I want us to sit down and have a little conversation about death. I don’t think I have told you clearly yet why I am a death worker (I also use the term death doula).
I simultaneously take this opportunity to write a death doula manifesto for myself.
In early spring of 2019 I was in Mumbai, India witnessing, caring for my dying grandmother. I mainly went to accompany my mother on the trip and be on the sidelines for what I felt was a moment I should be respectfully outside to. I grew up feeling very close to my grandmother but also distant from my Indian family, as a first-generation Indian-American daughter of immigrants. I thought I would be kindly tolerated in the sacred death space of the beloved dying matriarch of my family.
Instead I was quickly given tasks because people were overwhelmed. In death and dying, those who show up become the holders of the sacred space. This is the 1st thing I want to tell you: You simply have to show up, put your shit aside and do the work needed for the dying (and the living). That is essentially all it takes to support your loved ones in death. So the words “simply” and “all” do not mean that doing this will always be easy, but it may make clearer what the necessary work is.
I oiled and massaged her legs to keep the blood moving. I helped change her undergarments when they were soiled. I watched. I sat with my aunts and listened to them. We watched shows together at night. I sat awkwardly a lot just being there witnessing the huge efforts of my family. I was let in. My small efforts over two weeks (which was all the time I could take to get away) were seen. My grandmother died shortly after I left. I listened to my mom tell me all the details. The elders came and showed us what to do. Neighbors shared their own family’s death stories. That is how we found our way.
The second thing I want to tell you: Community is formed in the learning of the death things. You do not have to know all the things. In the act of doing, we transform, awaken, traverse, listen, learn we were always capable.
We returned to Brooklyn to my father who was suddenly unwell. He had headaches, seemed confused and tired, his eyes hurt, he was not himself. The day my mother found him collapsed on the front steps of our Brooklyn home, my sister, mother and I took him to the ER of NYU hospital. My father would remain in the hospital for over a month. It was in the hospital that we were told that he had glioblastoma, a fast growing and fatal brain tumor. The day after we brought him to the ER for headaches and being tired, my dad learned he was going to die. A week after he was told he would die, he had massive brain surgery that was supposed to remove 70% of the tumor but ended up getting only 30% and left my father’s body and spirit a wreck. He could no longer walk, sit on a toilet, or speak easily. He had to be fed from a tube. He was hooked up to a ventilator when fluid entered his lungs and his oxygen levels dipped. He was completely tethered to his bed.
The brain tumor would have killed him eventually, but we all watched as his body was destroyed in a mostly failed/mostly pointless surgery done on a 77-year old man. He walked into the ER. After weeks in the hospital, came a 3-day window where he regained the ability to breathe on his own, we managed to get him out of the hospital in an ambulance to bring him back home. He was wheeled to the back studio on a hospital bed which he never left other than the wheelchair we lifted him into. But he was home. He died a month later early Tuesday morning in a quiet windowed room surrounded by his wife and two daughters.
What I want to tell you (3-6):
As soon as you go to the hospital and they mention fatal or serious disease, you can ask for palliative care to be brought into the process. Your surgeon or doctor may not mention palliative care at all. I asked for palliative care to be brought into the hospital team attending my father’s death, after the brain surgery. I wish someone had brought them in at the very start.
Palliative care is explained here: but briefly it’s a team of doctors, social workers and other counselors who focus on the patient’s quality of life, goals, comfort, pain relief. It is about enabling the well-being of patients, well-being is about the reasons one wishes to be alive. Palliative care is good but really all doctors should be trained in this type of care. (Really just citing Atul Gawande’s excellent book Being Mortal here)
You can also at this point bring in a death worker in addition to palliative care or instead of palliative care if there is no such care in the medical setting you find yourself in. (Not every hospital has a palliative care unit).
Hospitals, even non-profits, are businesses functioning within capitalism. They profit. Brain surgeons are paid per brain surgery, even at NYU, a non-profit teaching hospital. Don’t be afraid to ask uncomfortable questions.
You have the right to leave the hospital and go home and sit with the news that you or someone you love is dying. You do not have to make any decisions in a hospital setting about end-of-life care, unless leaving the hospital for a few days would dramatically affect the life of the dying person. Even in that case, think about calling other surgeons or doctors for second and third opinions. Call friends, call end of life practitioners, call religious clergy people, call the person who you haven’t talked to in 10 years but suddenly realize you want to ask them how their parent died, talk to as many people as possible. Even though you are in shock. Make a social media post if that’s all you can manage, see who comes through. How we die is not simply a medical question. It’s one of the biggest questions.
Start having conversations now with your close family and friends about death. How you all would want to die. Talk about what you think would be hard for others to wrap up about your affairs if you died. See if you can make those things easier now as a way of caring for others. Hire someone if you feel a neutral and trained 3rd party guiding these conversations would help.
