As I shut the door behind me, the noises of a full ward faded, giving way to the gentle sounds of a humidifier and an elderly woman who was struggling to breathe. Her eyes were closed, and an oxygen mask covered her nose and mouth. I glanced at the windowsill, where multiple cards were displayed—a child’s drawing peeking out of one. Flowers were on the bedside table, and a family photo was displayed nearby. This was a well-loved woman.
I had witnessed her decline with each hospital visit, and it was obvious that the end was approaching. She knew it, too, and had requested to speak with me that day. When I sat gently on the bed, her eyes opened. Recognizing me, she gave a faint smile from underneath her mask. I reached for her hand and leaned forward so that we might hear each other.
Her hand was frail in mine, and yet her grip was tight as I began to share with her the painful truth: She was dying and it was time to make some critical decisions.
I answered her questions as clearly, honestly, and gently as possible. However, something about this particular moment—perhaps her quiet strength in the face of death, or maybe the fact that she would be missed terribly by her family, as well as by me—moved me unexpectedly. When I finally said, “I’m so sorry to have to tell you these things,” I began to weep.
To my surprise, my patient grabbed my other hand and squeezed even tighter.
“It’s OK,” she said as she comforted me. “I am going to have a good death. Please prepare my family. I am ready.”
As I left her room, the statement, “I am going to have a good death,” became lodged in my mind. In the days and weeks that followed, I couldn’t shake it. Sinking into my subconscious, the phrase sometimes woke me in the night, prompting me to wonder: What does it mean to have a good death?
In my 30 years of medical practice—in state-of-the-art hospitals in the United States and in more nascent clinics in Rwanda—I have had countless journeys of walking with the dying and those who love them. My life hasn’t been spared from more personal journeys of grieving.
I thought about how so many people struggle mightily against our inevitable destiny, seeing nothing good in it. Others face death willingly, almost eagerly, as though they’re arriving at a long-sought destination or getting a chance at last to become the self they knew they were meant to be.
Here’s something I know as a doctor: Persistent pain is always a signal that deeper investigation is warranted. Maybe a question that won’t go away is meant to serve the same purpose. Perhaps, if I could search more deeply, I could become a better journeyer for myself, my family, my friends, and my patients.
I discovered many ingredients that make the emotional journey to a good death seem possible. However, I want to clarify that good is a relative term. Dying and death are never easy, and a good death may only be felt as better when compared to those who are entirely unprepared. However, isn’t better preferable to worse?
- Am I truly living my moments?
- Am I truly breathing my purpose?
- Am I confident of my destination?
Since my bedside encounter with my patient who declared her good death and then lived it, I’ve focused on learning from the dying, learning from their grieving companions, and learning from those who write on dying. This was the beginning of my emotional journey to a good death. My children were convinced that I'd been given a terminal diagnosis and just wasn’t telling them. It led to opportunities for deep conversations about those three important questions.
As I shared with my children, I now share with you. Please read this carefully and thoughtfully: Whether young or old, in good health or ill, you’re dying! From the moment we take our first wobbly toddler steps and sadly, even before, we all have a death date on our calendars. We don’t know this date; we don’t think about it—it’s not even in our reminders. Therefore, the first step on an emotional journey to a good death begins with this awareness.
As death became a companion of sorts, I had never felt more alive. Mark Twain said it best: “The fear of death follows from the fear of life. A man who lives fully is prepared to die at any time.” Begin your emotional journey today if you haven’t already started.
If you’ve already entered the emotional journey of dying, you may not be able to imagine an ending that’s good—or even better than terrible. However, I can offer you hope. The road that you’re on has been well-traveled and fortunately, well studied, by experts in every field of compassionate care. You don’t walk alone, though you may have felt alone even when surrounded by loved ones.
Dr. Elisabeth Kübler-Ross wrote her landmark work, “On Death and Dying,” in 1969. Through an experiential study of dying patients, she described five stages that may occur during the dying process: Denial, anger, bargaining, depression, and acceptance were variably expressed as mechanisms to process losses associated with dying.
Other models exist, describing the grieving process that may occur on the journey of dying. Psychologist William Worden describes four tasks of mourning. He describes tasks that the dying must complete in order to finish their journey of bereavement. They are: accepting the reality of loss; experiencing the pain of grief; adjusting to the environment (re-engaging with normal life activities in the “new normal” of dying); and re-directing emotional energy. Those tasks are shared by the dying and those who love them.
Living and dying are uniquely singular in experience. Once one has received a terminal diagnosis, the emotional stages of dying aren’t linear, but more often fragmented, cyclical, and as unique to the dying process as the DNA of the one dying. Understanding this will help you and those who love you provide the guiltless freedom of not accepting today what you had previously accepted or allowing what you hadn’t previously allowed. It gives you the courage to speak your fears and transit through them with quiet strength.
The end of the journey toward a good death should be spent loving, forgiving, laughing, weeping, remembering, and delighting. Sometimes you must tend to the mundane, but spend less time on practical matters. It’s difficult to be “dying” hour after hour. Fears can and should be openly expressed, and tears will flow from time to time.
It’s important that the dying know that their physical needs will be met to limit suffering. Entering the world of hospice isn’t a failure of care, it’s caring fully without fail. Doulas are most often known for their presence with families as a child is born. However, death doulas or death mid-wives have been a powerful addition to meet the needs of the dying and their families.
Finally, those dying need to feel that they’re loved; that though there will be sadness, their loved ones will be OK one day; and that their life had meaning and therefore they'll be remembered.
Live your moments. Breathe your purpose. Know your destination.
Journey well, my fellow traveler.
