Dr. Marlaine Figueroa Gray is a medical anthropologist at Kaiser Permanente Washington Health Research Institute with a passion for eliciting illness narratives and health-care experiences from patients, family members, and medical professionals. She has extensive experience designing qualitative studies and analyzing qualitative data. Her previous work includes examining education policy in sub-Saharan Africa and developing curricula for health education.
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I recently wrote about the need for a new language around loss and death:
Nearly everyone will face a point in their lives where medicine cannot provide a solution or sustain life. Our cultural and medical narratives of illness often do not have adequate language for these moments. When therapies don’t work, people are described as “failing” their treatment. And facing one’s imminent death is often characterized as “giving up the fight.”
The problem of dying in a culture that sees death as a failure in Western biomedical care, death is often regarded as a failure of medicine to preserve life — though we know death is a natural process. In health research, mortality is viewed as the worst outcome, though we know for some patients there are outcomes they consider worse than death. The framing of death as a failure and its associated language is destructive both to those who practice medicine, and to those who receive medical care.
When physicians view patient death as a medical failure, they detach from the embodied experience of living and dying. This detachment can lead to doctors feeling shame about their emotions of grief, despair, and sadness, and hiding rather than processing these feelings. It may also mean that they avoid talking with patients about their approaching death, so patients do not have the opportunity to psychologically and spiritually prepare for their dying, or receive timely palliative care to support pain and other distressing symptoms.
For providers — doctors and nurses and other medical professionals who take care of patients — death is something their medical training prepares them to fight against. In fact, many modern doctors have limited experience with natural death, a sharp contrast to medical training and experience even 50 years ago when doctors attended to dying patients at the bedside.
Structural processes also preclude supporting a person facing terminal illness with non-aggressive care. In an average US hospital, it’s easier to order an intensive intervention such as surgery for someone facing serious illness than to support a patient who would prefer to leave the hospital and receive comfort care at home. That’s because hospitals usually have surgeons readily available, but not enough palliative care providers to offer non-invasive support.
People facing serious illness in America have been socialized to see death as something to fight against. Scholars have pointed out for some time that our language for death often relies on military metaphors: waging a war against cancer, fighting to stay alive, etc. To fulfill the role of a good patient, or a good father or good spouse, is to fight to live, to fight for more time. That can mean undergoing painful or intensive medical procedures such as chemotherapy, even when they no longer provide benefits, or negatively impact the quality of one’s life.
How we talk about death and dying
Death itself is sometimes spoken of as an end, as in “the end of life.” That can mean the end of biological function, but we have opportunities for connections that remain beyond death. We have social relationships and connections that will continue, and some people with serious illnesses speak of legacy goals that are important to them.
The process before death can be an opportunity for actively thinking about, planning, and creating a legacy. What’s missing is the vocabulary that describes the dying process as an opportunity for living richly and deeply — a time of life full of psychological and social potential. My research on how people with a serious illness think about their legacy shows that after death, elements of the self remain — how one impacts the way others live, how one is remembered, and what physical objects are associated with those memories.
We already have language that allows clinicians and patients to think of treatment as a battle to survive and extend life. We also need ways to express other ways of thinking — for instance, that palliative care is an active choice to move forward and plan for a future that includes remembrance and legacy. Without alternative language to speak about death, the dying process may feel inherently bleak, painful, and sad. In fact, it can instead be an opportunity for relationship, creativity, and connection.
A new vocabulary for dying
Writing and talking about how to plan for death is not new. In the Middle Ages, the Ars Moriendi, or the Art of Dying, provided instructions on how to die a good death. The guidance was mainly concerned with preparing one’s soul for the Christian afterlife. But it also spoke of the transformative potential of accompaniment through community participation in the dying process. Dying is a social process, and dying well involves dying in relationship with others.
I argue that we need a modern guide to the art of dying that gives us language to ask and understand what matters most to those who are living with serious illness and that recognizes their personhood above their diagnosis.
What goals are meaningful to them? If the goals are related to their legacy, and how others will remember them after their death and be influenced by their interactions, medical care could support that. Examples include reducing the use of toxic therapeutics so that one’s appearance is conserved, or attending to costs, so people can bequeath wealth or assets and pass on important possessions, or managing symptoms to allow travel or building memories with families.
Focusing on these goals may naturally lead to communication that focuses less on medical struggles and more on an individual’s personhood, their social role, and the lasting impact they want to have on others. Speaking about who a person is during their lifetime, and now in their dying process, respects and celebrates them apart from their illness. It brings them back from the isolation that can be imposed by illness and restores them to their social worlds.
What to do now to help change the language of death
How we use language in medical care matters. Reframing how we talk about living with serious illness can impact how we support the dying process. We can do this in everyday conversations.
Palliative care leader Dr. Ira Byock describes the four things people need to say to each other, particularly as a death approaches: “Please forgive me,” “I forgive you,” “Thank you,” and “I love you.” Knowing that people think about their legacy throughout their lives, and especially during serious illness, we might also add: “How will you remember me?” and “How should we remember you?”
Examples from my research show how people talk about remembrance, impact, and legacy. We can understand what our loved one wants to be remembered for, to reinforce our relationship with each other beyond death. People often talk about this explicitly, saying for example, “I will always be your father,” “I will always remember your sense of humor,” or “I will climb our favorite mountain on your birthday.” We can discuss how a life impacts others, for example, “I hope others learn from how I battled addiction.”
Tools to guide conversations about legacy include:
- Dignity therapy: questions to elicit thoughts about legacy such as, “What roles and accomplishments are you proud of?”
