A matter of life and death

Hospice nurse Sheila Duffy followed her calling to the very end

by Richard P. Morin

Being a veteran nurse, Sheila A. Duffy knew all too well

DAVE AND SHEILA DUFFY

she faced certain death when diagnosed with stage-four lung cancer in November of 1995. Although the diagnosis shocked and frightened family and friends, Sheila, who only months earlier had had a clear chest X-ray, remained calm.

She patiently listened to the doctors as they presented aggressive treatments aimed to prolong her life for weeks or possibly months. Though she would fight with all her strength, Sheila made it clear to doctors and those close to her she would not participate in any treatments that would inhibit the quality of her life.

Sheila said from the outset she was not afraid to die, "but just watch how I fight," says her husband, Dave Duffy. She ultimately wanted to direct the course of her death.

Sheila Duffy was a beautiful woman known to many in Rhode Island for her passion for gardening and books. Since her husband, Dave, had built one of Rhode Island's premiere advertising agencies, Duffy & Shanley, Sheila had long been in the public eye, and she used her visibility to work for several social causes in the Ocean State. Beyond her public and family life, Sheila had built a successful career as a hospice nurse with the Visiting Nurses Association of Rhode Island.

"She was an incredibly caring and dedicated nurse," says Jane Goff, a close friend of Sheila's and a hospice nurse with VNA. "She didn't do it [become a hospice nurse] for money. Her husband could certainly provide her with anything she would ever want. She did it because she loved people. And she touched everyone she worked with."

Now Sheila, a lifelong caregiver to her family and patients, was in need of care herself. Unwavering in her convictions, she chose to approach her impending death through hospice care.

To many, hospice is a place where people are sent to die. But in reality, the goal of hospice is for the terminally ill to remain in their own homes for as long as possible. In many instances, people in the care of hospice pass away surrounded by loved ones.

Since hospice care first appeared in the United States in 1974, it has been criticized for being too aggressive in trying to prepare people for death. Some have complained that hospice is too rigid, too expecting and demanding of patients and their families. Despite these criticisms, hospice is gaining in acceptance across the nation.

Indeed, most private insurance companies, including HMOs, now offer hospice coverage, and there's Medicare coverage nationwide, a benefit Congress made permanent in 1986. Most states also offer Medicaid coverage.

And this increased availability of hospice care coverage has led to a boom in hospices. In 1985, for instance, there were 1400 hospices and 158,000 hospice patients in the US. By last year, those numbers had more than doubled, according to the National Hospice Organization.

With the Supreme Court's recent ruling that individual states should determine the legality of physician-assisted suicide, the numbers probably will continue to climb as more people explore alternatives in states where physician-assisted suicide is banned, say national experts on death and dying.

"The best thing that Dr. Kevorkian did was focus the nation's attention on how poorly we deal with end-of-life care," says Dr. John Shuster, medical director of the University of Alabama at Birmingham Hospice.

In a recent American Medical Association survey, 52 percent of the 1000 Americans surveyed said if they faced a painful death, they would want a doctor to help them end their life. But when informed that hospice care could keep them comfortable and maintain their dignity, 86 percent said they would use hospice care, and only 14 percent favored physician-assisted suicide.

"The one thing we hear the most when we interview families who have utilized hospice care is that they wish they knew of the program sooner," says Dr. Ed Martin, medical director of Hospice Care of Rhode Island.

Some people in the hospice movement say the public's ignorance about hospice care is a result of the medical community's inability to deal with death and dying issues. "Many doctors are simply not accepting or don't know what hospice is all about," says Elise NeDell Babcock, author of When Life Become Precious. "That needs to change, and the only place for that to happen is in the medical schools. People want to know their options, and, in many cases, they are not receiving them from their own physicians."

Hospice care offers a team approach to providing quality of life for the terminally ill. There are nurses, physical therapists, social workers, chaplains, and doctors, all of whom work with patients and their families. Of course, the first priority of hospice care is always to stabilize a patient's pain and other symptoms of discomfort, such as nausea, sleeplessness, depression, anxiety, and confusion.

"Once we get the pain under control, they eat better, sleep better, and often their depression lifts," says Goff. "We know we are not going to cure them, but we can make them comfortable."

After this, patients and their families are encouraged to discuss end-of-life issues and to heal old wounds. "One of the key things is helping people be pain-free so they can take care of any unfinished business," says David Rehm, president and CEO of Hospice Care of Rhode Island, the nation's third oldest hospice program. Social workers work with family members to begin the bereavement process and to emotionally prepare for the next stages in their life.

While hospice care is a highly flexible approach, leaving it up to patients and their families to decide what their quality of life should be, hospice workers agree that it is not for everyone. "But in my experience, hospice patients often feel that their last days become the best days of their lives. And hospice nurses help achieve that," says Sandra Hooper, director of adult services for VNA of Rhode Island. And Hooper should know -- her own father received hospice care in the last days of his life.

Sheila Duffy was determined to enjoy the last days of her life as well. While she could have moved her care and treatment to Boston, as some close to her suggested, she chose to remain with her oncologist, Dr. Sundaresan T. Sambandam, in Rhode Island.

"She told me right from the beginning, `You are not going to be flying me all over the world,' " says Dave. "She saw a very spiritual side to Dr. Sam that she was very comfortable with."

After enjoying Christmas with family and friends, Sheila began radiation treatments. Shortly thereafter, she went for chemotherapy every three weeks. In between treatments, which lasted until May, Sheila and Dave slipped away for trips.

"Over the course of the year, we got to California twice [where their son, Jon, and his family lived], Florida twice, and 90 days before her death we were in Italy," says Dave. "The one thing she had the most trouble with dying is whether or not she would have time to bond with her (infant) granddaughter, Megan, and whether she would know her. In the end, I think she was able to do that."

