Conferences & more in Chicago

Fresh off a fine, if exhausting, conference in Chicago, I found myself somewhere over Nebraska with 623 miles yet to go and – finally – time to write a blog. But way too much to blog about. This was a first-ever national event for Compassion & Choices, a nonprofit I’ve worked for and with over the past dozen or more years. Here’s three days in Chicago, in a nutshell:

Wise speakers – Betty Rollin, Ellen Buchman, David Muller, Charlie Sabatino, Dear Abby to name a few – had wise words on the movement to improve care and expand choice at the end of life. Material for a gazillion blogs, but we’re supposed to get busy working for the cause, not just blogging about it. One nice thing: I got to sign books simultaneously with Betty Rollin and we both sold out. She brought a lot more books than I did.

Before the event I snatched a few hours to zip downtown on the Blue Line for a visit to the Art Institute of Chicago, one of my favorite museums on the planet. Its new building is impressive and grand, the Lichtenstein show is a blockbuster, but I still vote for the Impressionists.

After the event I snatched a few steamy hours to zip downtown again and take an architectural riverboat tour. I love Manhattan, my heart belongs to San Francisco, but for urban architecture (especially architecture one can enjoy from a riverboat tour) Chicago just can’t be beat. Even when it’s 80-something degrees.

Here, though, is the best part of a three-day trip to Chicago: coming home.

More on mortality: living strong, dying well

It’s hard to think about the death of my sister Jane (below) without thinking of another death we faced together.

Our father, in his 90th year on the planet and his 20th year of widowhood, started putting the pressure on Jane and me to come to see him one Thanksgiving. As we were in different states and had families and other things needing attention, getting to Virginia required some doing. Our dad had two daughters in between Jane and me, but she was the executor of his estate and I was the one who brought comfort because I closely resemble my mother. We four daughters usually visited at different times in order to stretch out the audiences for his story-telling and generally keep an eye on him. This time he was adamant. He wanted the two of us there together.

In mid-January we got it worked out. Jane and I met in Atlanta, having to spend the night there because the Richmond airport was snowed in. We managed to get on the first plane to land in Richmond the next morning. After picking up a rental car for the drive to Dad’s home in Ashland we took him to lunch at the only place open in town. He was impatient to get back home. Once there he did his traditional monologue about his 12 flawless grandchildren, a reassurance, of sorts, of his posterity. Then he shuffled off to his room for a nap.

And that’s where we found him when he didn’t answer a call to dinner. Keeled over, on his knees at the head of his bed, where he had said his prayers for 90 years. Having  departed this realm in the midst of a conversation with God, all arrangements complete. He and God had long maintained a strong, conversational relationship.

Not all of us can engineer our departures so efficiently — you had to know my father. Or so gently as Jane’s closing days with her family around, singing hymns. But there are millions of such stories (some of which are in the book, Dying Unafraid, that was motivated by the first story above, if you’ll pardon a little blatant self-promotion here; it’s still in print.) The great majority of those stories happen not because the central character had an unshakable faith in some deity or other (although that does tend to help matters) or because he or she had mystical powers or superhuman strength and determination, but because the central character accepted his or her mortality. We’re born, we live, we die. The facing of, and preparation for, its eventual end often makes dying better and always makes life richer.

That’s the lesson of these two stories. Dying unafraid tends to happen to people who live unafraid. And who talk to their families and friends, and complete their advance directives, and make it clear what their choices are. This is equally true for the young and the old, the fit and the infirm.

What are you waiting for?

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.

Montana court affirms aid in dying

Montana has become the third U.S. state to give terminally ill adults the right to choose aid in dying. The decision, which came from the State Supreme Court on New Year’s Eve, 2009, was handed down by the highest body for state issues and thus cannot be appealed. The other two states honoring a patient’s wish to choose aid in dying are Oregon, which has successfully maintained its Death with Dignity legislation for more than a decade, and Washington, which passed a similar law last year.

The Montana ruling came too late for one plaintiff.

Roberta King, of Missoula, the daughter of plaintiff Bob Baxter, said, “My father died without the peace and dignity he so dearly wanted for himself and others. He feared when he filed this lawsuit that he would not live long enough to benefit from it. I’m sure he would be deeply gratified that other terminally ill Montanans will have the choice and comfort that aid in dying affords them.”