- The “Hello Game” to discuss what matters most to you as you approach death and dying.
- Creating remembrance items and writing letters to continue one’s role as a parent, friend, or spouse after death.
A deeper understanding of people’s goals about preserving their personal identity and dignity, how they would like to continue their social roles, and how they hope to impact others — and working on the words to reach this understanding — has great potential. During the dying process, articulating this understanding can help us know what end-of-life interventions are wanted and unwanted, how to preserve relationships through illness and death, and how to remember people after they die. This knowledge and accompanying language can provide a cultural script for grief — helping loved ones know what their person most valued and wanted to be remembered for.
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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
My husband died five weeks ago today. He had been a hospice patient at home for six months, and he and I spoke freely about his anticipated death. We told each other often that we love each other, and spoke about the possibility of an afterlife. I was with him until his last breath. But although all his family and friends knew he was a hospice patient, and that his death was anticipated, almost no one said good-bye or wished him well. The only sad thing about his death was that it was lonely, shared mainly by the two of us. Even the hospice team avoided the conversation, perhaps not sure just what he was open to. I hope we’re moving toward a time when the words are not taboo, and people will wish the dying person well at the end of life.
Here is a link to The Hello Game: https://commonpractice.com/collections/hello-game
Thank you, Dr. Gray, for shedding light on this important topic. Understanding death as a natural process and focusing on the person in a holistic way is something that end-of-life doulas have been practicing for many years. Among many services, EOL Doulas support those at the end of life to explore their goals, what meaning their life has given them and how they would like to be remembered. We find that by having these deep conversations and doing this legacy work, people often feel a sense of completeness and approach their death with a sense of peace. May this article and the work of like-minded others bring about a more humanistic way of caring for the dying throughout all fields of health.
Thank you. Timely and important reminder for me. “How do you want to be remembered?”
I am a member of a small discussion group that meets monthly to discuss aging, death and dying. At our meeting just yesterday many of these issues came up and this essay offers a very rich addition to what we were ourselves thinking. I am going to send it around to our small group. Thanks very much to the author and to FEN for sharing it.
I think this is an outstanding way to open up the discussion of the death and dying process. Unfortunately, many people are not prepared to deal with this, whether it’s because of religion or because they fear death or whatever reason. They do have valid arguments but death is still taboo no matter which way you look at it, which is actually rather sad. I have supported medically-assisted suicide as far back as I can remember, and I’ve had friends use this, and I don’t understand what is so important about forcing somebody who is terminal. They’re going to die and they want to die, but everybody around them are dead set against it, using guilt trips on you ranging from you’re going to go to hell, what about this person, what about that person? It’s not about everybody else. It’s about the person that’s dying. I read one article where they had discussed medically-assisted suicide should be part of the medical training, because with life there’s going to be death, and if you’re not going to prepare for it, you’re not going to know how to deal with it when it comes. Why not make a patient comfortable for the death so they’re not in pain and suffering? I don’t understand what the problem is. This is something that needs to be taught to people. Besides the whole argument on that side, there’s also the financial end of this. The medical field is trying to take every dime you have or that they can get from you, when you look at the cost of hospice care and assisted living facilities and rehab centers. It’s absolutely ridiculously outrageous. I’m in a position right now that I’m entering end stage heart failure. I’m going to die and I’m okay with that. I personally would rather skip all the pain and suffering so I have looked into medical-assisted death. I’ve tried to prepare my family and loved ones for this. They understand why I want to do it but they’re just not okay with me actually being able to do it, you know? You’re not murdering a patient if they’re going to die anyways. By assisting a person to die peacefully and to keep their dignity, keep them out of pain, you’re not only going to stop the suffering of the patient, but you’re going to stop the suffering of all the loved ones watching this individual suffer while they’re dying. So if you can put an end to all that suffering, wouldn’t people want that? I have spent at least 37 years as a Paranormal Investigator, and one of the areas that I always focused on was near-death experiences and afterlife communication. In some of the experiences that I’ve had, I know beyond any shadow of doubt your life does not end here. The physical body dies but the consciousness of the soul of the person continues on, and you will see all your loved ones again. If you believe in the afterlife and in heaven, what’s the downside to dying? This is just my opinion.
Medical aid in dying is not “medically-assisted suicide.” See: https://www.thegooddeathsocietyblog.net/2023/05/14/medical-aid-in-dying-is-still-called-assisted-suicide-an-anthropologist-explains-the-problem-with-that/ and https://www.thegooddeathsocietyblog.net/2022/07/24/is-the-word-suicide-appropriate-in-the-end-of-life-context/
Totally agree with all you say here Robert.
Dr. Grays’s article is outstanding and much needed. I think the popularity of most religions is that they authoritatively tell us what happens after we die. Now, for the first time in recorded history, Science is beginning to offer its opinion. Dr. Wilder Penfield, a famous, published neuroscientist and brain surgeon, expressed his pleasure in realizing that our brain differs from our mind because our brain is physical and dies when our body dies, but our mind is energy, and energy can be neither created nor destroyed. The question is, where does our brain’s energy go when we die? We do not know, but we can now, justifiability hope for a continued existence after death. I think that is a wonderful issue to share with a dying loved one or friend, regardless of his or her religious or non-religious belief.
Thank you very much for this inspiring article. I work as a palliative care physician and as a humanistic psychotherapist, and I see that a fundamental part of our mission as palliative care specialists is to change the palliative culture of the healthcare world, not just society, with a more integrative approach to the end of life. And to do this we need to see healthcare professionals as people with their emotional difficulties regarding death. Thank you.