Monday, June 11, 2012

When the Dying Want to Die

I had dinner with a friend last night.  I'll call her Erin.  I met her nearly two years ago when I sat down at the bar of one of my favorite Red Hook eateries, desperate for food and drink, late in the evening, tired.  She was next to me and we struck up a conversation about her father's very recent death.  Erin had been one of his primary care givers and it had taken a toll on her.  Now two years later, she was two years into caring for her dying mother.  A one-two punch if the process of dying weren't so long, more like a great deflation.  Last night we both remarked on how slow death can be, how much it can take--from the dying, from the care-giving--on it's seemingly endless path to an end.  Gone are privacy, pride, simple abilities like reading, eating, sleeping, walking.  We think of deaths as a sudden trauma; it's more like a slow tapping of every resource necessary to keep a person going.  It's heartbreaking to watch; more so even to facilitate.  Erin feels like her own life is on hold while she feeds, bathes and supports her mother; I encouraged her to mentally integrate these months and years back into her life.  She may not be doing some of the things she wants to be doing, but this time counts as hers nonetheless.

We also talked about her mother's constant request to die.  Repeatedly she asks Erin to help her end her life.  I tell you this because Erin's so good about it.  She can joke with her mother, she can be witty, she can talk about death without the saccharine euphemisms that are typically used:  transitions, final wishes, quality of life, passing on.  Erin knows her mother is going to be dead.  And she knows that she can't even think about her mother's request, she'd go to jail.  Not that Erin would certainly be able to help her mother anyway.  Most of us don't know what we're capable of until we are in the moment of having to do it.  I also tell you about Erin because there's a reason it's called mercy killing, an unfortunate mash of words that minces nothing.  We're pretty good at walking by suffering every day.  In the city I am constantly faced with homelessness, desperation, addiction, hunger.  But when we see that pain on the face of someone we're close to, we feel helpless.  We begin to understand that morality and ethics are not absolute, as we're told they are.  We begin to see the ways in which law and justice are really one-size-fits-all guides in a world of exceptions and ridiculous horror.

I tell you about Erin because I see on her face every time we get together the insult of a long and ugly death.  The intolerable pain of watching pain work over someone we love without reservation.

Today this story came across my screen.  I'll post the whole thing because it is so sadly brief, so infuriatingly lacking of details:

A 65-year-old woman has pleaded not guilty to helping an elderly man kill himself by mixing a lethal dose of drugs in his yogurt.
Orange County prosecutors say Elizabeth Barrett entered the plea in Superior Court on Friday. She is due back in court on Aug. 10.
Barrett is charged with illegally assisting in the Sept. 30 suicide of Jack Koency, an 86-year-old World War II veteran who lived in a nearby retirement complex.
Orange County prosecutors say Elizabeth Barrett entered the plea in Superior Court on Friday. She is due back in court on Aug. 10.
Barrett is charged with illegally assisting in the Sept. 30 suicide of Jack Koency, an 86-year-old World War II veteran who lived in a nearby retirement complex.
Prosecutors say the Laguna Woods resident drove Koency to a cremation provider before heading back to his apartment, where she crushed a lethal amount of painkiller pills into yogurt that he ate. Authorities say Koency then went into his bedroom, laid down and died.
A message was left for Barrett’s attorney Daryl Anthony.

The picture of Elizabeth Barrett is cruel.  She looks exhausted, angry, sad, lost--all at once.  It's a face of grief.  We don't know anything about her relationship with Jack Koency, how long they'd known one another.  We don't know if Koency, like Erin's mother, asked to die.  Did he suggest the pills in the yogurt?  Did he write a letter?  Did he have family?  What were Koency's symptoms?  Was he sick?  Mentally sick?  In pain?  Actively dying?  And what's the definition of assisted suicide?  Suicide?  The word smacks of "do something to save him" and "crisis hotline" and "intervention" but do these reactions suit  Elizabeth Barrett and Jack Koency's situation?  We may never know.

What we do know is that dying is getting harder and harder to do.  Medicine has gotten very good at keeping people alive, but what we mean by alive has drastically changed.  So many of the simple illnesses that once took the dying off to their end are now easily addressed--the rampant infection, the pneumonia, the unsound heart, the swelling fluids of angina, stopping eating, stopping breathing--that a body can be kept in the sad, excruciating state of dying for years.

