Tony Lived Before He Died

Two years ago, on a visit to South Africa, I met a most extraordinary man. Tony had lived in a hospice for several years completely immobilized by Motor Neuron Disease, except for being able to move his eyes, talk, and swallow.

Tony’s extraordinariness didn’t come from his disease, but how he coped with it. It wasn’t possible to ignore that he was in a hospice, or that his disease was degenerative, and that the room in which we talked would be the place of his death. However, that all faded into the background very quickly. We talked about old times (we discovered that we had been raised in the same neighborhood), politics (we argued quite a bit, as I recall), and of course, sport.

There were jokes, both light and decidedly dark while Tony enjoyed a cocktail or two.

He was a gentleman.

I visited Tony as often as I could, but soon it was time to return to the US. I vividly recall my last visit. Tony had a beer and toasted our friendship. I could tell that he wanted me to linger, and I did as long as I could before going on to a dinner appointment.

My last words to Tony were: “I promise you, I’ll see you again.”

I revisited South Africa this summer, but Tony was dead.

Several months ago, I learned, the final deterioration began, but Tony was ready for his death.

Quietly, over a period of about three weeks and at the end surrounded by those he cared about most, he succumbed.

I was several months too late to fulfill my promise.

I’ll bet Tony’s chuckling at that.

“Timing,” I think he would have joked, “is everything.” Or perhaps “Thanks for nothing Mark, a miss is as good as a mile!”

Tony didn’t volunteer for his terminal illness. However, in his witty biography, “Happy Chappie,” finished just before he died, he explains that he made the decision early on after diagnosis to live with his illness until he died rather than waiting to die because of his illness.

He’s bequeathed to us a profound lesson in what it means to be human, and how he coped, in “Living With Motor Neuron Disease.”

Go watch it. Share it.

That’s what Tony would have wanted.

Futile Care – Who's for the Blood and Gore?

Today the New York Times has a piece about the dilemmas of futile care.

What is futile care?

Glad you asked.

Futile care is essentially the idea that for many patients, there comes a point where medical treatment is useless, because it will not improve their condition. On its face, this seems reasonable, except for at least two points. One, we had better be careful about what we define as futile care. Why? Because, increasingly, feeding and hydration are being classified as medical treatments, ergo, they can be judged as medically futile and therefore withdrawn. Two, futile care arguments slip very easily into the realm of doing what’s cost effective. How so? Well, if there is an expensive medical intervention (and almost all medical interventions for these patients are expensive) wouldn’t the treatment be better utilized on someone who has a much better chance of getting better?

The NYT piece shows how biased the media has become when reporting on end-of-life issues, because it goes out of its way to tell us how awful and horrific end-of-life interventions can be.

The piece makes a stab at balance, noting that not all doctors think futile care is the way to go, and also acknowledges that sometimes it is more loved ones’ denial of the obvious, if painful reality. That’s fair enough – as far as it goes.

But read the opening sentence:

Aggressive treatment at the end of life — frantic CPR for a brain-dead accident victim, inserting a feeding tube in a dying Alzheimer’s patient — has become a staple of the health care debate. Critics argue that vast resources are squandered on care that is obviously futile.

No exactly nuanced, and it sets an unfortunate tone, especially entertaining the notion that it’s OK to starve Alzheimer’s people to death.

It goes downhill from there. Soon we are in the grimly grotesque world of a twenty-first century Frankenstein:

The subject of the first essay was a 2-year-old boy, severely brain-damaged from a birth defect. He was dead — his heart had stopped. His doctors and nurses knew that no matter how hard they might try to resuscitate him, they would never succeed. But they tried anyway; aggressively jamming large bore needles into his chest, pounding on him, applying paddles to shock his heart. One nurse was so upset she almost vomited.

Medically, this is accurate, I suppose. But you could couch open-heart surgery, drilling into a patient’s brain to relieve bleeding or even stitching up a gaping wound in exactly the same way – many medical interventions are gory, but that doesn't mean we don't do them. If we didn't, we'd never perform transplant surgery, amputations that save lives, or reattaching a severed limb, all interventions that are very often successful and for which patients are very grateful.

Later, in discussing CPR, the Times again prefers the gory option:

It’s a violent procedure, Dr. Helft said, “very invasive and disturbing.” Medical personnel press on a person’s chest with such force that they break ribs. They stab large bore needles into the chest to administer fluids and drugs. They shock the heart with bursts of electricity.

Well, not exactly. CPR does not necessarily mean ribs get broken. It's possible, and sometimes it happens, but suggesting that it's always the case is bunk. Emphasizing the gore betrays where the writer’s sentiments lie.

