Planning for a good death

By Barbara Boughton

When Mary Galvan was diagnosed with breast cancer at age 37‚ it was a shock. She was young‚ healthy‚ and had no family history. But Galvan was hopeful that a mastectomy and chemotherapy would help her beat the cancer.

Eventually‚ doctors told Galvan that the chemotherapy wasn’t working anymore‚ and “it was time to be with family‚” so she moved from Orange County‚ California‚ to Grand Junction‚ Colorado‚ to be with her parents. Her pain continued to increase until she found Hospice and Palliative Care of Colorado‚ which provided Galvan with advanced pain control and support from an entire team of medical professionals: a physician‚ a nurse‚ a certified nursing assistant‚ a chaplain‚ and a social worker.

As Galvan struggled with bone metastases‚ she was no longer alone. As well as controlling her pain‚ counselors at the hospice reassured her family and helped them deal with her illness‚ especially a young niece and nephew who were very frightened by the cancer‚ says Galvan‚ now 42. The chaplain helped bolster her strong religious faith‚ and the social worker brought her scriptures on tape. The hospice even arranged for a weekly massage.

“The people at hospice have been there to listen to me and comfort me‚” she says. “With their help‚ I feel that whatever the Lord decides‚ I’m ready.”

Galvan has experienced the best of end-of-life palliative care‚ which focuses on comfort and lessening of symptoms rather than cure‚ while integrating psychological and spiritual aspects of care and offering support that will allow a patient to live as actively as possible until his or her death.

End-of-life issues and providing for a “good death” for those with terminal illness have become areas of growth and growing concern in American medicine.

“All of us will have a death‚ so it might as well be a good one‚” says Joanne Lynn‚ MD‚ president of Americans for Better Care of the Dying‚ a group that’s working to improve conditions for people at the end of life. “And there’s no reason that people should not live out their life with cancer comfortably and manage the end of their story with grace.”

A “good death” is one in which a patient lives with dignity‚ without pain‚ and surrounded by friends and family. It means resolving financial issues so as not to be a burden and includes clear communication between doctor and patient about medical issues and symptom management that involves family and friends in decisions.

Yet‚ many still do not achieve a good death for a number of reasons: reluctance on the part of physicians to address end-of-life issues‚ reluctance on the part of patients or families to hear the reality when it is addressed‚ or a lack of support services in many areas.

“We’re far from where we need to be in terms of end-of-life care‚ but there are some real changes happening‚” Dr. Lynn says.

The growing palliative care and hospice movement emphasizes comfort care—symptom management‚ spiritual and interpersonal interventions‚ and even financial assistance—in many hospitals and hospices. Organizations such as the National Hospice and Palliative Care Organization (NHPCO) are educating Americans about the need to talk openly about death and to prepare for it by planning ahead.

In the United States‚ there are now 3‚200 hospices and hundreds of hospitals that provide palliative care to those at all stages of illness‚ up to and including the end of life. Often this care is accomplished by interdisciplinary teams of professionals‚ including physicians‚ nurses‚ social workers‚ and clergy. They address not only a patient’s physical needs‚ but psychological and spiritual needs as well.

“Palliative care is clearly helpful to patients‚ and it should be available to anyone who needs it‚ including people who are still receiving curative treatment‚” says researcher Linda Emanuel‚ MD‚ PhD‚ director of the Buehler Center on Aging at Northwestern University‚ Chicago. “There are clear benefits of palliative care even if you’re not ready to give up the fight.”

Dr. Emanuel says the first step to approaching end-of-life issues is an open discussion between patient‚ physician‚ and family about the type of care that should be provided and what goals the patient and family have for the time that may be left.

Planning Ahead
J. Donald Schumacher‚ PsyD‚ president of the NHPCO‚ says hospice should be researched as a part of that discussion. “People often think that you have to be near death to enter a hospice‚ and they often wait until the final days to enter a hospice. So they can often miss out on much of the comprehensive care a hospice can provide‚” he says.

Though a doctor does have to certify that a patient has six months or less to live‚ Medicare does not restrict care after six months‚ Schumacher says. Most insurance plans and Medicare pay for hospice care‚ which costs hundreds of dollars a day less than either hospitalization or nursing home care for the dying.
“Financial problems are often significant stressors for people with serious illnesses‚ as well as their relatives‚” says Diane Meier‚ MD‚ director of the Center to Advance Palliative Care‚ Mount Sinai School of Medicine‚ New York.

However‚ there are ways to cut costs and not sacrifice good care. Cancer support organizations such as Gilda’s Club offer families education on how to engage diverse groups such as family members‚ people in the community‚ and fellow members of a patient’s spiritual community to help with physical care and other support issues.