The Montana case was backed by Compassion and Choices, with C&C Legal Director Kathryn Tucker serving as co-counsel to the plaintiffs/respondents. (Full disclosure: I serve on the board of Compassion and Choices’ Northern California chapter.) The decision gave Tucker a major boost for her New Year’s celebrations. She was quoted on New Year’s Day as saying,

Montanans trapped in an unbearable dying process deserve, and will now have, this end-of-life choice. This is the first state high court to find protection of this choice, and makes clear that in Montana, patients are able to make this choice and physicians can provide this care without risking sanction.”

Others, including medical professionals and critically ill patients who invested long hours in seeking the new ruling, were equally gratified.

Dr. Stephen Speckart, a Missoula cancer specialist and a plaintiff in the lawsuit, said, “This decision affirms that a terminal patient’s fundamental right to self-determination will guide end-of-life health decisions. I regularly treat patients dying from cancer, and many of these deaths are slow and painful. Terminal patients will no longer be forced to choose between unrelenting pain and an alert mental state as they approach the end of their lives from terminal diseases. The comfort this brings to their last days can have an immeasurable benefit.”

Missoula attorney Mark Connell, who argued the case to the Supreme Court on behalf of the plaintiff physicians and patients, described the decision as “a victory for individual rights over government control.” Connell added: “The Montana Supreme Court has now recognized that, where intensely personal and private choices regarding end-of-life care are involved, Montana law entrusts those decisions to the individuals whose lives are at stake, not the government. I know Bob Baxter would be very pleased that the court has now reaffirmed that these choices should be left to the terminally ill people in our state.”

Steve Johnson, 71, of Helena, who is terminally ill with brain cancer, hailed the decision and asked the Montana medical profession to provide patients like himself with aid in dying. “I approach the end of my life with a clear mind, and I would like to work with my doctor to minimize the pain and maximize the peacefulness in my dying. I would like my physician to be able to respect and honor my choice to die with dignity. Adults like myself should have the option, if terminally ill, to request physician aid in dying. It’s only compassionate to minimize unnecessary suffering at the end of life, and to let me make the choice about how much suffering to endure, based on my own values and beliefs,” said Johnson.

The movement had widespread support across the state.

Montana State Sen. Christine Kaufmann, Rep. Dick Barrett and twenty-nine other state legislators; the American Medical Women’s Association, the American Medical Students Association, and a coalition of Montana clinicians; the American College of Legal Medicine; the American Civil Liberties Union of Montana; the Montana Human Rights Network; the Northwest Women’s Law Center; terminal patients’ surviving family members; Montana religious leaders; and Montana’s leading constitutional law experts had urged the Court to find in favor of the terminal patient’s right to receive aid in dying from their physicians.

According to Compassion and Choices president Barbara Coombs Lee, the battle for “the right to choose a humane and compassionate death will continue. (We) encourage terminally ill patients to call 800 247-7421 if they would like information about aid in dying, or suggestions on how to open a dialogue with their physician and loved ones.”

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.”

Boomers & the high cost of dying

As health reform slogs along, a few critical pieces are already gone for good — or for now, at least. One of the saddest is coverage for end-of-life conversations; one of the saddest elements of our culture in general and healthcare mish-mash in particular is the tendency to treat death as a curable disease. Timothy Egan, in a recent blog for the New York Times, makes an eloquent case for injecting a little reality into all this.

In the last days of her life, Annabel Kitzhaber had a decision to make: she could be the tissue-skinned woman in the hospital with the tubes and the needles, the meds and smells and the squawk of television. Or she could go home and finish the love story with the man she’d been married to for 65 years.

Her husband was a soldier who had fought through Europe with Patton’s army. And as he aged, his son would call him on D-Day and thank him – for saving the world from the Nazis, for bequeathing his generation with a relatively easy time.

That son, John Kitzhaber, knew exactly what his mother’s decision meant. He was not only a governor, a Democrat who served two terms in Oregon as it tried to show the world that a state could give health care to most of its citizens, but a doctor himself.

At age 88, with a weak heart, and tests that showed she most likely had cancer, Annabel chose to go home, walking away from the medical-industrial complex.

