by Rebecca Gagne-Henderson PhD, APRN, ACHPN
Who is your customer? Your company, a hospital you work for, the consulting physician? Another way to ask this is: Where does your allegiance lie?
Palliative care has changed. When I started, it was a wild and woolly new frontier. You had to put your holster on your hip and stand between Western Medicine and the vulnerable dying patient. Sometimes you had to stand between the unreachable hopes of the family for a cure and the dying patient. It was all about culture change.
Strangely, it has metamorphosed into “a service”. The question is… whom do we serve? A consultative model would dictate an “etiquette” to ensure future referrals. Of course, there is some pragmatism related to this approach. If you do not get referrals, your program dwindles.
A case in point is oncology services. This is a model of palliative care collaborating with oncology that provides “curative” or “restorative” measures whilst providing symptom management. How can the palliative clinician balance on this tightrope of serving the patient and serving the master (the oncology service)? It is a delicate, if not impossible endeavor. I am still waiting to see a palliative service closely associated with an oncology service that didn’t serve as a handmaiden to the oncologists. Please see my blog Palliative Chemotherapy: An Oxymoron https://www.pallimed.org/2016/08/palliative-chemotherapy-oxymoron.html.
When I wrote my blog about palliative chemotherapy in 2016, I anticipated that only a few fellow palliative peeps would see it. I never thought it would be picked up by SmartBrief, but it was, and many saw it. I made several enemies at a large ivy league hospital’s oncology service, even oncologists whom I knew and respected, and I thought the respect was mutual. Soon after my post was published, I phoned an oncologist “colleague” about a shared patient. She said, “Well, hurry up, my waiting room is full, and half of them are “palliative chemotherapy” patients. I explained the situation of our patient, and she replied…” let’s rap this up because I have a waiting room full of patients and half of them are palliative chemo-therapy patients. I said, “Well then, yes, you should go and see them because that is half of your income”. She reported me to my “superior”.
I recently had a patient who said he no longer wanted his “palliative chemotherapy” for his stage four metastatic terminal cancer because it made him feel ill and very fatigued. I asked him about his last encounter with his oncologist. He told me that he told the oncologist he didn’t want to spend the rest of his days feeling ill and tired if, in the end, he would die anyway. The oncologist talked him into continuing the chemotherapy at half the dose. I wonder if the patient will only feel half as ill. I wonder if the chemo will now only kill half as many cells. Mainly, I wonder if the oncologist will cut half of his bill.
After one week at a job as an inpatient palliative provider in an academic center, I was asked not to come back. Why? Because I had the temerity to question a male critical care physician surrounded by his doe-eyed residents after he told an advanced ALS patient who couldn’t even cough and could only speak in a whisper that he was going to intubate him to place a PEG tube. The sister asked, “Isn’t there another way to do this?” The physician said, “Yes, but we are going to do it this way”.
I didn’t object to the PEG placement. What I did do was warn the patient that if they were to be intubated, they may not be able to be weaned and would have to remain on the ventilator. The patient ended up with an interventional radiologist placing the PEG, sparing the patient from intubation but ensuring my placement on the MD’s shit list. Oh well, I won the battle and lost the war. I got the boot, and it wasn’t a palliative boot.
Nevertheless, I had at least a dozen patients whose symptoms were managed, advanced care planning put in place, and emotional suffering eased by my presence. These were examples of how excellent and bold palliative interventions can change the trajectory of the end-of-life experience. I know I made a difference for that ALS patient.
Regardless of the ramifications, our first and only duty is to the patient. I have always said that you must know how to take it on the chin to do palliative care well. Putting the patient first is also the best way to serve the organization for which you work. In the long run, the patients and families we serve will do wonders for the organization’s reputation.
When you are hired by an entity, and they pay you for your time, just exactly what are they purchasing. They are paying for an ethical and skilled clinician. They are not purchasing your license. They are not purchasing your soul. Remember what happened to Michael Jackson when he bought his physician’s license? I once heard a palliative medical director say that if she didn’t get a complaint about a clinician every quarter, she knew they were not doing their job properly. That was a relief to hear.
In the end, after self-reflection, tears, and frustration, I realized that I would not change my actions. I am still seeing patients and am looking to grow my outpatient practice. You can’t keep this wild and woolly palliative provocateur down. Our palliative patients need us in the fight.