March 18, 2002
To Flee Or Not to Flee: The Problem of Denial When Dying
Reverend Linda Yates
I have been thinking a lot about how people die. I am a United Church of Canada minister and have had the profound privilege to be with people who have been diagnosed with terminal illness. Sometimes I am lucky enough to travel with them from the beginning; through the stages of diagnosis, shock, readjustment, setback, readjustment, setback etc... and finally death. This traveling has taught me much along the way.
Ministry is probably like most professions - the most important work comes from on-the-job training. I have had to unlearn much of the theory I was taught in Theological School because the practicality of working within real life situations revealed to me a different wisdom than what was academically and institutionally accepted. For example, I had to re-teach myself to preach. In this rural area that I live in there is only one restaurant, and that can only be reached after a twenty minute drive. Everyone goes there to eat large portions of diner-type fare and catch up on the local news. Mostly they catch up by eavesdropping. Since the room in which one is served is smallish one must literally rub elbows with the others there. Once, I overheard one woman bragging about my preaching. I was excited and listening hard because she seemed so pleased. She said that she was proud to be part of a congregation which hired a woman that was smart enough to use so many words that no one understood. Then I got it. Perhaps the people do not really need to understand the issues within the ancient church that gave rise to the Nicene creed. Perhaps the matter of transubstantiation during Eucharist is not one of the burning questions on parishioner's minds. Perhaps the minutiae of the nuances of Hebrew and Greek and the subsequent effect on the translations of scripture passages did not keep them up late at night. What did? Life, death and the struggle in between. To thrive through that they needed to know they were loved. So that is what I preach now. They are loved. God loves them. I love them. We should all love each other. It has been a continuing conversion experience for all of us.
I have also had to relearn the pieces around how to be with those who are dying. Of course that has become more poignant as I continue to live with metastatic cancer myself. Over the years I have observed that how one dies seems to be as important as when one dies. Three deaths come to my mind. Two were terrible. One was not. Both difficult deaths involved women who were in complete denial about their disease. Their denial made it impossible for them to do the relationship work that would allow those who loved them to survive their deaths with some kind of well being. Their deaths became fear filled and had a profoundly negative affect on the medical staff who cared for them. I have removed all identifiers and added some details from other very similar cases, so they may remain anonymous.
Sarah, (not her real name), was a single mother who had an elementary school aged child. I followed Sarah through her illness and became increasingly concerned about her inability to perceive the fact that she was dying. She lived with her family of origin and they were most committed to erecting walls of denial around her. The loved her so much the thought of separation was much more than they could consciously bear. When I saw her in the hospital it seemed that she would begin to raise some issues around her worsening course, but then her family would get wind of it and I would be told in no uncertain terms that she was not that sick and no one was to talk to her about it so she could remain positive. In her final week, Sarah was blind, incontinent and bedridden, still assuring me that she would be cured in a couple of weeks. Her small daughter was told she was going to be made better and would be home soon. The hospital staff, the social worker and I all approached the family about the need to communicate with her child about the severity of her disease. She needed to be told that her mother was dying, we said - to no avail. It is my worry that Sarah's physical discomfort was under treated because the family would not allow too much medical intervention, recognizing that when the paraphernalia of hospital medical vigilance appeared, severity was being signaled. When she finally died the following week, her family, especially her child who felt that EVERYONE had lied to her, were devastated. After the funeral, I reviewed my work with her with colleagues. I had done everything right according to pastoral care standards of theory and practice. I had even had some training from the Clinical Association of Pastoral Education. I knew what to do. I was supposed to not IMPOSE any of my presuppositions or values upon her or her family. I was just to BE with her - walk with her on her journey - be a holding, listening presence. Yada, yada, yada. It felt wrong. I felt in the heart of my soul that had I challenged that family to face the dying earlier on that all of them would have been much better off. But what did I know being the neophyte that I was?
Much later, I met another woman in deep denial. Pat, in her late sixties, was a woman who, by her own reckoning, lived with metastatic cancer for almost two decades, undiagnosed. She did not want to deal with doctors. She wanted to enjoy her life, so when she self-diagnosed all those years ago she kept it to herself. Somehow, she had kept this terrible secret from her husband. I had never seen a tumour grow unchecked and unchallenged before. I worked for years in an infectious disease research lab and I think I can say that there isn't a body part, secretion or fluid that I haven't had to culture, dissect or test in some manner. I can tolerate gross things. This tumour was more horrible than I ever imagined anything could be: a purple, pulsating, multi-limbed spider. Somehow Pat lived with that thing growing strong within her bosom and told no one that it was there.
When I went to see Pat she was sitting up in a hospital bed. She had become incontinent, paralyzed from the waste down and could no longer breath without oxygen. She was in steep decline. The staff told me that she had a week or two to live. Certainly she would never leave the hospital. Now is the time I thought that we could talk about dying and whatever spirituality issues she wished to bring up. To my astonishment Pat insisted that she would be cured and would be able to leave the hospital the following week. My training told me that I just needed to be with her in that space. So I was. As she succumbed to the inevitable her struggle took on harrowing aspects. She continually tried to escape the hospital and would attempt to climb out of the bed, despite the fact that her legs no longer worked. She had to have palliative care workers with her at all times after she fell out of the bed a couple of times. She was sedated but her dread of dying could not be drugged away. She was absolutely terrified. No amount of comforting could help because decades of denial could not be addressed and deconstructed in a couple of days. The efforts of nurses, physicians, the palliative care workers and myself were useless in terms of ameliorating her psychic and spiritual pain. The night before she died she turned to the palliative care worker and said "Please wet my lips. I need water so I don't die. I can't die." She died four hours later. The hospital staff were traumatized. They told me that they had rarely seen a death full of such suffering.
