The latest from Compassion & Choices

Five Questions for Katy Butler

1) You make a great analogy in Knocking on Heaven’s Door: “The default pathway to a disempowered death is a wide freeway with smooth, well-lit on-ramps and misleading signage about the final destination,” while the path to a natural death is overgrown and difficult to find. What is your recommendation for changing that?

On a national level, triple spending on palliative care and hospice so that everyone can get help with medical decision-making early on. Ask your Congresspeople to support the “Better Care, Lower Cost Act” sponsored by Senator Ron Wyden, to improve appropriate medical support for people with chronic illness. Support Congressman Ralph Blumenauer’s effort to pay doctors better for holding honest, time-consuming, difficult conversations (the so-called “Death Panel” benefit). And advocate to reduce payments to doctors who perform futile “Hail Mary” surgeries, tests and treatments near the end of life. We have an epidemic of unneccessary suffering at the end of life, and what’s more, it’s expensive! A tenth of Medicare patients get surgery within the last month of life. A fifth die in intensive care and 30% cycle through the ICU in the last month. A quarter of all Medicare dollars go to the 5% of patients who are in their last year of life.

On the personal level, start talking more honestly and realistically about the limits of medicine — in your families, and with your doctors —years before the final crisis.  Old people are like Humpty Dumpty and one ill-considered surgery can push them into dementia or send them into a downward spiral. Less can be more. If you don’t practice honesty early, you may find yourself bewildered at the door of the Intensive Care Unit, unaware that death is on its way, and fighting with your siblings about what’s best for a failing mother or father. Friends of mine have found themselves utterly unprepared for an obviously oncoming death – even, say, an elderly father of 88, suffering from dementia and in assisted living. Even though he had a Do Not Resuscitate order, no doctor had made his daughter aware that his next illness might be his last. He developed an infection, was taking to the emergency room, and died unconscious after ten painful days in intensive care that cost the system $323,000. His daughter never got to say goodbye.

Doctors need to develop the moral courage to say, early on, “You are approaching the end of your life.” When we are given that tough gift, our goals and expectations of medical treatment often change.  When you’re young and healthy, you think you just need a Plan A: Fix me, heal me, cure me, maximize my longevity. But as you age, or grow sicker, Plan A is no longer realistic, and you need to formulate your own Plan B, based on your own values. Plan B includes four factors we summarize as quality of life: a) keep me as independent as possible; b) keep me free of suffering, emotional and physical c) support my family and d) put me on the pathway to a Good Death. If you don’t ask your doctor to be frank, you may never learn when it’s time to think hard about your Plan B – and get everyone in your family on the same page. Because an estranged family member who flies in at the last minute can upset the whole apple cart by insisting “everything be done” even if it goes against your Living Will and your expressed wishes. They even have a name for it in hospitals – the Nephew from Peoria.

2) Had you given much thought to end-of-life issues before your parents began having health problems? And how did you end up connecting with Compassion & Choices during your father’s illness?

As a reporter at the San Francisco Chronicle in the 1980s, I spent nearly six weeks watching decision-making in an intensive care unit. I will never forget a retired longshoreman with incurable emphysema who had a vision one night that his dead wife and many dead friends had visited him. He was ready to die. He had trouble breathing the next day, and unfortunately his niece called 911 and he ended up in the ICU on a respirator. His death became a prolonged torture for everyone involved – his relatives and medical residents alike. So I was aware we had a problem – of denial and overreliance on technology — as a society.

But before my father got sick, I hadn’t thought things through. I thought there was “living” and “dying” and not much space in between. They were very healthy until their late 70s, and I figured that their deaths, when they came, would be relatively swift and merciful, much as my grandparents’ were.  I didn’t realize that thanks to the 911 system and a panoply of technological advances such as dialysis and defibrillators, it’s very hard to die a natural death now. Nor did I realize that people can spend years in what I call “The Gray Zone” between life and death. That’s what happened to my poor father.

A year after his stroke – right around the time he was saying, “I’m living too long” – he was given a pacemaker with very little forethought or discussion. Fast forward five years. He’s descended into dementia, can’t even walk along to the neighborhood pool to do exercises, is deaf, and too blind to read the New York Times – his last remaining pleasure. My mother’s exhausted from nonstop caregiving, but refuses to put him in a nursing home. Finally she asks me to help her get the pacemaker turned off – and the cardiologist not only refuses, he makes it clear that he thinks we’re moral monsters and later tells me it would be like “putting a pillow over your father’s head.”  Now he was wrong about that – I learned from Judith Schwartz at Compassion and Choices that we each have a constitutional right to refuse any medical treatment, or ask for its withdrawal.  But having a legal right and the practical power are not the same thing. We have a lot of work to do in this country before all doctors realize that our right to medical autonomy trumps the Hippocratic conception of “beneficence” – doing no harm. I believe it can be “harm” to keep people alive too long without being frank with them about the benefits and burdens of treatment. Paying too much attention to Plan A (maximizing longevity) and not enough to Plan B (relieving suffering) can be doing harm.

