Back in America

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Welcome to Back in America, the podcast.

Death is no easy topic. Most of us live our lives like there is no end to it. Well, today in the show, we are talking about one of the most difficult things one can do, caring for a dying loved one. Imagine turning your home into a mini intensive care unit so that your loved one could die in their bed. Americans are increasingly wanting to die at home, and caring for a loved one in those final days is extremely difficult. Welcome to Back in America. We have the privilege of speaking with Dr. Andrea Sankar, a professor of medical anthropology at Wayne State University and the author of Dying at Home, a family guide for caregiving. Andrea, it's a pleasure to have you here. Well, thank you for inviting me. Andrea, I'm curious, what got you interested into the topic of dying at home?

Well, my specific interest in this case and the case of dying was when my sisters and I cared for our mother who was dying at home. And at that point, we were all young mothers with little children and full-time jobs. And I lived in one city and they lived in other cities. And the reality of essentially creating a mini ICU in your home was pretty overwhelming. I mean, we managed quite well, but there was very little information around to help us. And there were hospice people who visited and helped some for sure, but the amount of responsibility was huge. So, Andrea, it sounds like your personal experience played a crucial role in shaping your professional journey. I wonder what role did your sisters play in this book?

So my sisters, because they knew my interest in aging and that I'm a medical anthropologist, they said, you should write something on this. So at their urging, I began a research project, which took several years. I did a lot of in-depth interviews, a lot of case studies. We very consciously picked a lot of different kinds of relationships in the case studies. So it was like spousal relations, parent-child, parent-young child, siblings, as many different ways as we could think of to illustrate. And so that people who read the book, the idea is that you can actually see how someone went through this process. You can really observe it. And then at the end, the last chapter, when we talk about the actual death experience, people, a lot of people have never seen anybody die.

So that was very consciously done as a way, kind of a mini ethnography of people really getting inside of what the experience was like. And the result was this book, the first version of this, the first edition. Now, this is the third edition. What kind of reception did the book get? People have been incredibly positive about the book. And one of the things that surprised me is I wrote it with the idea that, you know, when you're a home-based caregiver for somebody who's dying, it's a huge responsibility. And most people are not prepared for it. And you're making a lot of decisions that you don't have any background for.

So I wrote it with the idea of speaking to somebody who was sort of on the front lines of caregiving. But in fact, a lot of the response I've gotten has been from people who've done this. The person has died and they read the book to have a sense of what it is they did and to form a community and see they want to share their experience. Because very few people in American society today talk about, even though it's happening all over the place, it's not something that's widely shared. And so people use the book as a way of getting perspective on what it is they'd accomplished. It's interesting you mentioned how people in the U.S. relate to death. What was your experience back to your early days in Hong Kong? Do you feel that there is a cultural divide between the way people think and relate to death?

Yeah, there was huge. I mean, where I was living, it wasn't just nuns. There were a lot of lay women who were there. They were all single women who'd been part of an anti-marriage movement. And they all had urns underneath their bed. They bought all their material for the output that they would be cremated in. Periodically, they would take out these things that they had purchased and add to them, look at them, make sure they were in good shape. And then there were kind of like trips that they would take to visit places where urns have been, ashes have been spread.

And that was sort of a regular part of saying hello or saying goodbye to people. There is a Chinese festival called Qingming. Once a year where people go to the graves of somebody who's died and they clean the graves and they have a picnic and they celebrate the person. And it's kind of a joyous thing. They're incorporating the person who's died into their ongoing life. They're just in a different space, as it were. But they're still part of the family or part of the social group. So it's really quite different from what I experienced in the United States.

And how would you define the way Americans deal with death? Well, a lot of times they don't really. I mean, they don't think about it that much. Obviously, people who are very religious or who are members of different faiths think about death and death is addressed within those different religious traditions. But in terms of an ongoing part of people's lives, it's not. Now, there have been recently things like the Death Cafe and people tried to draw, write journals as if this was their last year of life. So people are beginning to think more seriously about death and about incorporating into their daily lives. But this is not something that's widespread, as I understand it, and is in quite different from other cultures in that way. Yeah. What is the Death Cafe?

The Death Cafe is a social group that meets, maybe they meet once a month, and the people are committed to sort of discussing, you know, what would happen when they died? How do they want to die? Just sort of a way of stimulating conversation about it, because it is such a topic that is ignored in American society. I was reading that since 2016, people have started to really want to die more at home. And since COVID, we've seen a big increase in the desire to die at home. Do you agree with those numbers? Well, yeah, since 2016, over half of deaths have occurred outside of both hospitals and skilled nursing facilities. Part of that is because there's better reimbursement for, I mean, better reasons for care. So, for example, it's a Medicare and Medicaid benefit. Most private insurance companies have it. It's also very much to the hospital's financial advantage to move people out of the hospital.

