The dreaded death panel discussion, cont'd

The White House revealed its institutional lack of testosterone-producing glands last week, when it removed reference to coverage for end-of-life counseling in new Medicare regulations implemented this month. That was like punting on first down. But it's a moot point, because the amount Medicare pays for physician counseling is enough of a deterrent to prevent extensive discussions in this regard.
Because I work in a hospital, and Medicare pays us lump-sum amounts, and because state law requires that we ask every patient on admission if they have a living will or other advance directive, we are pretty much required to have these end-of-life discussions with patients. They may be one word discussions ("No."), or two-word discussions ("Go away!"), or they may be very long, discussions, sometimes fruitless, but sometimes very profitable.
Was "profitable" a poor choice of words? Actually, it was quite an appropriate choice. Because if I can persuade a terminal patient to forgo treatment, I can get that patient discharged from the hospital earlier and save money. Remember, how I told you that Medicare pays us a lump sum? The amount depends on the diagnosis and treatment course, but that payment covers the complete length of stay. So, if I can get that patient out two days earlier, I conserve two days' worth of expenditures. This was the genius behind the Reagan Administration's adoption of a prospective payment system in 1983 for inpatient hospitalizations.
Some of you dear readers are probably aghast. The government has no business forcing people into palliative care just to save taxpayer dollars. I'm here to tell you that Medicare has NEVER told me to talk Grandpa Jones into pulling the plug. But private (for-profit) health insurance companies have suggested as much. Are you, dear reader, more comfortable with your health plan, which you paid for with hard-earned dollars, withholding care from you? Is that more acceptable than the government doing it?
It is true that choosing to forgo heroic medical measures saves Medicare (not to mention Blue Cross and Aetna) a boatload of money. But it is also completely unethical to consider potential financial impact when making philosophical decisions about care at the end of life. Nevertheless, I have been encouraged by insurance company case managers to talk to my patients about going on hospice, sometimes when my patient is at the last stages of life. And sometimes when the patient is newly diagnosed. Doesn't matter. Even many medical professionals equate cancer with death, and hospice with saving money.

So, when I have these death panel discussions with Medicare beneficiaries, after listening to the patient talk about his or her beliefs, desires and values, I pull out a Durable Power of Attorney for Health Care Decisions (hereinafter referred to as DPOA) from my bag of tricks. The vast majority of patients don't have a power of attorney document. The idea of setting their wishes down on paper seems so final. But believe me, it's the smartest possible thing a person can do. I have had a DPOA since I was 32.
Contrary to popular belief, a DPOA is not a death sentence. The document allows you to clarify your wishes, whatever they may be - even if you wish to have everything done for as long as possible to keep you alive. The Living Will (LW), another advance directive, is not, in my opinion, as good a document as the DPOA. For one, a LW is biased toward stopping treatment, rather than continuing it. Secondly, the LW cannot speak on your behalf. The DPOA, on the other hand, allows you to name an agent who will speak on your behalf when you can't speak for yourself. The trick is picking the right person to be your agent, and then making sure you convey your wishes clearly to that person.
By executing a DPOA, you potentially save yourself and your family a lot of suffering and heartache. And, contrary to popular misconception, the document does not hasten your death. In fact, the document may enable you to spend every dollar in the Medicare Trust Fund to keep you alive.
So put yourself in the patient's shoes. Do you want your insurance company having a vote on whether you live or die? Do you want a government bureaucrat making the decision? Do you want the doctor to make that decision? Do you want your children to fight among themselves as they try to read your now comatose mind? Do you want the control of whether you live or die to be in anyone else's hands but yours?
Assuming you are a rational person, I suspect that your answer is that YOU want to be in control. Then why wouldn't you want to give every Medicare beneficiary the opportunity to make the same decisions?

Come, eavesdrop on a Death Panel discussion . . .

