By Debra Wood, RN, contributor
Despite advancements in palliative care, patients continue dying in pain,
receiving inadequate emotional support and respect, and with insufficient
physician communication, according to a recent national study. Nurses are key to
better end-of-life outcomes.
"If it weren’t for nurses, the dying experience would be a lot worse," said
Karen Kaplan, president and chief executive officer of Last Acts Partnership, a
coalition of organizations dedicated to improving end-of-life care. "If there is
going to be dignity, peace, caring and good physical care brought to the
bedside, it is usually the nurse who does that."
Researchers at Brown Medical School, Rhode Island, reviewed 1,578 deaths in
22 states, representing an estimated 1.97 million deaths from chronic illness.
Family members or other people close to the deceased were asked about the
quality of care during their loved ones last 48 hours.
Thirty percent of the patients died in a nursing home, 38 percent in a
hospital and 31 percent at home. Families of hospice patients reported the
greatest satisfaction, with 70 percent rating the care as excellent, compared to
less than 50 percent giving that grade to institutions or traditional
Half the respondents said the patient did not receive enough emotional
support. One quarter of those questioned reported that the patient experienced
pain and dyspnea, not relieved with medication; and a similar number expressed
concern about physician communication and treatment decisions. The Journal of
the American Medical Association published the study’s results Jan. 7.
"We weren’t surprised about the findings themselves, but we were about the
magnitude," said Terrie Wetle, Ph.D., one of the authors. "The thing that
surprised me most was the levels of unmet symptom relief. It has to do with
understaffing in nursing homes and institutional settings. It has to do with
people being asked to do more with fewer resources. It also has to do with
training of health professionals."
The Robert Wood Johnson Foundation (RWJF) began supporting initiatives to
improve end-of-life care nearly a decade ago, providing $160 million in grants.
Funding enabled Diana Wilkie, Ph.D., RN, at the University of Illinois at
Chicago, to develop Toolkit for Nurturing Excellence at End-of-Life Transition (TNEEL),
an educational CD-ROM, and the City of Hope National Medical Center to establish
the End-of-Life Nursing Education Consortium (ELNEC) curriculum.
"ELNEC has trained hundreds of nurse faculty and some practicing hospice
nurses in state-of-the-art, good end-of-life care," said Vicki Weisfeld, senior
communication officer at the RWJF.
Kaplan at Last Acts aims to expand ELNEC distribution to reach a broader
cross section of nurses. The organization also offers a 24-hour support line for
patients and professionals seeking help with end-of-life issues.
Last Acts has produced a best practice guide to end-of-life care called
On the Road from Theory to Practice. It discusses barriers to a better
death, appropriate use of technology, referrals, communication and continuity of
care, symptom management, financial concerns and other issues.
In addition to better professional education, the Brown researchers recommend
expanding access to hospice services, improving end-of-life care in nursing
homes with a multifaceted approach, annual reporting about the quality of care
of dying to Congress and the president, and encouraging better communication
between patients and professional caregivers about the dying person’s desires
and what is happening.
"Nurses have an amazing opportunity to help ease this very important
transition at the end of people’s lives," Wetle said. "By better understanding
strategies for palliative care, nurses are often in a position of urging
physicians to transition to hospice care."
Nurses can begin discussing hospice early in the diagnosis, before it is
needed, in a way that does not remove hope. Hospice encourages family
interaction and empowers informal caregivers with knowledge and skills, said
Donna Hall, RN, MS, M, MED, CHPN, director of education at Hospice of the
Comforter in Florida.
"The family comes away saying ‘I did everything I could do’, not ‘hospice did
everything,’ " Hall said. She encourages nurses to remain sensitive to cultural
and personal preferences about what is needed. Guide and teach but do not make
decisions for patients or families.
In an institutional setting, patients and caregivers have less control than
at home, because of the systems that are in place. Hospices can provide care in
nursing homes and many facilities, such as those in ACTS Retirement-Life
Communities Inc., Pennsylvania, frequently refer dying patients to hospice.
"In care planning, the team meets with the family, and if possible the
resident, to decide if this is the best route," said Peggy Brenner, RN, MSN,
director of education and special care programs for ACTS northern region. "Most
family members prefer hospice."
Regardless of the decision, nurses and aides make it a priority to follow
residents’ direction. Little acts of kindness can produce a huge benefit. Staff
may play classical music for a resident who enjoys it or arrange for a volunteer
to read poetry. Brenner said including the family as part of the team is vitally
important to a good outcome.
Some health systems have introduced palliative care units. At Orlando
Regional Healthcare in Florida, an interdisciplinary team works with patients to
improve symptom control and help them return home, often with hospice, or to die
peacefully. Kelly Higgins, ARNP, at the Orlando center, recommended nurses ask
open-ended questions about patients’ fears, pain and desires, saying, "I
incorporate it into my assessment. How much time does it take. Very little, from
two to five minutes."
Fewer nurses pressed to do more exacerbate difficulties associated with
end-of-life care in an institutional setting. Nurses often feel uncomfortable
with death. Kaplan suggested nurses acquaint themselves with available resources
and education and not hesitate in advocating for their dying patients or
improving the systems at their facilities.
"I think things are getting better," Kaplan concluded. "But there’s still a
long distance to go."
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