Granny Can't Die [UPDATED]

Have you ever thought about how we die in America?

I guess there are occasions that a certain latent anger disturbs my usually inscrutable internal peace. Such as this earlier post, for example...

An off-line commenter (nobhilltreehouse) chastised me, saying the following:

Comes across callously and jaundices other posts. I know what you mean but I would have preferred: '"cause these days a dignified death comes with an all expenses unpaid trip to the ICU, replete with tubes, moving parts and tubes ad infinitum" or something like that.

Indeed, it comes across callously and for that, I apologize. Most especially, I am sorry because it deflects attention from an idea worthy of it's own post: how poorly we die in America and how much it ends up costing us.

In fact, my experiences with medical technology have highlighted for me the difficulty of deciding when medical heroics are futile. I really should know better.

I once felt the speed of the losing elderly family members as a blessing in disguise, a kind of nostrum against grief. A couple of years ago I lost a friend to cancer, in part because I couldn't convince her to undergo chemotherapy rather than the naturopathic remedies she preferred. Later I stared at that fearsome suffering we dread and found that technology can diminish as well as create it. For all the suffering, there are people in my life today who wouldn't be there otherwise.

This New Yorker article describes a medical miracle, such as those that frequently grace our televisions achievements that are actually mundane and unimpressive. But consider this amazing story of a 3-year old girl that fell into a frozen Austrian lake and disappeared under ice for over half an hour and was demonstrably brain dead early in the weeks-long efforts to save her life and then rehabilitate her. She is now a normal 5-year old.

Our ICU's are choked with people whose survival prospects are somewhat slimmer, to say the least. The Happy Hospitalist described a man with lung cancer and emphysema/chronic bronchitis who was receiving significant medical care. Would it be reasonable to undertake an effort as complex and resource-intensive as would be necessary to save this man if he had drowned under a frozen Austrian lake? I wouldn't want to be the one trying to say 'no.'

The story of the young Austrian girl carries with it a touch of the magical which is hard to separate from the cold scientific reality of day. But who is to judge? I am far enough away from my days in the ICU to shake my head with the same sense of awe my father, a physician who trained in the 1920's, had as he heard about my experiences in medical school.

I have pointed out in the past that the need for health care is an emotional one. The clinical economic term of "health care purchasing decision" does not speak to the panic a parent would feel if their child slipped into an icy tomb. That panic is no different if it is one's father; cancer and COPD and having lived a full life are pleasantries for the wake, not useful in the moment.

My close personal knowledge of the emotional aspects of health care decisions makes my apparent callousness and cynicism all the more inexplicable. Physicians do not make life and death decisions; typically it is the families that do so.

They need guidance on alternatives to heroic treatments and how realistic it is to expect recovery, so they can weigh it against the granny's wishes and her suffering while under treatment. An army of well-paid counselors and ethicists would cost us less than what we are spending on end-of-life care that I would judge as futile from my comfortable and sometimes jaded perspective. Presumably, a hospitalist and a critical care specialist would have a more aggressive perspective than mine. I would certainly seek out their advice and counsel to make up for my more recently acquired ignorance of the capabilities of a well-trained ICU team.

The problem is that specialists in intensive care can be unnecessarily optimistic at times. They hate losing a patient as much as anyone else. Consider also that their training is focused on saving lives, not letting them go. Our perceptions can shift according to who we're speaking with. If a family member is ill and you have a well-trained, compassionate physician, you will hear a lot about the possibilities that sound as miraculous as an Austrian child who died for several hours, but nobody gave up. Even talking about the risks and the expenses sound like so much fine print disclaimers on a credit card application that no one ever reads.

Problem is that it is expensive. Nobody should have to face the emotional agony of making a life and death decision based on money. Thus health care consumers expect all efforts to be made for our families. This impulse is so strong that we sometimes even make heroic efforts to save the lives of patients with living wills that explicitly limit such efforts. Thus, the bulk of Medicare expenditures are "wasted" on the last year of life.

It is end-of life care, after all. An economist may well define this care as expensive with no discernible return (but I doubt they would slip up so badly). If we define quality as "right care, right time, right person" then we must also define the "right perspective." That would be the perspective of the patient and the family.

This is where individual values are at odds with societal ones and there is no happy medium. Somewhere in the debate over paying for uncompensated care, we need to recognize that patients must get accustomed to being told that they cannot have care they perceive as necessary, because the odds are not good. And anyone who says 'no' is likely to get strung up and shot by a frantic, grieving family member who feels wronged.

UPDATE: Same day, similar thoughts, different blog. Actually, it looks like Panda Bear posted on the same subject yesterday before me, but we must have been working in parallel.

In addition, yesterday's Globe & Mail highlights the conflict between the abilities of medical technology and a cherished Orthodox Jewish value of never giving up hope, no matter how grim or how much it costs. Some may view this point of view as completely untenable from a resource perspective, but it is as old as Maimonides. It is the story of Samuel Golubchuk, a Winnipeg man whose family prevented withdrawal of life support by appealing to Manitoba court. The legal issues in Canada are related to the need for consent to actually remove someone from life support.