So some of it is, yes, people want to die at home. Some of it is that they're being pushed out of hospitals by the hospital administrators. And then, of course, there have been dramatic improvements in both pharmacology, medical technology, and medical care, so that in most cases people can die at home in relative comfort compared to what it was even a few years ago. Okay. So you started by saying that your first experience was a personal experience, where you cared for your mother who died at home. Within that experience, this very personal experience, or maybe other stories and people you've met, did you ever come across an expected joy moment that people have experienced? Yes. Yes. Most of the people who I interviewed who agreed to share, I mean, I've interviewed them for several hours each, did it because they wanted to share this amazing experience, this amazing accomplishment they've had.

So some of the things that really stood out, which are sort of counterintuitive, I think, and that's one of the reasons they struck people so much, is when somebody was completely overwhelmed with the kind of care that it takes to help somebody die, sometimes family, sometimes neighbors would say, and they wouldn't even ask them, how can I help? Because just to answer, how can I help, becomes a kind of an additional burden. So they would just, I remember one couple who were caring for a two-year-old son who was dying. They said, well, the neighbors just came into our house and took the dirty laundry every week and like washed the laundry and then gave it back to us clean. And people would do, or another couple I knew who had a child, or I interviewed a child who was dying, they said, well, the husband worked in an office that was several miles away from the town where they lived.

And so he came home one day and said, my company has just moved me to the local office. So I'm right next to the house, practically. And so the way that people would, usually you don't intervene in somebody else's life unless you talk to them about it and get permission. But the way that people would take it upon themselves to say, we can see you're overwhelmed. We're going to do this to help you. We're just going to do it. And that was really great. They were remarkable people.

It was very memorable. What kind of interaction do you see between the person who is dying and the person taking care of them? Well, that's a huge range. That really depends on the person, obviously, and the caregiver, as well as the kind of medical condition they're in, what symptoms they have, whether they are heavily medicated for pain. But often it's very normal. I mean, I have a lot of cases where people who are very social continue to have their friends visit. They have cocktail parties in the room where the person is.

People who have young children, sometimes they'll have a birthday party in the room where the person is dying. I mean, they continue. It's not a somber thing at all. I mean, the person who's dying, if they're not cognitively impaired, that's one of the reasons they do it. They will lift somebody up and carry them to a table so they can be part of Thanksgiving dinner. Even though they really can't eat, they're there because they're part of the family. So part of the whole goal of having someone die at home is that they can live while they're dying. They can be part of the family.

They can be part of their social world. They can be part of the life that they've always known, even though they're about to leave it. And that's interesting you say that because talking about death and dying at home, can be a very deep and sad experience, but you make it sound like it can even be joyful in a way. Yeah, there are times when it's definitely joyful and funny. People would tell me stories of like times they'd laughed and people would go through a lot of a common thing that's done is people go through old photographs and they look at them together and that person who's dying will add any information or anecdotes and they laugh about things that have happened in the past. I mean, everyone's conscious that they don't have much more time together.

So if possible, they try to interact well and really like have memories that they can store up and it can be quite joyful. I mean, I'm not trying to clear code it. It's extremely hard to do, but it doesn't mean it's sober or grim the whole time at all. Both of my parents passed and my dad was, I would say, lucky enough to die at home, surrounded by his loved one. And my mom, unfortunately, had to die in a hospice. I said, unfortunately, I mean, she was not unhappy. She was very well cared of, but certainly she would have preferred to die at home. So how do you approach this maybe feeling of guilt for the caregivers who can't afford to have their loved one die in their favorite setup?

Well, that's really important topic because, as you noted earlier, more and more people are expecting and asking to be able to die at home. And not everybody can do this. And that's a really important message of our book. It is really hard. And caregivers, they have to assess what's needed, whether they have the stamina, whether they have the resources, whether they have the social support network. And sometimes they just can't do it. And then they have to have, as difficult as this is, have to have the discussion with the person who's expressed that wish because there's no way that the family informal support system can actually provide the care that's needed. And that's really difficult.

But it is a reality. If you're by yourself or if you don't have people who are going to support you and you're going to be the main caregiver, as you know from your own experience, one of the things that happens when people are dying is they often don't sleep. So you may get very little sleep and there's no way you can provide safe and comfortable care if you're not getting at least some modicum of adequate sleep and also somebody to help you with it because it's really intense. So one way that thinking about it is if you don't have the resources, then you're the person who's dying is going to be safer and their quality of life is going to be better if there's an institution. You can't always get them into an institution. Can you actually talk about racial difference in home-based and of life care in the US? There's huge health disparities in the United States. There's no question about that.

