Pallimed: A Hospice & Palliative Medicine Blog

I just finished reading an interesting series of p...

noreply@blogger.com (Suzana Makowski MD) — Sat, 07 Nov 2009 14:24:08 +0000

I just finished reading an interesting series of posts on the "On Faith- A Conversation on Religion and Politics..." Washington Post blog (OnFaith: Religious Leader's Perspectives on EOLC), written by religious leaders of a wide range of faiths in response to the issue of end-of-life care or advanced care counseling and healthcare reform.

- Aseem Shukla is a Hindu Urologist and political conservative and titles his post, "Die with dignity or anguish: the choice is yours."
- Pamela K Taylor, co-founder of Muslims for Progressive Values writes about how EOLC counseling could have helped her family cope with the difficult and courageous decisions her father made.
- Willis Elliott, a 92 yo Baptist Minister contemplates "Mindful living, mindful dying."
- Rabbi Brad Hirschfield challenges the term "death panels" or even "end-of-life counseling: proposing that "compassion panels" or "compassion counseling" may be more appropriate. Perhaps even "Dignity counseling?"
- Margaret O'Brien Steinfels, former editor-in-chief of Commonweal magazine and editor of American Catholics in Public Square provides a "reality check on our finitude." She articulates how counseling on choice enhances personal autonomy.
Other contributors include a Wiccan who speaks of the sacred nature of counseling the dying, a number of secularists (including a mathematician), Deepak Chopra speaking of the potential that good care at end-of-life might provide, Gandhi's 5th grandson, Rabbi Addin Steinsalz’s differentiating preparing for death from ending life.

The shared view of the sacred nature of the final chapter of life and living and dying is shared among all these traditions and the call to us in healthcare, and - I see it, with our leadership as experts in not only curing by caring and comforting into the final breath of life - to reform the care of patients facing their mortality.
It is a diverse and thoughtful series, worthy of a glance. It is one of the first settings I have seen a collection of such different religious traditions on the politics of caring for the dying, choices at end-of-life and healthcare reform.

Thanks all for the comments. Jan thanks for the li...

noreply@blogger.com (Drew Rosielle MD) — Thu, 05 Nov 2009 15:28:16 +0000

Thanks all for the comments.
Jan thanks for the link to the reductionist article. Clearly, reductionism has been wildly successful the last 100 years in medicine, but it fails us, in a huge way, when patients start dying of chronic illnesses.
Sandy - thank you for sharing your family's story.

Anon, Since it does not say mandatory I would fi...

noreply@blogger.com (Christian Sinclair, MD) — Thu, 05 Nov 2009 06:58:37 +0000

Anon,

Since it does not say mandatory I would find a hard time to read mandatory into any of the wording here. The every 5 year limit is really to make sure it is probably not just tacked on to a regular visit for billing purposes too often, especially since it is not really needed. Much like Medicare limiting reimbursements for screening colonoscopies. If you don't have any signs of a bleed you don't need a colonsocopy every 6 months although there may be a few docs who would like to bill for one that often.

To me the every 5 year clause reads as a firebreak to rampant abuse of billing just in case a doctor wanted to bill for advance care planning every time she asked a patient "Do you have your affairs in order?" I imagine that for many physicians learning a new billing code for something that they may do once or twice a month and for which the reimbursement level has not even been set (And I bet it will probably be set low...too low to make really worthwhile to utilize).

Most physicians who see patients on Hospice dont even realize they need to add modifiers to actually get paid to see them.

Eric,

I just got my most recent JAMA and will have to read that article. I might have just skipped over it, so thanks!

I think this is great to be offered and physicians...

noreply@blogger.com (Anonymous) — Wed, 04 Nov 2009 23:41:46 +0000

I think this is great to be offered and physicians to be reimbursed for. However, I know people make the argument this is not mandatory. However, from what I am reading, it will be required. No where does it say voluntary and so one must conclude it would be mandatory. There will be more screaming about this, and at this point I would have to say, rightfully so.