Here’s a further quote about that same little boy:

Dr. Helft explained why. “In a sense what it does is, it says that we are doing this procedure, using this procedure on the boy to benefit the family,” he said. “We are using this boy as a means to an end, an end unrelated to his own well-being. You will hear clinicians say this all the time: ‘Even though the patient is already gone, we are treating the family now.’ There are lots of other ways the family can be treated.”

OK, I see - the boy’s wellbeing was to be dead. That’s not a cynical observation. If you read much of the medical literature you can’t get away from the perception among many that death is a form of wellbeing over living and suffering.

Just like for your pet dog.

Let me be clear: There is clearly a time when reality means all medical efforts should cease. However, the trick is to know when to desist - and therein lies the judgment of the medicos, who are very far from perfect in what they can prognose.

The way they see it, however, Doctor Power should prevail.

Let’s look at the second reported case, DeeDee, an elderly woman with advanced Alzheimer’s disease who was subjected to “aggressive” resuscitation efforts and survived:

DeeDee was saved. She’s still demented, of course, and cared for round the clock by dedicated attendants.

See? What a waste of time, effort, and money. We still have to care for this demented woman around the clock, such a waste of energy and money.

Money spent on a demented old lady could have been better spent on people who are in their right mind.

Frightening.

Gotta Love the Dutch, Those Merciful Killers!

Let’s open the New Year as we left the old year, shall we?

You know - that part about how we are now becoming quite accustomed to killing people because somebody has decided they are not worth keeping alive.

All in the decedents’ best interests, of course.

Media in the Netherlands reports that there was an increase in the number of people euthanized in 2009 – including people in the early stages of dementia. No surprise there, but I think it’s instructive to look at what is reported, and the subtle subtexts that are nevertheless coercive in slanting a favorable impression of medicalized killing.

Sidebar: I’m not suggesting that the reporter deliberately thought this through, but I think it’s obvious that things in the Netherlands are so pro-euthanasia that the article’s bias is assumed to be “balanced coverage,” which it’s not.

From a piece DutchNews entitled More Cases of Euthanasia in 2009.

First, the obvious is reported, that there were more 200 more cases of euthanasia in the Netherlands last year than 2008, where the killing total was 2,500.

Then:

It is not known how many cases of mercy killing there actually are in the Netherlands, but in 2007 experts said around 80% of instances are registered with the monitoring body.

Well, mercy for whom, exactly? What exactly is the nature of this “mercy?” How can we be assured that the “mercy’ is not for those left behind who found the patient too much of a burden? What about the survivors benefitting from such “mercy” as they inherit goodies from the person they coaxed to assume a duty to die? No way to tell, of course.

“Merciful” because people are in unbearable pain and suffering? Not exactly, because many people who are euthanized are not in pain, and because, in the Netherlands, you can request euthanasia for just about any reason at all, pain or no pain.

Also, after all the fanfare in the Netherlands about making euthanasia legal so that it could be officially controlled, what do we find? Well, it’s not controllable.

Remember, too, that the registering “monitoring body” (sounds so nice, certain, and transparent) is a review panel that examines the circumstances of the killing AFTER it has occurred.

Now, here's the next snippet that contradicts the whole pain-and-suffering angle:

There were also six registered cases of euthanasia on elderly patients with senile dementia, all of whom were in the early stages and able to make their wishes known.

Ah, I see. Where to begin? Dementia, though tragic and unfortunate, is not physically painful (originally, at the top of the slippery slope, euthanasia was ONLY for untreatable physical pain among the terminally ill). Psychologically painful? Clearly, for persons who are aware that their faculties are diminishing, but how do other people make this determination? (Those with dementia don’t euthanize themselves, after all). Where is the bright clear line between someone with early dementia who requests euthanasia (in their right mind, so to speak) and someone who’s condition is more far advanced and is judged not competent to request euthanasia?

Don’t worry, the Dutch doctors have a solution for this latter group – they kill them too. The explanation? Had these people been in their right mind, they would have requested euthanasia anyway.

On we go:

The law states a number of criteria, which must be met before euthanasia can be administered. For example, the patient must be suffering unbearable pain and the doctor must be convinced the patient is making an informed choice. The opinion of a second doctor is also required.

More shooting fish in barrels here: Where’s the “unbearable pain” in dementia? How can a doctor ever possibly be sure that, knowing a diagnosis of dementia has already been made, calibrate that the dementia is not affecting the request for euthanasia?

Short answer, I’m afraid: All the contortions of logic and single-mindedness betray, with increasing smugness, that in many places we have decided who should live and who should die.

