Life, love and palliative care

My greatly beloved sister Jane died this morning, a peaceful end to 84 years of a life extraordinarily well lived. For a few days she had been on palliative care.

Palliative care. File that term away for yourself, your parents, your friends and family. It’s the new best thing, even though for centuries it was the old best thing: keep me comfortable and let life come full circle. For centuries we believed that life was a cycle: birth, Stuff, death. Some people’s stuff was better than others, but there was a general agreement that death happened, so it made sense to ease it along when the time came. Usually it didn’t take long. Often, if ease was not to be had, the family doctor invited everyone in briefly to say goodbye, closed the door and administered a shot of morphine.

Then we invented chemotherapy and ventilators and feeding tubes and miracle drugs and adopted the national attitude that one is supposed to live forever. Plus, we invented lawsuits. So dying turned into something horrid and often painful, something one is really not supposed to do. Physician aid-in-dying for the terminally ill became illegal; even talking about it gave Sarah Palin the death panel willies.

My sister Jane was a gifted artist who told me, a few days before she died, that she’d reached the apex of her career because one of her recent paintings was stolen from a show currently on view. (She was also delighted that others were selling well.) She was a remarkable mother, hostess, book-lover, friend, and about the world’s best big sister. The day after our last conversation she had respiratory failure (quit smoking, please, if you haven’t already) and began to die.

Jane was briefly on a ventilator, which I hated as much as she, but one does what needs to be done. Very quickly she moved from that to palliative care. Her husband, four daughters and assorted grandchildren gathered around to sing songs, hold hands, administer foot rubs, report to her remaining two sisters and innumerable friends that all was well.

This is not an argument against miracle drugs or aggressive interventions when appropriate, or even against feeding tubes and ventilators — although if you catch my children approving such things after I conk my head on the curb please remind them of my explicit instructions to the contrary. But it is an argument to confront mortality, complete your advance directives, talk to family and friends about your own wishes no matter how young and immortal you feel yourself to be, support compassionate and humane dying. Advocating for decent health care for the living wouldn’t be a bad way to start.

Palliative care is a valuable new/old thing. So are big sisters like Jane, although they are hard to come by.

Hospital Safety 101: Didn't Mom Teach You to Wash Your Hands?

San Francisco Chronicle Washington Bureau writer Carolyn Lochhead reported today on a new idea somebody had about making hospitals safer: get folks to wash their hands. Hello?

The president of a leading medical standards organization announced a new program Thursday that is designed to improve health care safety practices, starting with a rigorous approach toward hand-washing by hospital staffers.

And this is serious business.

Hand-washing failures contribute to infections linked to health care that kill almost 100,000 Americans a year and cost U.S. hospitals $4 billion to $29 billion a year to combat, said Dr. Mark Chassin, who leads the Joint Commission, which sets standards and accredits hospitals and health care organizations.

Chassin’s announcement came after Hearst Newspapers published the results of an investigation, “Dead by Mistake,” which reported that 247 people die every day in the United States from infections contracted in hospitals.

Anyone who has ever come home from surgery with an infection, or more specifically anyone whose spouse has come home from surgery with an infection (nasty-wound-tending not having been fully explained in those for-better-or-for-worse lines) will applaud the new program, but it’s hard not to wonder what has taken the medical profession so long. Hospitals have found, Lochhead reports, that “caregivers washed their hands less than 50 percent of the time when they should.”

If there’s ever been a good example of potential savings to pay for universal health care, this is one to top the list. Consumers, we who would do well to wash our own hands when visiting or inhabiting hospitals, owe a debt of gratitude to the Joint Commission (and to Hearst Newspapers for the excellent ‘Dead by Mistake’ series.)

Maybe more sinks will be adorned with the sign that gave my husband and me a healthy chuckle during a recent visit to the Kaiser emergency room:

“Hand-wash unto others” it read, “as you would have them hand-wash unto you.”


Hospitals urged to strictly enforce hand-washing.

More on Health Care: Where the Costs Are

A few interesting factoids were dropped into the health reform debate by New York Times writer Amanda Cox Tuesday:

In 2006, health care expenses among half the United States population totaled less than $800 per individual, according to the federal Agency for Healthcare Research and Quality.

