Vermont? And the Free Press article led to my local newspaper wanting to do an article. They knew it was a controversial topic. So [00:08:00] they reached out to the hospital and the hospital said, Well, I don’t know what to say, but contact Dr.

Barnard because she’s on the ethics committee. And so, I got this call and this reporter said, there’s some people working on a, on a bill to give people the right to hasten their death under certain circumstances, what do you think and I said, well. I’m all about patient and family centered care, and people should be able to have more of what they want, especially at such a tender time like the end of life.

So that sounds like a good idea to me. And as soon as that article was published those folks in Burlington called me right up. And as it happened way back in 2011 that led me to the ground floor of the movement that eventually led to passing our medical aid and dying law. And it was 12 years of hard work of listening and traveling around the state and learning even more about it.

But that’s how I got started. Wow. 

Diane Hullet: Wow. Diana. And, and so is the, the [00:09:00] new piece of the Vermont law that says that you do not have to be a resident of the state of Vermont to come and take advantage of medical aid in dying. Is that an addendum to the law? 

Dr. Diana Barnard: Yeah. So most of all of the laws when they were first passed included language saying that you needed to be a resident of the state.

I will tell you that Vermont was the first state to pass a law through the legislative process. And so that meant going to our legislature and educating them and holding testimony. And By that time, the Oregon law had already been in place for a number of years and they had very good data to show that their law was working well, to show that it wasn’t being abused and that people weren’t being coerced.

And so we Decided to take the political strategy. I’ve learned a lot about politics and legislation, which is don’t get me started. It’s like making sausage, but it’s [00:10:00] important. We just decided that we would rely heavily on Oregon’s experience to show the Vermont legislature that it could be done and done well.

And so we basically mirrored everything in our law after the Oregon law. And that’s what we ended up with. And then over time, as it happens, I practice in Vermont, but on the western side of the state, and I take care of patients from New York. And so over time, I realized, here I am as a palliative care doctor, helping people at one of the most tender times in life, and I cannot offer all of the tools in my toolbox to all of my patients.

The ones living across the lake didn’t have access, and it didn’t seem right. And so that led to me getting more involved in advocacy and being willing to join a lawsuit basically to say to the state, Hey, we don’t think this is actually constitutional. And we have an opportunity to fix [00:11:00] an unintended mistake and true form to Vermont.

And one of the things that I love so much about it is that very quickly when the issue was raised, our legislators said, we’re going to get right to work on fixing. what we unintentionally did. And so they updated the law to remove the residency requirements. 

Diane Hullet: So interesting. Do you think other states will follow suit?

Dr. Diana Barnard: I think if you look at what’s happening across our country right now, people would say There’s a problem with trying to limit the medical care that you get by the state that you live in, regardless of what kind of medical care you are talking about. And of course, it would be appropriate for me to say the, the access to full spectrum gynecologic care and body autonomy regarding an unexpected pregnancy is one example.

And that we’re really seeing the limits and what’s really not okay. We’re talking about personal decisions. About a person’s [00:12:00] body and their own medical care that doesn’t have any impact on anybody else. And so these issues are forcing us to look at what we have on the laws and our books and really say, well, that’s not right.

And so I believe that other states will look at this issue. I also expect there will be more. Laws in more states, I hope to open up access closer to home because even though I can now take care of my patients from New York, there are and other states, there are still a lot of challenges to the concept of having to travel.

To another state to seek medical care that feels right for you. And that makes it a real challenge. So it’s a victory and to be celebrated the open access, but there are still a number of very real practical issues that we need to make better. 

Diane Hullet: Say a little bit more about that from your 

Dr. Diana Barnard: point [00:13:00] of view.

Well, you know, for example, I’m a palliative care doctor. I treat people with serious illness. A lot of my patients are living with cancer. And some of my patients, in addition to seeing their local oncologist, choose to seek expertise out of state. Like Dana Farber or Brigham and Women’s. They want to get that extra level of expertise.

And they often travel there for part of their care. But then, when their cancer is more advanced, they that travel becomes hard and people often shift their care closer to home. So when you’re living with a serious illness, your energy is limited, your ability to be out of your home for a number of hours, let alone a day or two is going down.