First those who are terminally ill and in untreatable pain. Then people who are not terminally ill but who might have physical or psychological pain. Then people who are judged to never be able to have a better quality of life. First adults. Then children.

Who’s next?

First They Came for the Mammograms….

There’s been a great deal of consternation over the last few days about the US Preventive Services Task Force recommending new guidelines for breast cancer screening and evaluation. Essentially, the task force recommends that routine screening begin at age 50 and is probably statistically useless after 75 or so. They further suggested that breast self-examination is so unreliable that women shouldn’t bother.

The history of when to begin screening women for breast cancer has a long history, as noted by ABC News. The guidelines have shifted over the years depending on what the latest studies showed.

It’s also important to understand that conflicting findings are very common in all forms of research and often leave the public confused or increasingly unwilling to believe in the accuracy of any research findings at all.

The task force’s report, however, concerns me for two other reasons.

First, the recommendations are based on statistical significance. All that means is that across all women, the most likely age for getting breast cancer is around 50 or older. Also, across all women, screening after 75 is not recommended because, statistically, they are near the end of their lives anyway.

See the shift? Breast cancer intervention based on probability, not individual medical needs.

Second, the recommendations will inevitably lead insurance companies to adopt the guidelines, which are obviously in their favor, because they can justify not paying for mammograms for women younger than 50 or older than 75. And if insurance companies know anything at all, it’s about probability and statistics.

Which brings us to rationing. The US Senate will debate its healthcare monstrosity tomorrow. Aside from all the other spending-into-oblivion by the current administration, the money to be spent in this bill will inevitably result in needed medical care far, far outstripping the resources to pay for it.

Decisions will have to be made. Some will get breast cancer screening, others will not. Guess what this will mean for your 76 year-old mother?

But the Obama administration didn’t wait for the prestigious semi-independent US Preventive Service Task Force. They have already set up an official government mechanism for using research to justify rationing: The Federal Coordinating Council for Comparative Effectiveness Research Membership.

A whole new bureaucracy to tell us what care we may or may not get by telling us that the “research” has made it so.

The government giveth, the government taketh away.

Life Not Worth Living? The Obama Administration Thinks So – at Least for Veterans

We have a rule in our family: Whenever we see members of the US military, we stop, shake their hand, and thank them for their service. As a naturalized citizen, I add my own piece: The United States has offered me immense opportunity that even as a (then) privileged white South African, I could never have had, and that it is the service of our military that has kept me safe and free to pursue the American Dream.

However, it’s getting difficult to keep thinking that our government actually appreciates our veterans just like my family does, after reading the Veteran’s Administration’s (VA) end-of-life booklet, “Your life, Your Choices.”

The document, written by the Clinton Administration, was later withdrawn by the Bush Administration, but it’s been in play since being reintroduced by the Obama Administration this past February.

With some parts of the media beginning to sniff around the document, the Obama Administration, trying to head off another PR disaster, today hastily added a note to the booklet’s webpage (the page has since disappeared altogether):

The document is currently undergoing revision for release in VA. The revised version will be available soon.

Nonsense. The administration got caught on the wrong foot, when somebody noticed what it really thinks of the value of Vet’s lives - as policy, in black and white, for everyone to see.

It’s a disturbing document, because woven among many paragraphs that are informative and clear, is the rather ominous notion: Veteran’s lives might, at some point, no be worth living.

Yes, you read that correctly.

A powerful branch of the Obama Administration, the VA, is now clearly in the business of helping citizens decide whether they should live or die.

Lest I be accused of “fishy thinking,” let’s go to the actual document, p. 21, where your government asks our sick veterans:

What makes your life worth living?

Think I’m stretching things? Read on.

After asking this question, What makes your life worth living?, the document tries to “help” Vets answer it. To do this, the VA thoughtfully provides a series of sub questions to be answered on a scale from

Difficult, but acceptable, to

Worth Living, just barely, to

Not worth living.

Here’s a sample of the sub questions to be answered through the scale above:

d. I am in severe pain most of the time.

p. My situation causes severe emotional burden for my family (such as feeling worried or stressed all the time).

q. I am a severe financial burden on my family.

I am not making this up.

Go just two pages later to the section entitled “Hope of Recovery” (p. 23). Here the quality of life issue is raised again in terms of chances for recovery from a serious illness.

(Sidebar: It doesn’t say a terminal illness, just that you won’t get back to where you were before your turn for the worse):

Imagine that you are seriously ill. The doctors are recommending treatment for your illness, but the treatments have very severe side effects, such as severe pain, nausea, vomiting, or weakness that could last for 2-3 months.

