Saying Goodbye

In August 2010, The New Yorker published a remarkable piece by Atul Gawande called “Letting Go“. This piece had such a huge impact on me that I wrote an entire post the day after I read it to explain my love for it and for Gawande’s work in general.

Here is what I wrote then about “Letting Go”:

In “Letting Go”, Dr. Gawande describes the end of life and how the medical community should respond to it. As technology gets better and better, doctors are able to always offer something, some kind of treatment until the very final moments of life (it even makes it hard for them to definitively say that someone is dying even if they are terminal – read the article because it makes more sense there). But for terminal patients, ending your life in an ICU is often not the way that many of us imagine our final days.  And yet that is now where most people die. Not only is it sad and stressful for both the patient and those close to them, but it has led to extremely high costs. Here is what he writes:

If you were the one who had metastatic cancer—or, for that matter, a similarly advanced case of emphysema or congestive heart failure—what would you want your doctors to do?

The issue has become pressing, in recent years, for reasons of expense. The soaring cost of health care is the greatest threat to the country’s long-term solvency, and the terminally ill account for a lot of it. Twenty-five per cent of all Medicare spending is for the five per cent of patients who are in their final year of life, and most of that money goes for care in their last couple of months which is of little apparent benefit. […]

In 2008, the national Coping with Cancer project published a study showing that terminally ill cancer patients who were put on a mechanical ventilator, given electrical defibrillation or chest compressions, or admitted, near death, to intensive care had a substantially worse quality of life in their last week than those who received no such interventions. And, six months after their death, their caregivers were three times as likely to suffer major depression. Spending one’s final days in an I.C.U. because of terminal illness is for most people a kind of failure. You lie on a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place. The end comes with no chance for you to have said goodbye or “It’s O.K.” or “I’m sorry” or “I love you.”

I highly suggest you read the whole thing. It will really make you think about how your want your own final moments to pass if and when you have the ability to control them (to a degree – much more so than dying all of a sudden in a car accident or from a brain hemorrhage).

I cried multiple times while reading it, thinking about very close loved ones who chose to be at home and to die in hospice.  To have final words, final touches, and to be aware almost to the end.

This is fresh tonight because I happened to catch a segment of NBC’s Rock Center about Gundersen Lutheran Hospital in La Crosse, Wisconsin. According to the report, “96 percent of the people living in La Crosse have some type of written end of life care plan in their medical records.”

Rock Center showed two different families: a couple where the husband has inoperable lung cancer and who were in the middle of determining his advanced directive and, in much briefer coverage, a family that lost their wife and mother.

I cried through most of the reporting.

Death is so hard. Even as we can all logically say that we know we are going to die, to really own that truth about ourselves is terrifying. As morbid as this sounds, I often find it easier to imagine how I would want to spend the last days and hours with my partner if he were dying and I had to live on without him. If we could help it, I would want him at home, awake or aware as much as possible, and I would want to hold his hand as he died. If roles were reversed then, I would want him to be able to have those final moments with me. Even as imagining this makes me want to weep for the next five days straight, I can see how someone feels comfort in having an idea of how the end of their life or the life of their loved one will (most likely) play out.

I highly, highly, highly recommend the Gawande piece. The Rock Center story helps drive everything in that piece home.


3 thoughts on “Saying Goodbye

  1. I can’t even articulate all the feelings I have just reading your expression on the sentiment, but I very much agree. When the time comes, I would rather be in my own four walls, surrounded by those whom I love and who love me, with my faculties unhampered by heavy pain medications. This is how my mother went, as opposed to her father and her uncle, both of whom died in hospitals while hooked up to everything one can imagine, back in the 1980s.

  2. I consider myself so very lucky to have grown up in a family where I learned that family comes home to die. And that it was okay. Much like you describe having to watch your partner die, or yourself pass, I was holding my grandmother’s hand when she passed, and my cousin was lying next to his father as he passed.

    My mother is a doctor and I think one of the greatest gifts she offers to her patients is this discussion. She has encouraged and helped (not in a Kevorkian way) several of her patients to leave the hospital and move home for their final days. She often fights the families of her patients, because death is SO SO SCARY. And it is. It’s scary and sad and awful. But being in a hospital, in many cases, compounds that awful.

    Interesting that you post this today; about a week ago a very good friend of mine was diagnosed with metastatic adenocarcinoma. There’s a chance she’ll beat it, but there’s a greater chance she won’t. When, and if, it comes to that point, I hope, very much, that her family supports her decisions about how she wants to pass.

  3. My dad died in an ICU last summer, almost exactly how the doctor described it. This brilliant, kind, hilarious, loving man was in constant pain, on a ventilator, only intermittently lucid, and it was torture for him and his family.

    Yes, I got to tell him I loved him. I hope he understood it at the time. But I also remember weeping that he couldn’t go home to be surrounded my loving family to die peacefully. He deserved so much better.

    I’d write more but I’m already crying. Thank you for sharing this.

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