Unfortunately, this isn't always true.... http://news.nurse.com/article/20100712/IL02/307120025

After more than 10 years, Ann Kotnour, RN, is still troubled by the death of her sister, who had multiple sclerosis and spent the last three years of her life in nursing homes, too ill to communicate. Her family agonized over whether she would have wanted to proceed with treatments that kept her alive but could not make her better.

Kontour, who works in the cardiac cath lab at Gundersen Lutheran Hospital in La Crosse, Wis., wishes her sister could have been involved in discussions about her care — whether to continue treatment, what that treatment might mean, and examining other options, such as palliative care. “We always questioned, ‘Did we do the right thing?’” she says.

Despite the uproar over “death panels” and “pulling the plug on grandma” during debates on healthcare reform last summer, evidence from studies and anecdotal information show patients and their families appreciate — and in some places expect — good end-of-life-care counseling and planning with their healthcare providers.
If anything, many families and patients think hospice and other end-of-life support care is offered too late and would like more planning, says Marlene Sheehy, RN, BSN, CEO for MT Care Navigators, a care-management service based in Methuen, Mass. “It needs to be offered well in advance,” she says. “We need to get end-of-life care to people much sooner than two days before they are ready to pass on.”

Her observations are reflected in research from the federal Agency for Healthcare Research and Quality that showed patient preferences for end-of-life care are often not known, and that even when a patient had an advance directive — a legal document providing instructions for care — often physicians and family members did not know about it, or were unclear about the patient’s wishes. The studies also show that when patients understood end-of-life care planning, only 5% said it was too difficult for them, and that more than one-third would be willing to discuss it if a primary caregiver brought it up with them.

As the caregivers at the bedside or care managers for a chronic illness, nurses are often in a unique position to initiate, suggest, or refer patients and families to advance-care planning, says Linda A Briggs, RN, MS, MA, an ethics consultant and associate director of Respecting Choices, the end-of-life care planning program at Gundersen Lutheran Medical Foundation Inc. Part of Briggs’ work includes training health professionals in guiding patients through advance-care planning. Like many other healthcare providers, including physicians, nurses are often uncomfortable with end-of-life discussions, and fear patients don’t want to have them, she says. “This is not only our research experience but our clinical experience. When you don’t feel skilled at doing something, you tend not to do it.”

When nurses learn the skills, she says, “they become adept at identifying a patient who is in need, initiating conversations with them, referring them to people who can help them more.”
In La Crosse, more than 90% of patients who have died had an advance directive on file, about double the national average, in part because of a community-wide campaign to raise awareness about end-of-life planning. Patients at both the area’s hospitals, as well as clinics and nursing homes are routinely offered help with advance-care planning if they wish it. Healthcare professionals, chaplains, and social workers are trained as facilitators who ask detailed questions and help patients articulate their wishes to family members and providers.

Good advance-care planning involves much more than filling out a form, Briggs says. It should include healthcare providers and the patient’s family. Patients need to understand their illness and their options — that they can have comfort care, or that certain treatments may have side effects, or may prolong life without improving it. These discussions are especially important at certain critical times, such as when people are diagnosed with a life-threatening illness, a chronic condition worsens, or elderly people become more frail, Briggs says.

Facilitators work with physicians and other healthcare providers to encourage patients to choose a healthcare proxy — someone they trust to make decisions when they are too ill; and help them complete a document explaining precisely the kind of care they want. The documents are available to healthcare teams through an electronic record system. The process is very patient-driven, Briggs says. No one is forced to complete an advance-care plan, she says, but most want to. After the plans are complete, patients are encouraged to revisit them, particularly if their conditions change.
Nurses who manage patients with chronic illnesses or those who see patients hospitalized are often the first to notice someone is at risk for a serious complication, say those who work in end-of-life care. A good opening question for such a patient might begin, “If there is a complication from your illness, and you are unable to communicate, what kind of care do you want to have?” Or, “What do you think is happening to you? How has your life changed?”

Once patients start to think about their end-of-life care, they start asking their own questions, Briggs says. “They say, ‘What are my options? What would happen if I did this?’” Recently, she worked with a patient whose kidneys were failing, and was considering dialysis. He had to make his decision within two or three months. When she met with him to talk about his future care, he told her, “All I know is, I don’t want to go on dialysis.” She explained he would die if he didn’t go on dialysis, and talked about what dialysis would be like. They talked about hospice and about palliative care. They also talked about starting dialysis, with the option to go off. Then they talked about at what stage he might want to go off. His wife took part in the discussions. He hasn’t made a firm decision yet, Briggs says, but is leaning toward trying dialysis.

At Massachusetts General Hospital, Boston, Adele L. Keeley, RN, is part of a pilot program to include palliative care as part of ICU treatment options. Patients who come to Mass General receive “everything that this country has to offer in terms of critical care,” says Keeley, nursing director of the medical ICU.

As part of the project, some Mass General ICU nurses have become palliative care champions — following the Magnet model — who receive training in end-of-life care, then promote the concept to their colleagues, Keeley says. The ICU is open to families, including children, who may visit at any time. Physicians or nurse practitioners from the palliative care team make rounds with ICU physicians and nurses, and the palliative care team joins the ICU team in family meetings to discuss how to proceed with the patient’s care.

“Get-to-know-me” posters in patients’ rooms list favorite television shows, books, or hobbies; friends and family members are encouraged to post photos and write about their loved ones, who are usually too sick to communicate. These posters help families figure out what kind of care or treatment their loved ones would have wanted, Keeley says. “They might say, ‘He’s a fighter. He would have wanted everything possible done,’ or, ‘We talked about this, and this isn’t what he would have wanted.’”
Follow-up data from pilot programs show improvements in patient satisfaction, symptom management, continuum of care, communication between family and providers, and comfort and support for families, Keeley says.

Studies show end-of-life planning not only makes things easier for patients and families, it also reduces so-called “moral distress” for the healthcare team because providers believe they are carrying out patients’ wishes.

Keeley says she often experienced moral distress when she watched her patients receive care she was not sure they would have wanted. “It was palpable when goals of care were not really understood.”

Although nurses say they are seeing a greater awareness and interest in advance care and end-of-life planning, there are still a lot of misconceptions among the public and even healthcare providers, says Pam Malloy, RN, MN, OCN, project director for the End-of-Life Nursing Education Consortium, which trains nurse educators and others in end-of-life care. “We are a death-denying society,” Mallory says. “Nobody wants to talk about it and nobody wants their doctor to talk about it.” Those who really understand the importance of good end-of-life care planning, she says, “are the people who witnessed their family members dying in a terrible way.”

When Kontour’s father was diagnosed with congestive heart failure, she was determined not to repeat the stressful uncertainty that had accompanied her sister’s death. She talked with him about what kind of care he wanted, and helped him complete an advance-care document. He wanted to die at home, and to be comfortable, he told her. He didn’t want aggressive treatment. His family understood his wishes, and when he died, they didn’t ask themselves, “Did we do the right thing?” Kotnour says. “It felt right.”

Also see this post: http://www.ultimatenurse.com/forum/f...d-death-93040/

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