Monday, December 27, 2010

December 27, 2010 - Putting the "Death Panel" Myth to Rest

A New York Times article published on Christmas Day reports the good news that sanity has finally prevailed in the halls of government, as further regulations connected with the landmark healthcare-reform legislation enable Medicare funding for advanced end-of-life planning.

This news comes - to my mind, anyway - with a particular sense of relief. Opponents of healthcare reform have cynically and cruelly exploited dying people for their own political gain, by raising up the myth of government "death panels." According to that improbable scenario, government bureaucrats would have played a role akin to that of the infamous Dr. Mengele at the Auschwitz concentration camp (he was the camp physician who decided, with a wave of his baton, which new prisoners would go to the barracks and which would be sent directly to the gas chambers).

What the original legislation, in fact, provided was money to pay for annual doctor's office visits - for those critically-ill patients who want them - at which the various options for end-of-life care would be explained. One significant option is hospice - the part of the medical community in which Claire works, providing bereavement counseling and support.

The recent news is that the Obama administration has quietly restored this funding - not through legislation this time, but through regulation-writing (it had been in the original bill, but was pulled out in reaction to the "death panel" kerfuffle).

I'm especially glad to see this funding restored because of situations I've seen arise time and again in my ministry (and which Claire sees much more often in hers). Far too often, patients avoid having the hospice discussion with their doctors and family members until death is imminent and it's too late for them to derive much benefit from hospice care. When patients' time on the program is measured in hours rather than days, there's not a lot the hospice team can do for them.

Hospice care is not intended to be delivered in such an accelerated time frame. Yes, it's designed for patients who are expected to live fewer than six months, but a lot can be accomplished in that period of time, improving significantly patients' comfort and quality of life.

Talking about hospice is NOT giving up on patients. Quite the contrary, it's about empowering seriously ill patients to live the remaining portion of their lives as they wish. If patients and their families decide to continue aggressive treatment, so be it. If they opt, instead, to go home to a hospital bed in the living room, with advanced pain control and unlimited visits from their grandchildren, then that's their decision and it ought to be respected.

Irrational fear of "death panels" has kept people off hospice care who should have been receiving it much sooner - and would very much have wanted it, had they understood the patient-centered philosophy behind it. This restored funding will allow doctors to plan significant time for consultations that will equip patients and family members to make their own, carefully considered decisions about backing off from aggressive treatment and focusing more on palliative care.

Time and again, I've heard bereaved family members say they wish their loved one had signed onto hospice earlier, but they just didn't have a sense of what hospice is all about until it was nearly too late.

Chalk this one up as a triumph for patients' rights: to make their own, well-informed healthcare choices.

Thursday, December 23, 2010

December 23, 2010 - A Champion Gift-Giver

There's lots of talk, this time of year, about gifts and gift-giving, but here's a gift-giving story that will warm your heart. It comes from the sports pages, of all places.

Matt Hoffman is a defensive end for the Rowan University football team, here in New Jersey. Recently he was one of three runners-up for the Gagliardi Trophy, which is given to the most outstanding football player in Division III of the NCAA. It's that Division's equivalent of the Heisman Trophy.

Matt had put himself on the National Bone Marrow Registry's list of potential stem-cell donors some time back. Last November, his number came up. Matt's blood chemistry, it seemed, was a good match for a non-Hodgkin lymphoma patient, a stranger to him, who urgently needed to undergo the transplant procedure.

The only problem was, for Matt to say yes to the request to donate meant he would have to take some powerful medicines, whose side effects would prevent him from playing in the final football game of his Junior-Year season.

The voting for prestigious sports awards like the Gagliardi Trophy is heavily dependent upon statistics. For an outstanding player like Matt Hoffman to miss even a single game is a really big deal. It can mean the difference between being the trophy recipient and being the runner-up (as Matt turned out to be).

Matt didn't hesitate. He told his coach he couldn't play that day, because he had to go into the hospital to donate stem cells. For a stranger.

A few weeks ago - in the moments before the Gagliardi Trophy awards ceremony - Matt had the opportunity to meet the man who received his stem cells. The National Bone Marrow Registry puts a one-year moratorium on sharing the names of recipients, but after that year had elapsed - and with the consent of both parties - they brought the two men together. Matt had the opportunity to meet Warren Sallach, a 59-year-old road maintenance worker from Texas, who continues to be in full remission more than a year after receiving his stem cells.

It was an emotional occasion for both of them. Matt called it "one of the best moments of my life."

I'd be hard-pressed to think of a better gift-giving story than that. Matt Hoffman may be a runner-up for the Gagliardi Trophy, but he comes in first for an even more prestigious trophy, in my book.

Merry Christmas, one and all!

Tuesday, December 21, 2010

Why I Do It

Sometimes I wonder why I write this blog - why I started it in the first place; why I kept it up during some very difficult days, when I hardly felt up to it; why I keep doing it, more than 5 years after my diagnosis and more than 4 years into watch-and-wait so-called "treatment."

