By Debra Wood, RN, contributor
August 17, 2011 - Birth-life-death: the circle of life. While nurses continually find ways to improve care at all stages of life, death remains a taboo topic. Yet nurses strive to improve dying patients’ experiences through innovative programs, education about options and streamlining operations.
Karen A. Kehl, Ph.D., RN, ACHPN, is researching ways nurses can help meet family caregivers’ needs as death approaches.
“Nurses want to help patients and the family through it, but they need to be reminded that this is new for the family,” said Karen A. Kehl, Ph.D., RN, ACHPN, assistant professor at the University of Wisconsin-Madison School of Nursing. Kehl is researching ways to improve hospice patients’ care by better addressing the needs of family caregivers in the last days of life.
“Most people today have never been with someone who is dying,” she continued. “As more and more people are choosing to die at home, we have to re-educate people about what that looks like. It’s something a lot of hospices do well, but there is no systematic way of teaching families what they need to know.”
Kehl indicated new technologies could help nurses prepare families for the issues that come up as the person nears the end of life, including basics such as how to turn the patients and how to relieve pain when the person cannot swallow.
Hospice provides medical care and other services to patients with a six-month or shorter life expectancy. In 1982, Congress created a hospice Medicare benefit, and it soon became an accepted method of care for terminally-ill patients ready to switch from curative to palliative care.
The National Hospice and Palliative Care Organization (NHPCO) reports that an estimated 41.6 percent of all people who died in the United States in 2009 were under the care of a hospice program, up from 38.8 percent in 2008. But unmet needs remain, and people still do not understand hospice.
Dawna J. White, RN, created a website to inform people about hospice.
Dawna J. White, RN, of San Jose, Calif., aims to change that. She created a website to increase public awareness of hospice and provide information to help them make informed decisions.
“I started AllAboutHospice.org after talking to hundreds of potential hospice patients and their families and found that I heard the same questions and concerns over and over,” White said. “I try hard to inform about [hospice’s] potential benefits as opposed to presuming to tell people what is best for them. When Elisabeth Kubler-Ross published her landmark book, On Death and Dying, in 1969, she put forth the idea that patients should have the opportunity to participate in making decisions that affect their destiny — a revolutionary concept at the time. It is an idea that I think nurses should continue to embrace.”
Sue Koff, ARNP, ACHPN, has been instrumental in the creation of South Florida Palliative Medicine Specialists in Palm Beach County, Fla.
Responding to community needs
Christie Franklin, RN, BA, CHCE, president and CEO of Bristol Hospice Corp. based in Salt Lake City, continually assesses trends and services requested in the communities her agency serves and adjusts staffing accordingly. That may include adding nurses in the evening or on weekends. The hospice has set a goal of responding to all referrals within one hour and attending all deaths.
Bristol also has developed specialty programs to better serve its population, including ones for dementia care, end-stage renal disease and veterans. Franklin anticipates creating additional specialty services.
The agency follows the NHPCO staffing guidelines, which encourage hospices to analyze care delivery models, patient characteristics, the environment, acuity levels and other variables before coming up with a staffing plan. The Bristol executive team meets bimonthly to review staffing needs.
“We study what is occurring, so our staffing model is built around each community’s needs,” Franklin said.
Bristol also has invested in technology to promote care plan coordination. It uses a cellular/mobile system so nurses can electronically transmit changes in care to the aides.
Brenda Yates, RN, manager of the palliative care unit at Cape Breton Regional Hospital in Nova Scotia, Canada, and colleagues have developed a nutrition guide to help patients who have difficulty eating better manage their symptoms. The guide offers information about food options and ways to increase caloric intake. It also provides information about foods that may help patients with specific symptoms, such as difficulty swallowing, nausea or bowel irregularities.
“When a person is not feeling well, eating helps to build strength and it also provides comfort,” Yates said in a written statement. “We know that families and caregivers who prepare the food will also benefit because they are directly helping the patient. Cooking and eating are regular social activities that often bring people together. That alone will make a difference for a patient.”
Palliative care as a separate specialty
While hospice has existed in this country for about 30 years, palliative care as a stand-alone specialty has more recently gained traction. Research by the Center to Advance Palliative Care indicates the number of hospitals offering palliative care has increase to 1,568 facilities up from 658 in 2000.
“I think people will see more palliative care services become integrated into their hospitals and in the community, because there is a benefit to having a continuum of care that works efficiently,” said Sue Koff, ARNP, ACHPN, who has been instrumental in the creation of South Florida Palliative Medicine Specialists in Palm Beach County, Fla., a consultation service which opened in August 2011, after recognizing a need to serve patients who fall outside of the hospice benefit.
Linda Fraser, RN, CHPN, hopes nurses will work to educate the public about palliative care and how it differs from hospice.
“We were looking to help those patients whose physicians won’t write a hospice referral or they may be newly diagnosed, not terminal, but with a big symptom burden and lots of questions about prognosis and goals of care,” Koff said. “We’re trying to reach folks with serious, life-limiting illness to address issues regarding pain and non-pain symptom management and communication about goals of care and choices, and to help with coordination of care.”
Koff spends most of her time with patients listening to what matters to them, their goals and fears, and then aligning the medical care to what the patient considers important.
Linda Fraser, RN, BSN, CHPN, a palliative care nurse with VNA of Hudson Valley in Tarrytown, N.Y., cares for patients with terminal illnesses or struggling with a diagnosis but still pursuing curative treatments. Some of them want to avoid the stigma of hospice. She finds many patients, nurses and physicians do not understand the difference between palliative care services and hospice.
“Nurses can educate the public, because there is a large percentage of patients who could benefit from palliative care,” Fraser said. “We can help patients make educated decisions.”
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