Advocating for End-of-Life Care

advocating end of life

Nurses have the unique privilege of holding the hands of the newly-born, and of the dying. Moments like this don’t punch a time clock, or watch a calendar. The arrival of a newborn is usually filled with tremendous joy—anticipation to meet the new person. However, dying is not usually looked upon with anticipation, or with joy.
The recent legislation about cancer care—finding a cure, is wonderful. However, at what cost to the patient?

Patients don’t always want to go through painful, nauseating, or stressful treatments. But, patients don’t always know their options, either. Most oncologists have a very narrow focus: curing the cancer. That’s it. I’ve met a handful over the years who go above and beyond, and actually treat the whole person, and, advocate for their patient’s comfort over the cure, though. It’s a beautiful thing to witness! On the flip-side, I’ve seen patients push themselves through a dose of chemotherapy or radiation, and die within a day or two from their cancer. Our system is failing these patients.

I was reading an article in JAMA recently, and came across an interesting quote: “Cure without compassion is an exercise in killing malignant cells, while failing to support the living person.” Wow. How true this is, when we are administering treatments to patients who are suffering with every drop. They have no quality of life left—just making it from one administration to the next. Who advocates for these patients? Well, sometimes it’s a family member or close friend, sometimes it’s the physicians, and sometimes it’s nurses.

Advocating for those suffering with a terminal diagnosis takes finesse, compassion, and the ability to be vulnerable to the backlash. Sometimes the patient doesn’t even know what their options are, and they fear upsetting their physician or family if they stop or change treatment. Sometimes patients want to venture in another direction, such as adding palliative care or switching to hospice. Sometimes, though, it’s the other way around—it’s the patient who wants to push for more chemotherapy, and it’s the physician who is saying no. In this case, advocating for the patient is the reverse.

Coaching a patient and family towards acceptance is like walking a tightrope. They trust you, you want them to continue to trust you, but if you say something they don’t like, aren’t ready to accept, or don’t have the emotional capacity to listen to—they will shut down. These type of conversations are never a one-and-done conversation. They require patience, tremendous compassion, and stepping into the patient’s world—their own perception. In these type of conversations, we, as providers, need to listen between the lines—patients do tell us, but it’s not always black and white. They tell us often what they don’t want, versus what they want. For example, “I just can’t come here for chemo anymore,” or, “this is too much,” versus, “I want to go into hospice.”
Most patients aren’t the ones to ask for hospice care—others are the ones to suggest it.
Every oncology program should have a robust palliative care program too, that walks alongside patients and families through their quest for a cure, and for more time. Patients and families need this. They need individuals to help them with the stress, guide them through the tremendous financial burden, and, of course, the symptoms. These palliative care teams should be available each day for consults, if needed—not just 2 or 3 days a week, as I’ve seen in some hospitals.

Recently, I attended a funeral where I learned the patient was in an intensive care unit for a couple of weeks, without hospice or palliative care involved, and died there.  The family was never told about hospice or palliative care as an option—and they didn’t know to ask. How sad is this? This is one of the very things hospice workers are always sad to hear—we could have made a difference.

Hospice and palliative care teams do not represent giving up. They do not represent ‘throwing in the towel.’ They are, quite the contrary. Hospice and palliative care are an extension of what the patient wants, needs, and will fiercely defend and advocate for the best care and comfort for their patients.

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Janet Belford

About Janet Belford

Janet Belford, RN, CLNC, has been a registered nurse for over 24 years, having worked in the pediatric and adult patient populations in critical care, outpatient, case management, and hospice. She is also a Certified Legal Nurse Consultant. She brings to the table a passion about patient rights, informed consent, healthcare integrity, domestic violence, patient and family education, mentoring for fellow nurses, and end-of-life care. It is part of Janet’s mission to ‘be real’ with patients and families, not shy away from ‘difficult conversations,’ and to advocate for patient rights.

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