After several years of interventions for multiple ...

noreply@blogger.com (Sandy Davenport RN) — Wed, 04 Nov 2009 20:01:20 +0000

After several years of interventions for multiple health problems, my 78 year old father (who up until this point in his life had always appeared much younger/stronger than his age)was left with the dialysis option. At first he was dead-set against, but when he asked us in a family meeting and we stated 'it was his decision, but we wanted him around as long as we could have him'; he agreed to try. He'd had several dialysis treatments during hospitalizations and was hopeful that he would benefit enough to 'get out in the boat, fishing, one more time.' After 2 terrible weeks and worsening strength/edema, he made the decision to stop, even though the doctor told him that meant 1-2 weeks only. We were able to get all the grandkids home to see Grandpa A. again and really had a pretty fair week and a half on hospice before he died. Even as a long-time hospice nurse myself, I still encouraged Dad to try dialysis....wish I'd been aware of this information sooner although I'm not sure a different decision would have/should have been made. Thanks for all the information that is provided on Pallimed--I find it very helpful/thoughtful/thorough. Sandy Davenport, RN

Thanks for your leadership and efforts to create a...

noreply@blogger.com (Steve Smith) — Wed, 04 Nov 2009 18:28:36 +0000

Thanks for your leadership and efforts to create a more transparent and accessible AAHPM Board, Christian. Glad you found the meeting constructive. And sorry (again) about the dog treat (-;

One more source of data on salaries. I mention it ...

noreply@blogger.com (dale lupu) — Wed, 04 Nov 2009 14:58:29 +0000

One more source of data on salaries. I mention it simply for historical purposes. AAHPM sent out a salary survey in September 2005. The results were reported in an article by Dr. Porter Storey in the Summer 2006 issue of the AAHPM Bulletin, p. 9. Back issues of the AAHPM Bulletin are available to AAHPM members in the members only section of the website.

And yes, AAHPM Business Practices Task Force has heard you. The field really wants and needs good compensation data. The Task Force is hard at work at finding a vendor to conduct the salary survey, analyze results, and produce a useful report - all by the end of 2010.

Dale Lupu
VP for Professional Development, AAHPM

I didn't even catch that you added a "d" too (I pr...

noreply@blogger.com (Eric Widera) — Wed, 04 Nov 2009 05:19:24 +0000

I didn't even catch that you added a "d" too (I probably write advanced instead of advance more often than I admit - it just rolls of the tongue a little easier.)

As for the quality measures - I just finished reading Keirns and Dorr Goolds article in the last edition of JAMA last night on "Patient-Centered Care and Preference-Sensitive Decision Making". It made me think about the tension between quality measures and individualized care plans. I have never found in my short career that a one-size-fits-all approach benefits our patients very much (whether it be an empiric drug cocktail for a symptom or "adherence" rates to a previously stated advance directive). Advance Care Planning should be a process, not a one time documentation. Any "adherence" quality measure needs to incorporate this process into its formula, otherwise it really does go against individualized care.

Ok, I'm done being picky and I'm back to being happy about the possibility of real health care reform.

Eric, My fault on the Advanced v. Advance issue ...

noreply@blogger.com (Christian Sinclair, MD) — Tue, 03 Nov 2009 18:58:46 +0000

Eric,

My fault on the Advanced v. Advance issue on this post. Never was a pet peeve of mine, because I really had not paid that much attention to the 'd', but know that you pioint it out it is an important difference in meaning, although techincally since making some of these decisions is somewhat challenging what about calling it 'Advanced Advance Care Planning'?

:-)

I too thought the QI markers were interesting and it has been something the 'death panel' advocates have pointed to as a reason that physicians will enact POLST type orders and adhere to them 'against people's wishes', just to get a 2% increase on mdeicare payments for a good QI rating on 'adherence to orders for life-sustaining treatment.'

