By Elizabeth Rosto Sitko
When a patient is suffering from a serious illness or chronic condition, palliative care can help the patient and family with symptoms such as pain, stress and confusion. Studies show palliative care not only helps people feel better, but it also helps them live longer by improving mood, energy and well-being.
Not every patient who qualifies for palliative care, however, takes advantage of the benefits it can bring, and champions of palliative care are trying to change that. Nurses are key to a successful palliative care program because they are the frontline providers for patients in need of comfort care.
Geropalliative care, as it is often referred to when treating the elderly, involves the thoughtful application of what can and should be done to avoid needless suffering and to enhance quality of life for all older adults.
“What we’re really trying to do is help patients and families during the last years of life, irrespective of their disease state,” said Deborah M. Conley, MSN, APRN-CNS, GCNS-BC, FNGNA, gerontological clinical nurse specialist for the Nurses Improving Care for Healthsystem Elders program and AgeWise director at Nebraska Methodist Hospital, Omaha, Neb.
“We talk to patients and families about how they’re feeling physically, emotionally and spiritually,” said Jay Horton, PhD, ACHPN, director of the Palliative Care Consult Service, The Brookdale Department of Geriatrics and Palliative Medicine, Mount Sinai School of Medicine, New York City. This is for patients at any stage of serious illness, along with curative treatment, he said.
Horton said patients and families often have questions. They may have a range of available treatment options and are not sure which to choose. “We can help patients and families articulate what their goals are for treatment and what values are important to them,” he said. “We help them understand what a good match would be between their goals and the available treatment options.”
The nurse’s role
Because nurses are direct care providers, they can identify patients in need of palliative care. Through its extensive array of resources and learning modules, NICHE, a nurse-driven program based at New York University’s College of Nursing, educates nurse leaders to advance palliative care.
Nurses are well-positioned to lead a palliative care movement, said Barbara Bricoli, MPA, NICHE managing director. “Palliative care aligns with basic nursing tenets, which include caring for patients and their families regardless of their age, culture, socioeconomic status or diagnoses,” she said.
“If all nurses in all settings had the training, knowledge and skills they need to practice palliative care, many patient needs could be most effectively met by nurses,” said Diane E. Meier, MD, FACP, director of the Center to Advance Palliative Care and a professor of geriatric and palliative medicine at Mount Sinai School of Medicine.
“Not only nurses, but also doctors and social workers, have had little training in how to deliver high-quality palliative care and we’ve got to fill that gap,” she added.
One success story in this area comes from Nebraska Methodist Hospital in Omaha. As a result of its experience as a NICHE site, Nebraska Methodist Hospital was one of six selected by Massachusetts General Hospital in 2010 for the AgeWise Geropalliative Care Nurse Residency — a population-specific, six-month program that provides education through transformative learning about geropalliative care.
To be considered as a potential site, hospitals had to meet several criteria, including holding NICHE and Magnet designations, and be affiliated with a college of nursing.
Staff, patients and families have felt a positive impact since day one, Conley said. Some of the education topics include ethics at end of life, polypharmacy, spiritual struggle, falls, cultural awareness, preventing functional decline, delirium, family conflict, pain and symptom management, patient advocacy and communication among the healthcare team.
“It’s amazing to me how energized the staff has become,” Conley said. “We see that nurses are feeling much more confident, and they are empowered to have conversations about palliative care with families and physicians.”
At Mount Sinai, the palliative care team works with the primary care team to recognize when a patient might need a palliative care consult.
Nurses may refer patients for a consult based on the following signs:
1. Patients have poorly managed symptoms. Nurses are much more likely to recognize distressing symptoms that are affecting the patient’s quality of life, such as constipation, pain, anxiety, confusion, shortness of breath or insomnia, Meier said.
2. Patients and families are confused. They don’t understand the implications of the illness and don’t know what to expect. They may have been told different things by different doctors. In cases like these, the palliative care team can step in to go over treatment options.
3. Patients keep coming back for readmissions. That’s a clue the patient has an inadequate support system in the community, Meier said. Nurses can mobilize social workers or other support services to talk to the family or caregiver and find out what the situation is and what type of help is needed, and then try to mobilize that support and resources.
Palliative care and geriatrics
With aging demographics on the rise, geropalliative care is a pressing issue. The complex needs of older adults require healthcare providers to determine the need for and to provide more access to palliative care, Bricoli said.
The largest population of Americans who have serious complex illnesses affecting quality of life consists of older adults. The need for palliative care is particularly prominent in this segment of the population.
“Because so many people over 75 or 80 have multiple chronic conditions and because so many have functional and cognitive impairment, there is an urgency in focusing on what matters most to patients and families and helping them achieve it,” Meier said. The overlap between geriatrics and palliative care is enormous, she added.
Raising awareness about palliative care to the general public is essential to strengthening palliative care programs. Because so many people use social media, CAPC has launched a public awareness campaign that will largely be driven by social media and by working with the health websites people visit to make sure they contain updated, accurate information and support materials about palliative care. As part of its expanded efforts, CAPC has launched new multimedia tools on its website GetPallliativeCare.org and its new Get Palliative Care YouTube channel. Resources include a unique educational video animation and a series of stories from people who have been helped by palliative care.
The Need to Know by NICHE series for patients and caregivers includes a recently published palliative care guide for patients and caregivers, which is available at NicheProgram.org/need_to_know.
Strengthening the curriculum
While hospice and palliative care are considered nursing specialties, advocacy groups are working on getting the concept of primary palliative care added to the nursing school curriculum that is taught to all nurses nationwide.
Palliative care is part of some nursing training, but not all, Horton said. “We’re pushing for it to be a part of all nursing training,” he said. “That includes covering pain management, symptom management, talking to patients about treatment goals and more. We’re working to get that into all nursing schools.”
Meier has been working tirelessly for more than a decade to increase the number and quality of palliative care programs in the U.S. “Palliative care and geriatrics go hand in hand,” Meier said. “There shouldn’t even be geriatrics training without including palliative care training, and vice versa.”
Thanks to the NICHE and AgeWise programs, Nebraska Methodist Hospital has had an increase in certifications in gerontological nursing, and our goal is to increase palliative nursing certification, Conley said.
NICHE is working with faculty and researchers at New York University and other organizations to increase the availability of palliative care resources and to develop more tools that meet palliative care needs across the continuum of care, according to Bricoli.
Geropalliatve care is not just at end of life, it is looking at how you can prepare for it. “Education on geropalliative care is so important because at the end of life, older adults aren’t always able to communicate their wishes,” Conley said. “If we start early and encourage discussion, then at the end of life we will be able to provide what they want.”
For more information, including educational tools, handouts and webinars on palliative care and pain management, visit the NICHE or AgeWise websites, or the following organizations:
Elizabeth Rosto Sitko is a freelance writer.
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