For openers, that seems entirely reasonable. Would that we could actually care for the citizenry at $800 a pop. Keep reading.

But the expenditures were not uniformly distributed throughout the overall population. Spending was far higher among the elderly, the obese and people who identified themselves as unhealthy. Median spending in those groups totaled $2,300 per individual. Although these patients represent just one-third of the population, they accounted for almost 60 percent of health care spending.

I hate to stomp this nearly dead — oops, bad metaphor — horse even further into its grave, but a lot of us, given the chance to talk to our doctors about aggressive, invasive, often futile end-of-life treatments that are going to make our ends horrific might choose to go home and spend our remaining time with palliative care, at peace. A nifty way to cut that $2,300 back down to $800. But Senator Grassley and others think we should now allow those conversations.

The truth may be too obscured by the cleverly promoted lies, but the issue is about choice. Compassion. Comfort. Peace. Sanity. If anyone could get this truth across to seniors, that one critical segment of reform might still survive. And personally, I’d like to have the option of saving the rest of you taxpayers my $1,500.

via Making Sense of the Health Care Debate – Prescriptions Blog – NYTimes.com.

Counseling Improves Life's End. Surprise!

Knowledge, care and compassion really do bring peace. Why should this be a surprise? And why should a few strident opponents prevent those approaching life’s end from having this benefit?

A study appearing in today’s Journal of the American Medical Association points out the benefits of end-of-life counseling, although the widespread misinformation loose in the land may have doomed what should be a significant piece of health reform.

As a political uproar rages over end-of-life counseling, a new study finds offering such care to dying cancer patients improves their mood and quality of life.

The study of 322 patients in rural New Hampshire and Vermont also suggests the counseling didn’t discourage people from going to the hospital.

The Senate bill provision axed by Finance Committee chair Charles Grassley would have allowed coverage for conversations with physicians about things like hospice care, advance directives and treatment options.  But to opponents of reform, it was a handy attack mechanism. They enlisted a few standard bearers like former Alaska Gov. Sarah Palin and media darling Rush Limbaugh to twist the issue into menacing “death panels,” and in no time at all Sen. Grassley had his excuse to excise.

Losers in this are all of us. Eventually, 100% of us will die. Aggressive treatment and expensive, futile procedures are common today to that experience; compassion and peace are harder to come by.

In the new study, trained nurses did the counseling with patients and family caregivers using a model based on national guidelines. All the patients in the study had been diagnosed with terminal cancer. Half were assigned to receive usual care. The other half received usual care plus counseling about managing symptoms, communicating with health care providers and finding hospice care.

Patients who got the counseling scored higher on quality of life and mood measures than patients who did not.

Could someone please get this information to Sarah Palin?

Study: End-of-life advice aids terminally ill.

A Life-or-Death Decision in Australia

Australian Chief Justice Wayne Martin ruled Friday that quadriplegic Christian Rossiter has the right to end his life, if he chooses, by starving himself to death. Of all difficult medical-ethical issues, this has to be close to the top. I do not applaud the decision, do not support suicide (though I strongly support the right of a mentally competent, terminally ill adult to hasten his or her own dying) and hope Mr. Rossiter changes his mind. He may well do so now.

A series of injuries combined to make the 49-year-old a spastic quadriplegic last year. Mr Rossiter, once a keen rock climber and adventurer, told the Supreme Court his life was once exciting and enjoyable.

But the reality of his situation is far from that now.

Unable to move other than wiggle one finger or toe, unable to take nourishment except through a feeding tube, Mr. Rossiter asked his caretakers, Brightwater Care Group, dozens of times to remove that tube. They went to the court for an answer, and the answer has now come. But Mr. Rossiter is talking to his doctors and says he may change his mind. Should he stick with the decision to remove the feeding tube he will not, in truth, be “committing suicide;” he will be allowing natural death. (In the U.S. he would qualify for hospice care.) Either way, the choice should be his.

There are no winners or losers in this tragic tale. But there is something heroic in one man’s determination to keep control of his own destiny. I admire his gumption, and wish him well.

Quadriplegic Christian Rossiter now has control of destiny | PerthNow.