Because hospice is a Medicaid and Medicare benefit, people have access to that care if they want it. Now, it has been the case in the past that many times African Americans are reluctant to actually go on to hospice because they assume that care will be withdrawn. And in fact, it's not just African Americans. Many people are worried about care being withdrawn and that they won't be maybe they could have lived if they didn't accept hospice. So that's a concern, but that's not about hospice. And per se, it's just about people's misperception of what hospice is. I think when the actual care, when the care is delivered, it's pretty uniformly good. I mean, it's a federally reimbursed program, so there's a lot of oversight to it.

And if they elect, if any particular elects to hand up hospice, then the care that they're getting should be standardized. Now, the key thing there is that the hospice benefit is limited. So the family may not have the additional resources to hire somebody else. However, many families have extensive kinship networks. And so the kinship networks can substitute for the additional help that other families could purchase. If I were a dying person, what would be the most important thing I should do to prepare myself and my family for dying at home? You need to make sure that whoever is going to care for you is not alone. That's the most important thing.

This is not something one person can do. So they need to definitely have an adequate support work. One of the things that has to happen is the caregiver has to be able to take care of themselves. I know that sounds sort of new agey, but in fact, it's true. I mean, so much responsibility is on their shoulders that they need to, and that's hard to, for many caregivers, it's hard to accept because they think every minute with the dying person is something that is very precious. They don't want to give up. But in fact, if they have to take a run or go see a movie, they really need to do that. Then it's important for the person who's dying to have a sign of medical power of attorney, which can be done using an elder law lawyer.

When the person is dying towards the end of life, oftentimes they come in and out of consciousness. They may sleep a lot. They may not, depending on the kind of medication they're taking, they may not be completely competent to make decisions. So they need to have, so the person who's dying needs to tell, we can be a spouse, it can be an adult child, it can be best friend. It doesn't matter who it is, it's somebody that they trust. They need to make really clear what should happen. Say, for example, if they, maybe they have cancer, but then they develop a urinary tract infection. Well, should we treat the urinary tract infection, which can be very uncomfortable, but also could prolong their life?

Or should we just let it go and then you might die a little sooner? So the dying person needs to make all of those decisions clear before the situation happens. And that can all be written down in a living will. And it also can be the decision, the ability to make that decision on behalf of the person who's dying, and can be go to their designate. And that can be a health care power of attorney. There are lots of different names for the person who can make those decisions. But it's really important that the dying person gives somebody else that responsibility and that they agree on what the decisions should be. How can I make sure that I leave a meaningful legacy and that I find peace in my final days?

And what are some of the activities that you, on reflection that you recommend? Leaving a legacy is really important. I think the people that we've worked with, that's one of the things they think a lot about. Just the very fact of the family caring for somebody who's dying is a legacy for the younger generation. They see people coming together. They see people making choices about a work assignment or doing something and not doing it so they can be at home. So it's a real model for the younger generation to say, OK, this is what our family's like. And the dying person can facilitate that.

But then also the dying person probably wants to, if possible, if there are remaining issues with friends and family that haven't been resolved, to try to resolve those so that that person, the person who's dying, can die in peace. And then the people who are associated with those issues can also have some peace after the person has died. And then, of course, depending on people's religious preference and old traditions, there are many religious steps and rituals that have to be undertaken or should be undertaken, I should say, before someone dies as a way of turning to terms, making peace with their religious tradition and sort of stating that they're ready to die and making sure that they're ready to die. What else do you recommend that the dying person say and share with their caregivers?

It's a problem because this is really fairly new in the United States. It used to be, of course, everyone died at home. Now it's fairly new. A dying person who recognizes the huge gifts that they're being given by the family that's caring for them, if they can acknowledge that they are aware that people are doing something momentous for them. I, with the people I interview, when somebody has in some ways not said thank you, but shown that they are aware of what it is that's being done on their behalf, it means so much to the people who live on afterwards that the dying person recognized what it was that they were doing. What are some of the problems that you think caregivers face, and what are some of the tips you would want to give them?

Caring for somebody who's dying is an overwhelming process. People are so sick, so you're constantly taking care of them. A lot of people said to me in the interviews, like, they were surprised when the person died, because they were so focused on the day-to-day and making all these little decisions and trying to deal with complex issues that they almost forgot the person was dying. I think one of the biggest problems that people face is social tension. I mean, if there are problems in a family, it can be from childhood, sibling rivalries, whatever, they're going to come out in this particular time, and they can really cause a lot of problems.

