Talking with and Listening to the Terminally Ill Speak About Dying

By Tom Smith, Ph.D.

 

The first person I remember talking with about death and dying was my father. I was 30 years old and he was 54. He did not quite finish high school and was a WWII Navy veteran. He married, had four kids, taught all of us a strong work ethic and bought a nice house with a pool in the backyard. He just drank too much and worked too hard. It took five heart attacks to kill him.

A couple of months before he died, he began to ask me questions about what life was all about and what was this “love thing” that I kept talking about. Sadly, with all his accomplishments, he seemed to despair. He was so young still and there seemed to be so much more life to live. He grieved for life he would never have. He became quiet and pensive.

When AIDS struck, there were many very young men, some not even in their thirties who were faced with their inevitable death as they almost rotted away. They were angry … more than angry, extremely pissed off! They did not want to talk about dying; they wanted to talk about living. Why weren’t the doctors saving them? I recall that some raged until their last breath. Others, resigned, finally said to “go and buy the grave” and exhorted us standing around their death bed to “be strong and not afraid”. Some who were devoutly religious, asked if it was okay to die, give up the fight and let go. And finally, there were those who, weeks before they died, became very quiet and said little or nothing.

It did not seem that any of them went through any kind of “normal” death marked by distinct stages. Every death was original … some ugly and almost repulsive and others, peaceful, the dying person exiting this life with great equanimity. Each had a unique relationship with death.

Many years ago, in 1969 in her book On Death and Dying, Elisabeth Kubler-Ross introduced the world to the 5 stages of dying: Denial, anger, bargaining, depression and finally, acceptance. Her central observation was that if you want to know what dying people are going through, ask them. Since, her ground breaking work, many others have followed her dictum and started conversations with the dying.

Thirty years after Kubler-Ross’ original research, Kristin Wright embarked on a qualitative study exploring the experiences of terminally ill patients and their families as they faced the inevitable. It originally appeared in the October 2003 issue of the Journal of Marital and Family therapy, entitled, Relationships with death: The terminally ill talk about dying. She realized that dying patients are in fact living and that motivated her to follow her mentor’s method, as participant-observer, to interview the dying and their relations as witnesses and experts on what was going on. She found that after 34 years, Kubler-Ross’ stage theory continues to shape thinking about dying to the point that some dying patients are “pathologized” if they do not “follow the script” as originally developed in the theory. Kubler-Ross’ intrapsychic model was found wanting and likely to label the dying person and invalidate their experience.

Through interviews of terminally ill patients and their families, a new model emerged that describes six relationships that the participants shared with death: Imprisoned by death, carpe diem (seize the day), carpe mortem (seize thy death), life and death transformed, silenced by death, and waiting for death. She reaches three conclusions: Each individual’s dying is as unique as each individual’s life; there is no “normative” process of dying, only a relationship to death that is neither right nor wrong; and finally, death shapes the dying person and the dying person shapes their personal relationship to death.

In the first instance, the dying person relationship to death is defined as that they have only so much time until death rather than so much time left to live. Death has cut them off from life and imprisoned them. You just do not go out and buy a new suit or car. As one person put it: “It’s like I’m dead already.”

The second relationship to death is characterized by life being the focus rather than death. The spectre of death sweetens the present moment of life. Everything starts to become precious … the pleasure of washing one’s face or brushing one’s teeth. Pain can sometimes be welcome as a sign that “I am alive!”

In the third situation, death becomes one’s partner and comforter. There will be an end after all and so we wait for the lover to come and take us away. It is not that one wants to die, but there is nothing of which to be afraid. Death is part, the last part of life’s journey.

The fourth relationship to death is transformational. Either one sees death differently or life or both. Death becomes an eternal reality and life, the dream. Death does not separate us, but unites us. Some how it all becomes more bearable: The living and the dying.

Death can also shut us up. We can become so overwhelmed by its finality that we are silenced. We will not talk about it. Family will not talk about it. When the subject is brought up, there is discomfort and a great quiet. No one will talk. We cut ourselves off from each other. We may not even say, “goodbye”.

Finally, at some point, we must wait for death; especially, if the situation worsens and the signs of death begin to appear. We are weak and do not want to eat. We are expectant. We can see in the eye of our loved ones that they are waiting too.

