‘Dying Is Not a Problem to Be Solved’: A Death Doula on Supporting Patients with Cancer

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). Based in the Phoenix, Arizona area, she volunteers with a local hospice organization, has presented at Grand Rounds for the Palliative Care Department at Mayo Clinic Arizona, and provides private doula services to patients with serious illness and their circles of care. In Part 1 of this two-part conversation, Stravers describes the scope of the death doula role, how it fits within a multidisciplinary care team, what unique needs it addresses for patients with cancer, and the current state of doula training and credentialing.

CancerNetwork: Can you give a bit of background on what a death doula does and what that role is like?

Stravers: There are many different definitions that you will find about what constitutes an end-of-life doula, a death doula, a death midwife — there are many names for this kind of work. The one that I like to center on, and the thing that is the essence of any definition that people will give you, is that we are nonmedical companions to people who are dying and the people who support them. We provide emotional, practical, logistical, and relational support to people as they are confronting their mortality. We also support people who are bereaved, as well as people who have survived someone who has died unexpectedly, whether that be through suicide, through accident, or simply a death that becomes more accelerated than anticipated in their disease trajectory.

At what point in the journey do you typically get involved, and who usually initiates that connection? Is it the patient, a family member, or someone on the care team?

It really can be anyone, and it can be at any time. Specifically for people navigating a serious illness, sometimes they will call in an end-of-life doula at the time of diagnosis —and we know that the time of diagnosis can be at any stage, any time during the disease trajectory. It is really up to them as to when they think it is appropriate to call in additional resources.

Doulas operate under the assumption that there is already a support network available to the person who is dying — maybe it is family members, community members, their medical care team, or it could be a faith congregation. We don't come in assuming that we are in any sort of savior role, or that we are going to come in and fix what is unfixable. Dying is not a problem to be solved. Dying is a natural part of the human experience.

It [is] an individual decision. I will say that, in my experience, both because we have a global resistance to the idea of our own mortality — certainly in the US, it is not a topic that you bring up around the dinner table very often — and also because end-of-life doulas are still not part of the mainstream conversation about what it means to be receiving palliative care, hospice care, or navigating serious illness, even if you choose neither of those options. That is what drives people to wait until they get much closer to the end.

In my personal experience, I tend to magnetize people who are within that roughly 6-month hospice eligibility window. My hope is that people would engage a doula far in advance of reaching that stage, because at the time of diagnosis, you probably are going to have the most access to energy, resources, critical thinking ability, cognition, and even the interest in having these conversations. As we get closer to a death, people's priorities change, and if you know that you have maybe 3 really good hours in a day, do you want to spend them completing your advanced medical directive and estate planning for the last hours of your life, or do you want to have a meaningful conversation with a loved one? Do you want to watch the sunset? Do you want to do something that brings you pleasure? I find that people call us in rather late in their trajectory, but my hope is that they would call us in much sooner.

How is your role distinct from that of a hospice nurse or palliative care physician, and where do those lanes overlap?

I love this question, because there are a lot of misguided assumptions about what we do. Because we are nonmedical people — even if we are, in other lanes of our lives, medical people — we do not act in that capacity in the role of the doula. There are many doulas in the world who have come from hospice [registered nurse] backgrounds, or perhaps from palliative care [physician assistant’s] backgrounds. They do not come into the room when they are the doula to provide medical advice, to have conversations with people about specific medications, or to provide information that only a medical professional can provide. What we do instead is support the person as they navigate conversations — both internal and external, with people who are meaningful to them — about the decisions that lay ahead. I am not there to do any body care, not there to administer any medication or therapy. I am there strictly for the kind of support that tends to emerge in the relational and conversational realms, but not clinical in any way.

In that role, we are a beautiful complement to hospice teams. One of the hospice organizations I volunteer with here in Phoenix has a volunteer end-of-life doula program. My badge clearly states that I am an end-of-life doula, and I work with the interdisciplinary team to create comprehensive, holistic support for the dying person and their circle of care. I may have conversations with, and share information and descriptions of patient encounters with, the medical social worker, the chaplain, the CNA, or the RN, but I am not stepping on their toes or walking into their lane. I am there to augment the support and to figure out how we can complement one another.

End-of-life doulas also support people who don't choose hospice, either because that decision was made for themselves — it is not right for them — or they are ineligible. Not everyone is eligible for hospice. We have community members who may be choosing to die on their own terms with the support they have available, whether they are unhoused, living with a family member, or simply do not want to deal with the extra complexity of a whole team of people coming in at various hours of the day. They may have any number of reasons to say no to hospice, but they can still say yes to an end-of-life doula.

Patients with cancer can experience significant and prolonged symptom burdens. How does that shape the kind of support you provide?

I am always guided by the [patient], no matter what their diagnosis may be. With cancer specifically, because there are so many great treatment options available to people, it is going to look different for different people. What I try to hold most for all dying [patients], whether it is cancer or another disease that will eventually be responsible for someone's life ending, is to give them the space to know what is ahead, and then know the options available for those decisions, so that they can improve their quality of life for however long that lifespan is going to be.

When it comes to symptom burden and the way that pain arrives in the body, we know that there are pharmacological and medical interventions that can be put in place to help someone mitigate, mediate, or palliate that pain. There are clinical techniques that can be put to use when someone is experiencing pain. However, there are times when people have breakthrough pain, or when the pain is not physical but emotional or spiritual and more in the existential realm. Part of the support I can provide for people with increased symptom burden is techniques that are not in the medical realm: things like a body scan, which is a body-focused mindfulness practice, or a guided visualization. It is a healthy distraction method to take people away from focus on the pain that is ailing them in the moment, and have them focus on something that would balance that out — a time when their body was not in pain, a time when they felt happy rather than anxious.

