22 March 2012

Doctors do it Differently

Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. It was diagnosed as pancreatic cancer by one of the best surgeons in the country, who had developed a procedure that could triple a patient's five-year-survival odds—from 5% to 15%—albeit with a poor quality of life.

[DOCTORS]Arthur Giron

What's unusual about doctors is not how much treatment they get compared with most Americans, but how little.

Charlie, 68 years old, was uninterested. He went home the next day, closed his practice and never set foot in a hospital again. He focused on spending time with his family. Several months later, he died at home. He got no chemotherapy, radiation or surgical treatment. Medicare didn't spend much on him.

It's not something that we like to talk about, but doctors die, too. What's unusual about them is not how much treatment they get compared with most Americans, but how little. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care that they could want. But they tend to go serenely and gently.

Doctors don't want to die any more than anyone else does. But they usually have talked about the limits of modern medicine with their families. They want to make sure that, when the time comes, no heroic measures are taken. During their last moments, they know, for instance, that they don't want someone breaking their ribs by performing cardiopulmonary resuscitation (which is what happens when CPR is done right). In a survey of 765 doctors, they found that 64% had created an advanced directive—specifying what steps should and should not be taken to save their lives should they become incapacitated. That compares to only about 20% for the general public. (As one might expect, older doctors are more likely than younger doctors to have made "arrangements," as shown in a study by Paula Lester and others.)

Why such a large gap between the decisions of doctors and patients? The case of CPR is instructive. A study by Susan Diem and others of how CPR is portrayed on TV found that it was successful in 75% of the cases and that 67% of the TV patients went home. In reality, a 2010 study of more than 95,000 cases of CPR found that only 8% of patients survived for more than one month. Of these, only about 3% could lead a mostly normal life.

Unlike previous eras, when doctors simply did what they thought was best, our system is now based on what patients choose. Physicians really try to honor their patients' wishes, but when patients ask "What would you do?," we often avoid answering. We don't want to impose our views on the vulnerable.

The result is that more people receive futile "lifesaving" care, and fewer people die at home than did, say, 60 years ago. Nursing professor Karen Kehl, in an article called "Moving Toward Peace: An Analysis of the Concept of a Good Death," ranked the attributes of a graceful death, among them: being comfortable and in control, having a sense of closure, making the most of relationships and having family involved in care. Hospitals today provide few of these qualities.

Written directives can give patients far more control over how their lives end. But while most of us accept that taxes are inescapable, death is a much harder pill to swallow, which keeps the vast majority of Americans from making proper arrangements.

It doesn't have to be that way. Several years ago, at age 60, my older cousin Torch (born at home by the light of a flashlight, or torch) had a seizure. It turned out to be the result of lung cancer that had gone to his brain. We learned that with aggressive treatment, including three to five hospital visits a week for chemotherapy, he would live perhaps four months.

Torch was no doctor, but he knew that he wanted a life of quality, not just quantity. Ultimately, he decided against any treatment and simply took pills for brain swelling. He moved in with me.

We spent the next eight months having fun together like we hadn't had in decades. We went to Disneyland, his first time, and we hung out at home. Torch was a sports nut, and he was very happy to watch sports and eat my cooking. He had no serious pain, and he remained high-spirited.

One day, he didn't wake up. He spent the next three days in a coma-like sleep and then died. The cost of his medical care for those eight months, for the one drug he was taking, was about $20.

As for me, my doctor has my choices on record. They were easy to make, as they are for most physicians. There will be no heroics, and I will go gentle into that good night. Like my mentor Charlie. Like my cousin Torch. Like so many of my fellow doctors.

20 March 2012

Slippery Slopes & Sausages

Tony Nicklinson was on a business trip to Athens 7yrs ago when he had a stroke……

“It left me paralysed below the neck and unable to speak. I need help in almost every aspect of my life. I cannot scratch if I itch, I cannot pick my nose if it is blocked and I can only eat if I am fed like a baby - only I won't grow out of it, unlike the baby. I have no privacy or dignity left. I am washed, dressed and put to bed by carers who are, after all, still strangers. You try defecating to order whilst suspended in a sling over a commode and see how you get on.

