In this community outreach example, the daunting challenges of treatment, and the impact on quality of life, drive the questions, “How can we better serve these patients?” and “Is there [ Read More ]
February 2016 VOL 7, NO 1
Implementing Palliative Care and Improving Quality of Life
In her presentation at the Sixth Annual Academy of Oncology Nurse & Patient Navigators (AONN+) Conference in Atlanta, GA, Amy Velasquez, RN, BSN, OCN, Palliative Care Nurse Navigator, University of Kansas Hospital Cancer Center, Kansas City, explained that palliative care can be implemented at any stage in a serious illness, including in patients with chronic cancer. “Our role is to walk with them and not be afraid to talk about what palliative care is,” she told navigators.
Her presentation focused on how to implement palliative care in an outpatient setting, the financial implications, and how palliative care can impact a patient’s quality of life. “We have a great palliative care program in the inpatient setting, but we didn’t have one in the outpatient setting,” Ms Velasquez said. “I was having people coming to the clinic, getting blood and platelets, days before they died. I thought, ‘We’ve got to do something. We’ve got to be able to talk to these people earlier about goals, and quality of life.’”
The Role of Palliative Care
She described palliative care as a safety net for oncologists, patients, family members, and nurses, and said that it is for patients who are living. “Palliative care is not for the dying. I want to be able to use this for people who are going to go through a really heavy chemo transplant. I want to be able to help them with their symptoms,” she said.
Ms Velasquez described a woman with cancer who presented with intractable pain and weight loss, which meant that her cancer was progressing. When Ms Velasquez told her that the plan was to get her pain under control, the patient asked whether she was dying. “Don’t try to talk your way out of it. Look her in the eyes, get close to her, and say, ‘Why do you think you’re dying?’ Let her talk to you about that,” Ms Velasquez said, referring to what she had been taught by palliative care doctors. “I learned that these patients with an incurable cancer—even though it’s called incurable and we know that they will at some point in time die from something related to the illness—don’t equate [their condition] to death, especially when they’ve had it chronically for 5 years.”
Ms Velasquez cited a study showing how palliative care can affect cost-savings. A group of patients who had strokes and received palliative care saved $3000 per patient daily, versus patients who had strokes and did not receive palliative care. This information helped her justify the addition of outpatient palliative care to her institution.
“The hospital wants it because it’s just the right thing to do, to help these patients survive this cancer journey,” she explained. “If I can also decrease the mortality and the morbidity rate, and decrease the amount of money that they’re having to spend on patients, and get them to hospice earlier….They really were excited to hear about that.”
She also stressed that the right time to implement palliative care upstream is at the time of treatment. Having discussions about certain issues, and implementing palliative care earlier can prevent situations where oncologists refer patients to palliative care after they have already been suffering from acute symptoms for some time, keep patients in the intensive care unit for longer than necessary, or give patients unnecessary treatments. “We talk about getting to know them and helping them with their symptoms,” she said. “Meet them after they’ve already started [treatment] so they don’t equate you with death.”
Quality of Life
Regarding quality of life, Ms Velasquez stressed that although navigators may not agree with an individual patient’s idea of quality of life, that does not mean that the patient is wrong. “I had a 31-year-old who was coming into the clinic every day.…That’s what she chose for herself, and she was okay,” she shared. “Her quality of life was coming into the clinic every day, and doing something for her cancer.”
After the palliative care program was established in Ms Velasquez’s institution, a palliative care physician began visiting patients she had identified in the bone marrow transplant unit. The patients did not need to travel to multiple appointments to see the oncologist and the palliative care physician. “In January 2015, we needed a second palliative care nurse navigator, which is just totally awesome,” she shared, adding that she went from seeing 8 patients a month, to 90 patients a month on the outpatient side. “The triage that we do gets more intensive as their cancer progresses. If that means I’m having to have more end-of-life talks on the phone, that’s when I’m talking to that patient at least 3 to 4 times a week.”
“I don’t think the outpatient program would have been successful without the training and empowering of the nurses,” Ms Velasquez said. “We walk their walk. It’s not about us, it’s about [the patients]. It’s not about what we want for them, it’s about what they want for themselves.”
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