Each and every story is different; there is no normative process. There is just this relationship we have with death: Now, tomorrow and tomorrow, changing, shifting and evolving.

In December 2005, the Singapore Catholic News published an article about expert advice to the terminally ill and their caregivers given at a workshop organized by the Singapore Pastoral Institute and Catholic Nurses Guild in November of that year: Contrary to what many well-meaning people may think, it is always better to tell the patient the truth, if dying, and face up to the reality of the approaching death. This gives the dying person time to talk about their emotional, psychological, social and spiritual pain and so, assist patients in completing life’s unfinished business.

Terminally ill patients may need to discuss such questions as: Why am I suffering? What is the meaning of life? What is the use of money, possessions and position in society? With what values have I lived my life? Why did I not do the things I wanted to do with my life? What is going to happen after I die?

In a sense, we are dying every day and answers to these questions are of paramount importance in how we live our life. So, for all of us who are “dying every day”, the sooner we begin asking these questions the better. Letting the dying person talk starts the grieving process for all and especially, for the dying person, who grieves over not doing what they wanted, not saying what they wished they could, and leaving loved ones behind.

The dying need to know that it is okay to talk about their feelings and there are no right or wrong feelings and that whatever it is that they are going through is valid and real; they are not to be discounted. Usually, the more the dying can speak about their experience, the easier the journey will be.

Research has demonstrated that the terminally ill do not fear or find unusually stressful conversations or questions about what they are feeling about dying. When the dying are asked in research interviews what concerns them most, to respond is not necessarily distressing to them and many are glad that they have been asked. It is okay and probably very helpful to open the conversation up with a dying person and let them begin to say whatever it is that they have left to say.

They do have concerns and expectations: Unresolved issues, anxiety, fear of unremitting pain, fatigue, leaving family members behind and a deep desire to talk about their impending death, fear of the unknown, their religious faith, final responsibilities and being able to adequately deal with not only their emotions, but also those of the people surrounding them.

Words often fail us when someone we love is dying, but beyond hugs, longing and caring looks and efforts to comfort them, all we have left are words. We are confronted with speaking about the unspeakable. We stumble and do not know what to say. All of this is okay because what we can do best is to listen patiently and attentively to the dying person and be present for them. Simple expressions of love and concern can punctuate the spaces between their reflections and comments. We are there to recognize and acknowledge the good they have done and to give thanks to them for their sacrifices and generosity in giving of themselves. Moreover, we are there also to forgive any regrettable fault of commission or omission.

How I recall encouraging dad and recounting to him all the great things he had done with his life: Coming from a humble background, serving his country, raising four successful, hardworking children, amassing more than a little wealth for his soon to be widow and much more. I also thanked him for all that he showed me to do and what not to do. His faults became gifts. Yes, dad, I will try to do this and avoid that. He was still struck with the realization that he was at his end. The conversations grew shorter and he more subdued. He had so much more to say.

References

Emanuel, MD, Ph.D., Ezekiel J.; Fairclough, DPH, Diane L.; Wolfe, MS, Pam; Emanuel , MD, Ph.D., Linda L.; Talking With Terminally Ill Patients and Their Caregivers About Death, Dying and Bereavement, Arch Intern Med. 2004; 164: 1999-2004

Goldsteen, Minke; Houtepen, Rob; Proot, Ireen M., Abu-Saad, Huijer Huda; Spreeuwenberg,Cor; Widdershoven, Guy; What is a good death? Terminally ill patients deatling with normative expectations around death and dying. Patient Education and Counseling, Vol 64, Issues 1-3, December 2006, pps. 378-386.

Grumann, Ph.D., Mareile; Spiegel MD, David; Living in the face of death: Interviews with 12 terminally ill women on home hospice care. Palliative & Supportive Care (2003), 1: 23-32 Cambridge University Press.

Kubler-Ross, Elisabeth; On Death and Dying, 1969

Singapore Catholic Newshttps://www.catholic.org.sg/cn/wordpress/?p=120

Wright, K., & Flemons, D. (2002). Dying to know: Qualitative research with terminally ill persons and their families. Death Studies, 26, 255-271.

Wright, Kristin; Relationships with death: The terminally ill talk about dying. Journal of Marital and Family Therapy, October 2003