A Story of AIDS & Living Well

As he lay dying of AIDS, my friend Michael gazed over my head in the general direction of the bathroom, managed an almost-chuckle and said, “Nahh, not yet.” This was in 1995, on a foggy gray day in San Francisco, before the discovery of protease inhibitors that would alter the course of the disease. Michael and I had sat together at a dozen similar bedsides as members of the same AIDS support group, but he knew the scene far better than I.

Michael’s sister was due in from the east coast that day. In the bathroom medicine chest were the drugs he knew could end his life in hours rather than in the days or weeks he might have left. Michael’s body had grown frail, but his mind and spirit still soared.

AIDS is a terrible way to die. So are any number of other debilitating illnesses. But many of us believe that honest discussion of prognosis, possible treatments and options are not just empowering, but sane. There is a lot of insanity loose in the land.

A study to be published in the August 15 issue of the American Journal of Respiratory and Critical Care Medicine suggests that many surrogate decision-makers actually don’t want doctors to tell them about options and potential outcomes. I say, OK, fine; don’t ask.

But for someone critically ill who wants to know, why shouldn’t physicians be allowed to tell the truth? How likely am I to regain any quality of life? While my bad cells are being destroyed, what other destruction will happen? What if I choose no treatment at all?

Throughout decades of volunteer work with hospice, AIDS and most recently Compassion and Choices (counsel and support for terminally ill, mentally competent adults) 99% of the critically ill adults I have encountered have gained both power and peace from knowing their choices. They could tell you: it is not about death, it’s about living. Dying is going to happen. Living well takes effort.

In the 1990s almost everyone I knew who had AIDS also had a stash of drugs that could bring his life to a swift end. Very few of them used those drugs. Check the Oregon statistics: far more people request life-ending drugs than ever actually use them.

It’s about safety valves. It’s about  personal choice. It’s about control of one’s own life. It’s about living well.

For anyone to oppose the piece of our complicated health reform that provides coverage for critically ill (and other) individuals to gain understanding of their conditions is irrational and unreasonable. If those opponents choose to keep their heads in the sand that’s fine with me; but why deny the rest of us the right to reason?

Michael died that night, without opening the medicine chest. He could have told you he’d had enough. He would have told you that knowing the means to end his suffering was available had given him great strength and a degree of peace for over a year. He would have told you that straight talk from his physician (who also died of AIDS a few years later) empowered and emboldened him in a remarkable battle for life.

It was never about dying; it was about living well.

Sir Edward's Choice

It is ironic that while some of us were offering mostly light-hearted comments about how we might choose to die, news circulated  that  Great Britain’s reknowned conductor Sir Edward Downes and his wife had just made that very real decision for themselves.

Sir Edward and his wife Joan, a ballerina before she gave up her own career in support of his and of their family, flew to a Swiss clinic sponsored by the Dignitas organization with their two grown children to end their lives together. He was 85, almost blind and losing his hearing; she was in the final stages of terminal cancer.

I strongly support the right of terminally ill, mentally comptetent adults to hasten their own death. While there is a very distinct line between hastened dying for the terminally ill and “suicide,” it would seem almost cruel to criticize Sir Edward’s choice. And the key word is choice.

What most of us would choose is precisely what Sir Edward and his wife did indeed have: a swift, peaceful end with loved ones at the bedside. Few of us would choose what actually happens too often in the U.S.: prolonged pain and indignity, often a death that follows extended, expensive, frequently futile treatment, in circumstances we would never have chosen for ourselves.

Physician aid in dying, now legal in Oregon and Washington, is one good way to put rational choice back in the hands of mentally competent adults.  The Oregon law has been in effect for over a decade and has proven that such legislation works. It offers comfort and compassion and has not been abused. Efforts to extend this humane law into other states have been vigorously fought by religious groups, but end-of-life choice is just as much a right as is reproductive choice; like other individual rights, it will eventually come.

Given the enormous financial cost of the universal healthcare system most of us want, and the enormous human cost of futile end-of-life treatments and denial of physician aid to terminally ill adults, the time has come for serious dialogue about the right to die.

Sir Edward Downes left a remarkable legacy in his music. A very private man throughout his long life, he nonetheless left another admirable legacy in his poignant death. Maybe those of us over here in the colonies can learn something. Maybe we could at least honor him with a little civilized discourse.