Although Sheila eschewed experimental treatments, she did seek treatment from a holistic doctor in Newburyport, Massachusetts. The doctor prescribed a new diet aimed at strengthening Sheila's immune system, which had been weakened by the cancer. "Boy, did we live at Bread & Circus," jokes Dave.

The new diet and the radiation treatments and chemotherapy left Sheila in good spirits. She tended to her gardens, went to her book club and lived a seemingly normal life. But Sheila, despite the encouraging signs, never lost contact with the hospice unit, where she stopped working shortly after her diagnosis.

"Sheila was an amazing person," says Hooper. "She felt participating in hospice care at the end of her life would only make her a better hospice nurse. She talked the talk and walked the walk."

Relying on her own experience as a hospice nurse and the encouragement of those in the hospice community, Sheila began to prepare for her last days. "Unbeknownst to me, she started to develop her own way of saying goodbye to people. As an avid gardener, she would send certain people bulbs. I get letters today from friends and family saying the blooming flowers remind them of Sheila," says Dave.

"It was Sheila's generous spirit that helped her deal with her illness with grace and dignity," says Dr. Sambandam. "Sheila had a wonderful frame of mind. She was determined to have a good time. And with the support of her wonderful family and friends, she was able to do that.

"I really believe the fact that she was so giving was the reason she was spared a more horrible death," he says.

In October 1996, Sheila started to physically waver. "That is when the war started again," says Dave. Hospice care started to take a more active role, with nursing aides helping around the house and the hospice team stopping to talk with Sheila for hours.

Since the first hospice unit opened in the US some 23 years ago, doctors and hospice workers have clashed over end-of-life issues. "While hospice accepts and embraces death as a part of life, doctors often approach a patient's death as a failure. They often say they failed treatment," says Babcock.

Shuster says technology has also played a role in a doctor's tendency to dismiss hospice care. "Doctors, and in many instances families and patients, believe that with all the technological advances our society has seen that there is always something else they can try," he says.

Realizing that doctors are failing patients in their end-of-life care, the American Medical Association has launched a national educational campaign to teach the medical community about treating pain and other symptoms common in those who are dying.

Rehm says the time is right, particularly in Rhode Island, for hospices, the Brown University School of Medicine, and the medical community to come together and work toward improving end-of-life care.

"It is my goal to see that what we have learned in hospice about pain management can be transferred to the medical schools, nursing homes, and hospitals," he says.

Often, when doctors admit nothing more can be done to cure a patient, they also say there is nothing more they can do for the patient. But those in the hospice movement say much more can be done to ease a patient's pain and suffering during the last days of their lives. In many respects, this is some of the most important medical care a patient will ever receive, Shuster says.

In Sheila's case, as her illness progressed and a brain biopsy revealed several small tumors, doctors pushed for brain surgery, but Sheila "said right away, `I will not have invasive brain surgery,' " says Dave. "She wanted to enjoy her last Christmas at home, not in a hospital."

So instead of surgery, Sheila underwent an alternative 13-hour treatment. The next morning, she awoke and headed home for her book club meeting. "She vowed never to go back into the hospital, and she didn't," says Dave.

During her last days, Sheila Duffy threw a Christmas party to thank all her close friends for sharing in her life. A busload of partygoers, including Sheila and Dave, went to downtown Bristol to watch the ceremonial lighting of the town Christmas tree.

"All of a sudden, she was gone," says Dave. "She darted through the crowd and went under the tree. When I finally caught up to her, she was crying. I asked her what was wrong. She said, `This is my last Christmas.' "

Sheila enjoyed the holiday season, telling Dave it was her best ever. By mid-January, though, she had become much weaker. Sheila called a local priest and talked with him for hours. Then she spoke to Dave.

"She said she was worried about her garden and that I couldn't cook," says Dave. "On Sunday, she told me what was going to happen. She said she would lose touch, but if I had anything to say, to speak into her ear, because hearing was the last sense to go. Then she said she would appear to be in a great deal of pain. Then she would become incontinent. Then I should begin to pray."

Two days after their fateful conversation Dave was awakened one evening by Sheila's thrashing. "I administered the morphine to ease her pain. But I didn't have my wits about me. As much as you try to prepare yourself, when the time comes, you are never ready," Dave says. "I was like a soldier in battle."

It took the hospice nurses all Wednesday morning to stabilize Sheila. She was then moved to a hospital bed placed in the Duffys' bedroom overlooking the ocean.

Two days later, with the sun sparkling off the water and several hospice workers and friends gathered around her, Sheila Duffy slipped away pain-free at the age of 56. "They [the hospice workers] took a lot of the burden away," says Dave. "They were absolute angels."

In their last months together, Dave and Sheila not only discussed what was next in Dave's life and her own funeral arrangements but set up an endowment with the Rhode Island Foundation to provide funds for hospice nurse training. Today, the endowment contains more than $52,000 and continues to grow.

"I didn't realize how many people Sheila touched as a hospice nurse. I always knew how dedicated she was to those people. She would often sleep with her beeper. I would wake up and she would be gone," says Dave. "When they came to pay their respects and when the letters came from families that she helped with donations to the fund, I was deeply touched."

Hooper says Sheila was the heart and soul of the hospice care team at the VNA. "She was so dedicated to her patients. Whatever it took to make them comfortable, she did. We were just glad that we were able to do the same for her."

Though it is some six months after Sheila's death, hospice workers still check up on Dave and his family to see how they are doing, something they do with every patient.

"I know she died by her rules in her own way, in her own home and with excellent care. There was nothing sterile or hospital-like about her death," says Dave. "I know it is impossible for everyone to go that way, but if they have the right attitude and family, that is the greatest way one can leave this earth."