A Final Embrace
As attitudes toward death and dying evolve, palliative care nurses are better able to provide comfort, respect and understanding to patients and their families
By Cathryn Domrose
September 6, 2004
When she was in high school about 35 years ago, Mary Denise Smith, RN, MS, CNS, watched a family friend die of breast cancer. The limited treatments available at the time could not contain the disease, and the nurses and physicians who cared for her friend could do little to control her pain.
“They felt so horrible,” Smith said. “Because they couldn’t do anything.”
They put the dying woman in a room at the end of a hall and closed the door. Her family, emotionally destroyed by her illness, was overwhelmed and helpless.
“She died alone and in a lot of pain,” said Smith, a palliative care clinical nurse specialist and associate director of the Center for Ethics in Health Care and chair of the ethics consult service at Oregon Health & Science University Hospital in Portland. The experience led her to focus her nursing career on end-of-life care.
As treatments and medications for life-threatening illnesses have evolved, so have — although more slowly — attitudes toward death and dying. In the last several years, following the lead of hospices and patient demand, many health care workers are starting to treat a patient’s death less as a taboo and more as an inevitable event they must treat with respect and understanding.
Many hospitals have specialty care or palliative care teams trained to work with patients and families who face a life-threatening illness. Bedside nurses are receiving more training in knowing when to call in the teams, and how to support patients from the time their diseases are diagnosed. Physicians are learning to respect patients’ wishes to stop aggressive treatment.
But many nurses believe more could be done for patients earlier if health care workers and the public better understood the importance of palliative care.
Recently, a palliative care consortium published a set of guidelines geared toward helping health care professionals establish or strengthen palliative care programs and better care for patients whose needs for information, comfort, and support extend far beyond the means of the best technology and medication.
Hand-in-hand with hospice
In the early 1970s, hospice programs led the way into “a wonderful model of end-of-life care,” said Betty Ferrell, RN, PhD, FAAN, a research scientist at City of Hope National Medical Center in Southern California and a coauthor of the clinical practice guidelines for palliative care published by a group of five palliative care organizations in April. But most hospice programs accept only patients who decide not to treat their illnesses and want only comfort care.
In the last five years, some health care providers realized that the principles based on hospice could be applied to patients with life-threatening illnesses much earlier, to help comfort them and ease their pain, as they pursued other options, Ferrell said. Multidisciplinary teams treat symptoms and pain, and also help patients and families make decisions as the illness progresses.
Palliative care applies not just to cancer patients but also to those with chronic illnesses including heart disease, end-stage renal disease, and others who often die in intensive care units.
Studies show that although more than 90% of Americans say they want to be cared for at home at the end of their lives, more than three-quarters die in hospitals or nursing homes.
Patients’ top priorities include being free of pain and psychological stress, having control over decisions about their care, avoiding treatments that prolong their deaths, and not burdening their families, according to the palliative care clinical guidelines published by the National Consensus Project for Quality Palliative Care.
“The field has taken off on its own because of the demand,” Ferrell said.
More than 800 hospitals have started palliative care units or palliative care teams, according to the Center to Advance Palliative Care. Palliative care also has started integrating with pain teams, Ferrell said, as healers realize pain means psychological and spiritual distress, as well as physical hurt.
Most palliative care teams — also called comfort care or supportive care teams — consist of a core group of a physician, nurse, and social worker, with other professionals including chaplains, pharmacists, therapists, and psychiatric workers called in as needed.
Besides managing physical pain and treating symptoms, teams may initiate family conferences, offer grievance counseling, make referrals to help with finances, and help patients and families make arrangements for future care, such as advance directives. Many send cards and hold memorials after a patient dies.
Full-service care
A few hospitals have suites set aside for dying patients and their friends and families. The University of California, San Francisco Medical Center, considered a national model for palliative care, has two large comfort care suites on a 34-bed med/surg unit.
The suites, modeled on those in birthing units, have parquet floors and large windows with views of the city. A wooden cabinet holds a television and VCR, and brass lamps stand on bedside tables. The beds are covered with homey blankets and a loveseat pulls out into a sofa bed for family members.
Medical equipment is hidden behind paneling and a glass cabinet holds religious icons, including a Bible, a Quran, and a Torah.
Other cabinets contain books on death and dying. The hospital’s Child Life Services program offers counseling, books, and support for children of dying patients.
