In this interview Isabella Carr, a graduate student at Harvard Divinity School and Compassion & Choices’ engagement fellow, discusses her background and interest in end-of-life care. Isabella talks about working with fat people and addressing the unique needs and challenges they face at the end of life. Isabella notes the importance of providing compassionate care and support for fat people and their families. During her fellowship, Isabella plans to contribute to Compassion & Choices’ death doula and diversity initiatives. Read a longer interview here to learn more about Deathfat Doula, Isabella’s organization. 

Compassion & Choices: Can you tell us about you and what drew you to the end-of-life options movement?

Isabella Carr: I’m currently a graduate student at Harvard Divinity School in the master of divinity (MDiv) program, a degree that combines religious studies and history with pastoral, or more clinical or practical, education around spiritual care provision. I am focused on end-of-life care specifically and am also a doula, so between a pastoral counselor role and working alongside different clinicians. I wanted to understand the spiritual and religious side of working with people who are dying. Some of the more standard end-of-life planning and hospice experiences kind of miss this huge spiritual, emotional, almost psychic element of what it means to come to the end of your life.

I applied for the program in 2021, and like many people during the pandemic, I was considering what I needed or wanted to do differently. I had been thinking about death work and the end of life before that. I’ve experienced a lot of death among my close friends and family, and I’ve always been relatively comfortable with death compared to how other people might shy away from it. Certainly I don’t want to die and am scared of death myself, but I’ve never been uncomfortable about the fact that we do die and that we need to talk about it. So I started to explore different doula trainings, did a few online and looked for some that were in person, but I often felt that the training models were incomplete in the sense that they can help you with the practical preparation and some grief support training, but can’t always get into the spiritual side. So that’s why I applied for divinity school.

Compassion & Choices: How did you get involved with Compassion & Choices? 

Carr: I’m from Portland, Oregon, so I was always more familiar with the death-with-dignity or right-to-die movements because Oregon was the first state to authorize medical aid in dying. When I got involved with death care, I was working with a doula, Jill Schock, in Los Angeles after the End-of-Life Options Act passed in California. She found that it was something that many of her clients were interested in learning more about or wanted to utilize at the end of their lives.

Compassion & Choices came up a lot in my training because of aid in dying, but also the dementia toolkit, death planning resources and advocacy work. Later at Harvard, my boyfriend’s aunt was curious about what I was studying and mentioned that she knew someone at Compassion & Choices. I was able to connect with some of the staff in Massachusetts at an event on campus and pilot the engagement fellowship at Compassion & Choices with staff on the engagement team.

Compassion & Choices: For folks who might think of a birth doula or not know about doulas at all, how would you explain death doulas?

Carr: I think a birth doula is a great example. If people are familiar with that concept, it can be extended to the end of life as well. It is essentially someone to support you or your loved ones or whoever is contracted with the doula throughout this transition process. In my experience, death doulas can have a slightly broader scope, though all doulas provide varied services. Death doulas can work at any point in the end-of-life process, including well before you have any sort of terminal diagnosis or are even near death, including if you just want to contemplate the end of your life and would like someone to guide you through that process or just to be present with you. You also have everything from end-of-life planning and preparation like support with advance healthcare plans, proxies, support with coordinating care, funeral arrangements, interment and disposition options, living funeral planning, and Swedish death cleaning. Many doulas also offer grief support for both the dying person and their loved ones. So you really get a wide, expansive range, which I think is a beautiful part of death doula work — you see how death touches all these parts of our lives, and can access guidance and support through every stage.

Compassion & Choices: Can you talk about how Deathfat Doula came about, maybe what specific need it addresses and any kind of challenges that you might be encountering in your practice?

Carr: Deathfat Doula officially launched last summer under the support and push of a doula I was working with who basically said even if it’s not perfect, you have to put this work out there. I’ve always been fat, and it’s always been a part of my identity and politics. When I came to death work, it was clear that fat people were not meaningfully included, if at all, in end-of-life conversations, training and resources. Their material, cultural, social, emotional and spiritual needs were not being accounted for. 

The term “deathfat” borrows from Lesley Kinzel, author of the blog Two Whole Cakes. She used deathfat to poke fun at the term “morbid obesity,” which communicates the idea that at a certain weight, you are diseased or so fat that you’re going to die. I ask, what happens if we follow the “joke” to its punchline? And so I use deathfat to highlight this categorization, one that a lot of fat people experience, which says your body is in closer proximity to death. I think it’s not a dissimilar experience to people who have chronic illness or disabilities or experience other marginalities, who not only require different material interventions but also may have different spiritual needs at the end of life. Deathfat Doula, to me, is a way to acknowledge the specific experiences of fat people and to provide services that address their practical and emotional or spiritual needs. 

Compassion & Choices: What are some challenges that fat people face at the end of life and after death?

Carr: If you look for fat-specific interment or funeral arrangements, you have to piece together a ton of different resources. You have to physically call funeral homes or crematoriums and ask how much they charge for someone at a certain weight. And many of them charge incremental increases, like an extra $50 or $100 for every 25 pounds or 50 pounds. These charges are rarely transparent, nor are they standardized across businesses, which makes it that much more difficult for fat people or their loved ones to make plans. End-of-life planning can be daunting in general, hidden costs like custom caskets, extra plots, more transportation costs or cremation weight-based upcharges make what is often an incredibly difficult and costly time feel even more devastating. Unfortunately, improvements in disposition options for fat people have been incredibly slow to improve. In my scholarly work, I’ve written about Blanche Moses, a young fat woman who died in 1883 while on exhibition at a dime museum. The articles announcing her death centered on the size of her casket and the number of men it took to transport her body. In my research, including some interviews with doulas, morticians and undertakers, this rhetoric remains.

