btw, I have not set forth any specific “communication algorithm” in Notes, rather, I posit the reform in general.

Thank you for purchasing Notes. I have some questions for you that’d probably be best posed offline so as not to use this blog as an email proxy. If you email me from the contact page of my website we can proceed from there.

Bart

I am waiting for your book to arrive. First, at my hospital, Northern Westchester Hospital, Mt. Kisco, NY, we try very hard not to have an “Institutional Death” for the patients who require end of life care. Our resources are extensive including, The Ken Hamilton Patient Care Givers Center, Clergy, Patient Advocate, Hospice, Nursing Support, Case Manager Support, Physician Support, Ethics Committee… These supports as well as others are provided by the hospital, in the attempt to ease the overwhelming burdens of a loved ones death. To the best of my knowledge, no patient or patient’s family ever feel abandoned during this very difficult time. The focus needs to be on open and continual communications between healthcare professionals, patients and family.

Harlan

Gotta run to a conference; I’ll try to tune in before to long.

Bart Windrum

I am unable to find your “Communication Algorithm” as you have described. Where on the Internet is it located?
Thanks.
Harlan

Harlan, I don’t know that we were meant for it, but Notes and PEACE evolved after my NICU nurse sister and I, who thought we had learned the ropes in 2004, experienced the same and worse in 2005. I call it the crucible of terminal hospitalization. I can only imagine working in an ICU and dealing with an unending stream of demises, from all walks of life, everyday. You have my utmost respect for doing it (tho I’d have to know how well you practice what I call Communication Algorithms before fully endorsing you :).

On the lay side, I’ve boiled the issue down to an unexamined and misplaced notion of heroicism. If we ponder just a little, we quickly understand that medicine’s beneficence has extended our lives by decades, during which we’ve been heroic; sanctified life, for those who want to frame it that way. We’ve done the heavy lifting. All of use; the “white hat” has a very large brim, so to speak.

A year after Dad died I initiated a phone conversation with the (RN!) patient liaison I’d mentally dismissed when she introduced herself serendipitously in the hall (back then I had no idea that chaplains hold the key to a hospital’s ethical kingdom, or that ethics committees existed, and we had learned a year earlier that engaging nursing management was utterly futile). We brought up the medical record and mused. She asked me what she might have done to have made a lasting impression upon me, and I suggested language and demeanor that, in my case at least, would have caused me to save her card and call on her. I like to say the finger of responsibility points 360º; we’re all part of the system. But/and: the lack of support occurred in a Jayco 100 hospital (as the banner-billboard proclaimed from the rooftop).

Bart Windrum, author/speaker/end-of-life reform advocate

You might be interested in this new site Engage with Grace: The One Slide Project. Matthew Holt put their idea into action (maybe for the first time since its launch?) at the Connected Health conference on Monday, putting the slide about end of life decisions up on the big screen for everyone to consider.

Thanks for your comments. End of life care is probably one of the most difficult decisions to be made by a patient, family member or significant other. Our current system is not perfect since any of these directives may be reversed by the patient or his/her proxy. The important message, is that there needs to be a better way to look at end of life care other than being in an ICU, hooked-up to all of the advanced life-support modalities. I believe that there comes a point in time where quality of life and comfort care are so vitally important. I agree with your concept of lead time but this discussion must begin prior to a catastrophic medical event. Finally, I am very sorry that you were meant to feel so isolated and unsupported during your personal medical crisis. This is unacceptable in today’s practice of medicine given so many of the supports that are available–clergy, hospice, patient care giver centers, hospital ethics committee members, treating physicians and nurses… These individuals are there for a purpose and patient/family support and comfort are at the top of the list.
I know how difficult this is, since after 22 years of working in a busy medical ICU, we face these challenges on a daily basis.

Thanks.
Harlan R. Weinberg, MD, FCCP
Author, “Dr. Weinberg’s Guide to the Best Health Resources on the Web,” Harper Collins, 2008

Communication, indeed!

Bart Windrum

I use a range: 25% of the $ in the last year of life on the conservative side to 30% of the $ in the last month of life on the assertive side (the latter I believe comes from AMA; I heard it in the Colorado legislature during the “208″ Commission’s signature report earlier this year). Tho I don’t know if those are total dollars or Medicare dollars.

I’m flabbergasted that in all the healthcare insurance access debate I have yet to hear any mention of redirecting/saving some of the 25-30%. It’s huge!