From Being Mortal by Atul Gawande:
Modern scientific capability has profoundly altered the course of human life. People live longer and better than at any other time in history. But scientific advances have turned the processes of aging and dying into medical experiences, matters to be managed by health care professionals. And we in the medical world have proved alarmingly unprepared for it.
This reality has been largely hidden, as the final phases of life become less familiar to people. As recently as 1945, most deaths occurred in the home. By the 1980s, just 17 percent did. Those who somehow did die at home likely died too suddenly to make it to the hospital — say, from a massive heart attack, stroke, or violent injury — or were too isolated to get somewhere that could provide help. Across not just the United States but also the entire industrialized world, the experience of advanced aging and death has shifted to hospitals and nursing homes.
We should not need birth doulas, death doulas, midwifery or any of it. But we do, because the systems are not appropriately trained to treat us with the full humanity we deeply desire. Thing #7 I am telling you: Do not question for an instant asking for help. Do not let the system’s mockery of alternative ways of thinking affect the possibility that people are out here trying to help you. That not all knowledge comes from university settings. You get to decide for yourself if something feels right, you get to explore more for yourself in death than what is simply offered to you in a hospital.
Also for the death doulas out there thing #8 is for you : It is our responsibility to figure out how to provide these offerings to as many different communities of people as possible. If all our doula clients are well-off financially, we have failed. If most death doulas are white, we have failed. We cannot as healers, replicate the version of society presented to us by the current healthcare systems, capitalism, and white supremacy. If we do this, we run the risk of one day simply replicating the harm. We must learn how to do this work in community outside of simply how we get paid. Also we should absolutely be paid for this work. Maybe that means we come together to create collectives that serve communities and better support each other in that work. Perhaps it means recruiting death workers from the communities we seek to serve, instead of serving communities we are not from (and may not be best able to serve). Maybe it means we ask for grant money. Maybe it means we focus large portions of our time on community education and outreach. Maybe it means the work within our doula communities looks the same as the work of dismantling in any other place in society.
I think a lot about what the experience with my father and family could have been like if I had the support I didn’t know I needed. I think about what kind of time we could have had together. How many extra days my children could have had sitting on his lap. The days and nights my parents could have held each other in their own bed. How we could have filled his remaining days driving him places all over the country to see things he had never seen. How he could have possibly gotten on a plane to go to India and put his head on his brother’s chest and wept. How if we had had someone who simply led us through deep breaths, perhaps for days, weeks even, at the start of the diagnosis, that the concept of time, whatever we were rushing to save or do or fight, perhaps it would have disappeared. Maybe it all would have disappeared to simply become the time we had together until we ran out of it. We needed someone to look at us in that hospital room and take us a step back, and then another big step back, until we were looking at the hospital, the city of New York, the country, the oceans, the whole planet, all the planets and moons, the cycle of everything. So we could understand we were still part of something. We needed someone to simply say that what was happening was actually okay. It could be okay to let it happen. That we would be okay. Perhaps we would have made the same choices anyway. But they would have been choices we made. When dying is not openly spoken about as an option in fatal diagnoses, how is it that people can make choices?
The last thing I want to tell you: We are okay. We were meant to die and support our loved ones in death and to do all the living of life within and in the wake of that dying. Grief is also a life force.
There’s so much i would like to share with you in response to this but for now … wow and a heartfelt thank you !
I’m too overwhelmed by how deeply this resonated with me, on so many levels, to be articulate. I have been contemplating death, what it means and why it’s such a taboo, heavily for the past several years. My sister died suddenly in 2009 as did the very young child of a friend. Then in 2016, my friend and business partner was diagnosed with stage 4 colon cancer at the age of 40 and died 4 months later. I also lost a friend to an overdose that same year. Lastly, my father died on 8/23 after living with dementia for several years.
I only list them because they were all so profoundly different. Each death experience, the ones who died suddenly (sister and friend who overdosed) didn’t need to make choices. The others who were diagnosed with illnesses (father, child, friend with colon cancer) weren’t offered alternatives that served their humanity. Why are loved ones so afraid to ask, or do we just feel we need to “trust the experts”. I learned a lot from my sister who actually did drop everything in her life and demand choices for my father. She never took the persistent tales of “this is all we have” and “but this is how everyone does it” as the path. She moved plastic-covered furniture out of his room in the memory care unit and replaced it with soft, comfortable furniture. She planted a bird feeder outside his window. She “kidnapped” him and drove him to the lake where he immediately removed his shirt and shoes so he could feel the wind on his skin. She wasn’t afraid, and my father died lying next to her, her arms wrapped around him.
But the part of your manifesto that speaks to grief, this I feel so deeply. Grief IS a life force. I have embraced it. Are there grief doulas? Because in the same way that people are too afraid to speak about death, they are also too afraid to really grieve. It would be really great if we could drop everything and help each other drive too.