That's where being part of a hospice, a hospice social worker is really good at helping navigate some of those tensions. So that's one thing. The second thing, second marriages often are problematic. People who support the caregiver when someone is caring for someone who's dying are often more attentive to helping the caregiver, the person who's going to continue to live, than the dying person. So a lot of the support that comes comes to the caregiver. Maybe it's on behalf of the dying person, but it's also to the caregiver. So in second marriages, one of the spouses, if they don't have good relationships with the first family,

then that family may not show up or will only show up to sort of sit at the bedside of the person who's dying, but won't do any of the care. And that can be very difficult for both the dying person and for the caregiver. They expected that, say, all the adult children would come and help, but the adult children from the first marriage oftentimes don't. So those are, I think it's the social, the physical strain of doing the caregiving is huge, but it's the social tensions that emerge that oftentimes people aren't aware of and that can really be difficult. Some people make it their profession to care for the dying. What advice would you give someone who wants to step into this job? Well, it can be extremely rewarding.

I mean, you're with people at obviously the most difficult time in their lives, and a professional who is really competent can make a huge difference. I mean, for example, you can be their occupational therapist, their physical therapist, along with doctors, nurses, and social workers who are involved in hospice care. Just setting up a house so that a dying person can leave their room and go into the living room, be part of things with everybody, and sometimes that's a physical therapist who does it, sometimes it's the occupational therapist. That can make a huge difference in everyone's quality of life.

So you can make a bigger difference in some sense caring for the dying and being part of the dying process than you can in almost any other area of health care. So it's very difficult, it's very stressful, but it also can be immensely rewarding. We are getting at the end of this interview. I've got two more questions for you. What key ideas or tips do you hope that our audience will take away from this discussion? If you're going to do this as a caregiver, make sure you've got help. Very, very important.

Secondly, know that the best you can do is good enough. You don't have to be perfect. You're not a trained nurse. You're not a trained physician. The best you can do is really good. And you should be very clueless that you are able to do it and that you're able to care for the dying person. So I think those two things are the most important things to remember from this. And finally, the question that is really part of the whole frame of this cast is what is America to you?

Yeah, it's an interesting question. So I think America is a place that's immensely culturally diverse, which I value tremendously. It's a place that respects laws and that laws exist and it is a system of laws and we live by that. But within that, that system of laws creates a framework for the cultural diversity and also for immense creativity and entrepreneurship. So it's an interesting flexibility as well as structure that I think represents the United States. And then, of course, there's a shared history that we all value and that there are different aspects of it and we may celebrate it differently. But coming to this country, you have this really rich and exciting tradition that you're part of and that you can become part of it. Even if you are a new immigrant, you can become part of that tradition.

All non-Native Americans are immigrants in this society. And so you share that with everybody. Thank you. Are you working on any future books? What's going to be your next project? I'm moving away from death and I'm working on sustainability in cities. That's my new spirit. Very different.

Yeah. Well, I'd like to talk to people who don't start crying. Have that been your experience with the book? Yeah. After I wrote the book, I did a project on fishing, which it was so nice because people love to talk about fishing and they love to talk about their joy in fishing and they don't cry. I mean, when they say they don't cry, I just mean I empathize with their pain a lot. Yeah. Personally, I did care for a dying person who was the dad of a lady I was house sitting for.

And the man was, yeah, he had cancer. He died extremely quickly and he died with me. Her daughter was not there. So I had to run and get her. It was extremely emotional. But the final days, I mean, you talked about it, it was tough. I mean, the man was waking up at all time of the day and night. So I didn't get a lot of sleep.

It was tough. And I was very young. I was 19, I think, at the time. That's really hard. So it's, yeah, it's a tough experience. I mean, you can imagine doing that with little children and a full time job. And a full time job. Yes.

You picked up in your book the story of Lisa Note and David Stainer, the story of an acrylic smother. Yeah, you have a lot of very touching stories. Yeah, they were pretty amazing, the people who agreed to be interviewed. I learned a lot from them. Did some heroic things. And that's the thing is doing this is a kind of heroic undertaking because it's so hard. And yet there's very there's almost no cultural way of recognizing the accomplishments that people have had. I mean, they really have done a lot.

Thank you so much for sharing your insight and experience with us today, Andrea. This conversation has been incredibly enlightening and has shown us the complexity and the reward of caring for a dying loved one at home. For our listeners, whether you are a caregiver, a health care professional or someone who is simply interested in understanding more about end of life care, I hope you found this discussion as valuable as I did. It's a reminder of the importance of compassion, community and the profound impact we can have on each other's lives. None of us like to dwell on this topic. Yet, if there is one thing we can all be certain of, is that we will all die. I hope this episode has helped us reflect and consider how we might support those around us.

Remember that you are not alone. There are resources and community out there to help you. You will find the reference to Andrea's book in this episode's note. Remember to subscribe to Back in America and stay tuned for more fascinating stories coming out soon. Thank you.