Needless pain, senseless dying

His wife is dying. If she’s lucky, she will be dead before you read this. If he has his way, she will hang on — for what purpose I am not sure, since she is now barely conscious and in terrible pain — but, in his words, she is “not ready to close the curtain.” He cannot bring himself to say the D-word out loud.

Joe — not his real name — called me last night. I am not sure for what purpose the call was either, except he’s quite understandably angry and I was a handy person to be angry with for a while. His wife was a supporter of an organization I serve, as a board member and a one-on-one client volunteer. Compassion and Choices N.CA is a chapter of the national Compassion and Choices nonprofit organization. We advocate for everyone’s right to a humane and compassionate death, which Cathy — not her real name — is not having. We also advocate for changing the laws that ban physician aid in dying, and the right of a terminally ill, mentally competent adult to hasten his or her own dying if living a few more days or weeks becomes unbearable. Cathy’s life is past unbearable by now.

After suffering for several months with back pain, trying chiropractic sessions and over-the-counter medications, Cathy wound up in an emergency room in mid-November, almost accidentally having an MRI that showed the tumors throughout her body. Lung cancer had metastasized to her brain, spine and almost everywhere else. THIS IS A GOOD TIME TO CALL HOSPICE. Joe encouraged Cathy to fight on. She is in terrible pain, and worse than the pain, Joe says, is the difficulty she has breathing, which keeps her from sleeping because she feels like she’s drowning — “but she doesn’t scream out, exactly…” he said. I wonder how heroic she must need to be for him. She is down to 89 pounds.

As gently as possible, I suggested he call one of several excellent local hospice organizations which I’d earlier mentioned to Cathy’s friend who connected us. As a matter of fact, Joe said, he had already called one of them, they’d been over, he was impressed with them. I was almost beginning to breathe myself when he added that he still wanted to talk with the other I had mentioned (Big mistake. Why did I do that?) and had made an appointment with them to come after the weekend. I suggested they would not mind coming on a weekend.

Denial is a perfectly legal way to deal with things, but it should have its limits. If your spouse, partner, child, friend or parent is terminally ill and in unremitting pain, hospice can be the kindest word you have ever spoken. Hospice care IS NOT about “giving up,” or about dying. It is about comfort, pain management, living, peace. It is entirely possible to sign up for hospice care, change your mind and start some newly-discovered intervention later if one should be found. Probably at some point, you will say the D-word out loud. It won’t kill you.

Joe and Cathy are highly educated, financially well off, widely known and admired. He spoke of moving her to their second home nearby where she could enjoy the ocean, and perhaps take time “to say goodbye to her friends when she feels a little better.”

Modeling how to die

My remarkable friend Mary died yesterday, after showing us how to do it. Not when, mind you, because she was far too young and energetic — just how. How to question and oppose, to look at options, and eventually to accept the fact that life is fine and finite and go with grace into whatever lies ahead.

Diagnosed with pancreatic cancer barely a year ago, Mary began what would be a studied exploration of traditional and experimental interventions to see if she might wrangle some extra quality time on the planet that she had carefully nurtured throughout her life. Almost as importantly – most importantly to her host of concerned friends – she and her husband Tom signed up on CaringBridge. Immediately, her host of friends also signed on, forming a sort of cybercircle around the family.

As the journey progressed, they would post pictures and notes about their travels and travails, filled with exuberant photos, irrepressible humor and a clear-eyed view of our shared mortality. Friends and relations would sign in with their own comments. Sometimes the latter would include off-beat ideas for something else to fling in the face of the disease; more often they would be notes about how Mary and Tom were brought spiritually into other circles when they couldn’t be physically present. Sometimes they would be long and rambling; more often they would be simple affirmations of how the couple and their family were being held close in so many hearts.

It was an extraordinary gathering. With their three grown children and a few others on site, there was relatively little taking-of-casseroles over these months, though Mary was always the first to show up with a giant jug of homemade chicken soup whenever some affliction struck at my house (and many others.) The cybercircle kept us regularly informed, assured us that we were part of the journey, and served, I believe, as a constant reminder to Mary and Tom that dozens and dozens of their friends were at their virtual side along the way. It helped that both of the central characters – and they were central characters in all the best senses – were thoughtful and eloquent writers.

While preparing for a new round of treatment not long ago, Mary and Tom learned that her tumors had returned with a vengeance. So instead of setting out for one adventure they settled in for another. Hospice was called in, their children gathered even closer. Postings in cyberspace documented the passage of those days, from occasional sunset walks into the nearby hills to readings of comments from friends, as Mary grew weaker, that might win what Tom described as the ultimate honor, “the coveted arched eyebrow.”

As she died, Mary’s family fluffed the pillows and administered “magic drops and potions, all of which helped only sort of.” Afterward, Tom opened the window as a friend had prompted, ” to free her spirit, not that she needed any help from me” and hung their Revolutionary War era ‘Liberty’ flag out front.  And sent a final note into cyberspace for the ever-expanding circle of friends: “All hail, Mary, so very, very full of grace.”

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.

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.

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.

A Novel Idea for Healthcare Reform

Not long ago I attended an event at San Francisco’s Commonwealth Club, featuring a speech by the President’s Council of Economic Advisors Chair Christina Romer. Dr. Romer’s talk, “The Great Credit Freeze and the U.S. Economy,” was all about improving healthcare while slowing down the growth of its cost. We know we can’t reduce costs, she said; what we hope to do is reduce the rate of increase. And one way to contain healthcare costs might be to find out what the patient wants. Imagine.

This observation was not in direct response to a question, but could well have been. Dr. Romer was asked, by more than one audience member, about how to address excessive expenditures at the beginning and end of life. A grossly disproportionate share of costs, she conceded, “are spent on the last six months of life. And one thing we’re not doing enough of is letting patients express what they want.”

If the issue were not so grim and sorrowful it would call for a “Well, duh.”

It would be hard to find many people saying they’d like their last few days on this planet to be spent semi-conscious or in pain and distress, hooked up to a tangle of wires and tubes in a blue-lit hospital room (see Scott Bowen’s post 7/14.) But this is in fact the system we have created: we focus on prolongation of life without regard to quality, we aid and abet doctors who equate death with failure, we never talk about our own mortality as if in silence we can become immortal. Most of us would choose to die at home, properly medicated for pain and surrounded by our loved ones; most of us will die in an institution

Audience members had a wide assortment of questions, and Dr. Romer had plenty more to say. But finding out what the patient wants, and acting accordingly, is surely one excellent path towards better care – and even contained cost growth — and everyone in America could begin that process today.

It is an easy solution, even if only a small, partial solution, to this piece of the muddled medi-puzzle of our healthcare system: talk. Tell your doctors, caregivers, loved ones what you do or don’t want. Write it down. Use the forms universally available (Advance Directives, POLST, others.) You might even wind up with what you actually want in your final days. Christina Romer is on your side.