After 30 years in nursing, Debbie Volker has learned if there’s one thing people want to do on their own terms, it’s die.
She tells the story of a weakened, dying woman who just wanted to have her Christmas tree decorated. The woman hung a few ornaments each day, succumbing to cancer a few days before Christmas. But the tree was done.
Another patient’s request was to be transported by air from Houston to West Texas so he could see his cattle one last time.
And then there was a 52-year-old man from Louisiana. He was chased out of his home by Hurricane Katrina and landed in Texas where he soon found he had terminal cancer. He couldn’t control one of the five deadliest hurricanes in the history of the United States, but wanted to have power over his end of life.
“They are just some of many who desperately search for control over something that is ultimately uncontrollable–death,” says Volker, a University of Texas at Austin nursing associate professor who has been studying end-of-life issues for several years.
Her research explores the nature of what patients with advanced cancer want regarding personal control and comfort when they die. It is funded by the National Institutes of Health.
Volker has traveled throughout the state gathering patients’ thoughts about the concept of control and its relevance to their preferences for end-of-life care. Maintaining a sense of control is cited as a core component of a dignified death.
Participants in her recent tri-ethnic study–“Patient Control, Ethnicity and End-of-Life Care”–ranged in age from 34-87. Most were in their last year of life.
As she tried to bring out what was personal and unique about their lives, Volker’s questions were simple: Tell me what is important to you? How would you like the final months of your life to go?
“People have much more in common than they do differences when facing death,” says Volker. “Most have very simple ideas. But that said, we haven’t really wrapped our arms around this issue very well.”
Most Americans are not very comfortable talking about end of life, death and dying, Volker says.
“Unfortunately, most Americans who have terminal illnesses can’t expect to achieve a death or end-of-life scenario that’s consistent with their values and their ethical preferences.”
One hundred years ago, most of us died at home surrounded by friends and family.
“But death now has become medicalized,” Volker says. “Most of us go to the hospital, undergo very intensive treatments in hopes of a cure or at least buying some time and sometimes end up with a burdensome end-of-life scenario that isn’t what we expect or really wanted.”
The Terri Schiavo case in 2005 created a new openness in talking about how to die. The case, involving a Florida woman who suffered brain damage and became dependent on a feeding tube, stretched on for years and eventually involved not only family but also the courts, politicians and advocacy groups.
People all over the country hurried to fill out advance directive forms–a mechanism to protect control over decision making when one can no longer express preferences for care.
“Unfortunately, the use of these directives and other measures to communicate patient desires has failed to reduce the use of unwanted technology and provide patients control over end-of-life care,” says Volker.
There are several reasons why these directives have failed to work: Most adults still have not completed one. The idea of a written advance directive may be incompatible with cultural preferences. Patient preferences for care may change over time as disease progresses. Hence an advance directive written a few years ago may not reflect what the patient might want today. Health care providers may not know that the patient even has an advance directive.
Volker believes interest in these issues will only increase because baby boomers are a generation used to having control and end of life will be no exception. Some experts even say that support for assisted suicide is likely to rise as baby boomers insist on a say over their deaths.
In her work, Volker looks at ways to improve end-of-life care.
“We know that most Americans want some control over how end of life unfolds,” she says. “They want to exert their autonomy, their right to self-determination, but what we don’t know is what do they want control over?”
Ultimately, she hopes to identify and implement programs that will improve patients’ and families’ ability to articulate their preferences and to better prepare health-care providers to assist their patients and families to achieve the type of death they prefer.
The Institute of Medicine’s definition of a good death is one that is free from avoidable distress and suffering for patients, families and caregivers in general accord with their wishes and reasonably consistent with clinical, cultural and ethical standards.
Although nursing societies have identified end-of-life care practices, Volker believes that many issues regarding “dignified dying” have not been well explored.
“Evidence of what constitutes a good death for the patient is lacking,” she says.
The assumption that people should have control over life and death may be influenced by culture, education and social class, she says, adding that previous research has concluded that control of one’s future may even be a Western notion.
“The concept of personal control is central in Western culture,” Volker says. “Given the emphasis on personal control in our society, it is not surprising that people seek control over health, disease and dying.”
Volker’s research examined differences between white, Hispanic and African American patient preferences for personal control at the end of life. It is the first to use a qualitative approach (collecting and analyzing patients’ own words or stories about what they believe is important) to examine the concept of personal control at the end of life.
The patients were aware of the demands of the illness and sought to normalize their lives by attempts to control their day-to-day activities and attitudes, Volker says.
A theme about control emerged. It was summed up by an African American participant: ‘It is mine to keep together, but God controls our lives.'”
“The dichotomy is that one can control events, choices and personal behavior in daily life, but the ultimate control over our fate (getting cancer, dying from cancer) is in the hands of a higher power,” Volker says.
