Tuesday, January 20, 2009

A "Quality Adjusted"? Year

How would you rate the quality of your life—or maybe more to the point, how would a government bureaucrat rate the quality of your life?

This question arises because, according to Dr. Scott Gottlieb, American Enterprise Institute resident scholar, now-President Barack Obama, House Democrats, and incoming Secretary of Health Tom Daschle are interested in reducing spending on health care “by allocating medical products based on ‘cost effectiveness’ (Wall Street Journal 1/20/09).”

Gottlieb points to the United Kingdom where a government agency has decided the following: “…$45,000 is the most worth paying for products that extend a person’s life by one “quality-adjusted year. (By their calculus, a year combating cancer is worth less than a year in perfect health).”

This has set me to thinking because I have been combating cancer since 1994. At that time I was diagnosed with Chronic Lymphocytic Leukemia (CLL), and in 1995, non-Hodgkin’s Lymphoma (NHL) was added. In 1994, the doctor told me that a typical life span after a diagnosis of CLL was 12 to 25 years. I’ve never asked about the lymphoma.

But in any case, I am now into my 14th year living with cancer. Since my diagnosis, I began a 12-year, third or fourth career teaching composition and literature at the community college level. In 2002, I ran the Seattle marathon for TNT (Team in Training) to benefit the Leukemia & Lymphoma Association. I’ve written a weekly newspaper column for almost five years, and I’ve had the pleasure of caring for my grandson (and more recently his baby sister) two days a week for 3 1/2 years. These have been some of the best years of my life.

Monday, I begin a new regimen of chemotherapy. I’ve been extremely fortunate so far. I haven’t counted or kept track of the number of times I have had chemo, but I have suffered few side effects. One regimen made me nauseous enough to vomit; most have had little ill effect beyond discomfort or impatience.

I am also fortunate to have good insurance through my husband’s former employment, so I also have not kept track of the cost of my treatments. However, I do remember looking at the bill for the last treatment 18 or so months ago. It was $37,000. I was aghast; there’s no way Dale and I could have paid for this ourselves. I’ll admit thinking about that figure and realizing such care is not available to all mixes feelings of guilt with my gratitude.

My cancer suppresses my immune response, and perhaps for this reason I suffered a serious sinus infection all last fall. I lost my hearing for 10 days before Thanksgiving, which made teaching classes interesting, but happily had the hearing restored by having my ear canals drained and tubes inserted. Nevertheless, the experience and doctors’ recommendations convinced Dale, and finally me, that I should retire.

Now, should I worry? Does retirement knock down my “quality-adjusted” life a peg or two? I’m not sure.

I do know that many of the people I have shared the infusion center room with in the past have seemed noticeably sicker than I am. Yet, universally they smile, sometimes ruefully, talk, and engage with all around them. I haven’t heard anyone speak once with self-pity. And most often those receiving chemotherapy are accompanied by spouses, children, even grandchildren, who obviously love them and value their lives. I might be tempted to say that their quality of life, adjusted or not, might surpass a random sampling of customers at a Starbucks coffee shop.

I can’t claim to have the answer to health care problems in this country or in the UK, but stifling investment in new treatments, which will be the result of restricting access to new drugs, isn’t a humane, nor, I believe, a sensible solution. Giving a government bureaucrat the task of ranking another’s quality of life is even less sensible or humane.

I remember discussions when I was younger about the best way to die. Most of those with whom I chewed over that question believed a sudden death the best. I didn’t because I thought I’d be caught, so to speak, with my pants down—unprepared to meet my Maker. You’d think after 14 years living with cancer I’d have a handle on preparedness, but sad to say I don’t. I haven’t been a great deal better person since my original diagnosis, maybe a great deal more grateful person only.

Recently I read in news stories about Father Richard John Neuhaus’ death of a vision he had earlier in his life, in 1993, when he was gravely ill and near death, although he described this as a “near life” experience. He became aware of two “presences” in his hospital room. They gave him a message: “Everything is ready, now.” Father Neuhaus wrote about this in 2000; he said, “what I have learned, what I have learned most importantly is that, in living and in dying, everything is ready now.”

That’s a bit of a puzzle to be sure. In a way I suppose it reinforces the preferences of my old friends. We don’t, and I believe strongly that we shouldn’t, get to choose the time of our death, but Father Neuhaus assures us that whenever that is, everything will be ready. I’ll guess that remains true even if a bureaucrat chooses.


  1. I can not claim to be an expert on healthcare nor could I say that I have the answer to provide a perfect system. I do however think I am uniquely positioned to see the differences in the UK and US systems. In my opinion they both fall short.

    The agency here in the UK that governs healthcare spending you refer to is called NICE; an acronym for National Institute of Healthcare Excellence and is a name as tone-deaf and jarring as the PATRIOT act.

    Guaranteed healthcare as provided throughout the EU has something going for it but I fear that Americans don't realise the implications that go in hand and hand with it. Whenever anybody foots the bill for healthcare, be they private or nationalised, the bottom dollar (or Pound Sterling or Euro or whatever) is by necessity going to be entered, and weigh heavily, into the equation. Only a fool would believe their insurance company or government has each and everyone's individual best interest at heart.

    I believe an open market in healthcare is necessary because of these monetary considerations. Many employers here in the UK offer a private health plan akin to what one would find in the States. The reason being that there are times when NICE, like many HMOs, would deem that a benefit is not worth the cost.

    The next easy target is the pharma companies themselves and the widely held belief that they profit exorbitantly from providing treatments rather than cures. No one has lampooned that more brilliantly than Chris Rock with his Robitussin rant but it has sadly become an almost universal urban legend and conspiracy theory.

    I currently work in marketing these companies products and did work within a pharmaceutical company for 18 months, so that is my full disclosure. What these people who believe that pharma companies are gouging sick people and raking in profits hand over fist fail to understand is the scope of what these companies do. It takes decades to bring a drug to market and for every drug that is successful and does work to treat a disease or disorder, there are literally thousands that didn't work. Those costs must be recovered or there is no reason that anyone would want to attempt to unravel the mysteries of human life and the frailties that beset us.

    Altruism would be wonderful in this world and we would all love to see pain, hunger and sickness disappear. But the unfortunate truth is that it will always cost something. If we limit what a company can earn they will necessarily limit what they do. That will only lead to less innovation and less cures, treatments and even days or months measured in quality of life.

    To play the role of Cassandra: Americans need to be aware that there will always be a cost associated with healthcare and the treatments that are available. The companies that are bringing new treatments and drugs are quite few in number and situated in only a few of the countries on this big planet. To cripple them with regulation would be to the detriment of those we would seek to help.

    That's a big ol' rant of a comment, so I apologise for hijacking your blog. I agree with your post but have a quibble; you are right to be grateful for the treatments that are available today but your cancer couldn't have served as an impetus to be a better person. You have always been the most remarkable person I have known and all of my 'quality adjusted years' have been a result of having you in them.

  2. Ha! The hazards of posting a long-winded comment on someone else's blog; you will inevitably find your grammatical errors. The most egregious is I can't believe I said 'less cures'.

  3. Thanks for your input, El Yanqui, and the affirmation of your last paragraph. You are right about 'less cures' in your second comment. However, judging from what I hear on the news and have read in student papers and the press, hardly anyone noticed.