I have spoken before about how I define the Good Death, which for me is having had the important conversations with my family and close friends, working to resolve any outlying conflicts, or forgiving those I need to forgive/ask for forgiveness from folks I have hurt. It also means that I have shared my wishes for my end of life experience and I have heard commentary and opinions from those I care about most. As of my recent hospitalization, I also had the important conversation with the doctors caring for me at the hospital. That said, my documents are on file in my chart, so I feel okay about things there they stand today.
What about tomorrow? Will I have the same thoughts and wishes? The more I read and learn from the literature and commentary from folks considering the same decisions, the more I am able to hone in on precisely what it is that I want. Here is a quote from Quora.com. Not exactly what I would consider expert advice; more like a frame of mind expressed which is close to mine. The quote: “I had a DNR. I didn’t have to explain it to anyone. Why didn’t I want to live? That’s not the Correct Question…I didn’t want to languish between Life and Death, that’s why I had the DNR.” Quora.com. I was careful in my last podcast to refrain from revealing my DNR/no DNR choice, and while I still wish to keep that my personal and private decision, this idea of languishing between life and death, consuming resources better reserved for someone younger, or burdening my family with lost time and salary, multiple trips to home and hospital, time away from their personal lives, and the sheer work it is to care for me when I am incapable of caring for myself, is one I reject strongly. The more I consider dying at home, I begin to wonder if that really is the best option. I cared for my parents and my in-laws and other family members who could not care for themselves. It was a lot of work: not just in completing tasks but also the heart work, the emotional toil, and the time involved both in providing direct care as well as the brain work of worry, concern, anxiety, sadness, grief, and uncertainty of the days that lay ahead.
It is easier for me to sit behind my microphone or at my computer and say or write these things. It is another issue completely to actually live them out. If you’ve had to care for someone who is dependent, you know the sacrifice. It seems harder to care for an adult than when raising a child in, my opinion. The adult who is incapable of self-care is still an adult. Dignity is a big word in The Good Death. I talk about my mom frequently in my blogs and podcasts, and I believe it is because she was the person who taught me the most about end-of-life. Of course I did not know that at the time, and I would like to think that if I had, things would have been different during her last years. Three years before my mom died she suffered a minor stroke and while in the hospital she suffered a major heart attack—in my arms. I did not know she was dying. I just saw that she was unconscious and that I needed to keep stroking her face with the wet washcloth, speaking to her, and holding her upright. I was absolutely clueless about what I had been doing, and it wasn’t until the nurses, who I hadn’t realized were no longer in the room until after they returned, told me what had happened. I am not saying I saved my mom’s life. That is not the point of this story. It is to say that the responsibility I felt was tremendous, and so when she was discharged from the hospital, unable to drive, and living alone, I brought her to live with my husband and kids. That is where her dignity was taken from her. I didn’t have time to sit, talk, or visit with her. Her stories and questions were an imposition to me. I continued to insist she was unable to live on her own let alone drive a car, and that she would have to be cleared by her cardiologist before any changes could be made. Her home was 2 hours away from my home. None of her things were with her in my home. My work took precedence over her. My kids took precedence over her. My space was not her space, and I didn’t see it. Several weeks after she came to live with us, she came to me and told me that if she was unable to return to her own home, she would surely die. Talk about a wake-up call! We made sure to address her driving ability and solitary living arrangements with the cardiologist. My mom went on to live and actually become healthier than she had ever been in that time after returning to her home. It was so wonderful to see her thriving. She spoke out and I responded. Thankfully. She told me God had stuff for her to do on Earth, and He had given her three more years, which she lived out happily, in her own space. I still hadn’t truly learned how to have better relationships, but letting go of my control over my mom helped us all.
Why do I bring this up about in a discussion of The Good Death? Because my mom stated her wishes and I responded. I gave up control. I released myself from the work of caring for a woman who was capable once again of caring for herself. I was not capable of truly caring for her. I see that now. Dignity.
What do Professionals Say?
The definition of The Good Death according to Caitlyn Doughty, founder of the Order of the Good Death and a participant in the Death Positive movement, is this: “Knowing what you want at the end of life and having the discussions and conversations with those you love, your providers, and the designated decision makers” is The Good Death. I agree. I don’t agree with everything Ms. Doughty states on her web page, but I respect her opinions.