The itneresting thing is that POLST orders are not widely implemented nationwide and I expect it would take several years for that to occur. I think the definition of any quality measure should be taken very carefully because of the "law of unintended consequences"

This is the first time that I noticed the section ...

noreply@blogger.com (Eric Widera) — Tue, 03 Nov 2009 17:42:46 +0000

This is the first time that I noticed the section on physician's quality of end-of-life care and advance care planning reporting initiative. It looks like part of the focus on quality will be the "creation of and adherence to orders for life-sustaining treatment." I know there are bigger fish to fry, but is the creation of the "order" a good measure of quality? What about just having these discussions in the first place?

By the way, we should also pass on to our elected officials that it is "advance care planning" not "advanced care planning". The bill has both terms in it (I know... picky, picky, picky).

Excellent discussion, and appreciate the continuit...

noreply@blogger.com (Jerry) — Fri, 30 Oct 2009 22:47:05 +0000

Excellent discussion, and appreciate the continuity with GeriPal.

those who fear 'socialized medicine,' probably shouldn't even look at dialysis in the U.S. which is, of course, paid for largely by our friends at Medicare.

I guess if you're gonna be really sick in this country, but don't want to deal with the usual insurance hassles, you could do worse than have end stage renal disease.

And the diagnosis qualifies the lucky holder for a regular disability check delivered direct to the mailbox by a uniformed employee of the federal government.

I appreciate your pointing out the subversive natu...

noreply@blogger.com (Jan Henderson) — Fri, 30 Oct 2009 22:27:01 +0000

I appreciate your pointing out the subversive nature of the ‘whole-organism’ concept. It was encouraging to see an article in JAMA last year on reductionism as opposed to complex systems. Now that we’ve gotten down to the level of individual alleles and find there’s no one-to-one correspondence between genes and diseases, it may force medicine to recognize both ‘whole-organisms’ and complexity. As the article states: “[T]he key obstacle to future medicine is the conflict between the reality of complexity and a reductionist approach.” (There’s a PDF version of the article, by Henry H. Q. Heng, here: http://complex.wayne.edu/caba08/CABA08_Heng.pdf )

I applaud these efforts that look at function in p...

noreply@blogger.com (Dr. Pam) — Fri, 30 Oct 2009 14:13:17 +0000

I applaud these efforts that look at function in patients--"What will I be able to do?" is a question most patients have about their conditions, but it is one that the medical profession is often slow to be able to answer. Life without function is often not much of a life for our patients.

Jay it was 85% mean age, not men. What medicolega...

noreply@blogger.com (Drew Rosielle MD) — Thu, 29 Oct 2009 02:02:15 +0000

Jay it was 85% mean age, not men.

What medicolegal concerns do you mean? I hear others say this as well but (and yes here's my gross naivete) I'm not sure what exactly a doc's legal concerns would be with asking a patient's caregiver: has anyone ever told you about what the future is likely to hold? (and then telling them.)

Pet analogies aside (and perhaps this is one that will lose currency as people are in fact doing this to their pets), the way I frame the issue is about how you would want to be treated if this was you. None of us, pretty much, would want any of this in the setting of end stage dementia, and patients say this all the time in research settings, as do family members who are going through this (if asked what would they want if they were in the same position most say no, i'd rather not be restrained and tube fed). the disconnect between what most say they would want to happen, between what family members say they would want for themselves when they have a terminal illness, and what those same loving, struggling family members 'choose' to do to their loved ones can be staggering. And my initial response to this situation, which is perhaps different than John's, is that for the most part this is not primarily 'the fault' of families. Most of the time they are doing what seems to them to be the only loving thing to do - they don't want their loved one to suffer needlessly etc. But yet there they are, and I do wonder if a lot of this is lack of them being told the straightforward, simple truth, and given real alternatives, until they are well into the whole thing.
That is probably the most idealistic I will be all month, but I've said it on the blog before during the death panel debacle: I do in fact think we have history and our patients on our side. People, the vast majority of our patients, family members, neighbors, etc. just don't want to die this way. Give the people what they want I say.