There are alternatives to a long and painful death.  Hospice, advanced directives, living wills.  All are now under attack from predominantly religious organizations that would have us think their objective is to protect the vulnerable.  And yet, sometimes the vulnerable don't want or need protection that smacks of paternalism, of self-pride, of righteousness.  Barbara Coombs Lee, president of Compassion & Choices, points us to a Georgia bill, HB 1114, that would further limit the efficacy of patients' stated requests for intervention (or removal thereof).

I wrote a year ago that, as with creeping restrictions on abortion, end of life rights--nationally accepted methods of preserving patients' choice of medical intervention and removal--would soon be in the sights of "prolife" groups floundering for ways to, if not stop the growing acceptance of aid in dying and its legalization, prevent access to it.  In such a zealous attempt to influence the morals of others, however sincere the desire is to protect patients in danger of abuse, the rights of so many are being wiped away.  How much pain can a person stand?  Who decides?  What does it mean to be alive?  How do we know what we want in the face of physical pain?  Emotional pain?  Can wishing to die be a wish that comes from a mentally sound person?  The human rights of the dying demand that we ask these questions, the very questions that Erin and her mother ask themselves and each other every day.

Very Quick Links

Joe Klein talking about his new cover story for Time Magazine, "How to Die."

Ladies' Home Journal's Diana K. Sugg does a great story on what it's like to be a hospice nurse.  Of course it's got the LHJ style (you know it, saccharine nice--"gentle grounded spirit"?!--perfect for a story like this), but it also commendably picks up and debunks some long-standing misconceptions about hospice:

Others, unnecessarily worried about drug addiction, won't give their sick relative pain medicine when it's needed. And some patients are afraid of taking morphine, thinking it will stop their breathing or make them feel out of it. "Did you take the medicine?" Campbell asks a cancer patient, who is holding her rib cage in agony. Campbell squats beside the hesitant woman and assures her she'll stay with her while she takes it, to make sure she's okay. The patient is worried she'll just sleep away the time she has left, but pain medicine often allows a person to feel better and actually do more.

Don't miss the accompanying photo essay by Monica Lopossay.

It looks like those who support aid in dying/euthanasia in Russia come from the same demographic as supporters in the U.S.

GeriPal points us to a post by Paula Span at the NY Times New Old Age blog that highlights a new study done in party by two GeriPal writers for Health Affairs, "Half of Older Americans Seen In Emergency Department In Last Month of Life; Most Admitted to Hospital, And Many Die There."  I don't think these findings surprise anyone watching EOL and hospice issues.  But it does confirm what we've all been wringing our hands about:  hospitals are dangerous, particularly for elders; there has to be a better way to meet the health care needs of the dying; that is cheaper, more friendly and more comfortable.

“It’s really traumatic to watch anybody die. I’ve been with my parents and grandparents, but this is different. This is healthy people,” Pickett said. “It’s legalized murder.” From Obit's recent article by Natalie Pompilio on Rev. Carroll "Bud" Pickett, a former death row chaplain.

The July issue of The Journal of Hospice and Palliative Care Nursing is out.  I'm looking forward to reading a piece on depression in patients with terminal illnesses, "As if the Cancer Wasn't Enough."

Barbara Combs Lee writes about how the Catholic Church and Right to Life organizations in Georgia endangered patient autonomy and choice there with a new bill HB 1114:

The bulk of the bill — 37 lines — frets over patient decision-making and medical treatment in minute detail. It focuses on doctors more than the voyeurs and predators that endanger society. The new law repeatedly specifies that any withholding, withdrawing, prescribing, administering or dispensing must be solely intended and calculated to relieve symptoms and never to cause death. Some tried to allow treatment that “eases the dying process,” but the lawmakers deemed that language too permissive and generous.

Solitary Watch points us to a new series on prison deaths in Arizona, by Bob Ortega of the Arizona Republic.  You can read the first one here, on the "second death row," solitary confinement, where 37 inmates have committed suicide over the past two years.