I would be willing to endure severe side effects if the chance that I would regain my current health was:

high (over 80%) [Yes, Not sure, No]

moderate (50%) [Yes, Not sure, No]

low (20%) [Yes, Not sure, No]

very low (less than 2%) [Yes, Not sure, No]

There's plenty more of the same in its 54 pages.

It's not unreasonable, based on the document, to observe at least some of the Obama Administration's thinking:

1. Life is not always worth living.

2. We can help you decide if life is not worth living.

3. Your life might not be worth living because your being alive may be a burden to others.

4. Your life might not be worth living because some treatments are painful, have side effects, and might only provide a small chance of “getting healthier.”

There have been other governments who have defined groups of their citizenry as having lives not worth living.

Is the current administration populated by a bunch of Nazis? No, the only people who were Nazis were the Nazis.

However, there’s no question that our government, at least as far as its war heroes go, officially acknowledges that under a whole bunch of circumstances, some citizens’ lives might not be worthy of living.

I wonder which group will be next?

Because, for governments unchecked, there’ll always be a next group, trust me.

Caution: House Healthcare Bill 3200 Means What It Says

President Obama, ever-present in every form of media imaginable, continues to struggle mightily to articulate what exactly he means by healthcare reform.

I’m not impressed, because I don’t think the President knows what he means - the messages are just too garbled.

Ditto his cabinet and top party officials, who routinely issue statements that are quite contradictory, both to each other, and to the President, and are then followed by the usual retractions, clarifications, or by attacking the messenger.

This message mess is understandable, because the President has delegated what his reform means to the lawmakers who have drafted several sets of legislation both in the US Senate and the House.

The proposal drawing the most interest has been H.R. 3200, which aims to:

To provide affordable, quality health care for all Americans and reduce the growth in health care spending, and for other purposes.

Unlike my President and many lawmakers, I’ve read the bill. It’s not that difficult to understand, and no, you really don’t need to be a lawyer to understand it. It’s boring reading, but hardly incomprehensible.

Many of us don’t like what we see.

But proponents keep insisting that what the bill actually says is, well, not what it says, and that many of us who know exactly what it says (and implies) are perpetuating “myths” or “misinformation.”

Really? Let’s look at just one example:

Proponents of H. R. 3200 insist that the now-notorious Section 1228 of the bill, beginning on p. 424, describing ‘advance care planning consultation,’ is not mandatory. It’s simply, so they say, that the bill provides for people to discuss their end-of-life preferences with their doctor, and that this consult will now be paid for by the government.

I searched the bill. The word “voluntary” appears 7 times.

Now, that leads me to think that the word “voluntary” is written those 7 times because the bill means for those particular parts of the bill to be, well, not mandatory. Ergo, voluntary.

However, there’s absolutely no “voluntary” mention in the section related to ‘advance care planning consultation.’

In fact, at the very least, even if we can explain away the rest of the “voluntary’ canard in the bill, read this, from page 428 (italics mine):

(B) An advance care planning consultation with respect to an individual may be conducted more frequently than provided under paragraph (1) if there is a significant change in the health condition of the individual, including diagnosis of a chronic, progressive, life-limiting disease, a life-threatening or terminal diagnosis or life-threatening injury, or upon admission to a skilled nursing facility, a long-term care facility (as defined by the Secretary), or a hospice program.

See any mention of ‘voluntary’ in Section B?

Yes, folks, even if you can somehow dodge the end-of-life consultation while you’re at home, once you’re admitted to a medical facility that is reimbursed by Medicare, you’re going to get it whether you like it or not.

Is it really too much of a stretch to think that if something, in proposed legislation, is meant to be voluntary, that the legislation so stipulates, and that where something is not voluntary, that the word “voluntary” (or the clear implication of voluntariness) is absent?

If you think it is, indeed too much of a stretch, go read the bill.

Show me where it stipulates, in black and white, that the ‘advance care planning consultation’ is voluntary.

Palin’s "Death Panels" Are Already Here

Former Alaskan Governor Sarah Palin made some comments on Friday that seem to have gotten the pro-death healthcare reform side in a bit of a dither.

Here’s what Palin said:

The Democrats promise that a government health care system will reduce the cost of health care, but as the economist Thomas Sowell has pointed out, government health care will not reduce the cost; it will simply refuse to pay the cost. And who will suffer the most when they ration care? The sick, the elderly, and the disabled, of course. The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s “death panel” so his bureaucrats can decide, based on a subjective judgment of their “level of productivity in society,” whether they are worthy of health care. Such a system is downright evil.

Apparently the pro-healthcare reform lobby took exception to Palin’s assertion of a “death panel.”

