Best care for the dying is listening to their needs

If you think your facility provides adequate care for patients with life-threatening illnesses because it has a hospice or palliative care center, think again. "Health care professionals need to ask themselves, `Where do patients die in our hospital?' and that's where they need end-of-life care," says Sylvia A. McSkimming, PhD, RN, executive director of Supportive Care of the Dying Project: A Coalition for Compassionate Care in Portland, OR. (For more on the coalition, its goals, study, authors, and programs, see In fact, the coalition's landmark study, Living and Healing During Life-Threatening Illness, reveals most health care providers are poorly prepared to provide end-of-life care. One of its recommendations was that health care organizations "abandon provider- centered protocols in favor of flexible, community-based, patient-centered care that assists people in living the last phase of life," she says.

Yet the very concept of end-of-life care, along with its accompanying programs and services, traditionally has been determined by the provider, not the experience of patients and family members. "Traditionally, the medical community has viewed life-threatening illness as a purely medical event," says McSkimming, "but although good medical care is essential, individuals and their families - as well as the community - are the ones who manage a life-threatening illness."

Therefore, a new care delivery model must include partnerships among the three parties, she stresses. (See chart, p. 53.) How can you begin to create patient-focused care for this population? First, listen and learn, McSkimming says.

The study, based on five focus groups in 11 health care organizations across the nation, asked 407 people - patients and bereaved family members, community members, and professional caregivers - about their experiences with death or dying. (See responses, p. 52.) Former project coordinator Alicia Super, RN, BSN, OCN, a pain consultant, facilitated the 90-minute focus groups using a structured introductory script with the following open-ended questions:

· Tell me about your experience or the experience of someone you know, from the time the illness appeared to be life-threatening or fatal.

· How were you prepared for this? How did health care providers assist you? How did your prior life experiences assist you?

· What were your concerns or fears?

· What were the problems you faced? In meeting the problems and barriers, what was helpful and what was not helpful?

· Any experience can impact our attitudes and values. How has your experience changed your attitude and values?

· Is there anything else you'd like us to know?

McSkimming suggests other health care facilities can conduct similar focus groups to find out what people in their communities have experienced. The goal, she explains, isn't to amass data but to identify themes and concepts that emerge from the discussions and can serve as the basis for strategic planning. To identify primary themes, use interpretive data analysis. For example, the team asked these questions as they reviewed and coded the transcripts:

· What is this informant trying to tell us about his or her experience?

· What is the meaning he or she ascribes to the experience?

· What is health care's role in the experience?

· Which themes are repeated by the participants in this focus group category?

· How are these themes related?

The themes from the bereaved survivors group also are "full of implications for health care professionals," the report finds. "They explained how important it was to pay attention to the last days of a loved one because this is a time of opportunity to grow and heal in the spiritual and emotional realm," she says. "Yet these are often missed because professional caregivers who are focused on physical signs and symptoms can't recognize other signals."

However, the study finds forewarning families differs from offering a prognosis because the latter may be inaccurate. Survivors in the focus group also said health care professionals sometimes made the last days even more difficult. "We heard stories of how the patient's living will or advance directives were ignored, how professionals insisted on using burdensome technology to keep the patient alive, and keeping family members away from the dying loved one," McSkimming says.

The participants noted that health care professionals would acquiesce only when their efforts were fruitless. "Even after the technology was removed, family members had to tell caregivers to stop performing lab tests or taking vital signs and weights," Super says.

Part of the problem is that physicians receive little training in medical school on how to provide care for the dying. This is compounded if physicians are caught in the dogma that declares they must fix the problem, and if they can't, there's nothing more they can do, says Linda Emanuel, MD, PhD, vice president for ethics at the Ameri can Medical Association in Chicago. (For AMA's initiatives on end-of-life care, see story, p. 54.)

Shifting from "curing to caring" is neither an easy nor a linear path, agrees Sharon Melberg, RN, MPA, assistant director of hospital and clinics for general nursing services at University of Calif ornia Davis Medical Center in Sacramento. Melberg is a faculty member of the facility's West Coast Center for Palliative Care Education, which provides physicians, nurses, and social workers with consultations and seminars on pain management, symptom control, psychosocial issues, and bioethics. "We want to show them that even when no cure is reasonably achievable, there is much they can offer through caring," she says.

But even comfort measures such as pain medication, nutrition, and fluid must be dispensed with regard to the patient's and loved one's wishes. "Well-intentioned, aggressive provision of food and fluids may lead to vomiting, diarrhea, and pulmonary edema, which certainly makes the patient more uncomfortable," she says. "Caregivers need to understand that in the natural world, a dying person takes in less food and fluid in the final stages of life."

Yet, the patient's goals and values influence medical management, she cautions. "If a woman wants to live to see her first grandchild, she may prefer aggressive treatment in order to buy some time, even when that treatment is futile and unpleasant or painful. But another patient who does not have an immediate life goal may place more value on achieving comfort and a graceful death," she says.

The bottom line is that care providers must talk to patients and families about what is important and then evaluate what can be done to help them meet their goals, she stresses.

"It's important for the entire care team to function cohesively," Melberg says. "You can't have the physician saying `Wait, I heard about a study in Argentina. . .' while the social worker is preparing the family for death."