A.N.D. on TV
I was catching up on Grey’s Anatomy on hulu, and was so excited when the storyline included A.N.D., or “Allow Natural Death”. I want everyone to know this term, and even better if they learn about it in the comfort of their home, watching a hospital drama. The worst time to learn about it is when it relates to you or someone you know personally, and there’s an immediate need to decide. Like in the Grey’s Anatomy episode (Season 8, Episode 18), where the young mother has to decide which course of action to take for her son.
It’s all about options.
The more familiar we are with the territory, the better prepared we are if we ever end up there.
“Though lovers be lost love shall not.”
Dylan Thomas died of pneumonia in 1953. The pneumonia followed a series of health problems, including bronchitis, alcoholism, and too much morphine. He eventually slipped into a coma and died.
I have two of his poems to share here. Both passionate expressions of feelings and thoughts on death. Each with it’s own distinct flavor and pace.
It can be hard to think about dying. It’s certain to come, yet the timing and circumstances are unknown. The intellect doesn’t process it easily. It is hard to wonder how I will feel when I get to that place, and I don’t find it useful to wonder what it might be like if any long list of possible endings become true for me.
Fortunately, there are other ways to discover how I feel about life, and the dying part of living. For me it’s through the words of others: literature, poetry. Reading is like magic. It engages the mind as well as the heart — the thinking and feeling parts of me. It can transport me to another time and place, it can inspire feelings for people and self, it can illuminate what is meaningful to me. It can help me to meet and understand the complexities of this being human.
So, two poems from Dylan Thomas that speak to death in two different ways:
Do not go gentle into that good night,
Old age should burn and rage at close of day;
Rage, rage against the dying of the light.Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.And you, my father, there on the sad height,
Curse, bless me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.
I read it and breathe in a fierce desperation. A love and anguish and beauty. A storm and cry.
And then I turn and fall into this poem, and it is like relief and tears and sorrow, and sigh:
And death shall have no dominion.
Dead mean naked they shall be one
With the man in the wind and the west moon;
When their bones are picked clean and the clean bones gone,
They shall have stars at elbow and foot;
Though they go mad they shall be sane,
Though they sink through the sea they shall rise again;
Though lovers be lost love shall not;
And death shall have no dominion.And death shall have no dominion.
Under the windings of the sea
They lying long shall not die windily;
Twisting on racks when sinews give way,
Strapped to a wheel, yet they shall not break;
Faith in their hands shall snap in two,
And the unicorn evils run them through;
Split all ends up they shan’t crack;
And death shall have no dominion.And death shall have no dominion.
No more may gulls cry at their ears
Or waves break loud on the seashores;
Where blew a flower may a flower no more
Lift its head to the blows of the rain;
Though they be mad and dead as nails,
Heads of the characters hammer through daisies;
Break in the sun till the sun breaks down,
And death shall have no dominion.
I listen to what speaks to my heart, and to what kind of body reaction I experience. These are clues as to what to put into my advance directive. The better I know what I want, the better I can write it down and be sure of it. If my advance directive reflects my fundamental desires, then it will be useful no matter what situation arises.
TED talk: The Future of Dying
I stumbled on this TED talk. “She wanted to die with dignity.”
She was 10 years old.
What the samurai knows.
Human life is a truly short affair. It is better to live doing the things that you like. It is foolish to live within this dream of a world seeing unpleasantness and doing only things that you do not like. But it is important never to tell this to young people as it is something that would be harmful if incorrectly understood.
Hagakure, Yamamoto Tsunetomo, 18th-Century samurai.
What doctors know.
My friend Taylor posted a link to this article, “How Doctors Die”, on her facebook page. An MD wrote about what kind of health care doctors choose for themselves. Turns out, doctors tend to choose less treatment than most people.
This was an “Ah-ha!” moment for me. Because of course I want to know what kind of health care doctors choose (and why).
Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain, and dying alone. They’ve talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen—that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR (that’s what happens if CPR is done right).
That struck a chord with me. Doctors know more than the general population about what happens in hospitals, about what it means in real terms to “try everything.” And when doctors make choices about their own health care, they have all of their experience on which to base their decisions. And they talk about this with their families.
They know what happens because that’s their job. That’s one of the hardest parts about completing an Advance Directive. How do you know what you want? Unless you have some frame of reference, how can you possibly know?
It’s a great article. Read it. Soak it in. Share it with someone you care about, and ask them what they think.
Good Medicine.
An Advance Directive is a legal document, but it’s used in hospitals and medical settings. So it makes sense that doctors as well as lawyers care about helping people get them in place. Doctors want to know what kind of health care you want. They want to know if you’ve chosen someone to make health care decisions for you.
Last week I saw Dr. Jennifer Brokaw speak at an Alzheimer Care Giver’s Conference. I learned that she worked as an ER surgeon for 11 years and now runs Good Medicine, a consultancy that provides guidance for individuals with health care and medical questions.
I think it’s pretty cool.
One service they provide is helping people to create an Advance Care Plan. Advising people on advance directives is part of that, and because they are doctors and nurses, they can answer specific questions about medical care — which is wonderful for anyone feeling overwhelmed by that particular issue. Especially if you’ve been diagnosed with an illness, or have specific concerns about your health.
