End-of-life compassion slowly winning

If you think you might die some day, and you’d like to do it with as much dignity and as little pain as possible, things are looking up. Which is encouraging to me, a believer in end-of-life and reproductive rights both — and progress in one out of two causes is something to cheer about.

credit acpinternist.org
Credit acpinternist.org

The outlook for a compassionate end to this life in the U.S. continues to brighten. In a recent New York Times article summing up advances that are being made in multiple states,reporter Erik Eckholm quotes my good friend Barbara Coombs Lee, President of Compassion and Choices: “There is a quiet, constant demand all over the country for a right to die on one’s own terms, and that demand is likely to grow as the baby boomers age.”

Lee, a baby boomer herself, is in a position to know. She has been at the forefront of the death with dignity movement since it was in its infancy. We first met when I was researching Dying Unafraid (Synergistic Press, 1999) and she was head of Compassion In Dying, headquartered in Seattle. That group had formed, I learned during a weekend spent with leaders and volunteers in the late 1990s, “because we got tired of reading headlines about people with AIDS jumping off of highway overpasses. And we thought there had to be a better way to die.” Compassion In Dying later merged with End-of-Life Choices, which had itself grown out of the somewhat more in-your-face Hemlock Society, to become Compassion and Choices. (And I am proud to have been a part of C&C since its inception as a volunteer, former local board chair, current leadership council member and general cheerleader.)

In those early days, all was not optimism. While Oregon was proving that a physician-aid-in-dying law could work, efforts elsewhere were failing with heartbreaking irregularity. The one most painful to me culminated in the defeat, in 2006, of a bill which would have legalized compassionate dying — in other words, with the aid of one’s physician if one so chose — in California. Assembly members Patty Berg and Lloyd Levine introduced the legislation, and polls showed overwhelming support among Californians, including a majority of California physicians. Victory seemed all but certain, despite a vigorous and expensive campaign against the bill by the Catholic Church (not most Catholics, just Catholic officialdom) and the California Medical Association (of which a small percentage of CA doctors are members.) At the judiciary committee hearing chaired by then CA Senator Joe Dunn  — who had loudly proclaimed his support —  Dunn suddenly had a change of heart. Something about a conversation with his priest, he said in a rambling commentary. Dunn then cast the deciding vote against the bill and it died an unnatural death in committee. A few weeks later Dunn was termed out of the California legislature and took a job — surprise, surprise — as CEO of the California Medical Association. It was not my personal most encouraging experience with the democratic process.

Now, however, sanity is prevailing. The option of choosing a compassionate death is legal in Washington, Vermont, Montana and New Mexico and the cause is gaining in other states. As Steve Heilig, another highly esteemed friend who is co-editor of the Cambridge Quarterly of Healthcare Ethics, points out in a current letter to the New York Times, “Progress is possible if carefully and ethically pursued.”

If only there could be a careful, ethical pursuit of progress — instead of the ongoing, reckless, politically and religiously-driven backward march we’re seeing — for reproductive rights.

Dying way too young: Journalist Michael Hastings

News of the death of 33-year-old Michael Hastings in a fiery car crash June 18 has left everyone who knew him stunned. And it’s also left a giant hole in the heart of Real Journalism. Hastings was a Real Journalist.

I never knew Michael Hastings. But a few years ago, when we were both contributing to the late lamented True/Slant.com, he sent me a comment on something I’d written. That led me to check out what he was writing, which left me in the dust within a very few minutes. For a storyteller like me to get an affirmative nod from a journalist like Hastings felt like sort of a large gold star.

This is not to knock storytelling, which I consider one top way to convey truth (especially about difficult topics like death-and-dying or abortion.) Storytelling is broadband, real journalism is specific and it is a rare and precious thing.

Real journalism is fearless, aggressive, relentless and uncorruptible. When practiced by people like Michael Hastings it lets the rest of us know what is really happening in our democracy — which is the only way a democracy survives.

Former True/Slant now New York Times editor Michael Roston summed up the best advice to aspiring journalists who survive Hastings: “Try to be like him.”

Grief: A mind/body conundrum

Physician treating a patient. Red-figure Attic...
Image via Wikipedia

This is a cautionary tale.

The main character, a woman of a certain age, became concerned about suddenly being short of breath. Nine months earlier she had defended her title in a 5k community road race, so it didn’t seem to make sense that she would be huffing and puffing after one block on a slight incline. She worried more and more, and finally went to see her primary care physician.

“No,” said the doctor, “this should not be. We’ll start with a stress test to check out the heart, and then go with a pulmonary function test. Recent x-rays haven’t shown anything wrong with your lungs, but we’ll want to make sure.”

The patient aced the stress test, which relieved everyone. Subsequently, at the end of the pulmonary function tests she did the six-minute walk, as instructed, regular pace, and the nurse who had been following along in case she conked out said, “Well, you’ve got no shortness of breath, and I’m exhausted.”

In between, an interesting thing had happened. During a visit with her niece, who is a family practice physician in another state, the medical dilemma happened to come up. “Well,” said the niece, rather gently, “you’re doing all the right things: seeing your doctor, having a stress test first, checking pulmonary function. But when all is said and done you did just lose a sister to respiratory failure, while you were still grieving the loss of another sister almost within the same year…   It could be that your body is just trying to tell you something.”

Almost immediately I felt better. Went ahead with the pulmonary function test just to err on the side of caution, but by then I was feeling so much better that just walking around that hospital corridor at what felt a leisurely pace was still enough to wear out a nurse who is 10 years younger. She hadn’t told me she was required to follow. And of course, at the start of it all, I hadn’t thought to mention anything about sibling loss to my primary care doctor. Communication is good.

Soon afterwards, I attended a meeting at which the keynote speaker was Lyn Prashant, founder of an organization called Degriefing. Among the handouts was a page headed “Common Grief Reactions,” featuring lists of physical, emotional and mental responses to grief. Number 5 under Physical? You guessed it: shortness of breath.

Who knew? Certainly not this writer, who has only spent the past three decades intensely involved with end-of-life issues. Hospice volunteer, part of an AIDS support group throughout the 1990s, currently a chapter board member and client volunteer for Compassion and Choices, author of dozens of articles and one book about end-of-life issues. Never heard of any of those physical manifestations of grief — or if I had, they were too abstract to register.

That was then, this is now: Loss, sorrow, grief — is it all in your head? Maybe not.

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.