Today's Wall Street Journal lead editorial confirmed what I wrote in my last column: that the new provision in CMS regulations paying for end-of-life discussions between Medicare beneficiaries and their physicians is actually a good thing. You might have a hard time coming to that conclusion, because the WSJ's approval was buried in a series of tirades against the President and the CMS bureaucracy, as well as a glowing endorsement of Sarah Palin's prescient understanding of the dangers of socialized medicine.
Sidebar: it's becoming increasingly clear that NewsCorp owns the WSJ, as the editorials get snarkier. At least Mr. Murdoch hasn't ruined the reporting. Yet.
I can't vouch for what President Obama would say to a senior, nor what a Council of Liberal Democratic Senators might impose upon that poor Medicare beneficiary, but I can tell you what I talk about when I have these end-of-life discussions with patients.
Here's the first thing you should know: in my experience, physicians only mention "hospice" and "palliative care" in passing, and then someone else - someone who's paid a lesser salary - actually shares the details with the patient. That someone might be a social worker, or a nurse, or somebody like me.
Maybe because I'm not on the government payroll, I don't know any better, but rather than imposing a guilt trip on Granddad ("don't you know that by clinging to life, you're depriving your grandchildren of a decent standard of living??"), I start by listening. I ask a series of questions, to find out what this person believes about life, about quality of life, about family and relationships, about what's most important. And then I listen.
We talk about mortality. The WSJ said it today: no matter how much we improve medical care, we still haven't found a cure for death. Mortality is still 100%. So what we really think about is life-sustaining or death-delaying, and, to put it simply, at what point is death a better option than life.
The reason that so many political pundits on both sides of the aisle are having trouble with the whole "death panel" issue is not their political persuasion. It's something much, much deeper. It's because they haven't dealt with their own mortality. They're scared to death of dying. When I speak with elderly patients about life and death, they are usually at peace with the idea. It's their grown kids (usually the same age as Sarah Palin, or thereabouts) who can't deal with it. This same latent fear is what causes people to say irrational things and make irrational decisions in the political sphere.
We talk about prognosis. That's a fancy word for what we expect the outcome to be. Specifically, what will the outcome be if we do everything, and if we do nothing (or something in-between). On my ball field (oncology), physicians and patients often have conversations about what treatments are available, but sometimes - maybe often - they don't really talk seriously about whether any of those interventions will make a real difference in survival or quality of life. Thus I have seen patients die in the ICU after spending two months on a ventilator, and I wonder, would they have chosen this death?
We talk about how long is long enough. An 89 year old with metastatic lung cancer may decide she's lived a good life and doesn't want to go through the treatment gauntlet for another four months. A 38 year old mother of three with advanced breast cancer, on the other hand, may value as precious beyond price the opportunity to spend the extra two months with her kids (the median improvement in progression free survival from Avastin) that treatment might buy her.
We talk about Quality of Life . . . the elusive, enigmatic quality of life. The problem with quality of life is how to define it. Unfortunately, medical professionals often, arrogantly, assume to define quality of life for their patients. We even try to calculate treatment effectiveness in terms of "quality-adjusted life years." The problem is that nobody can define quality of life for a patient except the patient himself. So what I have to do is ask the patient, "what does 'quality of life' mean for you?" For some it's freedom from pain, or anxiety. For others, it's preservation of autonomy. For some people, quality of life means being allowed to fight for survival to the last breath. For others it means spending their life savings on a trip to Italy, rather than three weeks in the ICU.
After I've listened to the patient talk about what's important to him, we can move to the part of the interview where I talk and the patient listens. I'll tell you about that in the next installment of "Miranda Writes."

Death Panels return! (Not).

It was reported Sun., Dec. 26, in the New York Times, that the Centers for Medicare and Medicaid (CMS) released new rules that allow physicians to counsel Medicare beneficiaries about end-of-life issues. That's not a very accurate description of what happened.
What actually happened was that CMS, as required by the Patient Protection and Affordable Care Act (hereafter referred to as PPACA), instituted coverage for annual wellness visits for Medicare beneficiaries, covered at 100%. Furthermore, part of that annual wellness visit may include a discussion between the patient and the physician about the patient's desires regarding end-of-life care.
Now this is important, so read carefully and slowly: PPACA only annualizes the "Welcome to Medicare" wellness visit instituted by CMS under George W. Bush. Permission to discuss end-of-life care (and be paid for it) was instituted under the Bush presidency. All PPACA did was to provide that opportunity annually, rather than just once, when the beneficiary first becomes entitled to Medicare.
Unlike the ill-fated "death panel" provision of the health reform bill, which was edited out in the final version of PPACA, these new CMS regs do not prescribe the content of the conversation between the physician and patient. And, to quell the fears of Libertarians everywhere, if you knew what Medicare pays a doctor to do an annual physical, you wouldn't waste the first bead of sweat worrying about wholesale efforts by physicians to lead seniors to slaughter. It's just not worth the doctor's time to hold extended discussions about living wills and withdrawal of care.
What I can tell you, from my personal experience, is that, contrary to the ravings of Betsy McCaughey, Rush Limbaugh and Sarah Palin, neither physicians nor the government are interested in pressuring seniors to die quickly to save Medicare's money. In fact, most physicians don't seem to want to have the end-of-life conversation at all.
Think about it. How comfortable would you be discussing death and dying with all of your clients or customers? Our reticence to have these discussions probably do cost the taxpayer money that could have been saved if better decisions were made. But much more importantly, our unwillingness to have those discussions results in untold pain and suffering that could have been avoided otherwise.
Here is what I've seen with my own eyes, in my job, at my hospital:

• patients spending the last three weeks (or three months) of their lives on a respirator, sedated to dull the pain and paralyzed with drugs to overcome the instinctual struggle to yank foreign objects out of their throats.
• patients sweating from fever, yellow from jaundice, swollen like footballs, with every pore of their skin weeping lymphatic fluid, their skin tearing in places and bruising in others, their fingers and toes becoming gangrenous.
• patients with their ribs broken and their lungs punctured from multiple attempts to revive them with CPR, only to last a couple more weeks virtually brain dead before their organs finally shut down.
• families torn apart - sometimes not speaking with each other for years - because of conflict about decisions made at the bedside in the absence of the patient's clearly expressed wishes.
• husbands and wives feeling guilty - feeling like they killed their loved one - because they were asked to make to decide to "pull the plug," without knowing the patient's wishes.

Situations like these can be avoided if only a physician and a patient can sit down, as signs start to point toward impending mortality, and have an open, frank, supportive discussion about the patient's beliefs and wishes before there is a crisis.
In my next article, I'll tell you what we talk about when we have these "death panel" discussions with patients.