NEW YORKFour major themes important to dying patients emerged from a study of people with end-stage cancer: Performing rituals to create memories for survivors; finding meaning in life as well as death; continuing therapy, including alternative therapies; and feelings of a persistent sense of loss, said Sherry Schachter, PhD, RN, certified grief therapist in the Pain & Palliative Care Service at Memorial Sloan-Kettering Cancer Center.
The findings, reported at the Pan American Congress of Psychosocial & Behavioral Oncology, came from a thematic analysis of 241 interviews and other interventions with 9 dying patients and 10 primary caregivers. Patient age ranged from 43 to 85 years, with a mean of 56. The mean age of the caregivers was 53. The primary diagnoses were lung, ovarian, and brain cancers and sarcoma.
The open-ended interviews lasted from about 30 minutes to 2 hours, Dr. Schachter said. The fewest number of talks with a participant was 3 and the most, 53. The last interview with the patient with whom she talked 53 times was on the day before her death, she said.
In addition to conversations during home visits and via telephone calls, Dr. Schachter used letters and journals she received from patients and e-mails in her analysis.
The process of continually reviewing ones life, looking at the meaning of existing rituals, was significant to both the patients and the family caregivers, Dr. Schachter said. The need for traditional rituals was consistent throughout the study, she said. These included observance of holidays, even if it meant having a tofu turkey at Thanksgiving for a patient on a macrobiotic diet, and spiritual practices such as prayers for the sick or saying the rosary. If you dont have a belief in religion, then rituals become an important substitute, she said.
Designing New Rituals
The designing of new rituals was really viewed as a legacy for future generations, a way for people to feel that they would be remembered, Dr. Schachter said. And there was an overwhelming need for these legacies, she added. One woman told her: I would like for my granddaughter to have memories of grandma making dolls for her . . . and, of course, the baking of the Christmas cookies.
One patient insisted that her family buy an ice cream freezer so they could again spend the summer making ice cream as they had when the children were young. When one of her children asked why, she commented that when she was gone, the family could make ice cream and recall the ritual of the past.
The search for meaning was not a philosophical one, she said, to try to figure out the big schema picture, the overall importance of the existence of life, but rather an individual one, to ask, What was the importance of my life?
To find meaning in life and death, patients reviewed their accomplishments and mistakes, Dr. Schachter said. This was a period of growth for most of the people in the study, although painful at times, she said. They learned about life, themselves, and some of the inner strengths that they didnt think they had.
A 49-year-old woman with lung cancer observed: Everything seems to become very clearrelationships, priorities, not putting things off, yet continuing to plan for the future. I wouldnt trade this time for anything. Anyone who thinks its better to go immediately is really missing out. Harder, yes. Scarier, yes. But also worthwhile.
The dying patients forged new relationships with health care professionals and home health aides, something Dr. Schachter had not expected would happen. They also focused on living rather than dying during at least part of each day, she said.
Continuing treatment was considered extremely important because patients did not want to be viewed as giving up, Dr. Schachter said. For some patients, this meant seeking alternative therapies.
Tremendous amounts of money were spent on different alternatives, Dr. Schachter said. It had nothing to do with the intellectual knowledge of the person. A nurse, age 43, for example, asked to have a sacred oil rubbed on her back because a book indicated it had special powers to help her.
Feelings of Loss
Loss was a persistent, consistent, and recurrent theme, Dr. Schachter said, and it took many different forms. Some patients distanced themselves from others as their disease progressed, she noted, but other patients sensed a loss of support from friends and family.
Its so scary that Im going to die and have to be alone in the end, feeling very isolated from family and friends as theyve started to distance themselves, one patient said. Everyone is there at the beginning, but they all leave.
Loss of independence was painful for a woman who had always lived alone. I know I now need 24-hour nurses, she said. I cant be by myself. Do you know what that means to me?
Some dying patients do not want to talk about death, the ultimate loss, but others do, Dr. Schachter noted. We have to go where people are and give them the freedom to talk about whatever they wish, she said.
Some are concerned about dying in the right way, she reported. What in their mind was the right way often precipitated tremendous feelings of guilt and anxiety that they were doing something wrong, she said. So much of our work is trying to support patients and families in what is comfortable for them.