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 this 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 myself – 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 okay,” 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” lodged in my mind. In the days and weeks that followed, I could not 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 thirty 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 has not been spared from more personal journeys of grieving.
I thought about how so many people struggle mightily against our common destiny, seeing nothing about it as good. Meanwhile, others face death willingly, almost eagerly, as though they are arriving at a long-sought destination or getting a chance at last to become the self they knew they were meant to be.
Here is something I know as a doctor: persistent pain is always a signal that deeper investigation is warranted. Maybe a question that will not go away is meant to serve the same purpose. Perhaps, if I could search more deeply then I could become a better journeyer for myself, my family, my friends, and my patients.
I discovered many ingredients which seemed to 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 than those entirely unprepared. However, isn’t better preferable to worse?
Through this time of reflection and study I began to formulate three important questions one must ask themselves on their journey to a good death.
Begin living with the end in mind and you will start your journey to your good death.
Since my bedside encounter with my patient who declared her good death and then lived it, I have focused my writing 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 had been given a terminal diagnosis and was just not 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 are 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 is 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 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.” [i] Begin your emotional journey today if you have not already started.
If you have already entered the emotional journey of dying, you may not be able to imagine an ending that is goodor even better than terrible. However, I can offer you hope. The road that you are on has been well traveled and fortunately, well studied, by experts in every field of compassionate care. You do not 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. [ii] Through a qualitative and experiential study of dying patients, she described five stages which can occur during the dying process.
The first response to loss is often denial. Denial is often short-lived, as the need for medical decisions and medical care often propels one suddenly into the foreign land of the healthcare system.
When reality can no longer be denied, it is typically followed by anger. It is important to journey authentically with this emotion. The fact is that deep, powerful and vacillating emotions unexpressed can keep us mired in misery that borders on despair.
Bargaining does not always occur verbally. Often it is silent. Bargaining often is as simple as expressing remorse for some past indiscretion or a current bad habit, and then promising “to do better” if given a different timestamp.
In her book, Dr. Kübler-Ross addresses the common stage of depression and describes two types of depression prevalent in dying patients. Each type is unique and should be treated differently by clinicians and loved ones. The first is described as a “Reactive Depression” and is linked to the various losses that a patient experiences over the course of an illness. I call them the little deaths.
The second depression described by Kübler-Ross, “Preparatory Grief,” is quite different. This can be an unspoken grief as the patient contemplates losses to come. Preparatory grief requires time and contemplation.
Acceptance does not mean the absence of lament, fear, loss or any other emotion that comes as terminal patients process their current reality and their future. Acceptance is knowing the outcome and no longer struggling against it. For many, this is where peace resides, and peace in the face of death is powerful, both to have and to witness.
Other models exist describing the grieving process which may occur on the journey of dying. Worden’s Four Basic Tasks In Adapting To Loss are descriptive of tasks the dying must complete to finish their journey of bereavement. [iii]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 are tasks 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 are not 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. Allowing what you had not previously allowed. It gives you courage to speak your fears in truth and courage to transit through them with quiet strength.
The journey’s end towards a good death should be spent less on practical matters, but rather loving, forgiving, laughing, weeping, remembering, delighting, and sometimes just the mundane. It is difficult to be “dying” hour after hour. Fears can and should be openly expressed, and tears, well they will flow from time to time.
It is important that the dying know their physical needs will be met to limit suffering. Entering the world of hospice is not a failure of care, its caring fully without fail. Doulas are most often known by their presence for 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 are loved, that though there will be sadness, their loved ones will be okay one day, and that their life had meaning and therefore they will be remembered.
Live your moments. Breathe your purpose. Know your destination.
Journey well, my fellow traveler.
[i] Khurana, Simran. “Mark Twain & Death.” ThoughtCo, Feb. 16, 2021, thoughtco.com/mark- twain-and-death-2832663.
[ii] Kübler-Ross, Elisabeth. On Death and Dying. 1969. Print
[iii] Martin, Terry L. “Worden, J. W. (2018). Grief Counseling and Grief Therapy. A Handbook for the Mental Health Practitioner.” OMEGA – Journal of Death and Dying, vol. 80, no. 2, Dec. 2019, pp. 331–334, doi:10.1177/0030222819869396.