Palliative care teams in hospitals without comfort care rooms often arrange for special services, including art therapy, pet therapy, and aromatherapy. Many contract with musicians, such as harpists or flutists who play therapeutic music if patients and their families desire it. Nurses at OHSU Hospital help family members make handprints and memory boxes of their loved ones.
“It’s beautiful to watch what happens in the room when the nurses and the family are working together,” Smith said. “It really creates a bond and the nurses feel they are able to do something significant and healing with the family.”
The most important aspect of palliative care, nurses say, is helping patients and families realize what they want their care to be. Every patient and every family member is different:
Some want to continue aggressive treatment as long as possible, holding out hope for a cure. Others say they don’t want to continue if their quality of life declines.
“The biggest part is reminding yourself, it’s not about you,” said Connie Dahlin, APRN, advance practice nurse for palliative care services at Massachusetts General Hospital in Boston and president of the Hospice and Palliative Nurses Association. “It’s about the family and the family process.”
Palliative care nurses also must use their assessment and communication skills in talking to patients and families about dying and how to prepare for it.
“Every patient is so individualized,” said Debbie Grabeel, RN, palliative care nurse manager at Parkland Health & Hospital System in Dallas. “We have patients who do not want to discuss it, do not want to talk about end of life.” In some cultures, talking about someone’s death is forbidden. “It’s hard to find that fine line,” Grabeel said, “but most of the time, the patients know.”
Many patients feel relieved when the palliative care team steps in, she said. “At that point, they feel like, ‘Wow, I’m finally with somebody who really and truly cares. I’m finally with somebody who is not going to abandon me.’”
Wish fulfillment
Palliative care gives nurses a tool to help in advocating for patients who decide they don’t want to continue aggressive treatment, nurses who work in the field say. In the past, nurses dealt with the situation as best they could, said Marlene Roman, RN, MSN, ARNP, CMSRN, medical/surgical clinical nurse specialist at North Broward Medical Center in Pompano Beach, Fla., and former president of the Academy of Medical-Surgical Nurses.
“The physician would say, ‘Let’s do this,’ and the patient would tell me, ‘I really don’t want to have that done,’” Roman said. She would tell the patient, “You need to talk to your doctor, you need to tell him no.” Sometimes, the physician would take it personally because he or she didn’t want to lose the patient, Roman said.
She recalled taking care of a renal patient about 20 years ago who was brain dead because the physician could not let his patients go.
“We could have probably saved the family days’ worth of coming there every day, knowing there was nothing we could do,” she said. “It doesn’t seem like we have those kinds of issues as much now.”
Part of the work of the palliative care team is supporting physicians who have a difficult time letting a patient go, said Alina Egerman, RN, MA, CNS, BSN, clinical nurse specialist and coordinator for the supportive care team at Providence Portland Medical Center. “That’s all they know. That’s what they do best,” she said. “We help them see that death isn’t the enemy and that they haven’t failed.”
Some of the physicians at her hospital jokingly refer to the palliative care team as the “Death Team,” she said, and tell her, “Go away, we’re not ready for you yet.” She responds, “We can do a whole lot more than just be here at the end.”
Many palliative care nurses believe palliative care, whether by a team or an individual nurse, should begin at the time of diagnosis. Most patients seen by the palliative care team at UCSF are unresponsive, and the team must figure out from their families what their wishes might be, said Julie Koppel, RN, BSN, acting patient care manager on the general medicine unit of the UCSF Medical Center.
It’s important to educate the public and health care professionals to understand that palliative care “doesn’t mean the end of life is just around the corner,” she said.
“Every nurse should be better informed because regardless of who your patients are, some will need palliative care,” Ferrell said. Doctors break the bad news to patients, she said, “but then they leave the room and who is left? It’s going to be the med/surg nurse at 4 in the morning. That’s when the patient is going to look at the nurse and say, ‘You don’t think I’m dying, do you?’ Or, ‘My doctor said I had a tumor. I’m so glad. I thought it would be cancer.’”
When UCSF started its palliative care program, the staff did not embrace it immediately, said Dee Campbell, RN, BSN, assistant patient care manager of the general medicine unit. “It sounded really heavy, and who wants to deal with that all the time?” But nurses now find it one of the most rewarding parts of their work, she said.
“It’s one area of nursing where you can really make a difference.”