It makes me sad as well that old demented people s...

noreply@blogger.com (Jay Riseman) — Wed, 28 Oct 2009 20:57:45 +0000

It makes me sad as well that old demented people seemed to get tortured at the end of life instead of treated respectfully with dignity. Part of it is the reluctance of PCP's to discuss end of life scenarios and part has to be the medicolegal concerns we all have as health care providers. I don't mean to compare anyones loved one to a pet, but most times it seems easier for families to let the pet go with dignity rather than their loved one. Thanks for sharing this article. Just for completeness, I don't think you can have 85% men and 89% women in the same study.

RevMelinda: and they believe 'the government' acts...

noreply@blogger.com (Drew Rosielle MD) — Wed, 28 Oct 2009 00:10:59 +0000

RevMelinda: and they believe 'the government' acts as proxy decision makers for patients. That blog post spans the territory between ignorant and paranoid, a frequently visited space in the blogosphere. Seems to be a law firm specializing in suing nursing homes.

Thanks all for the other comments.
Chuck I wanted to challenge, in a way, your post. I personally don't think the Major Problem is one of prognostic ignorance (in the sense that, say, most oncologists can't make prognostic estimations which would be approximately in line with the best available evidence). Limiting this to oncologists, most of them formulate quite sophisticated prognostic assumptions about their patients, which are accurate (accurate in the sense of being reasonable and based in good evidence - this is not to say that any of us are great at identifying what will happen to any particular patient [which is tougher than saying what would happen to a population of patients with the same conditions/comorbidities, ie that the population's median survival would be 3 months or whatever]).

All this rambling is to say that I think the Major Problem is an unwillingness and discomfort in talking with patients about the future - it happens, but not infrequently way too late - and this is nothing in particular to do with oncologists. For families with patients with dementia, for instance, it's after the 3rd hospitalization in 6 months for pneumonia, or whatever - that's when someone first tells the family 'you know, this is going to continue no matter what we do' etc. My own sense is that we aren't offering these conversations, talking about future scenarios (and all the uncertainty involved which is part of the game here: it's tough to say how long someone is going to live with end stage dementia - it's pretty easy to predict however that they will die from complications of dementia, that the dementia and the patient's cognitive/functional status are not going to improve, and that life-threatening complications will continue to happen.) 3 months? 9 months? 2 years? None of us really know this, but many patient's families haven't even been given a heads up about what to expect, let alone full disclosure about the full range of options for handling the complications (see Andrew's comment).

Anyway, Chuck, maybe I'm completely off on this: do you hear oncologists indicate they are eager to talk with their patients about time, prognosis, but just don't have the knowledge to do it?

John: I agree completely with you, and families in those situations are operating (understandably so) in the realm of emotions and values. That doesn't mean however that there aren't many 'in the middle' who want to know, and who would consider such information extensively as they struggle to figure out what's right for their dying loved one.

Take a look at this article about the same NEJM ar...

noreply@blogger.com (RevMelinda) — Tue, 27 Oct 2009 23:14:55 +0000

Take a look at this article about the same NEJM article from a more "lawyerly" perspective:

http://www.scnursinghomelaw.com/2009/10/articles/advocacy/nejms-study-on-dementia

The most interesting line to me is: " . . . if a (nursing home) residents' "proxy" (which in many situations is the government) was aware of the study, they would decide not to provide care to someone with dementia."

Apparently the writer believes that palliative care is no care?

There's a video documentary on the hospice program...

noreply@blogger.com (Jerry) — Tue, 27 Oct 2009 14:33:42 +0000

There's a video documentary on the hospice program at Louisiana's Angola Prison that's frequently shown during ELNEC training sessions.

Talk about become attuned to the end of life needs of a different culture - it doesn't get much different than this.