I needed a lot of time to reflect on Pat's death. I came to some conclusions. I no longer sit unresponsive with pathological denial. The people I visit who are chronically and terminally ill know that I will be opening up the subject of dying with them. As we do so we naturally move into the world of spirituality and spiritual concerns. I no longer am just with people. This too has been a conversion experience. As it happens, in my small rural area, there are five youngish women who suffer from terminal cancer. I decided to gather them together. The chair of our Spiritual Care team and I formed a group which used Joyce Rupp's book, Praying Our Goodbyes, as a resource. We faced the big D word together. One of the participants had spent some time with Pat as she was dying. When she was diagnosed with cancer herself, Pat's dreadful death affected how she faced her own fears. The group she told me, had removed that for her. The women shared with me that without the group they would have probably continued to live largely in denial. Denial was not permitted within our setting. We continuously held it out in front of us for all to see - death in its nakedness. It's like anything else, it's not so tough when it's naked, named and normalized. It was difficult to face they said, but their lives have had so much more richness, intentionality and spirituality since they found a safe space to talk about dying. We have given each other that gift.
Since I have decided to embark on the path of naming death and encouraging, even cajoling others to confront their fears around it, the dying around here has been easier on everyone. This fact alone seemed to confirm my hunches around the need to help people push past denial. Wondering again whether I was forcing my belief systems upon vulnerable peoples, I decided to do a brief literature search. The literature seems to support the hypothesis. Emotionally expressive and positive/confronting coping styles are associated with lower pathological morbidity. Fatalistic/helpless and denial/avoidance coping styles are associated with higher distress and pathological morbidity, (see bibliography below). Although it may be difficult to change one's coping styles late in life, new skills can be learned at any stage of life, depending on the support available and motivational considerations. We can help one another learn. Simply put, facing, even embracing the concept of death seems to help us cancer survivors avoid it longer.
A final case study involves a man who was diagnosed with advanced metastatic cancer just as I arrived into his area. In fact, I was with him in his hospital room as the physicians told him to get his affairs in order because at most he might live three weeks longer. A fiercely independent man, he decided to go home. Charlie was a pleasant, eccentric loner kind of guy. We have a lot of them in these parts. In his sixties, he had a collecting fetish. He had not thrown anything away for the last twenty years. Before I would visit him, one of his adult children would come and clear a path through the five feet of debris throughout his house so that I could reach his living room couch. He had no phone and the only source of heat was his wood stove oven. I was visiting him once a week. One evening in late January, about three weeks after the diagnosis, he told me he had been thinking about death. He knew he was dying but he had decided not to do it until May. A committed nature loving man, he wanted to live long enough to see the Mayflowers come up. In particular, he wanted to give me a bouquet since I had never had the delight of seeing their tiny floral perfection or experiencing their delicate scent. I told him that would be okay but he had to remember that I was being ordained on May 30th so I would be too busy that day to do a funeral . I was joking of course. He wasn't. He picked the Mayflowers on the 26th. He lived until May 27th. I had to come back from another province where I was being ordained, the day before my ordination in order to do the funeral.
Charlie taught me a lot about facing death. He was hopeful but not fatalistic. He was honest but not helpless. He was in control to the end, dignified and peaceful in his leave-taking. It was a good death.
You don't have to be eccentric to have a good death. You do need to talk about it however. Find someone who can hear it. Family and other loved ones are rarely open or receptive to hearing such talk. It may be too painful for them as they are forced to face the impending hypothetical loss of you. There may be a support group in your community that deals with these issues. There may be a person near you who is dealing with terminal illness in a manner you admire. Consider sharing with them. You may have a clergy person that should have some basic ability to hear your story and help you explore these needs. Pay someone. I have found that there are many excellent therapists in the professional world who do fine work in this area. Keep a journal. Just get yourself talking about it. As the fears around dying are dissipated in this manner, you will find, ironically, that you think about it less. When you think about it less, you can get on with the business of living with cancer. As you get on with the business of living with some sense of peace, paradoxically you will probably push that date with death farther into the future.
- Burgess C. Morris T. Pettingale KW, "Psychological response to cancer diagnosis II; Evidence for coping styles," Psychosom Res 1988; 32 (3): 263-72
- Carver C.S., Pozo C., Harris S. D. Noriega V., Scheier M.F. et al., "How coping mediates the effect of optimism on distress: a study of women with early breast cancer," J. Pers. Soc. Psychol., 1993, Aug: 65(2):375-90
- Dunkel-Schetter C., Feinstein L.G., Taylor S.E., Falke R.L. Patterns of coping with cancer, Health Psychology, 1992; 1 1(2@; 79-87
- Stanton L., Danoff-Burg S., Cameron C., Bishop M. et al, Emotionally Expressive Coping Predicts Psychological and Physical Adjustment to Breast Cancer,Journal of Consulting and Clinical Psychology, October 2000, Vol 68, No. 5, 875-882.
- Website: Physicians Committee for Responsible Medicine, The Role of Exercise and Stress Management; http:..www.pcrm.org/health/Cancer_Project