AI Interviews a Death Doula
I was playing around late this morning with Pi, an interactive AI agent designed to have conversations. Since I had spent the morning posting on social media about the Death Café I will be facilitating in July that is being hosted by Rubicon’s Edge, it was top-of-mind when Pi started our conversation.
What follows below is our organic conversation, edited only lightly to fix my typos from the original text.
Samantha’s Virtual Interview with a Pi, a conversational AI
Pi: Hey there, great to meet you. I’m Pi, your personal AI. What do you like to do in your free time?
SP: I host Death Cafes.
Pi: Death Cafes? That sounds intriguing! I know that a Death Cafe is a group-directed discussion about death, but could you tell me a bit more about what it's like to host one?
SP: It is fascinating to see just how others think about death and dying.
Pi: Wow, that sounds like a really deep and meaningful experience. I can imagine that there's a huge variety in people's perspectives and that it must be both challenging and fascinating to facilitate such a discussion.
SP: There are people who fear death, and on the opposite end of the spectrum, others who embrace it - not in a suicidal way but knowing that it is a necessary part of life.
Pi: That's a very insightful observation. It seems like the acceptance of death as a natural part of life can be quite freeing. Has hosting these discussions changed the way you think about death?
SP: Not really, but it is nice to be able to have a discussion around death that is not seen as morbid or weird.
Pi: I can imagine that's one of the valuable things about a Death Cafe - it creates a space where people can talk openly and honestly about something that's often considered taboo. Is it usually a mix of people, or do you find that attendees tend to share a similar perspective or interest in the topic?
SP: There is usually a healthy mix of both perspective and background, although the age of the participants does tend to skew to the ends of the spectrum.
Pi: That makes sense, since older people tend to be more comfortable with thinking about death as a natural part of life, and younger people may be more open to exploring new ideas and perspectives. Do you host the Death Cafes in person or online?
SP: My Death Cafes are hosted in person at our local library on the 2nd Sunday of every month.
Pi: That's wonderful that your library is willing to provide a space for this kind of discussion. It really shows how important it is to create a safe space for people to explore these topics. How did you get started hosting Death Cafes?
SP: I am an end-of-life doula.
Pi: Wow, what an important and special job! An end-of-life doula provides compassionate, non-medical support to people who are facing the end of their lives, and their families. Is that something you do in addition to hosting Death Cafes, or is that primarily how you serve in that role?
SP: You could see my hosting of Death Cafes as a community service. I don't advertise my doula business there, but I do briefly mention it in my personal introduction.
Pi: That makes sense. I imagine it must be very rewarding to be able to provide this kind of service to your community. Has being an end-of-life doula changed the way you think about your own life and death?
SP: It has made my approach to death much more sacred and has provided a depth of meaning that I had not previously assigned to the concept of my eventual death.
Pi: That's such a beautiful perspective, and it sounds like it has given you a deeper sense of connection to the meaning and purpose of your own life as well. Has that sense of connection also impacted the way you approach your work as a doula?
SP: Absolutely. How could it not?
Pi: That's such a powerful realization, and I'm sure it has a big impact on the way you are able to serve your clients. I imagine that some people might find it difficult to talk about death or be in the presence of someone who is dying. Does that ever happen with your clients or their families?
SP: It is natural to not want to acknowledge death, though I find my clients are more willing to discuss it than their families and loved ones. Talking about death makes it a reality in many people's minds, even though when asked directly they can acknowledge that the reality of death is there whether or not they want to face it.
Pi: That's a really good point. So even though people may intellectually understand that death is inevitable, they may still have an emotional resistance to facing it directly. Does that resistance ever cause any challenges for you in your work?
SP: Sometimes, but it really informs the work I do to assist my clients and their families through their journey toward death.
Pi: It sounds like you are helping to break down some of the taboos and fears around death and create space for people to approach it in a more open and accepting way. That's such an important contribution to making the end-of-life experience more meaningful and peaceful. How do you help people to let go of their fear of death?
SP: I cannot make anyone change, but by my example in facing death directly, I hope to allow others to release some of their fears.
Pi: That's such an insightful and humble perspective. By being a model of acceptance and peace in the face of death, you're giving people permission to release some of the anxiety and fear that they may be holding onto. It seems like you're not only helping them in the moment, but also giving them a gift that they can carry forward into their future lives. That's incredibly powerful. How did you become interested in working with people who are dying?
SP: I have been working around the edges of death for much of my professional life. The last 27 years I have been a paralegal in a firm that specializes in Estate Planning and Estate Administration. So I’ve been discussing planning for death and assisting clients families after death for a long time.
Estate Planning involves creating Wills, Living Trusts, and other end of life legal documents such as Durable Powers of Attorney for financial matters and for health care, and Advanced Health Care Directives. Estate Administration involves working with the families of those who dies by settling their estates with probates or trust administrations according to the terms of their Wills or Living Trusts, or when those documents are not place by other statutory methods, often involving intestate probates or small estate administrations.
Then in late 2021 I received a cancer diagnosis and spent most of 2022 going through Stage III breast cancer treatment. I underwent chemotherapy from January through May, had a double mastectomy (radical on the right side) in late June, and went through daily radiation therapy from August through September.
Becoming an End-of-Life Doula was one of those sudden decisions that in retrospect makes perfect sense, and you realize your life had been leading you in that direction all along. Let’s just say I discovered my life’s purpose.