Now, I’m not sure what else you call proposals for government apparatchiks to monitor and control the treatments doctors hand out, and who may well refuse to allow doctors to use some treatments, thereby resulting in the death of some of their patients.

But, as much as I think Palin’s comments are right on the money, let’s remember that we already have such death panels operating in hospitals all over the country.

And we’ve had them for quite a while.

Exhibit A: Texas.

When former President George W. Bush was Governor of Texas, he signed into law the Texas Advance Directives Act of 1999, the provisions of which allow exactly what Palin suggested – a panel that decides if some patients should die.

Here’s what the law allows: Any hospital can, legally, give notice that it is stopping all patient treatment 10 days after the decision has been conveyed to the patient’s loved ones.

The reason for stopping treatment? The hospital has decided that any more care is considered futile. That is, any more care is essentially useless and wasteful, because the patient will never get better.

This decision is made exclusively by the hospital panel. Loved ones have no say in how this is decided.

Not a word.

This decision can be made even if the family is able and willing to pay for all care themselves, and the law overrides any advance directives the patient may have had, saying, for example, that all treatment should be continued until death.

Utilitarian? As Palin might say, you betcha!!

The logic’s pretty simple, actually:

You’re not getting healthier; it’s a waste of money to spend any more treatment on you. We will use those expensive treatments on people who will have a better chance of getting better.

In other words, hurry up and die.

That’s what happened in the fight to keep treatment going to poor Emilio Gonzales in 2007, and to many others like him across the country.

In the interests of fairness, of course, loved ones, once informed of the hospital’s decision, may then “appeal.” That means hiring lawyers to get a court injunction to delay the end of treatment.

Yes, folks, in Texas you will need to hire a lawyer to prevent the hospital from killing your loved one.

If this isn’t a version of a “death panel,” I don’t know what is.

President Obama: Potential for Getting Healthy? You Win!!

Let’s be clear: President Obama’s push for healthcare reform will significantly change the way people with serious medical conditions, especially among the elderly, those with disabilities, and the terminally ill, will be treated.

Well, not treated, actually.

There’s no doubt that the President’s message, hammered relentlessly at every turn, is made in starkly economic terms – that medical care is very expensive, costs need to be controlled, and resources have to be allocated in new ways.

That’s half the pitch.

Here’s the other half: Because of this problem, it’s important to see which groups of people disproportionately consume the lion’s share of medical care dollars.

We already know: People with disabilities, people with serious chronic illnesses, the terminally ill, and the elderly.

The president hasn’t gotten around to making his economic case about people with disabilities yet, but he has in terms of the elderly and the terminally ill. My take is that among the targeted groups, it’s the disability community that will raise stiff opposition. The elderly and the terminally ill are more vulnerable, and are less likely to protest.

Let me put the president’s strategy more bluntly:

"Medical care is expensive. Some people get a lot of care, others very little. Many people who get a lot of expensive care are the elderly, those with disabilities, and those who are probably not going to ever be as healthy as they used to be. We don’t have the money to pay for every expensive procedure for everyone, so we need to decide who gets the care that’ll give us most bang for the buck."

The President doesn’t say it this way, instead he uses a euphemism it’s hard not to like: Health. We must give medical care to make people healthier.

Note what’s not said: If you have no prospect of getting healthy, then the government needs to step in and decide whether or not you are worth getting the treatment.

President Obama drive this point home in his interview to the New York Times in April (all italics are mine):

And part of what I think government can do effectively is to be an honest broker in assessing and evaluating treatment options. And certainly that’s true when it comes to Medicare and Medicaid, where the taxpayers are footing the bill and we have an obligation to get those costs under control. And right now we’re footing the bill for a lot of things that don’t make people healthier.

The president drummed the “Health” theme again in his ABC News Health Care Forum at the White House last week:

But here's the problem that we have in our current health care system, is that there is a whole bunch of care that's being provided that every study, every bit of evidence that we have indicates may not be making us healthier.

And later:

And in terms of how doctors are reimbursed, it's going to be the same system that we have now, except we can start making some changes so that, for example, we're rewarding quality of outcomes rather than the number of procedures that are done. And this is true not just for doctors, it's also true for hospitals. One of the things that we could say to hospitals is, reduce your readmission rate, which is also often a sign that health outcomes have not been so good.

Now, we've put forward some specific ways of paying for the health reform that we talked about. About two-thirds of the cost would be covered by re-allocating dollars that are already in the health care system, taxpayers are already paying for it, but it's not going to stuff that's making you healthier.

Prediction: If the President has his way, expensive medical care will be redirected to the winners in this money game, those who have the potential to be healthier.

If you have a disability, if you’re elderly and in poor health, or if you have a severe chronic or terminal condition, you lose.