It took me most of my fellowship year and well into my first job as a full time palliative medicine provider to come up with a succinct description of what I do.  To me, palliative care is “a helper service, working with patients (and their families) who have complicated conditions”.  I like the word complicated, because it’s not a scary word, and it’s accurate.  Juggling doctor visits, medications, tests, and life itself is very complicated for someone who is ill- so patients can relate to this word.

Part of my work is to help manage disease-related symptoms.  But my main goal is to ensure patients (and their families) have a realistic understanding of their medical condition, and to help them understand that they have a say into what is happening;  so they see that there are options.  I almost always end my short speil with “what’s right for one patient may be totally unacceptable for another patient and sometimes we in the medical community forget this”.  This last sentence is typically met with an understanding nod-of-the-head from the patient.

You will notice that nowhere in the above two paragraphs have I mentioned anything about working to change patient’s code status or limiting treatments.

This is important, and it can be a point of conflict with referring providers.  For some medical providers and lay people, palliative care teams are thought of as ‘the do not resuscitate (DNR) folks’ or ‘the pull the plug team’.  All of us in this field receive consultation requests stating something along the lines of: ‘poor prognosis, patient should be DNR, but doesn’t understand’.

Although it’s true that after meeting with us, patients/families may realize that attempt at resuscitation would not be beneficial should they have a cardiac/respiratory arrest, that’s not the goal of our consultation.  Our only agenda is to ensure that the patient’s treatments and goals are aligned.

I had one patient whose goal was ‘to stay above ground’.  His response caused me to pause for a moment, and when I asked him to clarify what ‘above ground’ specifically meant to him, he said “it didn’t matter” because as long as he wasn’t “6 feet under” (i.e., dead) he would be ok with it.  If he was in an ICU, unconscious, on a ventilator, fine.  He wanted to ‘go down fighting” and he wanted his life prolonged “no matter what”.  So, for this patient, prolonging the quantity of his life was key and as long as doctors were offering aggressive interventions it would be ok with him to continue.

But if someone says the quality of their life is paramount and they’d prefer to be home in a comfortable environment rather than being subjected to more and more burdensome treatments, then continuing aggressive care would not be appropriate.  For this patient, a transition to comfort care and a change in code status from ‘full code’ to ‘allow a natural death’ would be appropriate.

RR, a 17 yr old male, sustained a devastating traumatic brain injury as a young child. Since the accident he has remained minimally interactive, breathes through a permanent tracheostomy (but is not ventilator dependent), and receives his nutrition by a feeding tube.   His mother, Ms V, has been caring for him at home since his injury.  RR was admitted to our ICU with pneumonia/sepsis.  After several days of treatment, while he had stabilized somewhat, he was still requiring ventilator support.  The ICU team was frustrated by his mother’s consistent desire for ‘everything’- hence the palliative medicine consult.

When I came to see RR and his mother, I introduced myself as a palliative medicine provider and asked Ms V if she knew what that was.  Her response: “you are the one the doctors called to try to change my mind about my son’s care”.  I had to be truthful, so I acknowledged that that was indeed why I was consulted, and I assured her that I was here just to talk.

From our conversation, I learned that RR was not Ms V’s only special needs child.  She was caring for 2 teenage children with significant disabilities.  Ms V was a single mother, who took meticulous care of them both, at home, with assistance from her supportive church family.  Despite needing total care for years, RR had never developed a pressure sore, had been hospitalized only rarely, and Ms V felt she was able to communicate with RR.  For Ms V, life- no matter what it looked like, was precious and she believed each of her children to be “a gift from God”. When treatments could no longer keep RR alive, she would then accept his death as “God’s will”.  She fervently believed the same God that gave these children to her, also gave the doctors their abilities and interventions, so unless she felt that RR was suffering, (and she didn’t feel he was at the present time), nothing was going to change her desire to continue all active treatments, including attempt at resuscitation should he have a cardiac arrest.

When I discussed my interaction with Ms V with the ICU team, I could sense they felt my consult to be a disappointment.  But to me, confirming that the treatments RR was receiving were aligned with the goals expressed by his mother, was exactly the point of the consultation.

palliative medicine providers are not:

• The DNR team
• The team that restricts treatments
• The team that ‘pulls the plug’

We are:

• the team that works with patients/families with complicated illness
  • to help with symptom management
  • to explore their understanding of ongoing disease/medical issues, and
  • to help clarify their overall treatment goals.

And our goal is to ensure that ongoing treatments and goals are aligned.

That is our only agenda.