“One more question: do you want us to do everything, or do you just want palliative care.” The first syllable of the word “palliative” emphasized, drawn out, left hanging. This is one version of the five-second, halfhearted code status discussion for seriously ill patients being admitted to the hospital with either a new disease or an exacerbation of an existing one. We all have phrases that grate on our nerves, and this is one of mine.
There are similar statements that are not much better. “Well, we’ve done all we can, how about palliative care?” Or, “You know, I think it’s time to go the palliative route.” These are sometimes said as providers are backing out the door, mentally and physically disengaging from their patients.
We have a problem in our culture with discussions about end-of-life and advanced care planning. Politicians and pundits use distrust of the healthcare system to raise fears of black-cloak-wearing, scythe-wielding teams that come to ration patient care. The concept would be nearly laughable, if it hadn’t been so effective in limiting the ability to discuss advanced care planning with patients on an outpatient basis and placed a barrier to trust between patients and providers.
But patients are not the only ones who may think of palliative care as “less” care. Physicians and other providers can be just as guilty. What are we expecting patients to say when we offer to “do everything” or “just” palliative care? Hmm…if I’m feeling ill and vulnerable, would I want “everything” done, or something less? I’ll take “everything,” please. Too many of us equate palliative care with hospice care, or end-of-life care. We do our patients a disservice when we do not offer our seriously ill patients a realistic assessment of their prospects in the event of a cardiac arrest or intubation.
We do an equal disservice to our patients with the Debbie Downer code status discussion with patients in whom we deem CPR to be nearly futile yet still offer it as an option to the patient or family:
(Delivered while standing over the patient and shaking our head severely.)
“Would you want us to JAM a TUBE down your throat, BREAK all of your RIBS, give you ELECTRIC SHOCKS, so you could live the rest of your life on a RESPIRATOR?”
This is hyperbole, but I suspect that some of us have heard variations on this theme.
One of my favorite definitions of “palliative care” is from the Center to Advance Palliative Care (www.getpalliativecare.org.):
Palliative care is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms, pain, and stress of a serious illness – whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.
This definition in many ways describes what the goal of ANY intervention should be – palliative care is simply good medical care of the whole patient and family. Every one of us in medicine in every specialty should be practicing palliative care – whether the intent of our intervention is curative or non-curative. Sometimes palliative care is achieved by a major surgical procedure, a course of medication, a prolonged ventilator course, or a prolonged rehabilitation course – leading to an improvement in quality of life for the patient and family once they come out the other side. Sometimes palliative care is achieved by focusing on end of life care, treating symptoms like air hunger, pain, nausea, or delirium as patients slip away. And sometimes palliative care is achieved by treating nonphysical symptoms: helping families work through denial, guilt, anger, or mistrust of our system; a social worker helping patients reconnect with lost family or friends; a chaplain or other spiritual advisor helping patients find meaning or hope in their illness.
Our patients depend on us to lead them through the course of an illness, no matter what direction it goes. We need to compassionately care for them whether they are improving and going home, or whether they are ending their days. As hospital-based providers, we do not have the luxury of pre-existing relationships with our patients most of the time. We therefore need to choose our words more carefully as we get to know them. This requires having definitions (and connotations) straight in our own minds first. Palliative care and curative care should not be “either/or,” they should be “both/and.” Please treat them as such.
If you would to see more about end of life care as it applies to patients, check out this post from Tracy Cardin, ACNP.