And it’s a real challenge to have to travel at a time when your energy is so so limited, not to mention that in order to For the law in Vermont to be in effect and for both myself as a potential prescriber and for the patient who is taking the medicine to [00:14:00] be protected by Vermont law, all of the steps have to happen in Vermont, including ingestion.

So now we’re saying to someone who’s nearing the end of their life that they won’t be able to be at home. for this, these final act, they would need to be in Vermont. And there’s all kinds of reasons why that might work for some people, but it’s a challenge for many others. And I think we can do better.

How, how would we do better? Well, we would do better by doing more listening as a medical profession and understanding the complex and individual needs of people who are living and. eventually who are dying with a serious illness. Like I said before, more tools, more listening. Patients tell me what they want.

Medical aid in dying is not for everybody, and I don’t expect it to ever be for everybody, and that’s okay. But some people have a very clear idea about what they don’t want the end of their life experience to [00:15:00] look like, and we need to pay more attention to that. So that we can help people live on their own terms and also die on their own terms.

Diane Hullet: Oh, I’m so glad I asked you to say more about that. I think that’s so well put. There’s something about I think sometimes we stand in kind of a values based opinion without standing in the shoes of the person who’s got the terminal illness that’s excruciatingly painful or or whatever other struggles they have struggled with.

We. Can’t really appreciate until we’ve stood in their shoes and I think there’s, there’s really something about that understanding that people do not come to this lightly. This is not someone doesn’t say, oh, I think I’ll choose medical aid and dying today, you know, it is, it is a process and it is a huge emotional process to come to this kind of place, but why we don’t have this.

Option for everyone, like you said, so it’s not just limited to what state you live in and thereby [00:16:00] limiting where you can die. It’s, it is really something, these complicated issues of autonomy and medical practice and the bigger values picture that is maybe trying to be imposed by some, then people are forced to live underneath that.

Dr. Diana Barnard: Yes, I mean, we actually have a medical system. I like to say that we have a medical system that’s actually doctor or provider or system focused. That’s exactly right. It’s system. We do not have a medical system that is patient and family centered. But we should have. And so there’s so many, I mean, we could take up this whole half hour talking about like, why is medical aid in dying even needed?

Well, one problem is that our, our medical system is really not serving the needs of people who are frail. And who are elderly or living with the later stages of illness, our medical system has chosen to prioritize and [00:17:00] it’s been with great results. Don’t get me wrong, but we’ve put a lot of money and resources into things like preventing accidental deaths.

Helping people live with advanced cardiac problems by giving them new valves and doing bypass. Helping people with cancer live much longer than they used to by extending their life with these wonderful, new, sexy, very, very, very expensive treatments. And when people then reach the limits of those treatments helping, and they’re no longer living well, but they’re starting to slow down and near the final chapter of their life and they’re dying, those same people who advocated for a good life, want to advocate for a good final phase of life, but our system is really letting people down.

We don’t put resources into supporting people living with serious illness when you no longer need chemo, but what you need is someone to show up at your house for [00:18:00] two or four hours a day to cook you a meal and clean your house and provide companionship and support. Our medical system is missing so many opportunities to support people and they’re now Now we’re frustrated, our hospitals are over full, our rehab facilities are full, our skilled nursing facilities are full, because we’ve helped people live longer.

That’s great. But it increases the very likelihood that in that final chapter, you’re going to have more complex health needs and you’re going to need more support, and we have not built that system of support. And so people fear what happens when I’m in a wheelchair. Or I can’t wipe myself, or I need help getting to the bathroom.

Who pays for that? Where can I go? What’s it gonna be like? So, our medical system has a lot of work to do to help answer those questions. And right now, my [00:19:00] job is one person at a time, listening to people who are worried about that part of their life. And for those people, Who choose not to extend their life under those circumstances, helping them get just a little bit of control back when the disease has robbed so much of it for 

Diane Hullet: so long.

So well said Diana. Wow, I, I, I wonder how this is going to continue to play out as the baby boomers this. bubble of people ages and we end up with more people in the state of kind of frailty and advanced age that you’re talking about. And we haven’t built the structure to really support that. It’s I think it’s going to fall on families to caregive, which is a whole other issue.

Oh, 

Dr. Diana Barnard: don’t get me started if we were if I was at home right now you would see in my background, a beautiful Japanese print of a tsunami, because that’s what’s coming is a tsunami of care needs [00:20:00] and right, who is going to provide that care and people might think it’s family but the truth is. family. First of all, they may be living far away.