Regardless of ethnic background, if patients couldn’t control getting cancer or ultimately dying from it, they wanted power over such issues as treatment decisions, family issues, final days of life and control of arrangements after death, she says.
Their sense of what they could control from day to day was unique to each individual.
Some of the dying patients wanted to be in their own home with family. Others wanted to be in a hospital with very few people around. Some wanted a favorite quilt on the hospital bed and favorite photos of family and friends pinned up on the walls facing the bed. Others wanted their pets and prized possessions with them in the final days. Some wanted music and candles. Others did not.
“We sometimes assume that home is the best place to die, but it may not be,” Volker says. “I had some patients in my study who were relatively young with young children. They did not want their children to have the memory of their mother dying in ‘that room.'”
“A dignified death is definitely on the patient’s terms,” says Volker.
Patients shared stories revealing common concerns that transcended ethnic boundaries.
“I want to be able to have control or a say about my illness, whether I think I should take chemotherapy or not, for example,” said a Hispanic female. “The doctors tried to talk me out of it (stopping chemo) and it’s just like, it’s MY body. I feel it’s not going to do anything for me. It’s making me sicker so why do it. I feel like it’s important for me to have control over that.”
An African American patient told Volker he was worried about his family having to care for him.
“I have always told them I don’t want them to be worried if I get to needing a nursing home,” he said. “I will not have a problem with that. My wife and kids know that is going to be one of the things I’m going to write up, and I expect it to be followed to the letter.”
Another patient told Volker, “The doctor says even when you take chemo you are going to die from your cancer and if you don’t take it you are going to die of cancer, so that made me decide to go to the dance hall.”
“This man loved to go dancing and decided to refuse chemotherapy and instead live life to the fullest as long as he could,” says Volker. “His plan was to go out dancing!”
Referring to a ventilator, one woman said she wanted to die with a little dignity.
“I don’t want that damn stuff up my nose and down my throat,” she said. “I want to be able to yell at the kids at the last minute if I feel so inclined.”
Although the research was tri-ethnic, participants likely shared a view of end-of-life concerns characteristic of American cultural norms, says Volker. Further research is needed to study control preferences of individuals who are not acculturated to American medicine.
Volker became interested in control issues and dying after writing her dissertation on oncology nurses’ experiences with requests from terminally ill cancer patients for assisted dying. She has been quoted in the New York Times and other publications on end-of-life issues.
Before she began studying individual cancer patients, Volker looked at the concept of dignified dying from the perspective of oncology advanced practice nurses in Texas. Having been a cancer nurse for 19 years at the University of Texas M.D. Anderson Cancer Center in Houston before coming to the university, she wanted to examine the experiences nurses have had with patients in regard to personal control at the end of life.
“Collectively, the public and health care professionals share an interest in improving care of the dying and promoting dignified dying,” she says.
People with cancer have been identified as a group concerned with end-of-life care, says Volker.
“Given their role in influencing both cancer patient outcomes and nursing practice, oncology nurses have a unique understanding of what constitutes a dignified death. They continue to struggle with ethical and clinical challenges in the care of dying patients and their families.”
Oncology nurses, in fact, play a pivotal role in providing quality care at the end of life and helping patients and their families to achieve their preferences for control over this experience, she says.
Volker asked the nurses to describe a dignified death. To Volker, they represent the “voices” of patients who can no longer speak for themselves.
“The most dignified death would be one in which the person found themselves to be at peace with their issues,” said one nurse who worked in Houston. “It’s their spiritual connectedness. It’s not having a chaplain who comes in and tries to bring them to the water. It’s letting them be with their own sense of spirituality.”
Another nurse said she believed that most people do not get everything settled.
“I mean, we have a lot of baggage through life and the likelihood of everything being settled…I haven’t found that happens,” she said. “Having a good death is helping people find peace with things that are weighing heavy on them.”
Volker found that many of the nurses struggled with memories of patients’ physical indignities and changes in physical appearance. The nurses stressed the importance of maintaining bodily functions, appearance and privacy during the dying process and after death has occurred.
“On the morning she died, I had a patient who wanted me to put her makeup on–do her up just right,” said one nurse. “We had her makeup on, rosied her cheeks, really had her looking nice. And she was so happy to see herself looking that way. And she cozied up and died.”
Another nurse said she thought her patients just wanted to “sleep away.
“They didn’t want to struggle. They wanted to be able to just go to sleep and not wake up. Not only for themselves but also for their families. They didn’t want their families to have that last memory of them crying out and the family being frustrated that they couldn’t help.”
Volker was amazed that some of the patients valiantly tried to look on the bright side.
The Hurricane Katrina evacuee, for example, believed “the storms were putting me in another place where I could get better treatment. God knew I had cancer before I did and he wanted me in a place where he knew I would be taken care of.”
Volker hopes her study will help health care providers to better understand end-of-life issues that are important to dying people.
“Ultimately,” she says, “these insights will help us to design better tools to help patients make and voice choices about their care.”