A Death Doula on Pancreatic Cancer and the Limits of a TV Portrayal

Kim Stravers is a certified end-of-life doula and educator with the International End of Life Doula Association (INELDA), with additional proficiency through the National End-of-Life Doula Alliance (NEDA). She is based in the Phoenix, Arizona area, volunteers with a local hospice organization, and provides private doula services to patients navigating serious illness and their circles of care.

In Part 2 of this two-part conversation, Stravers drew on a patient experience involving co-occurring pancreatic cancer and Lynch syndrome to illustrate how intergenerational illness can shape the dying experience. She also shared her perspective on the limited but growing research base for end-of-life doula care, responded to a high-profile television depiction of her role, and offered direct guidance to oncology clinicians interested in partnering with doulas.

CancerNetwork®: Do you have any specific examples of patients with cancer you have worked with that illustrate how you can make a difference in their care?

Stravers: I will share an experience I had as a volunteer doula for the hospice organization I work with here in the Phoenix Valley. The patient I was assigned had pancreatic cancer and Lynch syndrome. Because Lynch syndrome is genetically inherited and increases risk for things like pancreatic cancer, it was unsurprising to learn that her daughter also had pancreatic cancer. Her daughter predeceased her with pancreatic cancer.

This patient had quite a lot of existential dread and anxiety around what she imagined her dying process would be like. She was living in the home of her nephew, and a fellow volunteer doula colleague and I came together to visit this woman and her nephew to simply be with them in whatever was going to unfold through this process. I was called in by the existing hospice care team to help support this woman in her anxiety. She was definitely having breakthrough pain from the pancreatic cancer, but on top of that was this very intense layer of worry, concern, and anxiety around the fact that she had already been through her daughter’s death from the same conditions. It had been very painful. Her daughter had a great deal of struggle, discomfort, and pain at end of life, and this woman was carrying that experience forward in her body. Her daughter’s dying process had modeled for her what she then took in as: it is going to have to be like that for me, too.

I was able to come in and do weekly visits with this woman, support the registered nurse [RN]—the RN and I would sometimes have overlapping visits—and we would talk about pain generally. I would reach a point where I would say, “Here are some things I can do with you as a doula, but I know our RN has some other options for you that are clinical; how about you continue that piece of the conversation with her right now?” The outcome over time was not that I was there to fix her existential distress or her anxiety. I was there to be with her and to help her understand: where might this be coming from? Do I want to do anything about it? If yes, what are my options, and which one feels like the right tool at this time?

When I would come back week over week, it was not my expectation that she was on this clinical model of diagnosis and point of health where [we would say], “We’re going to move you along this trajectory with some really specific interventions. We’re going to monitor benchmarks and track your progress.” She could not fail. She could not “not respond to treatment” because that is not the model a doula operates under. My colleague and I were the only people coming into the home as part of the hospice care team who did not have a clipboard, were not taking vital signs, were not touching the physical body, and were not coming in to demand anything of her. We were there to check in and work at her invitation for presence. Presence is by far the most powerful tool that we have.

When I would come to see this person, maybe one week she would have less anxiety than the week before, but maybe the next week her anxiety would increase. Then, we would have a visit, and I would find that the calm she experienced as a result of our presence would last for maybe a day or a day and a half before things started to ramp back up again.

It was a very profound experience of seeing how a genetically inherited condition that increases the risk for a particular type of cancer can also manifest as this intergenerational inheritance of the experience of that illness and how every death we have witnessed before us comes together to shape and color our expectations about what it will look like for ourselves, as well as anybody else in their dying process, particularly if it is the same cancer.

However, that is one person with pancreatic cancer. I have accompanied others with pancreatic cancer, and I do not walk into the room with the expectation that I will be facing the same body having the same experience. It just happens to be the same word for the same diagnosis. How that disease manifests itself in the body, and how that person metabolizes their emotional and spiritual experience, is going to be very different person to person. I walk in as a blank slate.

Is there any research on whether doula support reduces anxiety, improves bereavement outcomes, or influences goals-of-care decisions? If not, where do you think the evidence is most needed?

There is scant research to date that measures the impact of end-of-life doulas on patient outcomes, quality of life, or any particular element of the dying process, but it does exist. There is some sound research out there that points to doulas having an impact that supports people in feeling more ease, more preparedness, and perhaps more acceptance of what is coming, or what is coming for their loved one. I would love to see more research done. I would love to see [researchers] actively reaching out to their nonmedical counterparts, like end-of-life doulas, and to the families and circles of care who are going through this process of disease progression to cultivate that data set. It is useful not just in unlocking opportunities but in unlocking understanding and integration.

Does the way the television series The Pitt portrays the work of a death doula resonate with your experience?

The way that The Pitt portrayed the end-of-life doula resonates in certain ways, but does not in others, and in fact runs counter to my training and experience as an end-of-life doula.

I found it an interesting choice that they married the end-of-life doula character to someone who was already an RN in the emergency department. As I mentioned, we have plenty of nurses who come into end-of-life doula work, but we separate those roles distinctly. The separation was present in the sense that she came in her street clothes and said, “I’m here in this capacity, not in my shift capacity as an RN.” However, there were a couple of things she did that an end-of-life doula would not do, such as asking after a specific medication—she was asking about levetiracetam [Keppra] for seizures. I would not do that as an end-of-life doula. There was also some taking on of responsibility for arranging durable medical equipment to be delivered to the home. I remember the spouse, or perhaps the dying person, asking who was going to order all of that, and the doula saying she would handle it. Really, it is the hospital social worker and the hospice social worker co-coordinating that delivery and setup. There was a little bit of overstep in some places that I would not say are within the scope of the doula as I understand and perform that role.

But there were also many places where what she was doing was exemplary of what we do. Holding space for the children when they knew their mother was dying, having a conversation in the hallway when a child felt too scared or uncertain about coming in to say goodbye, and advocating for the dying person to honor what she wanted for herself, which was to remain in the hospital and not go home to die. There were many places where I think the role was presented beautifully, and I love that it is even being introduced because doulas can be present in a highly medicalized setting. It is not always home hospice. There were just a couple of places where I thought there was some overstep into the clinical role, or an assumption of responsibility, whereas a doula would look first to the circle of support and ask who has capacity to step in and support your loved one in this way, rather than assuming she would go in and fix or set things up herself. We work at invitation, and we always defer to the circle of care and the support network that is already in place for the person who is dying.

Is there anything else you would want clinicians to know?

Many doulas I know, myself included, are very eager to have conversations and build relationships with the medical side of end-of-life care—with RNs, physician assistants, physicians, and anyone who interacts with a person who has been diagnosed with serious illness. We want to build relationship and community so that we have a very strong web of care that can be offered to the people who exist in our space.

If you are curious as a practitioner about end-of-life doulas, there are directories; NEDA has one. You can go to inelda.org and search for end-of-life doulas in your area. Cold call. Invite conversations. Be open to receiving invitations for conversation that come from the other direction as well. The medical professionals I have encountered, even those who had not previously known what an end-of-life doula is or how we support, tend to walk away very enthused about the ways we can augment one another’s care.

There is real potential to bring this extra layer of support to people who are seeking treatment and seeking improved quality of life throughout their disease trajectory. Quality of life can be in the last 2 weeks of your life, or it can be in the next 12 years of your life. Planning for end of life is something everyone should do because it is coming for all of us, and we simply do not know when.

Part 1 of this conversation covered the definition and scope of the end-of-life doula role, how it complements hospice and palliative care teams, and the current state of doula training and credentialing.