Palliative care is often associated with a myriad of other terms—end-of-life care and hospice, for example—that don’t accurately paint the picture of what the therapeutic plan entails, according to Rachel Dibble, NP.
The biggest obstacle that lies in palliative care, she adds, is that such specialists are often brought in when patients have failed on multiple therapies, when a palliative team should truly get involved with patients at the time of diagnosis.
“The goal for palliative care, the overarching aim, is that it is patient-centered and family-oriented for increasing quality of life (QOL), said Dibble, a nurse practitioner in palliative care at Sarah Cannon Research Institute and Tennessee Oncology. “At diagnosis, palliative care needs to be brought in. It makes it difficult for us to be brought in at the end of the disease. Patients should not be afraid of palliative care. The [term] is daunting; I am hoping to maybe change the thought of what palliative care means—it’s my hope.”
During a recent interview, Dibble emphasized the importance of palliative care at the start of diagnosis and explained its differences from end-of-life care.
Oncology Nursing News: Can you share some details of your lecture on palliative care?
Dibble: Palliative care is a specialty that is fairly new; however, the definition of palliative care has not been really laid out. There is a lot of confusion about what it is. Often, people think it’s end-of-life care or hospice. But palliative care starts at the beginning of diagnoses, and it is really head-to-toe symptom management. This includes pain, depression, anxiety, and advanced care planning in particular. It is helping the family and the patient cope with a life-changer event.
Anecdotally, how do families experience palliative care alongside patients?
It is really a collaborative approach. It is patient-centered and family-oriented care; it involves laying out goals of care and what equals QOL for some people. Some folks may say, “I don’t want my family involved in this. I am in denial, but I am going to deal with depression, anxiety, pain, constipation, diarrhea, treatment, or no treatment plan.” All of those things have to be supported.
Often, I will have patients who ask, “Can you talk to my wife about my decisions?” I really try to bring everyone together and develop a plan that is in alignment with treatment, no treatment, continuing treatment, or additional therapies, and make sure that within that things are managed, QOL is exhausted, and it’s the best possible QOL that patients can have with a collaborative approach with the oncologist. That is the idea of palliative care.
Have there been any advancements regarding symptom management?
As a clinician, you know the words, “You have cancer.” Those 3 words are life-changing events. It is head to toe, so you deal with the psychosocial [aspect] of it. Often, people have incredible financial issues, and we have patient advocates who can figure out insurance. There are resources for people who don’t have medication. All of that coordination is coupled with “Let’s manage your pain because you’re in and out of the hospital every other day, your costs are going through the roof, and that is because your pain is not managed well. On top of that, you’re not eating, vomiting, experiencing diarrhea and constipation, and you’re in agony.” When you put all of that together, that is the classic picture of a patient with cancer. You really have to think a 360 [degree approach] in addressing all of these things at one time.
What are the biggest challenges with the palliative care field right now?
From the perspective of providers, patients, or referrals, is that we are often brought into the situation late in the disease. Therefore, from the get-go of the words, “You have cancer,” a team is brought in; an oncologist, radiologist, and surgeon. And by us not being brought in at that time, but brought in much later, the patients sometimes shut down and say, “Oh, palliative care means hospice.”
People equate hospice to dying. I had someone say that their mother went into hospice for 2 days and died, and that makes sense because she probably went very late in her disease. It is a social stigma. It is not really the work, it’s getting in there at the time of diagnoses, which is the biggest challenge.
What steps can we start taking to solve these challenges?
Because it is a fairly new specialty, it is completely educating the providers. I write papers and everything I can do to spread the word of what palliative care means. I have a lot of folks going through treatment for cure, but they still need palliation for QOL reasons. In my opinion, and with what the literature says, there is an education gap. In the meantime, QOL is suffering, patients are suffering, and healthcare costs are going through the roof because they keep going to the emergency room and they don’t have that extra layer of support, which is what we are.
Should every patient diagnosed with cancer undergo palliative care or is there a subset of patients who have a greater benefit?
The ASCO Clinical Guidelines say that at diagnosis, you refer [for palliative care]. It doesn’t matter if it’s curable breast cancer or stage IV lung cancer. That is the guideline because these patients are going to have symptoms of some sort, which are going to affect their QOL. However, that is in a perfect world.
Obviously, for the folks for whom their cancer is not curative and they are going to be on therapy for years, on immunotherapies, or this is just going to be their way of life for a long time, they will probably benefit more because we are a lifeline to them. My patients know that they can call me and I will either call them back or answer the phone call. I can relay messages or work collaboratively with the cancer team to figure out what to do.