The Problem with American Deathwork and the Concept of a “Good” Death
As a deathworker, I don’t talk about a ‘good death’ with my clients, patients or colleagues. The reasons why might surprise you, or at the very least, might provide you with some food for thought.
As an American deathworker (someone who works professionally with death, dying, grief and loss), we know that death and dying are framed against a complex backdrop here in the United States. Decisions and ideas about death, dying, grief and loss are framed by social justice concerns, race, gender, sexual orientation, politics, legislation, religious beliefs, spiritual beliefs, geography and capitalism. Not to mention past experiences, family dynamics and healthcare access. All of these systems play into how we think about and make decisions around our end-of-life experience. They impact what we see and expect for ourselves. And as deathworkers, our experiences and our own unique backdrop impacts how we help others make decisions about their end-of-life experience.
So what is a ‘good’ death when everyone doesn’t have access to the same options, and when everyone is impacted by any number of these systems in different ways? I believe we are all currently working to establish death as more of a neutral, rather than a thing we can label as ‘good.’ Until everyone has equal access to the same options, trying to discuss a ‘good death’ isn’t the best place to start.
Here are 5 things to consider when talking about a “good” death:
1. You bring a power dynamic with you.
Whether you are a funeral director, a celebrant, a death companion or a healthcare provider, you are part of a power dynamic. You are providing care or services to a person, and they are receiving those services and care. As deathworkers, it’s important to remind ourselves of this dynamic so that we reduce the chance of inadvertently causing harm to others. Imagine you are a healthcare professional following standard procedure. The standard procedure probably works well. But what if you are working with a patient afraid of healthcare in general? How are you ensuring your patient has space to ask questions or express what they really feel? How are you taking steps to identify when someone might not fit so well into the ‘standard procedure’? Put another way, how might you be gatekeeping without realizing it?
What I do About This: Taking a page from chaplaincy, I list out and identify the similarities and differences I share with my clients across things like gender, upbringing, education, race, socioeconomic status, etc. This is part of my intake procedure for myself, and the notes I keep on each person I serve. It helps me identify these overarching patterns and keeps me self-aware. Another thing I do is I don’t overload myself with clients. Now, that is an option I have because I am an independent thanatologist and I realize that many professionals don’t get to choose how large their caseload is.
“Until everyone has equal access to the same options, trying to discuss a ‘good death’ isn’t the best place to start.”
2. Your clients are vulnerable.
When we are in a vulnerable state—whether that be financially, emotionally, socially, spiritually, physically or cognitively—it leaves room for error, misjudgement and abuse of power on the part of the provider. Over my years working with death and dying, I’ve heard many stories from folks who experienced a provider making a well-intentioned decision on behalf of or for a client without realizing that wasn’t exactly what the client wanted or intended.
What I Do About This: I establish overall goals and wishes with a client, and double-check that each choice supports those goals and wishes. (You would be surprised how many deathworkers don’t ever have a discussion about overall goals, wishes and values.)
3. ‘Good’ is relative.
I avoid talking about a “good death” basically ever because it can set the stage for disappointment, pain and anger for not only the dying but also the people connected to the dying person. Here’s what I mean by that, and hear me out:
A ‘good death’ is individual.
What I consider a good death for myself is likely different than what a good death is for another person. And in my experience, you can have one family, and one dying person, and every single person describes what a ‘good death’ would be for the dying person in a different way. That’s because…
A ‘good death’ is cultural, familial, social.
Sometimes what we individually define as a ‘good death’ for ourselves can be at odds with what our family would say is a ‘good death’. Or what our culture might say is a ‘good death.’ The groups we belong to have their own standards and expectations in place, and they can sometimes be at odds with our individual values, wishes and desires.
A ‘good death’ is not a fixed idea.
Sometimes, what a dying person defines as a ‘good death’ at the beginning of the process might look very different than how they define it near the end of the process—after they’ve had some experience with ‘the process.’ Remember—you don’t know what you don’t know. I think this most often has to do with the process of acceptance, and the process of ‘letting go.’ I had a client once focus early on in their dying process about the importance of being at home for their death, under a specific window in their living room. Near the end, none of that was important anymore. They didn’t care so much about where it happened, but more about who it happened with. As their condition worsened, they saw value in being located in a hospice facility where family and loved ones didn’t have to manage any aspect of their medical care, allowing those loved ones to be supported and present to the dying person.
One singular death might be ‘good’ for the deceased but ‘bad’ for the loved ones.
Pretty often, I am contacted by individuals having a difficult time rectifying the experience of losing their loved one. Perhaps they saw their loved one die, and it was experienced by them as a horrible event. But, they also feel their loved one was fine with it. This is often where differences in values show up. I remember one story of a woman who was very socially liberal and a huge environmental steward. She lost her elderly mother to a degenerative condition. Mom felt safer being in a medical facility, while the daughter valued being at home. The daughter pushed the idea of “returning to how we used to do it. How your own Mother and Grandmother did it. They all died at home.” Mom likely had difficult memories from her own Mother and Grandmother dying at home, so for her, being in a hospital (being NOT at home) made her more comfortable. Mom wanted a burial, wanted to be embalmed, wanted a vault, wanted a sealer casket. That’s what she did for her own Mother. The Daughter was very upset at the environmental concerns and made her disapproval known. Mom wanted the same things that she did for her own Mother to happen to her. She didn’t want to break any molds or do anything differently. Sometimes we find a closeness to those we love who are gone in different ways, and sometimes that closeness comes through being buried the same way that they were. So this concept of a ‘good death’—well, it depends on who you are asking about the specific death: the dead person and the survivors might have different experiences of the same death.
Side Note: Close to the time of death is never a good time to educate anyone about the environment, politics, or social concerns—even if you know you are right. Don’t sacrifice someone else’s death for your own personal causes.
