Looking at one's own end-of-life issues

A tough story eloquently told by California physician Martin Welsh adds poignancy to the fight for legalized physician aid in dying, and emphasis to the need for patient choice as a consideration in health reform. Dr. Welsh speaks in clear language of his current dilemma:

I am a 55-year-old retired family doctor with a large, loving family and innumerable friends and former patients whom I see often. I am an extraordinarily lucky man.

For the last five years, I have also been a patient. I have ALS (or Lou Gehrig’s disease), a cruel neurological illness in which a normally functioning intellect becomes trapped in an increasingly weak and eventually paralyzed body. Soon, I will die from it.

Through my career, I tried to honor my patients’ end-of-life wishes. But after a quarter-century as a firsthand witness to death, I’ve developed my own perspective.

It’s not that I’m a quitter. I have struggled against adversity of one sort or another all my life, and those challenges have helped prepare me for what I face now. I still delight in accomplishing difficult things, and I always wear a bright red ALS wristband that says “Never Give Up.”

That said, there will come a limit. I have made it very clear to my wife, my family and my doctors that I want no therapy that will prolong my suffering and lengthen the burden on others. I do not want a feeding tube nor a tracheotomy when the time comes that I can no longer eat, drink or breathe for myself.

Dr. Welsh suggests, for himself and others, making a list of 100 things that make life worth living, ordinary things one does every day.

Some are routine, some are “chores,” some are pleasurable. Get out of bed and walk to the bathroom. Kiss your wife. Answer the phone.

Drive your car to work. Go play golf with your friends. Brush your teeth. Write a letter, lick and seal the envelope closed and put a stamp on it. Hug your child.

Of course we do many more than 100 things each day, but for now, just imagine 100 that are essential to the life you live. Now if you take away one, you can still do 99. Is life worth living without being able to smell the rose in the garden? Of course it is! How about losing two or seven, or 23 — is life still worth living? Of course.

But suppose you get to where you’ve lost, say, 90 things, and now with each thing taken away, a bad thing is added…

At some point, no matter who you are or how strong, you can lose enough things that matter — and acquire enough negatives — that the burdens will outweigh the joys of being alive…

Recognizing he’ll reach that point one day, Dr. Welsh looks his destiny squarely in the eye:

…as I face my diminishing list of the 100 things that make life worth living, the choice of quality over quantity has to be mine to make.

Affordable Health Reform

It was actually spoken out loud on NewsHour Friday night: we could have a workable, affordable healthcare system if we would address the excessive costs that go into the last six months of life, particularly the last few days. The remark was immediately followed by the standard caveat: of course, no one is going to suggest doing this.

Good grief, why not? Everybody knows it, a few others have even said it out loud. Sure, it’s political suicide, but if someone were ever brave enough to fall on that particular sword there would be a lot of people around to pull out the sword, cleanse the wound and stand him or her back upright.

It could be done. If individual choice were encouraged and enabled. If physicians had to be honest about the quality of life (if any, usually for a few days or weeks) being bought with aggressive treatment at life’s end. If futile treatment were avoided. If protections were put in place for physicians and hospitals complying with the above, since fear of lawsuit is behind most of the mess. If all of us began to look at — and make clear — what extreme measures we would or would not want.

Big ifs. But the reward would be a workable, affordable system.

On Getting Started, and Re-started…

Front pages of the two east coast newspapers that arrive on our west coast doorstep every morning featured references to a few of the primary issues this column proposes to address: staying active and upbeat while confronting one’s mortality; the multiplicity of housing shifts in late generations; and whether one’s life experiences lead to rigidity or understanding.

 

Even the front page of today’s True/Slant, in Scott Bowen’s innovative take on Boston Globe books and publishing writer David Mehegan’s Over and Out, takes up the end-of-life choices question which has consumed much of my time and energies over the past decade and which I tackled (albeit anecdotally) in a 1999 book, Dying Unafraid.

 

Now. If life experience can be applied to mastery of T/S’s technological tools – which are not, after all, quite so daunting as the above – it will be great joy for Boomers &Beyond to explore these through headline grabs, riffs and commentaries and perhaps some lively reader responses. Stay tuned.