Friday, February 19, 2016

All Physicians Should be Doing Palliative Care

Here's a condensed version of a recent conversation I had with a family member:
My family member: The hospital recommended that X should have palliative care. What is palliative care?
Me: Palliative care is a specialty that focuses on symptoms - helping people suffer less and feel better. It's for people who have serious ailments. Its aim is to improve the quality of life for patients and families.
My family member: I'm confused. Isn't that what every doctor is supposed to be doing?
The question pointed to a real problem. Helping people suffer less and feel better is indeed what every doctor who cares for patients is supposed to be doing. So even though I'm a fan of palliative care, we have to ask: why does it exist?

In my view, palliative care exists for three reasons - one good and two bad.

The good reason is that we've developed a lot of knowledge about controlling symptoms and improving quality of life, ranging from medicines and devices to psychological techniques to judicious use of community resources. Orchestrating all of these often requires a skill set beyond that of primary care physicians and subspecialists. Thus the emergence of a new specialty.

Bad reason #1 is the ethos of U.S. health care. It's displayed when we physicians, coming to the end of our potentially curative interventions, say "there's nothing more I can do for you." We should know better! 2,500 years ago Hippocrates taught us that our role was to:

One of my medical heroes is a clinician/basic scientist who cared for a dear friend of mine who had an incurable cancer. My friend came for an appointment after the last known treatment had failed. The physician said, "X, the best thing I can do for you now is to give you a hug." That's what he did. When I met the physician some years later and told him how much I admired him, he thanked me and immediately asked after my friend's spouse. Palliative care was part of what this physician expected of himself! I picture Hippocrates smiling and saying "you got it right."

Bad reason # 2 is time. When physicians ask each other about the most meaningful moments in our clinical careers, the stories are often about palliation - making contact, relieving suffering, bringing comfort. But the way we have structured medical roles makes it very difficult to spend the time required for giving good palliative attention. Rather than finding ways to make more humane practice possible, we've created the specialty of palliative care.

I have regular contact with primary care residents, and over the years a number have chosen further training in palliative care. It's not that they've turned against primary care - it's that they concluded that palliative care was the best way for them to practice medicine as they hoped to when they went to medical school. This is also why some physicians in practice choose the "concierge" format, in which they limit the size of their practice and make up for lost income by charging a fee for "belonging" to the practice.

But my belief that when we physicians care for patients we should all be doing palliative care isn't, alas, practical in 2016. I ended the dialogue by saying - "In principle you're right - every doctor should be doing that. But it isn't happening. Palliative care is a great idea for X. Go for it!"


Alex Smith said...

As one of your former primary care students who later trained in palliative care, I could not agree more with your understanding of our rationale for further training in palliative care. Well said Jim!

Nature and Dignity said...

Working in emergency medicine, I see patients who would not have to endure lengthy emergency department visits were the symptoms of their chronic diseases better managed.

Palliative care is a great idea but so long as reimbursement for its services remain tied to being on hospice, we will not realize its full benefits. My step-dad has stage IV CA, CHF, renal failure. While he is approaching the end of his life and very much needs palliative care, he would have to go on hospice and give up dialysis to do so which, of course, means death within a few days.


Jim Sabin said...

Hi Alex

How great to hear from you. I apologize for my delay in responding. My email program, in its pseudo-wisdom, put your comment into the "clutter" bin, and I just found it.

As I said in the post, I love the field of palliative care, but I see the degree to which many primary care physicians feel they can't apply palliative care values in their primary care practices as a tragedy. I hope that in your teaching at UCSF you have lots of opportunity to help primary care practitioners and trainees increase their skill for applying palliative care values in primary care practice.

With patients in my psychiatry practice who had severe chronic conditions like schizophrenia I felt I was doing a form of palliative care, in that we concentrated on quality of life, resilience, and courage. I hope my patients learned as much from me as I did from them!

I have fond memories of you as a resident and am proud of anything I was able to contribute to your education.



Jim Sabin said...

Dear Nature and Dignity

As I said in my response to Alex, I apologize for my delay in responding. The same notification problem kept me from being aware of your comment until today.

I'm sorry about your step-dad's health problems. But depending on what his insurance is, he may well have coverage available for palliative care. Many insurers cover palliative care for patients with the kind of problems your step-dad has apart from whether they meet the hospice requirement of death predicted within six months.

And with regard to your comment that hospice means "death within a few days," when that happens it suggests that the referral to hospice should have been made sooner. Unfortunately we tend to see hospice as a desperate last choice, rather than a as a "life affirming" choice for people who have a terminal condition.

Good luck and good palliative care for your step-dad!



Nature and Dignity said...

He has Medicare, which ties palliative care benefits to hospice.

I agree in general that patients are not moved to hospice soon enough. But for patients on dialysis, hospice means stopping dialysis; stopping dialysis will lead to death within a few days. Hospice is simply not an option for this patient population.


Jim Sabin said...

Hi Kris

The Kidneysupportivecare website speaks to the issue you've raised about the Medicare hospice benefit:

"A common misconception is that a dialysis patient must stop dialysis in order to be accepted into a hospice program. Hospice provides care and services for patients based on their terminal diagnosis. Most patients have several co-morbidities. If an ESRD patient utilizes the Medicare hospice benefit for a terminal diagnosis other than ESRD, then the patient could continue to use the ESRD Medicare benefit for continuing dialysis."

I interpret this to mean that if the "terminal diagnosis" for your step-Dad is something other than the kidney disease, dialysis could be continued. From what you write it sounds as if he is suffering but not ready to bring his life to its end, which stopping dialysis would mean.

As I said in the post you've responded to, all physicians should include a palliative approach in the care we provide. Therefore, even if your step-Dad does not have insurance coverage for a palliative care referral, it's entirely appropriate to raise the kinds of questions about symptom relief and promotion of well-being that a palliative care consultation would address with the team that is caring for him now.

Again - good luck for your step-Dad!



Nature and Dignity said...

Jim, thank you for the website! I have talked about this issue with his nephrologist, oncologist, and case manager (sadly, his primary care/cardiologist is usually unavailable and has been pushing him to end all treatment, so we rely on his other two outstanding physicians.) BTW, we are also in Massachusetts.

I will vigorously pursue this information as this is the solution that best fits his situation. The answer from everyone has been hospice = no dialysis so I don't think this aspect is well-known. It makes sense to me as dialysis comes from a different funding source (social security).


Jim Sabin said...

Hi Kris

Since from your comments it sounds like hospice care is something your step-Dad and the family want for him, but that he does not want to "pull the dialysis plug," I hope it turns out that what the website said applies to him. Compassionate end of life care is one of the hallmarks of an ethical health care system. I hope that your step-Dad's wish for hospice AND continued dialysis turns out to be possible.