By E’Louise Ondash, RN, contributor
Sept. 25, 2009 - Beverly Siebert Bridges, RN, could have used the help of a palliative care team when her husband was diagnosed with amyotrophic lateral sclerosis in April 2007. Although he lived another 16 months and didn’t want counseling, she could have used it.
“I did everything for Jim except breathe,” said the former parish nurse who lives near St. Louis. “You get so tired you don’t even know your name. Eventually I was spending $2,000 a week getting people to come in just so I could go to the grocery store and clear my head. I went to bed in tears and woke up in tears. I’m a nurse and thought I could handle anything, but when you’re thrown into a situation like ours, you are so stunned you just don’t know what to do. Palliative care would have been so wonderful to help me make a plan and find resources.”
Bridges’ experience is the perfect example of the need for palliative care throughout the “trajectory of illness,” the rate at which physical decline occurs in life-limiting conditions, says Susan Cox, RN, MSN, CHPN, president-elect of the Hospice and Palliative Nurses Association, headquartered in Pittsburgh.
“My favorite quote is ‘Every hospice patient receives palliative care, but not every palliative care patient is on hospice,” said Cox, vice president of clinical services of Hospice and Palliative Care of Greensboro, N.C. “Each trajectory is a bit different, whether it means death within days or years, but each needs palliative care. The nurse is the best vehicle to communicate this.”
Cox’s employer provides such a consultation service, she added.
“We don’t tell people what to do; we are there to listen, to understand where everyone is and what the options are,” Cox said. “[We explain to patients that] if you choose a particular path, here’s what to expect. The range is from full aggressive treatment to comfort care or anything in between.”
There is a growing need for palliative care outside of hospice, according to Carol Bemis ANP, RN, a nurse practitioner with the palliative care program at St Joseph’s Hospital and Medical Center in Phoenix. More people are living longer and developing chronic illnesses and cancer.
“When a patient receives a diagnosis of a life-limiting illness, we can be called in to talk to the patient and the family to see what the goals are,” she said. “This can work for stroke patients, those with COPD, heart failure and all those chronic illnesses we can’t fix. We can help them with advanced directives and find out what the patient wants.”
Bemis’ goal is to build a service in which palliative care nurse specialists can independently see patients in their homes under the auspices of a collaborating physician. For now, in order for nurse practitioners to get paid, orders for consultations must come from physicians or hospitals.
“I’m trying to visit more patients in their homes because there are many who can’t drive to the office or the hospital,” she said. “I’ve already spoken to physicians to get a feel for it and they are enthusiastic. They can’t wait until I’m doing this.”
The idea of waiting to provide palliative care until six months before death was fostered by the need to provide some guidelines for Medicare reimbursement, explained Judy Lentz, MSN, RN, NHA, who currently heads the Hospice and Palliative Nurses Association.
“But it has always been the philosophy that palliative care should begin at the point of diagnosis through death to 13 months after death for bereavement services for the family,” Lentz said. “Palliative care is really a whole continuum of care.”
The person with COPD is an example of one who could benefit from the continuum-of-care model. At the time of diagnosis, the patient “can keep symptoms under control. There may be exacerbations and he may be on ventilator in the hospital. But as those episodes increase, [the patient] might decide he wants to manage the symptoms at home and put into effect a DNR order.”
Palliative nurses admit that they must educate physicians, other nurses, patients and families about the purpose and benefits of the continuum of care. Just the other day, Bemis was faced with the kind of mindset that makes it difficult to spread the new gospel of palliative care. She received a request for a consultation with a cancer patient in ICU, but upon arrival, she was told that her services were no longer needed.
“I was stopped by the ICU nurse who said the oncologist was going to start aggressive (chemotherapy) and he’ll call you when he’s ready,” she said. “I told the doctor and the family that our purpose is to walk with the patient though this, but the oncologist thinks we’re just hospice care, and the family said no (to our services).”
Doctors and other health care providers don’t fully understand that “hospice care is actually under the umbrella of palliative care, not the other way around,” Bemis explained. “Anyone with a life-limiting illness can benefit from palliative care. We treat for comfort. That means that even if someone wants aggressive care like chemotherapy, we can still help.”
To learn more about palliative care nursing, visit the association’s Web site at http://www.hpna.org/. To learn about the National Consensus Project for Quality Palliative Care, visit www.nationalconsensusproject.org.
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