On Point
Facing Death and Dying

Many Americans spend their last days in a hospital ICU. But in a recent study, participants said they'd rather die at home.

It's December, with the holidays approaching. John, weak, tired, and short of breath, attached to machines and monitors, learns that he may need a heart transplant. One young physician on the cardiology team, under the tutorage of an older, more experienced physician, finds time to explain everything. He's honest, direct, yet kind. But John's diagnosis proves to be something that not even a new heart can fix: adenocarcinoma of the mediastinum, cancer around the heart and lungs.

John goes home to wait for an appointment in three weeks with the oncologist. His wife, Mary, wishes it was sooner. Three hospitalizations later, the care team proposes a chemotherapy regimen. Mary and John want to discuss it first and let the team know the next morning. "No," the doctor says. "It's now or never." The chemotherapy begins that evening, but after the first round, John refuses any more treatments.

He dies in early February at home in the rented hospital bed that looks out on his garden, three days after discharge from the hospital and referral to hospice. It is only ten weeks since the initial symptoms struck a family that had never previously experienced serious illness or dealt with the intricacies of a health care system.

Later, as a widow of less than six weeks, Mary shares her painful regrets. Regrets that she and John had so little time between diagnosis and his death. Regrets that they hadn't really talked about death and tried to prepare one another before crisis struck. Regrets that while both she and John knew he was dying, they had been unable to talk about it. "I know he knew," she says. "After the first hospitalization, he kept having me get things in order, talk to lawyers and accountants."

Looking back, she wishes John had been able to say "never" when pressed for that last decision to start chemo. She feels cheated of a few good last days because the day John began chemo was the last good day he had. She wishes the medical team had been willing to give more time to explain and to give John and her an opportunity to fully discuss the options and choose the course of treatment that would have been best for them.

She wishes that on the day of discharge with John dressed and ready at 9 am, that it didn't take until after 4 that afternoon to finally leave the hospital. Why weren't arrangements made before the day of discharge? Why did they have to lose more time while staff contacted hospice, arranged for a bed and oxygen to be sent to the house, and tried to place a new IV catheter? Finally, with the support of others, Mary was able to say, "No more. We want to go home. It's time."

Less than 60 hours later she felt so alone, when at 4 am she spoke by phone for the second time to the hospice nurse on duty. John was struggling to breathe. She could hear the gurgling, but she couldn't help him. The nurse asked if she had a turkey baster to use as a suction device, for no flexible catheters were available in the middle of the night. The nurse explained that John was "going through his dying process" and he needed to be made comfortable. Mary followed the nurse's instructions for comfort, and John died a few hours later. Now, looking back, John's widow asks, "Did I do the right thing?"

"I share this story not as an indictment
of individuals or a specialty, but as a
reflection of the themes echoed time
and again from patients, families, and staff."

--Jennie Perryman

This is a true story. It could happen anywhere. Traditionally, the focus of academic medical institutions is on research, cure, and life-saving yechnology. Unfortunately, there is little emphasis on the final human connection and death, the last cycle in life.

I share this story not as an indictment of individuals or a specialty but as a reflection of the themes my colleagues and I have heard echoed time and time again over the past three years from patients, families, and staff participating in the Renaissance End-of-Life Research Project. Funded by the Carlos and Marguerite Mason Trust, the Renaissance Project illuminates the complexities of end-of-life (EOL) practice today in tertiary care institutions. As we examined the relationships, interconnections, and issues surrounding the culture of decision making and care options near end of life, we found a multifaceted issue with no simple solutions. But there is a promising, yet challenging, path ahead.

Emory's Renaissance Project has brought together clinicians and academic researchers to design a research-based, EOL clinical practice model that addresses such specific care issues as advance planning directives, do-not-resuscitate orders, decisions when to withhold or withdraw aggressive care, and the option of organ donation. The research team conducted 42 focus groups of 262 hospital and medical staff, patients, and families, and interviewed 48 administrative, medical, nursing, pastoral care, and social services clinical leadership. In addition, we reviewed retrospectively 2,400 randomly selected medical records of patients who had died over the previous three years. We also examined educational opportunities available to hospital and medical staff, including professional school curricula. Our research supports the concept that within the world of acute care, death is perceived by clinicians as "failure" and something to be avoided. Additionally, the economics of managed care, and lack of time and resources were identified as villains or impediments in EOL care. An unanticipated finding of the research appears to be a clash of professional values among disciplines. Nurses often found themselves "caught in the middle" between family members and physicians. Research revealed that there was little formal education in schools of medicine, nursing, or theology on death and dying, EOL decision making, and care options. Perhaps this lack of training can be attributed to the mind-set of avoidance of death at almost all costs; lack of communication among the patient, family, and staff; and a "pass the buck" phenomenon among disciplines. We also found that EOL training was most often done on the job with good or less-than-effective role modeling based on chance.

These professional practice findings were, however, totally incongruent with the study participants' perceptions of an ideal death.

Most participants said they would like to die at home, surrounded by loved ones, with time to say good-byes and time to prepare. One physician said he wants to die sitting in a rocking chair on his porch, surrounded by his grandchildren who would know that he died happy with a smile on his face. Should death await them in a hospital, participants want managed pain control, no artificial ventilation, and a family and health care team who honor their values regarding end-of-life care. And regardless of where death occurs, participants voiced a desire to talk openly about dying and to have someone who will listen.

There is challenging work to be done surrounding core institutional and professional values, which the research supports as the foundations for EOL practice. In this age of specialization, medical technology, managed care, and information overload, professionals practicing the science of "cure" must learn to practice the art of relationships and communication, especially as they face those who are dying. The Renaissance Project's intervention model of end-of-life care will focus on institutional and professional cultures while addressing patient and family values, communication patterns, and, a shared, informed, decision-making process on care options.

In this Issue

From the Director  /  Letters

Yerkes: Link to the Past,
   Hope for the Future

Build It and They Will Come

Putting the PhD in Nursing

Moving Forward  /  Noteworthy

Facing Death and Dying




To date, the project team has tackled the tasks of data collection and analysis and revision of policies and procedures. The team is proposing curricula for health care professionals who deal with the terminally ill and designing computer documentation to help remind staff about resources for EOL care and support. Additionally, in that death and dying are not confined to academic medical institutions, community agencies will be invited to participate in the design of the intervention model.

John's story and the Renaissance Project demonstrate that there are serious communication issues not only among health care professionals, the patient, and family, but perhaps within families as well. It shows the struggles families face, given the complexities of health care and the options afforded them. And it reminds us that preparation for death and decisions about dying as well as after-death traditions, ceremonies, and rituals - such as organ donation, traditional burial, or cremation - are important parts of all our lives. To succeed, perhaps a whole new ethos must be created.

To learn more about the Renaissance Project, provide feedback, or get involved, call 404-712-4806 (project director) or e-mail jennie_perryman@emory.org.

Jennie Perryman
Director of Emory Hospitals' Center for Transplantation and principal investigator of the Renaissance Project, Perryman is currently writing her doctoral dissertation on measuring attitudes and practices at end of life.

Momentum welcomes your submissions to "On Point." If you are interested in exploring an issue vital to the well-being of our mission and the people we serve, send your idea to Momentum, 1440 Clifton Road, Suite 105, Atlanta, GA 30322; call 404-727-8793; or e-mail mgoldma@emory.edu.


Copyright © Emory University, 1998. All Rights Reserved.
Send comments to the Editors.
Web version by Jaime Henriquez.