Advance Directives rock. And there are a lot of sources of support when you decide to make one.
Advance Directives and Alzheimer’s
Alzheimer’s is a scary illness because as it progresses we gradually lose our sense of self. Loved ones become strangers. The history and memory of our lives become lost to us.
I have a friend whose mother was diagnosed with early stage Alzheimer’s. My friend is a lawyer, and her parents asked for her help in creating an Advance Directive. It was hard, having to think of the future and what it would mean when the disease advanced. There were tears, and anger about what was to come. But they went through it because, as a family, they knew it was an important way of caring for mom. She could have a chance, now, to state her wishes for health care.
On November 12th I’ll be volunteering with the San Mateo Legal Aid Society, helping people make their Advance Health Care Directives.
We’ll have a table at the Alzheimer’s Association Circle of Care Conference in Foster City. Here’s a PDF of the brochure, with the schedule and details: 09-2011_CircleofCare_Brochure
We can’t control whether or not we get sick. But we do have a voice, and the chance to speak now about what we want for our future.
That’s why Advance Directives rock.
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Alzheimer’s Association Circle of Care
7th Annual Education Conference for Families
Saturday, November 12, 2011
Crowne Plaza Hotel
Foster City, CA
8am – 4pm
$45 in advance, $50 at the door
For more information, contact education@alznorcal.org or visit alz.org
Traveling.
I’m reading The Emperor of All Maladies: A Biography of Cancer. Palliative care and hospice are part of the story.
The movement to restore sanity and sanctity to the end-of-life care of cancer patients emerged, predictably, not from cure-obsessed America but from Europe.
The quest to defeat the disease narrowed doctors’ views. The care and comfort of the person was overlooked. And when increasingly aggressive treatments did nothing to cure illness there was no other strategy or plan for care.
And then, in 1967, an English physician named Cecily Saunders created a hospice in London.
[She named] it St. Christopher’s–not after the patron saint of death, but after the patron saint of travelers.
Naming things is important, and I felt a certain “right-ness” when I read this. I think of hospice kind of like a train station. Everyone is waiting for their own train, and no one is sure when it will come. It’s a transitional place. A waiting place. A living place, with it’s own momentum.
How to die peacefully, at home, surrounded by loved ones.
I was surprised by how stunned and sad I felt when I heard that Steve Jobs had died. I’ve never owned a Mac or iPhone. I love my little iPod shuffle, but I’ve never felt that attached or connected to Apple, or Mr. Jobs.
Still, I felt a profound pause, and a sorrow I didn’t expect. It reminded me that we never really know how we’ll react when someone passes away. Family, friend, celebrity, or personal hero.
The statement from his family said that he died peacefully at home, surrounded by his family. That made me happy. That’s what I want, if I get to choose. If I’m very sick, or if I’m 94 and frail and in decline, I don’t want to die in a hospital (the fluorescent lights, the gown, the antiseptic setting) with a needle in my vein and someone cracking my ribs trying to get my heart going. At some point my heart is supposed to stop. I want to be comfortable, in my own home, surrounded by love when the time comes.
So I’m a big fan of hospice. They’re the ones who make that kind of ending possible. Hospice provides care for terminally ill people — providing comfort, medical care, and support for a sick person and their family. Hospice can happen in a person’s home. Or it can be part of a hospital, or it can be a separate residential facility.
When my aunt decided she didn’t want anymore chemo, hospice helped set her up at home, where she wanted to live the rest of her life.
The hospice where I volunteer used to be a convent. It’s very charming. It doesn’t feel cold and sterile, like a hospital. There is a school nearby, and in the afternoons you can hear the sounds of children laughing and playing outside.
Hospice is awesome because it’s so hard when someone you love is sick, and dying. Kind of like how you can have a birth plan, and a doula or someone to help with pregnancy and the labor of giving birth. Death is a similar transition. It’s universal — we were all born, and we will all die — and it’s also personal, individual, and unknown territory.
If being at home is something you want, put it in your advance directive. Hospice can help with that. You can say that you want palliative care (more on that later) and hospice — you can even specify the conditions you’d want that care. Hospice helps you live the way you want to.
Give some thought to how you’d like to live your final days. Tell someone you love, and ask them what they think about for themselves. I bet Mr. Jobs did. It can make all the difference.
“It seems to me most strange.”
According to Shakespeare’s version of the Roman Emperor, here’s what Julius Caesar had to say about the end of life:
Cowards die many times before their deaths;
The valiant never taste of death but once.
Of all the wonders that I yet have heard.
It seems to me most strange that men should fear;
Seeing that death, a necessary end,
Will come when it will come.~ Act 2, scene 2.
The coincidence is that he is shortly thereafter murdered. And by his closest friend and advisors, no less.
Still, I admire the fact that he has given some thought to living and dying, and is mindful of how he feels about it.
There’s a lot of good literature and poetry (and movies) about dying. It’s wonderful for storytelling, and it also creates a safe space for considering our own mortality and preferences.
Thinking about dying is really thinking about living.
