Monday, December 08, 2008

Maybe I could get excited about palliative care

---if someone would tell me what it is.

Bob Wachter describes a wonderful clinical service at UCSF---one that is well organized, delivers excellent care and is rated highly by patients, families and house staff. He calls it the palliative care service but doesn’t quite define what it is, leaving me wondering about the whole concept. Think I’m nit picking? Try asking your colleagues, or searching the literature on what palliative care really is. Good luck in getting a coherent answer.

Even the usually straightforward Wikpedia is vague, describing palliative care as something which is delivered in the context of both curative care and hospice care. So what is it, exactly?

Bob’s post is not explicit but from his title (My Patients Are Dying… And I’ve Never Been Prouder) he’s talking about end of life care. But Mount Sinai School of Medicine Professor R. Sean Morrison, MD, who has written a great deal about palliative care, said in a recent Medscape video editorial that “Unlike hospice, hospital palliative care is not dependent on prognosis.” Moreover, in an earlier NEJM article Morrison’s description of palliative care does not preclude curative care as implied by this statement: “Palliative care should be offered simultaneously with all other medical treatment.” In this recently published study the majority of patients on palliative care services were discharged alive. So, again, what is it?

The closest thing you’ll find to a definition (and it’s not really satisfactory) is something like the one in the NEJM article:

Palliative care aims to relieve suffering and improve the quality of life for patients with advanced illnesses and their families through specific knowledge and skills, including communication with patients and family members; management of pain and other symptoms; psychosocial, spiritual, and bereavement support; and coordination of an array of medical and social services.

OK. Palliation means making the patient’s illness get better while paying attention to the surrounding psycho-social and spiritual issues. It’s what we should be doing for all our patients all the time, so why does a hospital need a special service? (The focus on patients with advanced illness doesn’t really narrow things down much; most hospitalized patients have advanced illness). My reading suggests that palliative care is simply hospital medicine raised to a higher level of excellence, efficiency, organization and patient centeredness. It sounds a lot like what the Institute of Medicine has been harping at all of us to do. The idea of a palliative care “program” suggests a separate team to deliver this excellent care while the rest of us settle for mediocrity! Palliative care claims to have distinctive attributes, but they really shouldn’t be distinctive. They should be the norm.

A common thread in many descriptions of palliative care relates to the quality of communication. Discussions go beyond DNR status and whether the patient has a living will to the education of patients and families on the big picture of the patient’s health and realistic expectations concerning the limitations of treatment. This leads to greater patient satisfaction, more informed and rational decision making, and often the avoidance of ICU care, feeding tubes and other technologies which, in many patients, serve only to decrease quality of life. While these interventions are ineffective in many patients they are costly, which is probably why palliative care programs save hospitals money. Lots of money. But again, why should good communication with patients and families require a special care service?

Like so many other concepts in medicine, the word “palliative” has been hijacked. The idea of palliative care has been administratively defined by people with agendas. For clinicians it’s been an exercise in obfuscation.

The excellence and the efficiency of what is called palliative care is something to get excited about. It’s something we should all strive for. I would like to see our hospitalist program spearhead a multidisciplinary effort to take these ideas to a new level of excellence for all of patient care. But I don’t think I’d call it palliative care. I’d call it something else. I’m not sure what, but something with more meaning.

8 comments:

Christian Sinclair, MD said...

You make some good points about the variable definitions about what palliative care is. First off the word 'palliative' (or variations thereof) tend to catch people's tongues and there are not many related words in the English language to draw inferences from.

Ideally, palliative care is about symptom control with a whole person approach that includes the concept of 'total pain' (physical, emotional, social, existential/spiritual themes of pain) as espoused by Dame Cicely Saunders.

The whole person approach somewhat sets it aside from classic medical approaches which tend to be more disease focused. That is not to say that non-palliative care doctors do not care about their patients as people. But many medical professionals, patients and families would agree that medicine seems to focus more on the lab numbers and the radiology report then always taking into considerations some of the contextual issues that may impact treatment options.