If a family has difficulty paying for prescriptions‚ they can ask that a physician prescribe equivalent but affordable substitutes‚ or request “compassionate use” of a drug‚ which requires a petition to drug companies to provide medications at low cost.

Another misconception is that hospices will not provide cancer treatment‚ Schumacher says. Hospice may actually provide treatments such as chemotherapy and radiation as long as it will be primarily palliative and support the patient’s quality of life.

Hospices in this country are most often home-based‚ with members of the medical care team visiting regularly. Some hospices‚ however‚ also have inpatient hospital units. Dr. Lynn says hospices vary in the services they provide‚ so it’s a good idea for a patient or relatives to discuss the kind of care available with hospice staff.

Healing Into Death
“There are all kinds of things one can hope for during the last chapter of our life—resolution to a relationship or a trip to someplace special‚” Dr. Emanuel says. “When we do some soul searching‚ we can find ways to make our remaining time precious. The fact that we’re mortal teaches us a great deal about how to live.”

Sarah Walsh‚ CFO of Hospice and Palliative Care of Colorado‚ recalls the case of a 32-year-old breast cancer patient who was in such pain when she entered hospice care that she didn’t recognize her two young children. Walsh arranged for advanced pain medication that enabled the young woman to spend pain-free time with her children before her death.

“I wept when she died‚” Walsh says. “Her children had lost their mother‚ but I also knew we had made her life much better in the last few months.”

Yet many remain uncomfortable with the subject of death. A study published in The Journal of the American Medical Association in February 2000‚ showed that helpful information about end-of-life care was minimal or entirely absent from 57% of the 50 top medical school textbooks.

Dr. Emanuel’s program‚ Education for Physicians in End of Life Care (EPEC)‚ seeks to bridge that gap by continuing medical education to physicians in practice on palliative and end-of-life care issues. The EPEC project has trained more than 1‚400 people‚ who have gone back to their community to educate other health professionals.

The Project on Death in America of the Open Society Institute‚ a project funded by George Soros‚ has funded the development of role model physicians and nurses‚ and to date has supported 87 faculty scholars‚ who serve as academic and community leaders in advancing palliative care. Project on Death in America has also supported a social work leadership program that encourages schools of social work and healthcare practice sites (such as hospices) to act together to enhance the role of social workers in palliative care. They also support a nursing leadership initiative to focus attention on the critical role that nurses play in the development and delivery of palliative care.

Advocating for change
Patients and families remain the strongest voice in demanding end-of-life care. “Family and patients need to realize how important it is to have an open conversation about the end of life—and talk to their doctor about symptom control and managing distress. They need to be empowered to push the issue‚ if necessary‚ and to request a doctor who can take care of these problems‚” says Russell Portenoy‚ MD‚ chairman of the department of pain medicine and palliative care at Beth Israel Medical Center‚ New York.

Pain‚ perhaps the most devastating end-of-life symptom in cancer‚ can now be managed in the majority of cases. Indeed‚ patients have the right to demand adequate pain management .

“We are becoming much more sophisticated in how we use analgesics to reduce pain symptoms‚ as well as being able to counteract the side effects of these analgesic drugs. In many cases‚ medication can be tailored to the needs of the individual‚” says Kathleen Foley‚ MD‚ attending neurologist at Memorial Sloan-Kettering Cancer Center and director of the Project on Death in America.
Cancer patients should also explore their legal options for controlling end of life. Wills‚ advance directives‚ and a healthcare proxy will give medical personnel and family clear instructions on how the patient wants to handle specific issues when he or she is no longer capable of making decisions. Whether a patient would want a feeding tube‚ a respirator‚ or CPR are all questions that should be considered prior to the time when the decision demands immediate attention.

“Designating a proxy is helpful because it’s hard to know in advance what kind of circumstances can arise at the end of life‚” says Marvin J. Stone‚ MD‚ chief of oncology and director of Baylor Sammons Cancer Center‚ Dallas‚ Texas. “There should be a clear path of decision making and directives about what a patient might choose at the end of life to avoid misunderstandings.”

A Peaceful Transition
The spiritual aspect of death is addressed by organizations such as Sacred Dying Foundation‚ which uses a network of volunteers to sit with the dying and facilitate spiritual traditions at the end of life.

“Each person’s spiritual needs should be supported—and that’s often a very individual thing. It’s important to remember that death is not a failure‚ but a transition‚” says founder Megory Anderson.

For Mary Galvan‚ effective palliative care meant she could witness the birth of her first grandchild. “She is so beautiful‚ such a doll. I thank the Lord that I was able to be here to see the birth of my first grandchild.”