The word palliative comes from the Latin pallire which means to cloak. It means to alleviate symptoms or to make something less severe. Palliative care has been a quiet movement which surfaced as patients, families, and health care workers grew more and more uncomfortable watching their loved ones suffer for the sake of healing. The idea to cure at any cost has been ingrained into the psyche of our poor doctors. They are expected to figure out what the disease is, and treat it appropriately. If that doesn't work, they try something else. This process continues until all hope is lost, and the family is informed that nothing more can be done. They then, theoretically will kum by ya at the bedside, and kiss their loved one goodbye. This is a nice process on paper, and makes sense as you read it, and yes, you may even be lured into it's simplicity, until you are the one who has to sit in that room. You sit there watching your loved one get worse and worse, lay in pain because fentanyl will cloud their mental status. They also become grossly edematous and their skin starts to weep and tear everywhere. They loose control of their bowels, and are rolled and shoved from side to side as we change their sheets and rub thick paste on their bottoms. This is really the toned down version of what we do. Honestly, I can't begin to describe some of the physical deterioration I witness on a day to day basis. Sometimes I feel like a CIA waterboarder. Patients whimpering as I roll them, begging me with their eyes to stop as I clean away the feces from their macerated skin. This is the worst part of my job - and sometimes I hate myself for it.
(I will say this disclaimer: as some poor patient deteriorates into a wretched, decomposing life form - this is not always the fault of gung ho medicine, but just crazy ass families who refuse to accept the inevitable, despite a ridiculous count of family meetings, or sometimes a blatant refusal to even visit their loved one, who they claim to care too much for to let go. Just keep them alive at any cost. This is a segway that I wanted to avoid - but stay tuned for another blogpost in the future entitled: The Whole Enchilada?)
Palliative care is in essence, the backwater cousin of modern medicine. The herbal healer compared to the Pfizer magician. In short, the roots of modern medicine that were swept under the rug as microscopes and labs replaced thousands of years of oral tradition and observation. Older medicine focused on symptom management and trying to sustain the body as it fought illness, and if the battle was to be lost, the healers provided comfort measures to extend dignity and pain management. As time has marched on, and medicine has become more complex and miraculous, the focus on medicine is now fixated on The Cure. Finding the answer at any cost, despite additional pain and discomfort. Over the past few years, the Palliative movement has been quietly growing. A sprout of revolt from standard care, which also takes into account quality of life and symptom management. It is actually the same medical picture taken from a different angle. Palliative medicine looks through the eyes of the patient and family. The brush is very broad, but covers the bases that traditional modern medicine has missed. Concepts that Palliative care investigates include:
Goals of care - Tell me about your loved one. What are your goals now? What would they be if this or this happened? Has your loved one ever talked about what they would want in this situation? How far should we go? What would you want if you were in the same position?
Symptom management - pain, nausea, vomiting, constant diarrhea, constipation, inability to eat, edema, weight loss, dementia, hallucinations, delirium, depression, anxiety, anger, fear, crazy ass family who doesn't quit, crazy ass resident who doesn't quit - they are extensive, this list could go on - I won't bore you, but you get the picture.
Patient and family support - free psychologist!
Facilitator for family meetings - actually get doctors to talk with one another - Amazing!
Interdisciplinary liaison - actually gets doctors to talk to one another - Amazing!
Spiritual Guru - Gets you to talk to, and listen to the God which has forsaken you! Lord bless a good chaplain.
As you can see Palliative Care takes into account all if those things that people really want, but are afraid to ask for. And frankly, as Palliative Medicine continues with this incredible scope of practice, it is destined for failure in many ways since it encompasses so much. This is really a philosophy that will, over time, be integrated in modern medicine. I don't blame the doctors or other care providers for not being able to cover all these bases, it is now just starting to be routine in MD training, and there are many old school Attendings who are threatened by Palliative Medicine, and sadly, are a very poor example for their young Jedi. The culture is changing however, and soon, I foresee that Palliative measures will be enacted as soon as patients walk in the door.
I was talking to a resident about his patient getting a Palliative Care consult. He asked if nurses were allowed to place the consult, and why we would do it instead of the intern. I told him quite sincerely that sometimes residents and interns are "idiots". Nurses say over and over, "this guy is super sick and going to die here; Palliative Care maybe?". Doctors say: "It is too soon to tell, we are talking to the family, it's not time for Palliative Care." Essentially, they don't want to admit defeat, and really I think they don't want to deal with sticky, emotional situations. I explained that as nurses, we deal with a lot of shit already, and while we are trying to keep a patient alive and get all of our obnoxious charting done, we are not the right people to be an effective emotional support for our families. Taking care of sick people is hard. Nursing school barely trained me to handle a bedpan, much less a grieving soon-to-be widow and her disabled daughter who brings her drunk husband and his biker friends. With all the crying, questions, begging for a miracle, and "can I get a coke, his feet look cold, why are you giving him this medication, by the way he is allergic to pollen, why is he so swollen, I don't think he would want this...." - I am spread super thin. I am awesome, but I can't deal with all that! Give me a little back-up!
Give me a liaison to the emotional realm. The phenomena of human disconnect in the ICU and hospitals in general is very interesting and will be discussed in a later essay - but the point is that in order to function in such a visceral and intense environment, nurses and health care staff must essentially "turn-off" that state of "presence" which is in tune with a family's emotional and spiritual needs. I couldn't function with all of my physical nursing duties, as well as being a genuine soft shoulder to cry on - the RAS section of my brain may literally catch on fire or something from so much overload.
"Sometimes the Palliative Care consult is a cry for help from your nurses" I tell Dr J. (Cute resident who is a boy dressed in man's clothing)
He asked aloud if it was his own ego that was offended by a request for Palliative Care. Maybe he was hesitant to order the consult because he was afraid to admit failure... (Umm, duh) Maybe was because he didn't want to look stupid in front of the other doctors...(Umm, duh).
"OK, then. When is a Palliative Care consult inappropriate?" He asks me. Together we determined a PC consult may not be beneficial when:
- You already have an excellent primary doctor, like an oncologist who knows the family well, and whom the family trusts.
- You have a crazy ass family who doesn't trust anyone, and thinks you are trying to kill their loved one anyway, and then you send in the "death team". This is the family who will believe in a miracle till the bitter end. It sucks.
- You have a very well balanced family who has excellent communication skills and is adaptable to the changing situation. (1 in a million)
Overall, I can feel the current of medicine is changing. I envision true interdisciplinary rounds where Palliative Care, social work, dietitians, pharmacists, and nurses are utilized as resources and equals with the doctors, and a holistic patient picture can be developed. It is easy to imagine, because it is how it should be; it is the only thing that makes sense - and the catch is, it would be so much easier, and would save time, money, and would encompass a real view of our patient's health and wellness.
In the hospital, we are treated only for physical distress, and spiritual crises are passed over quietly. Patients avoid talking about this as our culture does not embrace emotional needs. In the real world, we all are getting Palliative Care in one way or another. We seek out therapeutic friends, who tell us how it is. We self medicate with chocolate. We go to the doctor when we are sick. The difference is, we choose our therapies, and we know what we need when we are outside the hospital. It would be nice if our patients were allowed some alternative and satisfying options that addressed all of their human needs, not just the physical ones.