Compassion & Choices: What are some challenges that fat people face at the end of life and after death? (cont’d) 

Carr: You hear horror stories of how fat bodies are treated in some crematoriums. Fat bodies are often put in first to stoke the fires effectively, which may be just a practical concern, but it gets into some of the injustices that fat people experience when they’re coming to the end of their lives. Of course there are tons of really wonderful funeral homes and crematoriums, and part of my work with Deathfat is to provide resources to empower people to find better providers. As a doula, I can speak candidly about the dying process and planning, and help fat people and their loved ones plan effectively given these sometimes harsh realities. This is in part compiling resources, but also introducing alternatives like natural burials or home funerals, which can alleviate a lot of the increased and unanticipated costs associated with traditional interment — custom or XL caskets, cremation upcharges and transportation. Home funerals also ensure the body stays with the family or loved ones and is handled with care and respect. Death planning is opaque generally, and if you have to factor in a bunch of additional considerations it can be incredibly challenging. 

Compassion & Choices: How do you see Deathfat changing how we approach death for fat people?

Carr: My primary focus is educating fat people and their loved ones, but a lot of what I’m doing is also educating other doulas, spiritual care practitioners and clinicians. I’ve done a couple of training sessions at Harvard and events with other organizations including Death Doula LA, the National Association to Advance Fat Acceptance (NAAFA), and Congressional Cemetery. I’ve also been on a handful of podcasts and participated in different interviews to try to get the information out there. 

The goal is that if you’re a fat person or you love a fat person and that person is coming to the end of their life, when you look online hopefully you’ll see something that says, “Hey, you deserve a good death,” and here are some ways to make that a reality as opposed to what you’d find right now, which is a lot of people saying it’s really hard to process a fat body. 

Compassion & Choices: What does it look like to prepare for death as a fat person, especially when facing stigma in medical settings? How does this tie to the spiritual elements you mentioned?

Carr: So those questions are connected. I decided Deathfat needs to be a theological project in addition to a practical one because a lot of fat people carry an immense amount of stigma and shame as well as fear and grief at the end of their lives. We need compassionate care that will address this in addition to improved end-of-life options. I pull from the lineage of HIV/AIDS advocacy and how we can provide spiritual care to people who’ve been told they’re responsible for their deaths, or who may be dealing with a lot of stigma or discrimination at the end of their lives and well before. Like other marginalized groups, fat people also face medical discrimination and mistreatment. They are often misdiagnosed or underdiagnosed, and there is a lot of research that speaks to many doctors’ resistance to providing the appropriate care to fat people. There are far too many stories of fat people who are diagnosed with debilitative or even terminal diseases that could have potentially been preventable, or they could have had a longer life or felt better for longer had doctors been more invested in providing the same level of care they would to a more “normal” body. Ellen Maud Bennett, who died in 2018 after years of being dismissed by doctors, used her obituary to condemn medical negligence and encourage fat people to fiercely advocate for themselves. Unfortunately, she is just one example. 

Practically, a big part of this is to encourage people to think about their healthcare proxy and who is going to advocate for them and be comfortable disagreeing with a doctor, going to be comfortable asking for additional testing, more or different medicine, and so on. A doula can be a good person to bring in if you don’t have people in your immediate life who feel comfortable advocating for you in that way. Doulas can help advocate for you and your loved ones. So I try to encourage clients or anyone who is learning from Deathfat to think about what’s important to them, and make sure that those wishes are written down and that you have healthcare proxies who will enforce them.

One element that’s been important for me, which is a spiritual and theological element, is to think about fat futures. For some Christians, for example, there’s this idea of a restoration after death. And so there’s a lot of discussion about what a restored body looks like. Professor Candida Moss does great work on this conversation around disability, but there’s a gap when it comes to fatness because people view fatness as mutable. So because it’s mutable, then theoretically the perfect restored body in Christ would be thin. So you also have people who are coming to the end of their lives who have not made peace with their bodies. And I’m not necessarily saying or advocating that they do make peace with their body, but I am hoping to kind of explore this idea on a case-by-case basis to say well, what do you imagine happens? Are there ways we can honor your body now? Are there ways that we can stop being at war with our bodies in this last portion of our lives? 

Other religions and traditions may and do offer people different ways of understanding their bodies in life and death. And even within any tradition, fatness is so complicated, and each person’s understanding and relationship will vary immensely. The spiritual role is to help people process all of this — the social and cultural elements, medical discrimination, death planning, funerals, grief and afterlives — and lean into some of the discomfort. I think as a death doula, you have to be willing to be uncomfortable. In Deathfat, that includes working with fat people who are not okay that they’re fat. There is no mandate for body positivity, but an acknowledgment that living and dying in a fat body is incredibly difficult, and fat people are all deserving of better options and care.  

Compassion & Choices: What are you most excited about for this summer fellowship?

Carr: I’m so excited to work with everyone! I feel very grateful to work with both community and clinical engagement, especially spiritual communities and the death doulas. I would love to be able to contribute something meaningful in my time with Compassion & Choices. I also hope I can contribute, even in small ways, to some of the discussions around advocacy and policy so they can be even more inclusive of disability and weight as part of diversity efforts.

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