What I do About This: The wishes and goals established at the beginning of the process can provide comfort and closure to those left behind at the end of the process. So, based on the example above, I might say to the daughter something like “Your Mother’s death was in alignment with her wishes and goals. What would you like to do to make peace with that for yourself?” Since she was environmentally-minded, I might suggest donating or volunteering time with a local arboretum or ecological non-profit. This might help the daughter make peace with the environmental concerns she had, while supporting the wishes and values of the deceased.
“So this concept of a ‘good death’—well, it depends on who you are asking about the specific death: the dead person and the survivors might have different experiences.”
4. You can’t really plan a death.
Ok first, you can, and people do, right? What I’m saying here is that things don’t always follow the plan you made. When deathworkers establish the entire process around ‘achieving a good death’ it sometimes sets people up for disappointment and feelings of failure. What if things go *almost* to plan? Is it then an *almost* good death? What if NOTHING goes to plan? Then was it a “bad” death?
Let’s consider that what we perceive as a ‘good death’ while we are dying can sometimes drastically change. Because what we want isn’t always what we need. In reality, with deathwork, what we plan for is a future that doesn’t yet exist so when we are in the moment—when we are actually dying in the present moment—we might have a very different opinion or experience (and justifiably so).
Let me explain this in a different way. Have you ever picked out an outfit for a party, been excited about it, and then you get there and you realize this was NOT the outfit to be wearing? And you wish you had worn something different? Maybe it’s because the weather was awful, or because everyone else was dressed differently. I mean, it’s a little like that. You made the best plans you could for what to wear to the party based on how you felt at the time and what you knew….but when the party actually happened and you were actually there, you found it just didn’t work. Now, with death, you don’t typically get a second chance. But with parties? You do get a chance to apply what you learned the next time around.
What I Do About This: This is a big part of discussions with my clients. I talk about how if we try to plan a death down to the minutiae, we might end up getting disappointed or unprepared for when things change. Since my beloved beagle, Ruby, died in June of 2020, I’ve actually used her death story a lot to help me explain this point to my clients. I had a plan A, a plan B, and a plan C prepared for Ruby’s death. Annnnnd of course it happened on a Saturday morning, someone was on last-minute vacation, and essentially everything went sideways. So she had a death I didn’t plan for. But I’m still really happy with how it went because what actually happened—even though it wasn’t planned or expected—was still in alignment with our wishes and goals.
5. It’s all in how you frame wishes and goals.
It’s important to not be too specific and too hung up on any one thing.
Using Ruby, my deceased 16-year-old beagle, as an example, I had a few wishes and goals for her death experience:
I wanted to be there.
I wanted her to be surrounded by things that she loved and that meant something to us.
Quality of life was more important than the quantity of life.
I wanted to be able to be mentally, physically, and spiritually present for her, and not worried about extraneous details that didn’t really matter.
And you know what? Even though we had to euthanize her in the back parking lot behind a veterinary office due to the pandemic….all of these goals were met!
If I had established goals that were like 1) I want her to die at home on the couch or 2. I want her to be next to her favorite tree in the backyard…then I’d likely be disappointed with how things actually happened, right? The tree in the backyard is fixed and permanent and home is fixed and permanent. But if you define ‘home’ as with the people and things you love, then you are setting yourself up with more options.
In summary, I recommend that you stop framing death as good or bad. It’s neither and both. It’s the endpoint of the lifecycle and it requires adaptability moreso than flexibility, it asks for grace.
It reminds me of the issue with cancer and how it is so often framed as a battle. While for some people, warrior language can be empowering and positive, it’s assigning something to a disease that is totally unrelated. Cancer is a disease that functions in a way we expect. It grows and spreads, which is normal for cancer. It is not a battle with a winner and a loser. So this is where the problem crops up when we ‘fail’ to ‘beat’ cancer, we ultimately label ourselves losers. But it’s not a win/lose situation, it’s the body and disease behaving normally.
“I don’t frame death as good or bad. It’s neither and both. It’s the endpoint of the lifecycle and it requires adaptability moreso than flexibility—it asks for grace.”
What Can You Do Right Now?
I want to encourage all of those involved in deathwork, from whatever angle you approach the work, to include a discussion around “What is a good death to you?” with those you work with. Not just the dying person. The dying person’s loved ones, your coworkers….everyone should be a part of this discussion.
I do this in my own work, and I also share examples of how things didn’t go to plan and what that looked and felt like. It’s important to normalize that things shift and change and that our goals and wishes should support the possibility that these things might happen.
I also ask questions like “If I asked your daughter to tell me what YOU wanted for your end-of-life experience, what would she tell me? What about your best friend, what would your best friend tell me YOU wanted?” Asking these kinds of questions can help everyone figure out where conflict and friction might show up, and can help the dying person establish realistic wishes and goals.
So, that’s why I don’t really talk about a “good death” with my clients, or with the public. It’s not actually the goal, and not actually relevant at all. What is relevant and important is making sure that the dying person retains their dignity and selfhood and that those around the dying person are empowered with the tools to support the dying person in a way that is actually supportive.
I don’t speak in terms of a “good” death. We just aren’t there yet. We are not at the point of having just a —death—a “neutral” death. That is tricky. I talk about having “a” death and don’t attach significance to it being “good” or “bad”. You can pre-plan and have all the boxes ticked, but still, it not feel good, or be what others describe as “good”.
All we can do is work to reduce the chance of inadvertently causing harm. We do this through self-awareness, through thinking macro-level (as well as micro-level), and by making sure the way we use language supports the way we act.
Sidenote: This piece is in no way a reference to or about the Order of the Good Death or @thegooddeath. I wrote for the OOGD way back in 2012 about Dremains, you can read that here. Just wanted to note this.