Communication: altho I tend to pin the responsibility tail on providers due to their vast experience in assessing impending death (in general), it’s evident we all need to begin talking. I’m doing what I can to promote the conversation, using the conceptual and lingual reframe I offer in my work. It’s clear to me that what we need, and what the conversation offers, is *lead time* for patient-families to come to grips with a demise in enough time to truly manifest the resolve to die in peace.

But that’s my EOL focus…where JAMA values like those presented above impact citizens with particular harm (I use the word purposefully) due to irreplaceable, lost opportunities–precious moments–in the run-up (down) to our loved ones’ death.

Bart Windrum, author/speaker/end-of-life reform advocate

Excellent! It’s not only physician communication skills that are lacking but a needed discussion throughout our country for end of life care and advance directives.The most recent numbers that I could find were approx. 27-30% of the total Medicare budget is spent on end of life care in the last year of life. Finally, if we look nationally, slightly less than 25% of all Americans have any documentation regarding a healthcare proxy, living will, advance directives… Death is part of our cycle of life. We all need to better understand this most difficult part of our life.

Harlan R. Weinberg, MD

This lay person’s perspective is that the underlying conversation needs to change at its root level: “care” is not part of the delivery. The problem is that it’s literally impossible to extract the letters from the system or any conversation about it. And, the system actively asserts in various ways that it delivers care. It delivers bodily repair services.

This is not pejorative! Provider expertise adds years and decades to our lives. But language is critically important. Especially at end of life, the language/concept gap and all that derives from it harms patient-families (I know; I’ve experienced two terminal hospitalizations and subsequently wrote a book about this all).

Kudos to any doctor who practices Communication Algorithms — a reform proposal I suggest as a licensure/renewal requirement. I coined the phrase specifically because I want providers to understand that I understand how they are trained to think and function, and that if they can apply known skills in a diagnostic arena they can also apply these same skills in the patient-family communication arena.

I want to add, compassionately, that providers who encounter ignorant patient-families almost have their hands tied. And that I think I understand that most providers enter the field as young adults with a sense of mission and elevated purpose; that the challenges of corporatized/insurer-driven medicine with no diagnostic code for education make it all the more difficult.

Nonetheless, stuff like these JAMA excerpts are enough to make one gag, without the benefit of a tongue depressor. For even beyond my parents’ terminal hospitalizations, two recent curative hospitalizations for middle aged people that I’ve been intimately or tangentially involved with proved beyond a shadow of a doubt that systemically, providers workplace, habits, and orientation (“service delivery”) occurs under a paradigm ordered completely around their own convenience and not patient-well being.

Sorry to say!

Bart Windrum, author/speaker
http://www.AxiomAction.com
- Notes From the Waiting Room: Managing a Loved One’s End of Life Hospitalization
- The Option to Die in PEACE (Patient Ethical Alternative Care Elective)

I understand your point, and it’s a good one. What I sorely lack, though, is a sense of adequacy of their advice; it feels to me almost like “dumbing down” of the advice to childlike simplicity: like, since many or most people don’t even have the basics, let’s state it at a simplified level – and leave it at that.

I humbly suggest that when push comes to shove, there’s real harm in the oversimplified advice. Gilles’s point about needing docs who really know the specific condition is one example; our post on “All MRIs are not created equal” is another. I know of people whose cases did not go well because they figured that as long as they were going to an MD with plenty of diplomas on the wall, they were getting the best care possible.

——

I believe people need to be aware that there are real differences in the excellence of services they can buy, for themselves and their family members. When I got my prognosis (<6 months median survival), you can bet the question I asked my peer community was not “Where’s a doctor,” is was “Where’s the BEST doctor for this?”

I didn’t know about e-patient yet, but I knew to take responsibility for myself and not just bow down to the shingle. I’ve documented here before that my attitude was bent by two events earlier in life where I’d trusted two docs (a surgeon and a dentist) because they were board certified, and both turned out to be jerks.

Okay, the day job calls – thanks again, let’s keep this going.

> I have been surprised by how many people do not even understand these _basic_ aspects of how to get good healthcare quality

Thanks very much for the contribution to the discussion! I’m genuinely honored each time we hear the voice of another doctor.

I understand your point, and it’s a good one. What I sorely lack, though, is what feels to me like “dumbing down” of the advice: like, since many or most people don’t even have the basics, let’s state it at a simplified level.

I humbly suggest that when push comes to shove, there’s real harm in the oversimplified advice. Gilles’s point about needing docs who really know the specific condition is one example; our post on “All MRIs are not created equal” is another.