One of the most memorable deaths on the unit was that of a young woman in her early 30s who had been diagnosed with cancer, said Campbell and Rose Moore, RN, BSN, a clinical nurse educator. She had gone through chemotherapy and was in remission when she became pregnant. During pregnancy, the cancer returned aggressively, but the woman refused treatment, fearing it would endanger her fetus.
After the baby was born, the woman went to the med/surg unit to restart chemotherapy. But the cancer had progressed beyond treatment, and she ended up in intensive care. The family decided to stop treatments and the woman returned to the floor as a comfort care patient. Although she was comatose, the nurses brought her baby to her every hour and laid it on her chest. When the baby was not with her, they put the baby’s clothes on her so she could smell her child.
Friends came into her room and played guitars. Often, she had as many as 20 visitors in her room, sitting on the floor and talking. Her husband and other family members kept vigil at night. When she died, they covered her bed with rose petals. A year later, her family sent the hospital staff a picture of the child, happy and doing well.
Before palliative care, Campbell said, such a death experience probably wouldn’t have happened. “Maybe one enterprising nurse could have managed it,” she said. “It would have been really heroic.”
Now, it is simply part of the system, Campbell said. “It has to happen.”
Elisabeth Kubler-Ross | 1926-2004
Elisabeth Kubler-Ross, a psychiatrist who revolutionized the way much of the world looks at terminally ill patients with her book On Death and Dying and later as a pioneer for hospice care, died of natural causes Tuesday, Aug. 24, at her home in Scottsdale, Ariz. She was 78.
Published in 1969, On Death and Dying focused on the needs of the dying and offered her theory that they go through five stages of grief — denial, anger, bargaining, depression, and acceptance.
“Those who learned to know death, rather than to fear and fight it, become our teachers about life,” she once wrote. In another passage, she wrote, “Dying is nothing to fear. It can be the most wonderful experience of your life. It all depends on how you have lived.”
Kubler-Ross moved to Arizona nine years ago after a series of strokes left her partially paralyzed on her left side. In a 2002 interview with The Arizona Republic, Kubler-Ross said she was ready to die.
“I told God last night he’s a damned procrastinator,” she said then.
Kubler-Ross wrote 12 books after On Death and Dying, including how to deal with the death of a child and an early study on the AIDS epidemic.
“She brought the taboo notion of death and dying into the public consciousness,” said Stephen Connor, vice president of the National Hospice and Palliative Care Organization.
In 1979, she received the Ladies’ Home Journal Woman of the Decade Award. In 1999, Time magazine named Kubler-Ross as one of the “100 Most Important Thinkers” of the past century.
Born in Zurich, Switzerland, Kubler-Ross graduated from medical school at the University of Zurich in 1957. She came to New York the following year and was appalled by hospital treatment of dying patients.
“Whoever has seen the horrifying appearance of the postwar European concentration camps would be similarly preoccupied,” she said.
She began her work with the terminally ill at the University of Colorado Medical Center in Denver, and was a clinical professor of behavioral medicine and psychiatry at the University of Virginia in Charlottesville.
Kubler-Ross began giving lectures featuring terminally ill patients, who talked about what they were going through. That led to her 1969 book.
“Dying becomes lonely and impersonal because the patient is often taken out of his familiar environment and rushed to an emergency room,” she wrote.
“He may cry for rest, peace, and dignity, but he will get infusions, transfusions, a heart machine, or tracheostomy. ... He will get a dozen people around the clock, all busily preoccupied with his heart rate, pulse, electrocardiogram, or pulmonary functions, his secretions or excretions — but not with him as a human being.’’
The most important thing Kubler-Ross did was to bring death out of the dark for the medical community, said Carol Baldwin, a research associate professor of medicine at the University of Arizona who also worked as a nurse in one of the nation’s first hospices in 1979.
“She really set the standards for how to communicate with the dying and their loved ones,” Baldwin said recently. “Families learned that it’s not a scary thing to watch someone die.”
Kubler-Ross is survived by her two children, Kenneth Ross and Barbara Lee Ross, and two granddaughters.
In a 2003 Associated Press interview, her son said that his mother, in her final months, was reaping the benefits of the movement she helped start, finding comfort in the constant companionship and dependable care of a group home.
“We get letters and e-mails from around the world,” he said. “There’s people who say, ‘I was going to kill myself’ because they’ve lost children or their husband or wife, and they read her book and it gave them a sense that they should go on.”
Associated Press