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
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
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
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