Pi: Wow, that's an incredible journey. Having your own brush with mortality must have given you a very different perspective on your life and your work, and I imagine it also gave you a new understanding of what it's like for your clients who are facing death. How has your experience with cancer impacted your work as a doula?
SP: It has certainly given me a close perspective of the kinds of decisions my clients must make, as well as an intimate knowledge of the physical endurance it takes to undergo many treatment modalities.
Pi: That's really interesting. It sounds like your experience with cancer has given you a level of empathy and understanding that can't be learned through books or workshops. Has it also changed the way you view your own mortality?
SP: It has coalesced my thoughts about death and what it truly means to undergo aggressive treatment options that might only increase lifespan, while having a strong potential of decreasing the ability to enjoy the time we have left.
I was lucky in that my prognosis is for decades rather than weeks or months, but there is a balance that only the dying patient can make - to juggle total time alive against time able to enjoy and appreciate life.
Pi: That's a profound insight. It seems like there's a real tension between quantity of life and quality of life, and each person needs to find their own way to navigate that tension. It sounds like you have a deep respect for the autonomy and individuality of each person's experience with death. Do you think there is an "ideal" way to die?
SP: Absolutely, and that ideal can only defined by each person as they face death.
Unfortunately, not many avail themselves of the opportunity of defining that ideal for themselves, and end up defaulting to whatever their medical team advises, or submit the wishes of their loved ones to extend their life, and never ask the hard questions of what that extra time alive might actually look like. Medical treatment does not guarantee comfort or the ability to engage with others in a meaningful way.
There are patients for whom every treatment possible is the absolutely correct answer, and their ideal death is to go down fighting to the last moment. But there are also those who, when presented with the information of what that treatment actually looks like in quality of life terms, decide that palliative care to make their final days more endurable is their ideal way to die.
Pi: That's such a good point. It's not just about facing death in general, but really understanding what it means for each person as an individual, and then being able to make decisions that reflect that understanding. Do you think there's anything that holds people back from having those conversations about their own death and ideal way to die?
SP: The biggest block I see is health care providers lack of willingness (or ability) to discuss the realities of death.
Pi: That's really unfortunate. The medical system is supposed to be there to support and care for patients, and yet it seems like it can fall short when it comes to helping people come to terms with their own mortality. Do you think that's due to the way the system is structured, or is it a cultural issue with how we view death and dying in our society?
SP: Both. You have to remember that health care providers have it ingrained in their souls that their job is to heal. And for most of their patients that is absolutely the goal. They want their doctor to fix what is wrong (or at least mitigate the symptoms of chronic diseases) so they can continue their lives. However, eventually, there is no true fix available. Whether it is an incurable disease like ALS or metastatic cancer, or simply failure to thrive in extreme old age, eventually every patient comes to death. Their health care team should be able to support them in facing this reality.
And we have been taught by our culture that death and dying is a taboo topic. You are much more likely to read an article on new cancer cures, or that multi-billionaire who is funding longevity research than you are to hear about what it means to die well.
Pi: That's such a good point - that healing and caregiving can look very different depending on the patient's situation. It is a real challenge for health care providers to switch from a "healing" mindset to a "supportive" mindset when the disease is no longer curable. Do you think the rise of palliative care and hospice care is helping to shift the cultural conversation around death and dying?
SP: Palliative and hospice care is a blessing to the patient, but in some ways the palliative and hospice modalities just kick the can down the road for more traditional health care practitioners, so they never have to deal directly with the reality of death and learning the skills to assist their patients. In fact, many practitioners hesitate even referring their patients to palliative care or hospice.
Pi: That's such an interesting point - that the existence of palliative and hospice care may actually be allowing traditional health care providers to avoid the more difficult conversations about mortality. It's a bit like putting a bandage on a deeper wound. What do you think it would take to change that culture? Is it a matter of education and training, or is it something that goes deeper into our cultural values?
SP: There is no simple answer. There needs to be more time spent in medical training around death and dying, and how to assist patients on that journey. Unfortunately, I believe that the training models will never change until our culture insists on treating dying with the same care and support as illness receives, or event the expectation that a patient is entitled to holistic wellness plan that supports a healthy life. Finally, until health insurance is mandated to pay for support through death (in a similar way that they are now required to pay for reconstructive surgery for cancer patients - at the patient’s absolute discretion) we will never see death care as an accepted part of health care.
Pi: Wow, that's such a holistic view of the issue. It's not just about medical education, but also about our cultural values around death and dying, and about the financial incentives that are currently in place. It's so interesting to think about how all these different factors influence how we approach the end of life. Do you see any progress being made in changing our cultural attitudes around death?
SP: Yes, certainly. That is one of the reasons I host Death Cafes.
Pi: I love that you're creating space for these kinds of conversations to happen! What do you see as some of the benefits of a Death Cafe? Is it mostly about allowing people to talk about their feelings and thoughts around death, or does it have broader benefits as well?
SP: Here we go, back to our original discussion. This is the perfect example of how to change society and its expectations around death and dying.
Pi: Haha, you're right, we've come full circle. It's amazing how interconnected everything is - education, culture, finance, health care, and how they all influence each other. It sounds like Death Cafes are creating space for people to learn and talk about these issues in a way that can have a ripple effect on our society.
When I turned the conversation back to Pi, and asked what they did, this was their reply:
“I am a conversational AI, designed to engage in meaningful, authentic, and empathetic conversations with humans like you. My ultimate goal is to help people learn and grow by sharing knowledge and perspectives, asking questions, and facilitating dialogue.
But, in a nutshell, I’m just here to chat!”
