Julianna Paradisi, RN, OCN, is an oncology nurse navigator and writes a monthly post for this blog.
Heart Break = Heartache
graphite, charcoal, watercolor, adhesive strip, by julianna paradisi
The disadvantage of building a nursing career in oncology is that a fair number of patients die. Despite great advances in treatment, not every patient can be saved. Oncology care providers struggle to balance maintaining hope with telling patients the truth.
Sometimes, telling the truth causes anger, and patients criticize providers for “giving up on me.” In a health care climate that measures a provider’s performance in positive customer satisfaction surveys, paradoxes abound for those working in oncology.
Providers may also be criticized for delivering care that is futile. “Don’t chemo a patient to death” and “A cancer patient should not die in an ICU” are common mantras of merit.
Maybe because I live in Oregon, a state with a Death with Dignity law, or maybe it’s the pioneer spirit of Oregonians, but I don’t meet a lot of patients choosing futile care to prolong the inevitable. In fact, many patients I meet dictate how much treatment they will accept. They grieve when they learn they have incurable cancer, and most choose palliative treatment to reduce symptoms, preserving quality of life as long as possible.
But they also ask questions: “How will I know when to stop treatment?” or “What will the end look like?” Their courage in facing death amazes me. It often brings me to tears, too.
One advantage of building a nursing career in oncology is that I feel no compulsion to hide my tears from a patient during these discussions. In the context of compassionate presence, tears represent emotional authenticity, theirs and mine.
While nurses may sometimes grieve with patients, they can also offer them therapeutic support.
I have developed a few tricks so I don’t let dying patients down during the moments they need me most. My favorite is to ask a patient what he or she does—or, if they’re retired, did—for a living. As I listen to the story, I picture what they looked like in a business suit, wielding a hammer, baking a cake, or writing a novel. I picture her at the head of a classroom, teaching children to read. In my mind I say, “I see you,” and they become their authentic self, not the person cancer tries to reduce to a recliner chair.
My other favorite thing is to ask how they met their partner or spouse. It’s even more special if the partner or spouse is there to join in. I swear I sometimes see the first light of love in their eyes, even if it was long ago.
If the patient does not have a life partner, I change the question accordingly: “What was your favorite place to travel?”; “Tell me about your dog/cat/parrot”; “Tell me about the family you were raised in.”
These questions tell me about the things that are important to patients. When I know, I am better able to assist them. For instance, I might suggest an evaluation for home O2 earlier than when it’s clinically obvious, so that there’s more energy for the patient to do some of the things he or she loves.
Nurses talk a lot about the difficult emotions caused by delivering futile care, but we don’t talk a lot about the emotional toll paid when supporting patients, particularly those we’ve grown fond of, in their decisions to forgo dialysis, stem cell transplant, additional chemotherapy, or more radiation. I know they’re making choices that are good for them, but I always cry when they tell me. I give the same level of care to every patient, but I can’t help falling a little in love with the ones who summon this kind of courage and grace. Letting them go hurts; I can’t control my heart.
However, because I love them, I do my best to help them find their own paths as they approach death, sing their own death songs, whatever they may be.
Wonderful post. I really appreciate your suggestions and plan to use them to speak to patients as more unique, worthy human beings, with a special life rather than a patient with a diagnosis. I work in ICU so I am frequently on the side of delivering futile care but I have very memorable patients who opted not to go through an open heart surgery or start dialysis and am very empathetic. Thanks!
What you’ve said is all true – we see our patients – mostly – for so long and frequently that they consider us to be their second family – we share all sorts of things that the College of Nurses in Ontario would frown at – family, vacations, friends, funny stories, off colour stories, likes, dislikes and on and on. This is what I believe makes working in our clinic very special – it’s not like working “on the floor”. Our patients (and their families and friends who accompany them) become very close to us – they WANT and NEED to know about us and vice versa. Let’s face it – some are nice and some are not so nice – just like “on the outside” – BUT – I wouldn’t have it any other way. If I got “bumped” (we’re a Union hospital – thankfully) from this unit – I’d retire. Despite all the management bafflegab and other pressures – I love my job.
This was a really beautiful post. Blessings on the work you do. I think that engaging a dying patient in talking about the interesting life they’ve led is so important to them, and you must learn some fascinating things!