Recently, the National Institute of Health released a revised definition of a good death. You may recall that earlier in this series of articles (see www.dyingwithwisdom.com/dyingathome,) we talked about how to prepare for and manage dying at home, which is what most people today would prefer to dying in a hospital. Of course, some people die unexpectedly (by accident, heart attack, stroke, or by their own hand), and while this may be the easiest way for the person who dies, it is the hardest for those left behind. So, what is considered a “good death” can be different from the perspective of the patient than for the friends and family who survive.

I was surprised to find in my research that there was a fair amount of new work about what constitutes a “good death.” To begin with, it’s important to acknowledge that a good death may be different for one person than another. According to the NIH (file:///C:/Users/jslon/Downloads/BBL_Feb_2011_Gooddeath%20(7).pdf, a good death depends upon effective communication so that the patient can define obtainable and meaningful goals (e.g., control of pain and symptoms). A good death is free from unnecessary suffering and distress for both patients and their families. It includes pain and symptom management, along with preparation for death. A good death is one in which the patient is treated with dignity and respect and is surrounded by people who care, and able to be at peace. This is a far cry from the definition the Institute used five years ago when a good death was defined entirely in terms of the patient’s wishes. This definition requires that one take into consideration not only the physical and psychological, but also cognition, economic and caregiving needs, and social relationships. Moreover, it mentions the importance of spiritual beliefs, hopes, and expectations. It also acknowledges the impact of the patient’s social and cultural milieu.

All of this requires honest, ongoing communication that takes place in an environment of compassion and commitment. Patients need good information about what to expect at the end of life, and so do families. Most people fear the process of death because it implies helplessness, dependence, pain, and leaving people behind. It also means inactivity to most people, and Americans tend to fear anything that leads to inactivity.

The Cancer Council NSW is an Australian Organization that reported the results of a study showing that end-of-life is better when people have control of pain relief and know (more or less) what is coming. People need as much control over when and where they die and have as much control as possible over their trajectory, which means whether the decline will be steep or slow, up and down or steady. They must also be able to maintain their dignity, have the chance to say goodbye, and reconcile damaged or broken relationships. They must be able to honor their own spiritual beliefs and have their wishes respected. They also need the time to get their affairs in order. While most people prefer to die at home, some still want the support of a hospital, and it’s important that family caregivers recognize that this is an important choice.

Another group of researchers (Kirkorin, Maldonado, & Pastrana, 2020) write that dying people also must be able to make clear decisions, prepare for death, and be able to give something to others. They reviewed every article they could find that focused on the patient’s perspective and noted that one approach has emphasized control and autonomy over the process, while another highlights preparation for death, abandonment of roles and responsibilities, and the opportunity to say goodbye. In some cultures, the opportunity for life review, in other cultures, family and community are more important than internal processes and experience.

In China and Japan, for example, family relationships are the key to a good death. Patients in these cultures need family support, but dread being a burden. Most dying people want caregivers to honor their cultural traditions about food and the treatment of the body after death. African Americans and Mexican Americans often believe that people should not fight death with life-extending measures as God ordains when people will live and die. As a result, Mexican Americans and African Americans often accept death more readily and emphasize pain relief and comfort. Older people talk about maintaining autonomy. All of the studies revealed a diverse and variable set of patient preferences, even about whether patients wanted to be awake or not.

Still, the core elements mentioned in the review were predictable. These include pain and symptom management, preparation for death, making clear decisions, and contributing to others. However, the authors conclude that definitions of a good death can be a form of social control, so rather than offering some ideal image, they believe that we should look for “ideal conditions under which everyone can live and die with social security and free of existential worries,” (p. 164).

For example, my husband’s stepmother, Marta, just died a few days before Christmas. We knew that she was dying for several months before, although her trajectory was very up and down. Her lungs were filling with fluid, and they could no longer help her much in the hospital. They would drain her lungs, and in a few days, the fluid would accumulate again. Her son and daughter were caring for her, along with breaks provided by the stepchildren, and she was close to all of them. There were many long talks and visits from grandchildren, nieces, nephews, and in-laws (like me). She felt well enough on Thanksgiving to take her children, stepchildren, and me to dinner at a local restaurant. We spent several hours with her that night, enjoying good food and conversation.

Just a few days before she died, we were getting long texts from her daughter, letting us know exactly how she was doing and what the prognosis was. Her messages prompted one of Marta’s grandchildren to make the trip from Istambul to California and all of the siblings to begin to gather. When she died, they called hospice to send a chaplain to the house where he facilitated a discussion about what Marta had meant to each of them. It was an excellent way to honor her life for those there.

In many ways, Marta was able to contribute to everyone who visited. She was aware of and unafraid of dying during those last few weeks. That is, itself, a meaningful contribution to those who survived her. She could see most of the family in the previous few months, weeks, and days of her life, allowing them to say goodbye. She did not want to be dopey during those visits and was not taking strong pain medication or sleeping for hours every day. She had an excellent death.

Of course, not everyone gets just the right amount of time to deal with the death of someone close. People die before family or friends can arrive, or they may have taken strong pain medication when company comes. Such was the case for my son-in-law, Don, who died at 46, leaving two small children behind. It was a tragic death—too soon and too important to the future of his children. Furthermore, he was taking opiates daily. He was dying from glioblastoma, a particularly aggressive type of brain cancer that was extremely painful.

Still, we found ways to comfort him and ourselves. At some point, he began asking for his wallet and keys, saying he “needed to go home,” even though he was home. Dying people are often aware that they are leaving and may talk about going on a journey or going home. For Don, going home seemed to mean going to Oregon since he was born in Portland.

One night, when I was there, he asked again for his keys and wallet. My daughter Alexis had been reluctant to give him the keys lest he wake up and take off in the car. This time, I told her to bring his keys and turn on a recording we had made of all his favorite tunes. We each stood on one side of the hospital bed, holding onto the rails, and began rocking his bed rhythmically from side to side. “We are on our way to Oregon,” we said and continued to rock the bed for several more songs.

Finally, we told him we were tired and that he should text us when he got home. We stopped rocking the bed, and Don went to sleep. I slipped out of the room, and Alexis climbed into the hospital bed with him. That was the last time she slept with him. He was gone in a couple of days. About a week later, a photo of Don suddenly appeared on my phone (I didn’t know why), and at the bottom of the screen, it said, “Everything is all right.” Several days later, I discovered that Team Mobile had decided to send that message every morning if the phone was working right. I think Don had something to do with that! Many people experience this kind of coincidence when someone dies. It is just another thing we don’t understand very well and science doesn’t help.

When I told Alexis about the message, she was mad that Don had not texted her. “Why you and not me?” She asked. “Because I have Team Mobile,” I replied—but we both believe it was the text we had asked him to send the night we rocked his bed.

I’m suggesting here that even in the hardest of deaths, you can invent a ritual or create a moment that you will remember for a lifetime. It takes some thinking about how to use what is available and incorporate what the patient brings to the situation (in Don’s case, the music he loved). I hope you have the chance to say a beautiful goodbye to the people you love when the time, as it inevitably does, comes.