Dilip Jeste, M.D., is an associate dean for healthy aging and senior care at UC San Diego School of Medicine. “Death is obviously a controversial topic. People don’t like to talk about it in detail, but we should. It’s important to speak honestly and transparently about what kind of death each of us would prefer.” “Ultimately, existential and other psychosocial concerns may be prevalent among patients, and this serves as a reminder that we must ask about all facets of care that are essential at the end of life.” The article continues with this: “The bottom line, said Jeste, is ‘ask the patient. Usually, patients know what they want or need and there is relief in talking about it. It gives them a sense of control…You can make it possible to have a good death by talking about it sometime before’.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4828197
The article linked above includes 11 core themes of good death: preferences for a specific dying process, pain-free status, religiosity/spiritualty, emotional well-being, life completion, treatment preferences, dignity, family, quality of life, relationship with healthcare provider, and other. The top three themes across patients, family, and providers, were preferences for dying process (94% of reports), pain-free status (81%), and emotional well-being (64%). “Dialogues for each individual must occur to ensure a good death from the most critical viewpoint—the patient’s.” This quote was also included in the article: “The truth is, once you learn how to die, you learn how to live.” —Mitch Albom, Tuesdays with Morrie (Albom M. Tuesdays with Morrie. New York, NY: Bantam Doubleday Dell; 1997).
Let’s break Down the 11 Elements
Let’s look at the top three: 1. Preferences for a specific dying process. I can attest this was foremost on my mind while in the hospital. I have read about the dying process and watched people experiencing it. Each one was different from the other. The 11 elements were present in each, whether I realized it at the time or not. Much of the work of dying–these elements–were experienced without my knowledge or even sense that they were being considered by the people I watched. A lot was said, however, about preference to die at home or in hospital, to be left alone or surrounded by family, how many or what types of procedures were desired, etc.
2. Pain-free status. Yeah buddy, that’s a biggie. I may have a high pain tolerance, but pain is not fun. Severe pain is definitely not fun. I know how pain can change a personality, lead to depression, and many other unpleasant emotions. Thankfully, both in hospital and in home on Hospice or palliative care, pain is mitigated as much as possible. It may not be removed and suffering may still occur, but you can see why this would be a primary topic of discussion.
3. Emotional wellbeing. I don’t know where to begin on this topic, but I saw anguish and despair on a dying person’s face, and I know that it was not wellbeing. I watched a couple of folks in the last days simply asleep, or in the state of coma that tends to precede death, and I could see peace. I decided that is what will be important to me.
The remaining 8, well 7, since the last topic was Other, are also important enough to have been included in the referenced article.
-Religiosity/spiritualty is very important for some and not important at all for others.
-Life completion: I think of this as a review one’s life accomplishments, whether goals had been achieved or, you know, that bucket list that many carry.
-Treatment preferences: I know I refused a lot of medications that the doctor had ordered, but some I accepted. I want to have that choice. The nurses explained the medication’s purpose and honored my choice.
-Dignity: Google’s definition is this—”the state or quality of being worthy of honor or respect”.
Yes, please.
-Family: I want my husband and our kids around. Right now. While I’m healthy and able to enjoy their company. I absolutely would want them with me at my end of life, but I understand that may not be possible, so I make sure to tell them often what I think of them, how much I love them, and that I respect the choices they make in their personal lives, just in case they can’t or don’t wish to be present when I die.
-Quality of life: quality of life is so subjective. A friend of mine wants me and her children to make sure she has access of plenty of water because she does not like being thirsty. You may chuckle, but to her this is of utmost importance and I would say would contribute to her sense of dignity. Leaving her thirsty would not be respectful. There are so may contributors to quality of life I can’t even begin to list them here, but if you have any you wish to share, I welcome all contributions. Maybe you will share one I hadn’t thought of before and I just may add it to my list.
-Relationship with healthcare provider. This one was kind of strange to me until I read more articles which mentioned that important relationship. It makes sense when I think about it, especially in the face of a long-term illness, where trust has been developed with a provider. This trusted professional can help make decisions, explore treatment options, and weigh in on the bigger decisions. Okay. That was a lot. Let’s wrap up for now and we will come back to this idea of The Good Death. I hope you are finding this information helpful, and the stories I include as well. They have helped me learn, even years after the events, but I’ll take learning and growth from when and where it comes. That’s actually a nugget I just coined while typing this! I will tuck that one away for future consideration. In the meantime, please think about those you want to have these important conversations with and plan a date to have them. Over coffee, over lunch, while on a walk, whatever. While You’re Still Here.