I hope I’m not oversimplifying when I say that the JAMA advice rather reminds me of approaching auto maintenance by saying “Be sure you get your oil changed, and use a certified mechanic.” True, but only the tiniest tip of the iceberg.

And, more to the point, there’s a good chance that consumer ratings of mechanics (how things worked out long term) will vary substantially among certified mechanics. (Sorry, that’s not a perfect metaphor, but I hope it communicates.)

Let’s continue this dialog. There are important things to be created here, and this is just a start.

I keep coming back to kidney cancer, my disease, and the patients whose doctors assured them that (for instance) they just took a refresher course five years ago. A vast amount has changed since then. How do we make it an everyday truism that patients and doctors all think in terms of shared participation?

If you think of the JAMA recommendations as a bare minimum they may seem slightly less egregious. For some people, knowing that they are supposed to bring a medication list and knowing that their doctors have the _minimum_ qualifications needed to be a doctor is actually a helpful suggestion. That is, for some people, it is helpful to say, “Know what medicines you’re taking and make sure your doctor also knows what medicines you’re taking; and also, be sure your doctor isn’t egregiously unqualified.”

As I struggle with what it means to be a democratic doctor, one of my challenges is that I came into medicine hoping everyone would be like e-patients (I came into medicine from HIV work where there is a strong tradition of empowerment of people living with HIV and AIDS), and finding that many people didn’t even know how to start being _any kind_ of patient. The struggle in finding a collaborative relationship with patients as a doctor is making sure you as the doctor are meeting the patients where the patients are.

So: there are some people living with cancer who understand they may benefit from a uterine leiomyosarcoma doctor (or the equivalent) because of the distinct behavior of that cancer vs other sarcomas. There are many others who think that because they have metastases in the bones, liver and brain that they have bone cancer, liver cancer, and brain cancer. They have to be walked through a bunch of steps before they even understand that they have a special disease much less that they would benefit from a specialist in that disease. (This is why things like local cancer support groups are so important–including in real space, not just internet space.)

So, I agree that these recommendations are less than inspiring, and simply elucidate some very basic steps in how to be a more effective patient within a non-transformative relationship. But I have been surprised by how many people do not even understand these _basic_ aspects of how to get good healthcare quality, never mind healthcare excellence in a fluid and democratic world of high-information patients and clinicians working collectively.

Joe Wright MD

My hat goes off to physicians who are willing to risk giving up the familiar and go for what they hope will be something greater.

As you may have seen, a good example of such dialog was here earlier this month. We all have much to learn, and it’s a thrill to be in as Tom Ferguson’s work continues bearing fruit. Very heartening.

Keep in touch –
Dave

Thanks for your response. First, when you look at the quality of care in medicine, it is a dynamic process that includes many important aspects, including active patient participation. As I stated in my original comments, our new era of participatory medicine must be a joint venture between patients and health professionals. This working relationship must now include active patient participation along with health care professional acceptance of this emerging medical culture. Finally, certification is not the only factor that patients may review when determining which physician or physicians that will be involved in their care. It denotes a certain level of accomplishment but is not the only criteria for an individuals selection.
We must all be aware that this new era of health care delivery is vastly different from anything else previously used by patients and physicians. We are at the beginning of a new learning curve and I believe that we must have a new level of patience and acceptance for everyone who is involved. The key here is education and communication for the new practice of medicine.
Finally, our ultimate goal should be the best medical practice providing patients with the best possible outcomes. We should settle for nothing less.

Thanks.
Harlan R. Weinberg, MD, FCCP

Harlan, it’s good to hear from you. I think the point here isn’t whether the AMA is concerned about all patients – the whole point is whether the AMA (as an institution) views patients as active participants in their own health and particularly health care.

Also, Harlan, I’ll respectfully point out that most of the ten items you mention have nothing to do with participation. (They’re good, but they’re not the point of this particular issue.)

Plus, as Gilles points out, it’s completely disingenous of the AMA to assert that anyone certified is as good as anyone else. Again, either they’re unaware of reality (as repeatedly detailed by stories here) or they are aware of reality and are for some reason willfully pulling the wool over someone’s eyes.

I’m inclined to agree with Susan’s comment – this is pretty pathetic. It’s very common in my own ACOR peer group (kidney cancer) to hear someone new show up whose (certified) doctor claims that they can handle it just fine, when in fact they haven’t learned a thing about the disease and its treatments in five years or more. That’s raw BS – it can even be life-threatening BS. No excuse for that.

For some reason stuff like this evokes images of Al Haig grabbing the microphone and saying “I’m in charge here.” Or our Chief Executive saying “Heckuva job, Brownie.”