I am fed up with my life and don't want to spend the next 20 years or so like this. Am I grateful that the Athens doctors saved my life? No, I am not. If I had my time again, and knew then what I know now, I would not have called the ambulance but let nature take its course. I was given no choice as to whether or not I wanted to be saved. However, I do concede that it was a fair assumption given that I had asked for the ambulance and associated medical staff.

What I object to is having my right to choose taken away from me after I had been saved. It seems to me that if my right to choose life or death at the time of initial crisis is reasonably taken away it is only fair to have the right to choose back when one gets over the initial crisis and have time to reflect.

I'm not depressed so do not need counselling. I have had over six years to think about my future and it does not look good. I have locked in syndrome and I can expect no cure or improvement in my condition as my muscles and joints seize up through lack of use. Indeed, I can expect to dribble my way into old age. If I am lucky I will acquire a life-threatening illness such as cancer so that I can refuse treatment and say no to those who would keep me alive against my will.

By all means protect the vulnerable. By vulnerable I mean those who cannot make decisions for themselves just don't include me. I am not vulnerable, I don't need help or protection from death or those who would help me. If the legal consequences were not so huge i.e. life imprisonment, perhaps I could get someone to help me. As things stand, I can't get help.

I am asking for my right to choose when and how to die to be respected. I know that many people feel that they would have failed if someone like me takes his own life and that life is sacred at all costs. I do not agree with that view. Surely the right and decent thing to do would be to empower people so that they can make the choice for themselves. Also, why should I be denied a right, the right to die of my own choosing when able bodied people have that right and only my disability prevents me from exercising that right.”

Tony is asking the court to consider if someone who helps him to die can use a defence of 'necessity' against a charge of murder. The ‘necessity’ defence was set out in a case in 2001 concerning the fate of conjoined twins. It goes like this……

“An act which would otherwise be a crime may in some cases be excused if the person accused can show that it was done only in order to avoid consequences which could not otherwise be avoided, and which, if they had followed, would have inflicted upon him or upon others whom he was bound to protect inevitable and irreparable evil, that no more was done than was reasonably necessary for that purpose, and that the evil inflicted by it was not disproportionate to the evil avoided. The extent of this principle is unascertained. It does not extend to the case of shipwrecked sailors who kill a boy, one of their number, in order to eat his body. ”

In the case of the conjoined twins, if they operated, one twin would die. If they didn’t, both would.

In Tony’s case the inevitable and irreparable evil that will be prevented is the continuation of his unbearable suffering and, in meeting his need, a doctor would be both ending his suffering and meeting his patients autonomous wishes. As Judge Charles put it:

1. if he had the physical ability to do so, he could lawfully end his suffering by ending his life,

2. he could lawfully refuse food and water and so end his suffering, by so ending his life, in a drawn out and painful way (subject to the palliative care that could lawfully be given to him and may lead to a quicker death), and

3. if his condition was such that he would die if treatment was withdrawn, he could lawfully refuse such treatment, and so end his suffering by so ending his life, but

4. anyone who assists him by action (rather than the discontinuance of care together with palliative care) to end his suffering by ending his life would be committing a crime.

And further....."So, the Claimant asserts that it is at least arguable that the common law should develop or change to provide a lawful route to ending his suffering by ending his life at a time of his choosing with the assistance by positive action of a doctor in controlled circumstances that have been sanctioned by the court."

Indeed, the Judge found that such was very arguable, to the extent that he was minded to allow this case to proceed to the High Court while noting, perhaps with a little irritation, that case after case present to the courts, while parliament displays neither the wit, will, or wisdom to really get a grip on it.

