Can you ‘graduate’ from hospice care?
When most people hear the words “palliative care,” their next thought is hospice. While palliative care is a component of hospice, it is also a separate medical specialty of care that focuses on relieving the pain and distress of serious illnesses for those still seeking cures.
In other words, people can move on from palliative care, which is not synonymous with hospice care.
“Typically patients who graduate from palliative care are oncology patients who go into remission and they stabilize,” explained Tina Soares RN, VNA of Cape Cod’s program manager for Quality of Life Management. “But it’s not just for oncology. Patients with heart failure, Chronic Obstructive Pulmonary Disease, dementia, diabetes and other progressive diseases all can benefit.”
Soares is certified in palliative care, which is a growing sub-specialty of medicine that is an accredited field of practice with evidence-based treatment plans. The palliative care team works with the specialty physician to support whatever curative or treatment option the physician prescribes for each patient.
“We do what we can to help make their life as meaningful as possible and as comfortable as possible,” she said. “When you take away the distresses, by alleviating or preventing symptoms, people do live longer. Evidence has shown that for patients who have received palliative support, their life can be prolonged.”
She pointed to a 2010 randomized trial of 151 patients with metastatic small cell lung cancer at Massachusetts General Hospital. Those who received early palliative care reported significantly higher quality of life than those who receiving standard care. They were less likely to suffer from depression and also less likely to choose aggressive end-of-life treatments. Despite that, they lived months longer on average.
“If you educate patients and their families about their disease, and work as a team to develop their goals of care, they can feel comfortable making decisions,” Soares said. “Research shows by implementing these palliative care practices, there are fewer emergency room visits and a reduction in the lengths of hospital stays. Typically, we see patients eventually transition to hospice when and if it is appropriate for them, and that’s their choice.”
A Focus on Symptom Management
The palliative care team will typically focus on the management of physical symptoms, as well as the emotional and spiritual needs a patient may have. The focus is on the whole patient and on all the the things that are going to provide that patient with best quality of life, she explained.
“The focus is really to remove or help with those distressing factors that all come into play with either a life-limiting or a chronic illness,” she said.
One of the ways the palliative care team deals with symptom management is to anticipate them before they appear, Soares said. For example, a patient going through chemotherapy may be at risk of having symptoms of nausea or vomiting, so they’ll work beforehand to attempt to prevent those symptoms from occurring while the patient is going through treatment.
Another important component of palliative care is educating the patient about their disease so the patient learns to manage their own symptoms. This education can keep the disease from exacerbating into a situation that could put them in the hospital.
For a typical patient with COPD, Soares said the first thing the palliative care nurse would do is assess shortness of breath and anxiety, and what triggers the symptoms. Next she would work with the patient to see what other symptoms are interfering with their quality of life and activities of daily living. Since COPD is a disease that affects the lungs, and patients have difficulty breathing, the care team would ensure that the patient has preventive medication and implement safety and energy conservation techniques.
COPD is a chronic progressive disease with no cure and, despite the fact that some people graduate from palliative care, patients will live with this disease for the rest of their life, Soares said. The goal is to provide optimally quality of life every day through the end of life.
Education and Planning For Your Care
Advanced care planning is the foundation and a key part of the palliative care process. Patients are educated about what to expect as their disease progresses and encouraged to think about what matters to them, choose treatments they want to pursue or what treatments they don’t want to pursue.
“A patient’s needs will change along their continuum of care and their goals of care will likely change as the disease progresses,” Soares said. “There’s fluidity in the process. Palliative care and traditional curative care can go hand in hand. As long as we keep their goals of care in mind, all the care given will benefit for the patient.”
This patient-centered care helps a patient navigate through managing a major illness, honoring the patient’s goals and wishes.
“We’re always thinking about how we can make the patient more comfortable physically in ways that will allow the patient to do things they want to do to maintain quality of life,” Soares said.