In fact your skepticism of why we need palliative care specialists instead of just being good doctors with great communication skills is something that trainees ask me often. I often put the question back on them, and they feel that the medical system/culture discourages the communication and symptom control skills enough that sometimes a specialty team is needed. One to actually provide the services, but on the other hand palliative care teams serve as a reminder and educational resource about how good symptom control and communication can impact clinical care.

If you are trying to quote Wikipedia on a palliative care definition, that entry is muddied up beyond easy repair. I tried to rally some of my blog readers to fix it up to no avail.

Palliative care is not necessarily dependent on prognosis but there is some debate in palliative care about how far 'upstream' from hospice should the field reach. Right now the field has barely enough person-power to cover just those with terminal illnesses, let alone take on a population as large as chronic disease. The essence of the non-prognosis based availability of palliative care is to emphasize a concurrent care model in which a palliative care specialist may work in tandem with an oncologist, cardiologist, pulmonolgist, etc. One focusing on the disease and curative/maintenance issues, the other focusing more on symptom control and advanced planning issues. Palliative care is not needed all the time, but when symptom control is difficult it may be a very useful adjunct to a PCP or specialist.

Your last paragraph is something that many palliative care staff would like to see. Until the whole medical culture changes, I think you will be seeing palliative care growing.

Hope this clears up a few things. My co-bloggers and I cover a lot of these issues at Pallimed and you can get a glimpse of what palliative care is by perusing our 3+ years of posts.

Thanks for keeping the field on our toes.

Anonymous said...

agree with your take.

Palliative care is a movement in response to the dysfunction in our health care delivery. If primary docs and hospital docs had adequate time to address the needs of the patient (and spending that time was modeled by mentors who actually had such time) then there would be little need for palliative care teams.

But when the clinic docs are on the 15 minute treadmill, and the hospitalists have to round on their 15+ patients before they go home, something has to give. So the prolonged discussions in complex or dying patients and their families, complex pain needs, tough social situations, etc. get punted to someone else who have time to deal with it.

It could be called the "offload your time-intensive cases to us so you can keep your volumes up" service.

risaden said...

We in palliative care agree that our services provide care that, in a generic form, is what all medicine strives for: compassion, excellent prognostic acumen, expertise in pain and symptom management, and individualizing goals throught intimate and difficult conversations with patients and families. Medical providers do all of these things, with greater or lesser skills. Some of these skills are not well taught, even now, in medical schools. Hospital-based palliative care consult services have expertise that many other teams (medicine, neurology, intensivists, etc) find essential when creating the right mix of providers to do the best by their patients.

Anonymous said...

I agree that this is something all doctors/teams should be doing, but frankly they're not. Look around, and look at the data: patients with advanced illness have poorly controlled symptoms, spend a couple weeks in hospice prior to death if they're lucky enough to die at home, and should be well informed about their prognosis and options but they aren't. Overwhelmingly aren't, at least until they're imminently dying. Should everyone be doing this? Yes, but they're not, and so in stepped 'palliative care.' I agree that there needs to be definitions of what actually specialist-level palliative care doctors/teams do vs. what everyone should, but to suggest that there isn't a problem that needs to be filled is naive.

BTW, as to what to call it - what you're talking about - good luck. People have thrown out 'patient centered care' but it doesn't work for a variety of reasons IMHO.

Anonymous said...