They may have a job on a farm that they need that paycheck and they just can’t take off every Monday to take care of mom. And the care needs may be such that caregiving, right? In the old days, maybe it was your 99 year old grandma moving in with you and you made her lunch and you chatted with her. And when she got pneumonia, she kind of took to her bed and away she went.

But now, caregiving can mean helping people with tube feeds or dressing changes, or doing all kinds of complicated things that some families can do, but it takes a very big family and a committed family who has the right resources. And those resources are somewhat financial but they’re, they’re more than that.

And it’s, there’s a lot of people [00:21:00] for whom family isn’t around or isn’t able. And then what? 

Diane Hullet: And then what? Do you have an answer to that question? 

Dr. Diana Barnard: Well, I mean, part of my job as a palliative medicine provider is help people adapt and cope. And for some people, adjusting to a new life, having to move into an assisted living facility, or there are some very lovely retirement communities with continuing care.

Or even moving into a nursing home for some people, they are able to adjust and they can make peace with it and they are interested in prolonging their life, even under very different circumstances and I celebrate that and a good part of my work is helping people see what’s possible, even in those tough circumstances.

And likewise, there are other people who say not for me, that based on my values, who I am, how I have lived my life, that is not going to [00:22:00] work. And I would prefer to leave this good life early than live it under circumstances that I do not find acceptable. And… Those are the people, some of those people are interested in medical aid and dying.

Now, there are still lots of limitations, right? You have to be, have a six month prognosis. I do meet with many people and I’ve had even two of them in the last week who are living with the, with serious illness, and they don’t quite have a six month prognosis, but their quality of life has already become compromised, and they desperately fear what’s coming.

So, this is only one piece of the puzzle, but we do not have a way to meet the needs of those folks and so we need more tools. 

Diane Hullet: We need more tools, says 

Dr. Diana Barnard: the funny girl. I love that. 

Diane Hullet: More tools to really alleviate suffering, I think is what we’re talking about. Yeah, I [00:23:00] think, you know, there are critics of this work, of course, as well, right?

There are people who say this is wrong or this won’t work or this shouldn’t be chosen or, you know, there are a variety of reasons for critiquing what you bring to medical aid in dying. How do you respond to 

Dr. Diana Barnard: those? Well, it’s about individual values. And we’re talking about choices that do not have an impact on other people.

You hit the nail on the head with the word suffering. People are suffering and suffering is unique. And the most important thing for me as a physician is, in addition to helping people be heard and understood, do no harm. That’s a very complicated statement. What does harm mean? And the reality is that sometimes providing a certain kind of care, standard medical care, is harming people because it’s not consistent with their goals and [00:24:00] values.

And so what I’m trying to do is deeply listening to suffering. And really looking for opportunities to meet that patient where they are and to not do harm as they describe it and to offer relief for their suffering as they feel it. So, if they have pain, I’ve got some good medicines I can give for pain and different treatments that can help pain.

If they’re short of breath, I have other interventions I can do. And when people are experiencing… The kind of existential suffering, what is the meaning of my body in this state? What is the purpose of losing more of the quality of my life as I am dying? Those are profoundly personal questions. And I am simply offering a tool once I identify that kind of Suffering and distress, which, by the way, is much harder to alleviate.

Yes, we talk about it. Yes, we look for opportunities to find meaning [00:25:00] to adjust to adapt. We address their spiritual needs. I have a so Cracker Jack social worker who listens deeply to suffering. All of those things sometimes are not enough. And when they’re not enough. I have something else to offer for those people who want it.

Diane Hullet: So profound. I think the trajectory of your work as a physician is so powerful. How you describe going from a family physician who wanted to see people and hear people, which then led you to say, maybe that I’m moving towards palliative care because the medicine was moving more towards machines and diagnosis.

And Advocating medicines to people on TV commercials, which just made it all more complicated. And then now you’re working in this particular field. It’s just a profound trajectory of alleviating suffering, I think, and supporting the individual. And it’s interesting how much we. We talk about individual values, but then there seems to be also this movement to [00:26:00] impose values on others from all sides of the political spectrum.

Right. And so how do we get along in this messy democracy with people who have different values? How do we continue to respect individuals, see them and hear them? It’s, it’s, I mean, these are big questions. 

