What’s wrong with the way we die? Coalition asks the experts: Patients
Focus on encountering death as a rich, living’ experience
"I have not experienced a doctor who will talk about that, and I even sat my oncologist down for a one-hour session one time and said, What do you do when a person gets to the dying phase? Are they out of your range then? Because you haven’t fixed us?’ He would just say, Don’t ever talk about it! As long as you talk about death, then it’s going to happen.’"
"Thank God we don’t have time to bond with families anymore."
These quotes are from a terminally ill patient and a physician, respectively. Both participated in a groundbreaking study of health care at the end of life a study that for the first time included rigorous discussions with terminally ill patients and their caregivers. The results, based on 55 focus groups with 407 participants in 11 locations across the country, show the startling yet simple fact that dying patients and their families want to talk about how they will die and how they will live through the last chapter of their lives. Terminally ill patients point out they are still alive and wish to be treated as such, says Lawrence A. Plutko, MA, MTh, chairman of the Supportive Care of the Dying Coalition and system director of theology and ethics for Providence Health System in Seattle.
When patients seek assisted suicide or say they a fear a loss of dignity at the end of life, it’s not technology that they fear most. Rather, the study says, patients fear that once they are diagnosed as "incurable," their doctor, their community, their co-workers, friends, and society as a whole will treat them as if they already are dead.
The coalition and its study are the culmination of efforts by six major Catholic health care systems in the country who comprise the Portland, OR-based group. Reform, not just improvement, of care provided to people with life-threatening illness, to their families, and to the communities in which they live is essential, says Plutko. (See model of reform, p. 99.)
Four major goals have emerged goals that require the support of your institutional ethics committee members and their peers:
1. Research the information, service, and support needs of people with life-threatening illness, their families, and their communities.
Ethics committees can begin by approaching other health care providers and community leaders. These might be other institutional ethics committees, a bioethics network, hospice staff, or religious groups. Then, collaboratively conduct focus groups with patients and families, Plutko suggests. "Your goal isn’t to build a new mountain of data. It is to find out what people in your community are thinking about their own death."
Significant needs assessment is needed before reform efforts can begin, say Plutko and his colleagues. Most programs and services for those facing life-threatening illness are "based on health care provider’s assumptions not the experience of the people involved," he says.
Ask your focus group participants to respond to these questions asked by Supportive Care of the Dying in its research:
• Tell me about your experience, or the experience of someone you know, from the time the illness appeared to be life-threatening or fatal.
• How were you prepared for this? How did health care providers assist you? How did your prior life experiences assist you?
• What were your concerns or fears?
• What were the problems or barriers you faced? In meeting the problems and barriers, what was helpful and what was not helpful?
• Any experience can impact our attitudes and values. How has your experience changed your attitudes and values?
• Is there anything else you’d like us to know?
2. Develop comprehensive models of care that focus on community-based support for persons with life-threatening illness and that integrate ethical, clinical, and spiritual dimensions.
Later this year, the Supportive Care of the Dying hopes to begin two pilot research projects among African-American and Hispanic populations in St. Louis and Denver. One of the findings of the study is that such patients can experience less access to services that support care of the dying, Plutko explains. (See the algorithm for community-based supportive care, p. 100.)
While good medical care is imperative, life-threatening illness is managed by individuals and their families in the communities in which they live, says Alicia Super, RN, project coordinator for the coalition. Improved care of the dying must integrate the natural process of illness, death, and dying into those communities, she says.
During the focus group meetings, Plutko says, participants reported they had undergone chemotherapy, returned to work, and found themselves politely ignored or resented for "not bearing their weight on the job."
Many schools treat death and illness as taboo subjects: A child of a mother diagnosed with leukemia, for instance, showed a marked decrease in productivity and performance, Plutko says. In the larger community, family members reported a lack of understanding of what they faced in trying to handle the illness and take care of small children. And in churches, the dying and bereaved found sporadic support. Often members of the faith community came to visit patients, but clergy reluctantly came only to administer sacraments and expressed anxiousness about discussing death with the patient and/or family.
3. Create a professional mentorship program that promotes holistic skills and behaviors in health care providers.
Much has been said about the role of physicians in improving end-of-life care, but research continues to show only minimal improvement.
"It must be that this education is not speaking to what would help doctors do a better job," says Marian Hodges, MD, assistant director of medical education at Providence Portland Medical Center and a lead investigator in a professional mentorship program set to begin early next spring.
"Physicians learn best when a patient shows them something they do not know and asks for their help," says Hodges. "Patients in our focus group told us that one of the primary questions and concerns they have is how they will die not from a certain disease, but exhibiting what symptoms? Will they have nausea, dyspnea, a death rattle’?" Family anxiety is often fueled by a lack of information about the symptoms of death.
"Doctors don’t necessarily know the answers," she says. "It wasn’t until I recognized the death rattle’ myself that I became aware of its effect on family members," Hodge says. (A patient close to death will have muscle weakness that deprives them of the ability to swallow even saliva, and they emit a loud rattling sound.)
"I now explain to families that this is natural and does not hurt the patient," she says.
Family members who had not been told by caregivers that their loved one was close to death felt "cheated" that their last days were not more meaningful. "How many times have I known a patient is close to death and never made a point of telling the family?" Hodges asks.
The two-phase proposal for the professional mentorship program will look at those complex issues, facilitate and coach interdisciplinary teams into partnerships with communities, and train physicians in the skills and knowledge of the natural process of death.
4. Design, develop, and implement community education programs that promote supportive networks and partnerships for caring for individuals and families experiencing life-threatening illness.
"Provide better guidance in living with life-threatening illness, anticipating death, grieving, and benefiting from the loved one’s last days," says Super.
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