Maggie Riley is never sure which patients she’ll treat. A palliative care nurse practitioner at the Atlanta VA Medical Center, she could be called to consult with seriously ill patients and their families in any unit at the facility.
Before she can help them, however, she has to explain who she is and why she’s there. Seventy percent of the public don’t know anything about palliative care, according to a 2011 Public Opinion Research Strategies survey. And many of those who are familiar with the term associate it only with hospice or end-of-life care. Its scope is actually much broader.
Palliative care is specialized medical care for people with serious illness, according to the Center to Advance Palliative Care. Focusing on providing relief from the symptoms, pain and stress of seriously ill people, the goal of palliative care practitioners is to improve quality of life for patients and their families. Doctors, nurses, social workers and chaplains work with a patient’s primary care team to provide an extra layer of support to patients of any age, in any stage of serious illness.
“Palliative care is fully endorsed, embraced and completely integrated into a veteran’s package of benefits,” said Riley, MN, RN, FNP-BC, ACHPN. “It’s seen as essential to giving veterans excellent care. We work in tandem with primary care teams to maintain a patient’s quality of life based on his goals and what he wants to do.”
Serious illness affects a person physically, psychologically, socially and spiritually. With that in mind, Riley strives to get to know her patients and their situations so she can understand what needs she must address.
Patients are often confused about many aspects of their situation. Some can’t comprehend what they’ve been told about their disease. Others don’t understand their treatment options or know about their medical benefits. In some cases, they may be hoping for a cure that is not possible.
“That gap — between what people are hoping for and the reality of the situation — is where we work,” she said.
Guiding, supporting patients
In busy intensive care units, palliative care practitioners take the time to discuss disease states, treatment options and what can be done to help manage symptoms and bring comfort.
“Our role is to help shepherd them and support them through whatever they are going through,” Riley said.
Riley became a nurse practitioner in 2007 and passed her boards in palliative care in 2010 .
“Palliative care is about therapeutic relationship-building and interpersonal skills. It’s about listening intently, restating and reclarifying, so that you understand what a patient knows and what he needs or wants to know in order to make good decisions,” Riley said.
One of the more challenging parts of Riley’s job is getting patients to consider writing an advance directive (a combination of a living will and durable power of attorney), so their wishes can be honored as their disease progresses.
“No one wants to talk about these things, but talking about them early can relieve stress and suffering, and make sure that a veteran’s wishes are honored,” she said.
A 2010 study in the New England Journal of Medicine showed that patients who received early palliative care experienced less depression, improved quality of life and survived 2.7 months longer than those without such care.
While patients may not understand Riley’s role in the beginning, their response is almost always positive.
“The more patients and their families learn about palliative care, the more they are demanding it, which is why we are seeing the specialty grow,” she said.
The number of palliative care teams in hospitals has doubled in the last six years, according to Center to Advance Palliative Care statistics. About 63 percent of hospitals with more than 50 beds now have a palliative care program.
With more than 90 million Americans living with serious and life-threatening illnesses, the need is there and growing. Experts expect that number to double in the next 25 years.
A growing specialty
More hospitals are seeing the value in palliative care programs, not only in terms of patient satisfaction, but in cost savings, said Debbie Gunter, a nurse practitioner with Emory Healthcare’s Palliative Care Service. “Emory began its program in 2005 and it’s considered an important part of our patient-centered care,” she said.
Doctors, nurses, social workers and chaplains work as part of multidisciplinary teams at Emory.
“We’re a consulting service, but we can change the course of treatment by explaining a patient’s options,” said Gunter, FNP-BC, ACHPN.
Palliative care can alleviate pain and other symptoms while bringing comfort and community resources to make bad situations more bearable.
Gunter, who previously worked in nursing homes for nine years and later in hospice care, saw how important it was for patients and their families to know what was going on and what to expect.
“I wondered how we could get this type of thinking into primary care settings,” she said.
With nursing and medicine recognizing palliative care as a specialty and with hospitals treating a growing number of acute patients, that transition is happening. Gunter now serves patients battling cancer, stroke, emphysema, chronic obstructive pulmonary disease (COPD), renal disease or mid-stage heart failure.
Gunter’s palliative care training has given her more knowledge about the end-stage of those diseases and how to alleviate symptoms.
“We do a lot of educating people about their diseases. Someone with COPD whose oxygen has been increased may not realize that he could be faced with a ventilator decision in the future,” she said.
In some cases, Gunter will call a family meeting with primary care providers to gather information and discuss options. A palliative care chaplain or social worker may address social or spiritual issues.
Patients may not realize that they could leave the hospital with the support of hospice services at home, or that they can continue aggressive treatment, while making the decision not to be put on life support.
“We’re trained to have those big-picture conversations and ask hard questions,” Gunter said. “There are different paths patients can take, and we’re the tour guide. We want them to have the information to make the right decisions for them.”
Sometimes, what seems like a small gesture can make a big difference. Recently, Gunter got a call about an operating room patient who was dying. She was able to bring the man to a room where his family could be with him during his last hours.
“Not many people get to do what we do,” Gunter said. “I meet some incredible people, and getting to be a part of their lives is a gift. At the end of the day, I leave tired but feeling good about what I was able to do.”
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