“The whole focus had been centered on her illness and her aging,” said Kitzhaber. “But both she and my father let go that part of their lives that they could not control and instead began to focus on what they could control: the joys and blessings of their marriage.”

She died at home, four months after the decision, surrounded by those she loved. Her husband died eight months later.

The story of Annabel and Albert Kitzhaber is no more remarkable than a grove of ancient maple trees blushing gold in the early autumn, a moment in a life cycle. But for reasons both cynical and clinical, the American political debate on health care treats end-of-life care like a contagion — an unspeakable one at that.

Kitzhaber, having seen the absurdities of the system — Medicare would pay hundreds of thousands for continuing treatments but not $18 an hour for an in-home caregiver to help her die as she chose — was among the thousands of us who were distressed to see the debate get sidetracked by misinformation and outright lies. He knows the truth: that changing the way we treat dying people is the only way real economies and compassionate reform will happen. He is not only a politician, currently running for a third term as governor of Oregon, the state that has shown us the way, but a physician. And he’s smack in the middle of the Baby Boomer generation. Egan cites the recent Newsweek cover article by Evan Thomas, “The Case for Killing Granny,” and its on-target line about this being the elephant in the room, “Everybody sees it, but nobody wants to talk about it.

John Kitzhaber, M.D., politician, and son who watched both parents die in a dignified way, cannot stop talking about it. His parents’ generation won the war, built the interstate highway system, cured polio, eradicated smallpox and created the two greatest social programs of the 20th century — Social Security and Medicare.

Now the baton has been passed to the Baby Boomers. But the hour is late, Kitzhaber says, with no answer to a pressing generational question: “What is our legacy?”

The Way We Die Now – Timothy Egan Blog – NYTimes.com.

What to do about Mom?

My friend Joan is distressed about her mother.   Joan – that’s an alias, we both value her privacy – lives quite near her parents, visits regularly, helps out with finances, health issues and everyday needs. They are in their late eighties. Other siblings live in other states. Until recently everything was fine; now the parents are in separate areas of their assisted living residence, Joan’s mother is in frequent despair and need. What’s a daughter to do?

This story is being repeated thousands of times every day across the country. Only this story has a peculiar twist: Joan’s parents did everything right. They lived frugally, planned ahead, raised their children to be successful and independent, moved early into a retirement community which offers care through illnesses minor and terminal. With Joan’s help they kept their affairs in order, including updated advance directives. (You don’t have your advance directives done? Horrors. Let me know and I will be at your door, cyberspacially speaking, to walk you through them immediately.) Joan’s parents were among early advocates for advance planning and end-of-life choice.

Joan comments: “Frankly, Mother is tired of being alive.  She’s not depressed, just ‘finished’, especially as she sees these slow declines in her quality of life as a steady and inevitable progression.  Her greatest desire would be to have a massive stroke and not survive.  But then her greatest nightmare would be to have a stroke and live . . . Even with the best advanced directives reflecting her choices, that’s a fine line to navigate.”

The moral of this story is that no amount of planning and preparation can guarantee the kinds of last months and years we might want. My own mother died peacefully at home, followed 20 years later by my father, same story. But that was in 1967 and 1987, in the small town of Ashland, Virginia where they had lived since 1939. The town looked after them; their out-of-state daughters merely visited and counted their blessings. Towns and neighborhoods like Ashland are in diminishing supply.

But all is not gloom and doom; this writer is constitutionally unable to write doom and gloom. Joan is at least clear about her parents’ wishes, and her parents have good care plus all allowable precautions: DNR orders, POLST forms, understandings with their medical professionals. Most of these are possible for today’s Boomers and their Beyonder parents; if you can’t find them I’ll happily tell you how. Joan’s parents are also in housing of their choice. And those choices are many: co-housing, retirement communities, assisted living facilities, many of them available to middle and low income Americans. Anyone over 50 who thinks he or she should postpone considering all of these issues, documents and choices until next year is delusional. Essays re housing choices have appeared in earlier Boomers and Beyond posts; others will follow. The secondary moral of this story is that without planning, late years can quickly turn into hell for elderly parents and adult children alike.

What we don’t have, of course, is health care such as Joan’s parents still enjoy for others who need it. The thing is, we can.