Dr. Diana Barnard: Yes, they are. And there’s a lot of, you know, societal and social challenges which have made it harder for us to have those conversations.

But when I think back again to my farming, you know, upbringing, and the kind of people that I crossed paths with, and how different many of our political views were, even how we lived our lives, and how we came together and found common ground and respected each other for the differences. We need more of that.

We need 

Diane Hullet: more of that. We really need more of that. What do you, what do you want people to take away from listening to this conversation? 

Dr. Diana Barnard: Well[00:27:00] because of the nature of the work that I do, I would take a step back and I would say, you know, we need to get more comfortable accepting the natural cycle of life and death, and that we are all going to die.

And that the truth is. Chances are some things are going to happen to us and to our bodies that are unexpected and we’re not prepared to deal with and it’s going to be curveballs. And so we need to be open, and we need to educate ourselves, and we need to be clear with the people around us what’s important, and we need to be flexible.

Sometimes we have to adjust what we want because our first hope may not be possible, and hope is eternal. So there’s another hope there’s more that we can do. And so I want to be a part, just like what you’re doing with this podcast of having open and honest discussions about something we’re all going to face and just talking about it more and getting comfortable, both in the positive aspects, [00:28:00] what we can, how we can maintain control and what we can do that we really want and the tougher parts so that we can manage it all together.

Yeah. Yeah. 

Diane Hullet: I’m struck by, I was thinking when you were first talking about catching babies, I was struck by Dr. Stephanie Green, who does this work in Canada. She talked about how she started calling her medical aid in dying work deliveries. Also, she said, I used to deliver babies and now I deliver people at the other end of life.

And I thought that was so beautiful. And it ties into the farm thing too, right? A lot of deliveries. on farms, both of baby animals and out of their suffering. 

Dr. Diana Barnard: Yes. And the truth is, as I mentioned before, there are so many similarities between childbirth and death in terms of it’s a super important moment in your life.

Many people come with their own ideas about how they want it to go. And when something doesn’t go as they planned, it’s very [00:29:00] challenging. You want information, you want some control and you want options. Some people want to see the most well respected OBGYN. Some people want a midwife in a hospital. Some people want a home delivery.

It’s all of that. The difference is that at the end of all of that. Blessedly, unfortunately, you have this beautiful little bundle of joy, which helps you forget all the challenges that you went through. When it comes to the end of life, people’s previous experience with death and people who have watched people not die well, and not on their own terms and in a negative way, they remember that and it can reverberate.

We have an opportunity to turn that around to help people have a positive, regardless of how you die, a more positive experience with end of life. So it doesn’t have to be frightening. And we can all come into it with more awareness and more acceptance and be able to kind of just feel the love around us and deal with [00:30:00] some of the very difficult and unexpected things that happen.

Well, 

Diane Hullet: Diana, I thank you so much for this conversation. I just think you’re a dynamo and I love that this dynamic doctor up in Vermont is right there on the front lines, both working with people and advocating for this work at the political level. Cause not everybody can do both and you’re, you’re walking that fine line of doing a little of both because both matter because we have to have laws in place in order to create the individual experience.

Dr. Diana Barnard: Yeah, I feel really blessed. It’s really it’s an honor and a privilege to be invited to the bedside of someone who’s dealing with this and you’re right, not everybody can advocate and I never set out to do it. But I, as you can see I do have passion, and I have a good strong farm girl voice, and I’m trying to use that to speak for those patients who, who don’t have the energy to being out there advocating for themselves.

Diane Hullet: Absolutely. Well, I think an excellent website [00:31:00] to find out more about these issues is compassion and choices. So people can look at that if they’re interested. I don’t know if your medical center has a website that would be interesting for people to follow. 

Dr. Diana Barnard: Well, the advocacy. Advocacy and education group that I’m part of patient choices.

Vermont has a very good website with all kinds of information about advanced care planning and talking to your medical providers and medical aid and dying both those from out of state and in state. So I’d send people there as well. 

Diane Hullet: Excellent. Okay, great patient choices. Vermont is Vermont spelled out.

Yes. Super, and as always, you can find out more about the work I do at Best Life, best death.com. Thank you again to my guest, Dr. Diana Barnard. 

Dr. Diana Barnard: It’s been a pleasure.