An answer has turned up in Britain's Guardian newspaper, as a psychologist speculates on why people write illness blogs. Here, a fellow cancer blogger, Sue Eckstein, quotes Dr. Tom Farsides:

"I'm just one of many hundreds of people who blog about their illness or trauma, and, according to Dr Tom Farsides of Sussex University, this is not surprising: 'Writing is an effective way of processing and coming to terms with challenging and potentially traumatic events,' he says. 'But blogging is more than the mere act of writing. It also fosters senses of both control and social connection, each of which is crucial for psychological wellbeing.'"

Oh, yeah. That's why.

Tuesday, December 07, 2010

December 7, 2010 – Remembering Elizabeth

Sad news, this evening, of the death of Elizabeth Edwards. Evidently, in the end it happened very quickly for her, which is a mercy.

The “late unpleasantness” of her husband’s irresponsible behavior has dominated the headlines in the past year or so, and many of us were very sorry to see that burden added to those Elizabeth was already carrying. It speaks to the strength of her character that, through faith and sheer determination, she somehow found the inner strength to be there for her family, to face the television cameras with her head held high and to continue to use her celebrity status to exercise compassion for others.

Her books, in which she candidly shared her life story, have been an inspiration.

Newsweek’s Jonathan Alter, himself a lymphoma survivor, shared a frank exchange he had with Elizabeth about her Christian faith, and the doubts she sometimes experienced, about both her cancer and the tragic, accidental death of her son, Wade:

“When I arrived, Elizabeth told me that cancer had essentially freed her to say whatever the hell she wanted. Then she proved it, by questioning the one thing all presidential candidates and their spouses must embrace - religious faith: ‘I’m not praying for God to save me from cancer. God will enlighten me when the time comes. And if I’ve done the right thing, I will be enlightened. And if I believe, I’ll be saved. And that’s all he promises me.’ But did she believe? Here she went further than any public figure this side of Christopher Hitchens.

‘I had to think about a God who would not save my son. Wade was – and I have lots of evidence; it's not just his mother saying it – a gentle and good boy. He reached out to people who were misfits and outcasts all the time. He could not stand for people to say nasty things about other people; he just didn’t want it. For a 16-year-old boy, he was really extraordinary in this regard. I wish I could take credit for it, but I can’t. You’d think that if God was going to protect somebody, he’d protect that boy. But not only did he not protect him, the wind blew him from the road. The hand of God blew him from the road. So I had to think, ‘What kind of God do I have that doesn’t intervene - in fact, may even participate - in the death of this good boy?”

That’s so like Elizabeth Edwards. She always told it like it is. Unlike so many people in public life who live elegantly fabricated lives, she was real.

Elizabeth will be well-remembered by those of us in the cancer community as a determined survivor, an encourager of others, an activist for change - and yes, a woman of faith. Let us offer prayers of thanksgiving for her life and witness.

Thursday, December 02, 2010

December 2, 2010 – 5-Year Cancerversary

Hard to believe it’s been five years already, but it has. Five years ago today, I was diagnosed with cancer.

So much has happened since then. Those early days of uncertainty and fear, knowing that life would never be the same again. Telling the kids. Telling the church. Arranging for time off, to coincide with the predictable valleys in the chemo cycle. Persistent thoughts of dying, even though Drs. Lerner and Portlock and everyone else in the know kept assuring me I have one of those so-called "good" cancers - one that usually responds to treatment.

Once the treatment train had left the station, it picked up speed incredibly fast – or so it seemed. One day, I was given the news. The next, I was being wheeled into an operating room to get my port implanted.

My story didn’t unfold quite that fast, of course. That was just the way it felt to me. There was actually about a month between diagnosis and my first dose of chemo. I can’t recall much of what I did during that time. Once cancer enters your life, it’s hard to think of anything else. I felt numb.

Used to be, patients who reached their five year cancerversary without recurrence were considered cured. I still run into people who think that’s the case. In reality, cancer is such a multifaceted phenomenon that it’s impossible to generalize.

In my case, remission only lasted eight months – although, in truth, the cancer was probably there all along, lurking below the radar of those high-tech scans. “Watch and wait” was Dr. Lerner’s recommendation, confirmed by Dr. Portlock. Just sit tight. No need to shoot any arrows from the quiver until we absolutely have to. You have no symptoms. So, just sit tight. Trust us. This really is a sensible approach, even though it sounds like lunacy.

So, here I am today. Still watching and waiting. I’ve no idea how long it will be before the burgeoning population of cancer cells will reach umpteen million (or whatever the magic number is) and we’ll be discussing which treatment to try next.

Already, there are NHL treatments out there that weren’t available at the time I was diagnosed. Most aren’t quite ready for prime time, but it won’t be long now. Chances are, by the time we’ll be thinking seriously about treatment again, there will be some options available that weren’t even conceived at the time I was first setting out, five years ago.

There’s reason for hope, to be sure. Lord willing and the blood counts don’t rise, I’ll be here to observe quite a number of cancerversaries yet to come.