That situation really isn’t going to change: we now have the technology and medical skills necessary to keep a body alive in circumstances that would have been inconceivable not more than a few generations ago. In the vacuum of uncertainty, legal and moral floundering, are caught the suffering patients, the distressed relatives and the doctors who, fearful of a lawsuit, are obliged to fan even the faintest spark of existence back into a flame resembling life.

Shortly we will be meeting the slippery slope merchants: they argue that it is far too dangerous to tinker with the law around dying because of a class of people called 'The Vulnerable'. More often than not, I think, that argument is one used to disguise the real argument which is to do with the sanctity of life, which is non-negotiable given. Life is a gift from God. It is in the dominion of God. It can only be given and taken away by God.

But if that's the case, what on earth are we doing trying to cure cancer, or alzheimers disease, or MS or cystic fybrosis, or parkinsons disease? Why did we wipe out smallpox? Why are we trying to protect ourselves from H5N1 or HIV? Aren't they all part of God's plan too?

Most sanctity of life proponents seem to hold the position, (though there are some variants), that the value of [human] life is supreme and absolute in all circumstances. Curiously though, many also support the death penalty, some wars, and homicide for the purposes of self defence.

Because SL proponents hold life to be the supreme, the absolute value, it must be held onto for as long as is humanly possible, regardless of circumstance or of the wishes of the person whose life it is: because it isn't really theirs. But although sanctity of life positions usually have at root some kind of unalterable religious dogma, they need not, as they can equally well be held from a secular, philosophical standpoint for the relative clarity and simplicity of decision making offered in the arena of death and dying. My view is that that clarity and simplicity are illusory.

SL proponents seem simply to be paralysed by dogma when it comes to having to make the tough decisions about end of life choices that modern medicine has made necessary. If we continue to avoid confronting these really heartbreaking and difficult choices, won’t history look back on us as moral cowards?

When, or if, you discard the sanctity of life position though you have to start asking the tricky questions: what does value of life mean? Value to who? Are all lives of equal value and, if not, why not? When you can’t save everyone, who do you save, and why? Is it only human life to which you ascribe such value, why is that? If ‘value’ is a variable, what are the variables? And so on. Already it seems almost impossible to cope with this degree of complexity with clarity, and if you get the answers wrong, could you very much be at the top of a slippery slope?

“There is more to fear than death,” sais Peter Schuber, “there is the fetishism of our technology, the torture of dying persons, the abuse of brain-dead bodies, the manipulation of the emotions of survivors, the impoverishment of dependents, and the continuing failure to face and accept death.”

But, whenever I hear the ‘slippery slope’ arguments come out, I get a big red flashy neon warning thingy going off in my head. I’ve come to expect to hear words and phrases calculated to instill fear and insecurity, to warn of an imminent slide into moral depravity and about real dangers posed to ‘The Vulnerable.’ I also expect to hear vague generalisations, obfuscations, unevidenced assertions and a whole lot of non sequiturs. I hardly ever see references to reliable academic research. I never hear about the metaphorical equivalents to ice axes, rope, crampons and a damn good pair of climbing boots to be used on said slippery slopes.

But why is the obsession with slippery slopes always to do with birth, with death and dying, with marriage, with sex? Isn’t there a slippery slope from Private Finance Initiatives to the break up of the NHS? Maybe there’s one from capitalism to financial market collapse? Is there one from an integrated national police service to quasi-official, privatised community vigilantism? One from a national road transport infrastructure to private toll booths on corporately owned roads? If we must concentrate on sex, could there be one from enforced clerical celibacy to the institutional child abuse by religious? All these are in the news recently. Maybe some slippy slopes are just more importantly slippier, in more importantly slippy ways than others?

The thing is, I think there are dangers that have to be carefully thought through. Especially, I worry about euthanasia legislation in countries that have privatised, insurance led health care systems rather than (for the time being anyway), national health services free at the point of delivery for all.

I don’t think those worries should stop us though and I think we should be taking careful note of such findings as the report on two decades of euthanasia practice in the Netherlands.