Dr RW: I'm not sure what else you would call what most of us already know as and come to understand as palliative care. What do you think would be more meaningful? Where I work, hospital staff already associate "palliative care" with care that is patient-centered, humane, focused on relieving suffering and improving quality of life, not just for the patient but also for the family. As far as cost-savings go, yes it has been shown that palliative care does reduce health care expenditures, but I doubt that is the reason people enter this growing field. What is advocated for is care that is most appropriate for the individual patient, where often we are faced with a situation where the care is wildly inappropriate, eg brain dead pt intubated, on vent, with pressors, multiple drips, etc., or a dying patient for whom opioids are being held because the doc is uncomfortable prescribing them.
Lastly, what probably distinguishes palliative care the most from routine care, is the fact that ideally it is interdisciplinary, recognizing that even doctors are limited in scope and that patients needs go beyond what docs can provide and often require the services of a palliative care nurse, social worker, chaplain, massage therapist, physical therapist, etc., each with their own unique skillset that addresses the patient's multifaceted needs.

R. W. Donnell said...

Anonymous 2:25pm---
Your definition describes nothing more than excellent medical care---what we all should be doing---so I don't know what to call it either, other than excellent medical care. That was one of the points of my post.

Anonymous said...

Maybe we need some help clarifying this to you.
www.getpalliativecare.org
has a pretty comprehensive definition of what we do. The underlying premise is that the patient has a "life-limiting" disease (what used to be referred to as a terminal disease), but that unlike hospice, there is a role for palliative care early on in the disease course, mostly for symptom management and social & spiritual support, even as the patient receives disease-modifying or curative treatment concurrently. That is probably what Dr. Morrisson was trying to get across. Palliative care is not primary care. There are times when you would not get palliative care involved, for example, with a 20 year old patient with pyelonephritis or a 45 year old with an acute MI. I'm not trying to sound ridiculous, I'm just trying to make a clear distinction.

Your argument that palliative care is just excellent care can easily be extended to other fields of medicine. Why does the internist need a cardiologist when he/she can just as easily manage acute coronary syndrome and provide excellent care? What most people and organizations such as ABMS have come to realize is that palliative care has become a specialty just like other fields, requiring a certain level of competencies and skillsets.
Hope this helps.

Donna Preble, RN, CNS said...

Dr. RW:
I also struggle with "explaining" palliative care to the patients and families I care for as a Palliative Care CNS in Texas. Currently, because I am essentially the only staff member of the team (along with my supervising physicians - although I see the bulk of the patients), right now our Palliative Care Team IS essentially End-of-Life Care. However, I and the other members of the group that is helping to support this program would truly like for it to be more expansive. As an example, a very "tuned-in" social worker in our IMC referred a patient to me, stating - she's not hospice eligible. . .yet, but has so many health issues that she probably will be in a year or so. That patient is a Palliative Care patient.

Yes, ideally her PCP and specialists are asking her questions about health care proxy and decision-making re: resuscitation, helping to guide her about expectations re: her multiple comorbidities, eliciting her preferences for care currently and when her health declines despite adequate medical management, informing her family about the above issues, etc . . . but I greatly doubt this is the case. Which is why I am where I am, doing what I do.

Also, as it is quite possible that she may be seen by a different hospitalist and a different group of specialists each time she is admitted, I also can provide some continuity - for the patient and her health care providers.

Until such time that our health care system allows her PCP, etc to spend the time with this pt and her family to begin to discuss and to continue to discuss the above issues throughout her illness, I will be, at least in part, an important part of her care.

Yes, in many ways Palliative Care is simply good medicine, but until that kind of "good medicine" is universally applied and time and money provided to ensure it, specialist Palliative Care services will be necessary.

I do think that the one luxury I have in my role, is, simply, time. Time to sit at the patient's bedside with their family and hear the story of their illness and (my favorite part) their life and what's important to them. That is the gift I give AND the gift I receive.

That it also saves the hospital money is a bonus (well, maybe not a bonus as it pays my salary), that it helps prevents 80, 90 and 100 year olds from unnecessarily entering the ICU for care that won't benefit them and will continue to bankrupt our healthcare system is also a considerable bonus.

While what I and others do under the title Palliative Care/Palliative Medicine can be vague, it sure seems necessary.

Thank you for your very good question - the more that question is asked, the more what we Palliative Care providers do can be clarified and refined.

Donna Preble, RN, CNS
Austin, Texas