Doulas exist to hold people however they are in the moment. I am not there to fix death, but I am also not there to tell someone: don't feel anxious, don't be scared, don't feel frustrated or resentful or angry. If those are the emotions arising along your journey, you are completely entitled to them, and I will not tell you to change them, or change them for you. I will sit with you as you experience those emotions, even as you experience bodily pain, and move with you in the way that feels right for you. Often people are wanting to be heard. Not fixed, not helped, not even hugged sometimes –– just witnessed in what they are going through as an authentic experience.

What are some of the biggest unmet needs you encounter that someone on the clinical team, by no fault of their own, might not have the time or training to address?

I would never step into the clinical role, but I encourage the [patients] I work with to go to their clinicians and ask a lot of questions. Something that comes up frequently in my work is helping people to understand what we can generally know are the signs, symptoms, and experiences of the body in the active dying phase. People will want to know what they want to know. The full scope of information might be appropriate for some [patients], and others might decide they don't want to know anything that might be coming. They just want to experience it in the moment. Wherever they are, whatever feels like the right amount and intensity of information, however they want that titrated, I will meet them in that need.

This is something that does not often get discussed until it becomes very close on the horizon, but there are people who want to know what this will feel like, so that they can plan for their environment around that stage of dying. In the active dying phase, I can tell someone there will be changes in your breathing, there may be changes in your blood pressure, in your heart rate, in the appearance of your skin, in your consciousness, in the amount of time you are awake vs asleep. I can explain and contextualize the sounds they might hear their loved one making as they are breathing, losing tone and the ability to swallow, and collecting what are called terminal secretions in the back of the throat. It can feel reassuring to people to simply have that information, and then they can use it as a framework to think through: if I reach the stage where I am no longer conscious and able to speak for myself, what would I like my circle of care to know about me and what I want, so that they can advocate for me when I am no longer able to communicate in the usual way?

The other thing that comes up frequently is that people have a lot more agency than they give themselves credit for. When it comes to medical decision-making, the right choice for an individual may not match the advice of their provider, the preferences of their family, or even what they would have wanted for themselves 15 years ago. An example I like to give when I am in an educator role for other end-of-life doulas is pain medication for people who are sober. A person who is sober for 25 years may not want to take an opioid medication at end of life because it violates a piece of their identity. Just reinforcing for them that it is not my opinion about whether they should or should not take any kind of medication, but that they have the choice for themselves. That is a piece that doulas hold very well. We hold someone's autonomy in their identity: your values, your traditions, whether those are of your heritage, your community, your faith tradition, your family tradition, or your individual preferences. That will color how you hold yourself in the dying process and how you help other people to continue to honor that all the way through.

End of life is a high-emotion, high-intensity experience for many people, and when we are in an environment of overwhelm and exhaustion for everybody involved, it can be very helpful to have documented what someone has clearly identified when they are in a decisional space, so that we can give people a resource. To use a simple example: suppose the dying person has said he really does not want lavender essential oil anywhere in the room when he is dying because he finds it irritating. When he loses the ability to speak and a well-meaning relative comes in with a lavender essential oil diffuser, it can be known to that person that [the dying person] does not prefer this.

You’re certified through INELDA and are also considered proficient by NEDA. What does the training and credentialing landscape look like for death doulas?

I am also now an educator for INELDA, the International End of Life Doula Association. In the interest of full transparency, I am a trainer for that organization. Our training is different from, say, Going with Grace, or the University of Vermont, or any other program. They are all unique to one another. We hold the same foundation in the sense of wanting people to be educated about the physiological aspects of death and dying, supporting people in their autonomous decision-making, being able to help people plan for their last moments, and working with the people who care for them in all of those realms, as well as things like remembrance projects, making meaning, and holding supportive space for people to process what they are experiencing, whether that is a dying person hitting some milestones in their trajectory, or the circle of care as they move through anticipatory grief and then the acute grief that comes after death. We train under the same pillars of education, but the delivery may be different.

There is no national certifying body for end-of-life doula work. There is no license required. Each organization is free to develop and present and deliver their unique training program as they choose, and everyone is able to decide for themselves whether that is a program that resonates with them from a values place, an educational place, or even a learning style standpoint. Some organizations train online only. Some train online as well as in person. Some are retreat-style. Some include a continuation and community-based support system or a mentorship. It is all a bit different.

Certification is optional. Each organization might offer a certification that is meaningful to that organization. In some cases that means achieving certification by taking a written exam; in other cases, you may have to supply case studies from fieldwork; in other places, it might be a combination of those things. With INELDA specifically, our certification program has changed enormously in its last iteration. It is now a year-long commitment in a cohort-style environment that is continuing education and professional development, really refining the way that you deliver this work broadly in the world, rather than simply giving somebody a stamp and saying we have reviewed your cases and vouch for you. Even the word "certification," is quite elastic, and it is up to the individual to decide if it is the right path for them.

There is movement within the broader doula community around wanting to see end-of-life doula work incorporated into the Medicare system, in the way that birth doulas are now being reimbursed through insurance. I see pros and cons to that kind of incorporation. I can see the benefits in increasing access for people who may not be able to privately pay for doula services at end of life. But I can also see Medicare and government systems coming in and constraining the role of the doula to only certain elements they find palatable and reimbursable. I can see ways where it is a benefit and ways where it might be a detriment to the practitioner and to the people we serve, but I want to offer that the conversation is happening in the broader doula community.

Part 2 of this conversation covers patient anecdotes from the oncology setting, the current state of research on doula outcomes, and how clinicians can begin building relationships with end-of-life doulas in their communities.