Just to quote from its conclusion….

“Two decades of research on euthanasia in the Netherlands have resulted in clear insights into the frequency and characteristics of euthanasia and other medical end-of-life decisions in the Netherlands. These empirical studies have contributed to the quality of the public debate, and to the regulating and public control of euthanasia and physician-assisted suicide. No slippery slope seems to have resulted. Physicians seem to adhere to the criteria for due care in the large majority of cases. Further, it has been shown that the majority of physicians think that the euthanasia Act has improved their legal certainty and contributes to the carefulness of life-terminating acts. In 2005, 80% of euthanasia cases were reported to the review committees. Thus, the transparency envisaged by the Act still does not extend to all cases. Almost all unreported cases involve the use of opioids, and are not considered to be euthanasia by physicians. More education and debate is needed to disentangle in these situations which acts should be regarded as euthanasia and which should not.

Medical end-of-life decision-making is a crucial part of end-of-life care. It should therefore be given continuous attention in health care policy and medical training. Systematic periodic research is crucial for enhancing our understanding of end-of-life care in modern medicine, in which the pursuit of a good quality of dying is nowadays widely recognized as an important goal, in addition to the traditional goals such as curing diseases and prolonging life.”

I know I couldn’t look Tony Nicklinson in the eye and deny him his wish because of what ‘I’ feel or because ‘We’ are incapable of coming to terms with what he wants. Could you?

This is already overlong.... and I’ve an appointment with a sausage casserole. Have to leave marriage for another day :-)

08 March 2012

mr b

dig trench..layer of muck...layer of soil...sprinkle with lime..another layer of soil...sprinkles of Mr Bethels Purple Podded Peas...another layer of soil...water in...another sprinkle of lime...wait for summer.

07 March 2012

California..Oh California

California must be a very funny place. The supreme court granted the right for gay couples to marry, then they took it away again. That's very puzzling. What if they had granted freedom to the slaves and then said "ooops no, sorry, got that one wrong....back to the plantations with you." What if, in 1967, they had granted the right for inter-racial couples to marry and then taken it away again 6 months down the line? What if they said "ooops, done it again...big mistake.... dissallowing racial segregation in schools, better recinde that one and allow racial segregation again? Can you imagine? You can't grant freedom and then take it away again without getting into a world of hurt.

We come out of a world where all these things were once the norm, a world where women couldn't vote or own property, where to be gay meant hiding as a criminal, or thrown in gaol, or beaten up, or killed, or shunned by family and society. To live in a world of shame and darkness and misery, to put on an act for family, friends and colleagues, to have to live a lie and a life where, ultimately, those who have loved you are betrayed, not by you, but by the life you've been forced to live.

If we grant this freedom here, as we should, and as all the polls say we want, let us not be stupid enough to take it away again. If we believe in equality, let us tell the religious bigots, very loudly, to please stop playing semantics with peoples lives.

05 March 2012

the sky isn't falling

Poor Cardinal O'Brien is foaming at the mouth at the possibility of same sex marriage. His panic and hysteria are approaching epic proportions. One can only hope he carries on, as every spittle flecked utterance of bigotry further exposes him to be the morally bankrupt individual he clearly is, and demonstrates how utterly stupid and content free his arguments are.

The best he can muster up are appeals to authority, appeals to belief, appeals to tradition, appeals to fear, begging the question and a host [sic], of other logical fallacies.

Until he comes up with some actual evidence that could possibly justify the harms entailed in denying the fundamental human right of marriage to a partner of your own choosing, he is only going to continue to make himself a laughing stock.

The thing is, he can't....because there just isn't any - as Judge Walker discovered in the recent challenge to the unconstitutionality of proposition 8 in California.

It's all rather bizarre as civil unions already amount to the same thing as marriage, so O'Brien is just getting hysterical about semantics.

Srsly, calm down, the sky isn't falling.