I found C&C by googling around on the internet and called the hotline. Judith Schwartz gave us a plan to follow. She recommended we do what the cardiologist had asked, and first get a geriatric psychiatrist to declare my father incapable of making his own decisions. (My father had signed Durable Powers of Attorney for healthcare naming me and my mother as his decision-makers.) We started the process, but before it was complete, we got my father into a palliative care program, which smoothed the way to hospice. We were never able to get the pacemaker turned off, but when my father developed pneumonia – once called the “old man’s friend” – and we quite consciously chose not to give him antibiotics. He died on a hospice unit – and even there we were unable to get the pacemaker turned off! We just wanted to remove all barriers to a natural death.

 3) From across the country you helped your mother care for your father, becoming part of what you cleverly termed the “roll-aboard generation, the legions of long-distance daughters and the smaller contingent of sons who hoard their frequent-flier miles and often, but never often enough, roll their suitcases on and off planes.” Do you have any advice for the growing number of adult caregivers in America?

Yes! First, be forgiving of yourself. You are not going to do this perfectly – far from it. It’s a spiritual ordeal and an impossible job. Second, think in terms of two-way compassion: for your ailing relative, and for yourself.  There were times when I said no to my parents, even though they were in dire straits, because I was exhausted and had other financial and personal responsibilities.  Third, get help! I wish I’d pressured my brothers to do more, and delegated other responsibilities – such as managing their investments – to professionals who were more qualified than I.  The last two chapters of my book contain detailed suggestions and resources. Many of them are also listed on the open Facebook group, “Slow Medicine.” And finally, help create a grassroots movement for better government support for caregivers. The Family Caregivers Alliance is a wonderful resource.

4) In that roll-aboard role, you also dealt closely with doctors and other medical professionals. Might you also have suggestions for them?

Well, they’re in a terrible bind. Most have no training in holding “the end is near” conversations or even differentiating a patient’s “Plan A” from their “Plan B” goals for medical treatment when trying to extend causes more harm than good. Second, they’re not paid enough talk to us and be with us rather than do things to us.  But given those constraints, I invite them to have the moral courage to blunder ahead anyway and hold that conversation, even if they do a less than perfect job, even if it doesn’t pay. It’s better than kicking the can down the road to the poor Intensive Care Unit doctor facing a bewildered and unprepared family. If you really can’t bear to be honest, refer the patient to a good family medicine doctor, social worker, chaplain or palliative care program – they know how to do this.

5) Certainly your experiences affected your views on the dying process, but what about death itself?

Wow. What about death itself?

In the Middle Ages, the best selling book among Catholics and later Protestants was called Ars Moriendi, or the Art of Dying. They were like scripts for the deathbed. Families and friends would gather around to help, and the state of mind of the dying person at the moment of death was considered crucial, because it would determine whether he or she  went to heaven or hell.

So people faced fear, anger, remorse, not wanting to say goodbye — all the usual emotions – and were reassured by their friends of God’s mercy. Tibetan Buddhists have a very different cosmology but a similar idea – that the state of mind at the moment of death can help produce a beneficial rebirth.  Before modern medicine offered us so many miraculous cures and unrealistic hopes, contemplating death ahead of time was considered one of the spiritual responsibilities of a grown up. Even today during the High Holy Days services, Jewish people remind themselves that human life is like “the grass that withers, the flower that fades, even as a dream that disappears.”

Many of us don’t believe in heaven or hell any more, but we do live on in the memories of those we leave behind. I cannot think of a better legacy tthan having thought out a plan for a Good Death that doesn’t leave our survivors traumatized. As my friend Judy Johnston said in her TED talk, “Take me out and shoot me is not an end of life plan.” And if you don’t have an end of life plan, someone may have one for you — one that you don’t like.

Personally, I’m a Buddhist but I’m also a modern American. I love my life and I don’t  want to die yet. I hope I’ve got some more good years, and like most of us I hope an exception will be made in my case! I don’t believe that my human personality or my memories or ego will survive in any form after my body dies and my brain cells blink off. There’s a reason we say to each other, “I’m sorry for your loss.” I do, however, believe that I will melt into the great unknowable beyond from whence I came, and that once I let go into that experience, I will not suffer and I may even experience a momentary freedom from all fear, a moment of bliss.

That’s my hope at least. I hope I’ll be ready. I’m mindful of the phrases beloved by the hospice movement and I hope I’m ready: Thank you, I love you, please forgive me, I forgive you, and goodbye.

I’ve signed my living will and picked my medical proxy. But mostly I just have my head in the sand, hoping I’ll live forever.

Knocking on Heaven’s Door can be purchased here — and Kindle downloads are only $2.99 through May 31!