What gets me is how so many "proxies" - family mem...

noreply@blogger.com (John) — Mon, 26 Oct 2009 19:03:06 +0000

What gets me is how so many "proxies" - family members, POAs, etc - have come to expect in our culture that tube feeding, antibiotics, life support, etc are the standard of care for demented patients. Anything less in their eyes seems to be a deviation from the norm. I'm not sure adding prognostic information is helpful in these cases. We are assuming the receiver of this information is acting rationally and honestly on the patient's behalf, and more and more so it seems these days, there is less supply of rational thought.

Thanks for the hat tip on the article. I read it ...

noreply@blogger.com (Andrew) — Mon, 26 Oct 2009 15:38:31 +0000

Thanks for the hat tip on the article. I read it on Sunday night, and what should be waiting for me in the hospital on Monday morning but an 87yo woman with FAST 7 dementia, intubated for ventilatory failure, "pneumonia", hypothermic, etc.

The ICU residents are getting another article to read this morning!

Prognostic information is critical in how patients...

noreply@blogger.com (Chuck Wellman) — Sun, 25 Oct 2009 17:03:17 +0000

Prognostic information is critical in how patients are treated. The National Quality Forum has recommended that cancer patients not receive chemotherapy in their last month of life. To follow this sensible guideline, though, oncologists will have to become more familiar with the oncologic prognostication literature and sharpen their own skills of perception and dialogue with their patients. Unless these educated guesses become more accurate, patients and oncologists will not be able to make good EOL choices.

I completely agree that prognostic information has...

noreply@blogger.com (risaden) — Sat, 24 Oct 2009 18:28:36 +0000

I completely agree that prognostic information has a powerful effect on end of life care and decision-making. Most patients and families do not get needed prognostic information from their PCPs or specialists when confronting a life-threatening disease or event(including likely time frames, but also periods likely to be spent in SNFs or rehab, typical complications of recovery from surgery or injuries,etc. as well as palliative prognostication regarding quality of life or our projected ability to help with pain and symptom management). I often feel it is one of the most important thing palliative care providers have to offer patients and families.

John, Certainly my hope is that palliative care ...

noreply@blogger.com (Lyle Fettig, MD) — Sat, 24 Oct 2009 03:12:32 +0000

John,

Certainly my hope is that palliative care principles will disseminate amongst all medical specialties (eg being able to determine and honor a patient's preference for location of care from the time of ED evaluation when possible). As I said, I see the world through the lens of a palliative care physician, and a geriatrician/family med doc/general internist/NP/PA could fit into the role as well. Who knows what our health care system will look like in 2022? Do you think that 20-30 years ago primary care physicians would have predicted the hospitalist movement?

There would be many logistics to be worked out in order for this to become commonplace, and as Drew said, reimbursement schemes would have to change dramatically.

Let's just say that you can see more patients in the hospital in four hours than I can.

Thanks for your comments.

Lyle

After seeing this happen to my father, I'd love to...

noreply@blogger.com (EastwoodDC) — Sat, 24 Oct 2009 03:11:12 +0000

After seeing this happen to my father, I'd love to see better information about end of life care getting to the family members who need it. My family was fairly fortunate, and I think fairly well informed, but there still many aspects that might have been less painful.

Hi John. Given that these are hospital at home pa...

noreply@blogger.com (Drew Rosielle MD) — Fri, 23 Oct 2009 23:23:46 +0000

Hi John. Given that these are hospital at home patients, and not 'routine' home visits (e.g. for patients receiving skilled nursing visits, or hospice care, etc.) I think there is a heightened role for physicians here compared to how most of us conceive of as home care. Your point is well taken though, and I don't know either how this would work in the US with our current reimbursement system, etc. NPs, PAs, etc would certainly play a vital role.

I'm curious about your statement of the principles of PC 'trickling down' to primary care specialists (ignoring the whole H@H question)? Are you seeing that?