father daughter end-of-life conversation

When my father was healthy, he used to jokingly say that he would throw himself off the Golden Gate Bridge when he got old and too sick to care for himself.  But, years later, when he was dying of metastatic melanoma, he didn’t talk about how or where he wanted to die with me or my brother. And, even though I was in Medical School at the time and should have known better, I didn’t bring it up either.

Luckily, his wife, my wonderful step-mother Toni, took charge.  With the help of one of her other step-daughters, a nurse, she provided my Dad with comfortable, round the clock care. He died at home surrounded by people he loved and who loved him. For my family, despite the ravages of an unforgiving illness, this was a “good death.”

We were lucky.  Although polls show that most people say want to die at home, however, most end up dying in hospitals, nursing homes, and other institutions. Of course, there are times when it is unavoidable.  But there are other times when it occurs because the wishes of the person dying were not known.

 

The Conversation Project

A new project, spearheaded by Ellen Goodman and colleagues in collaboration with the Institute for Healthcare Improvement (IHI) aims to change that.  Called The Conversation Project, its goal is “to make it easier to initiate conversations about dying, and to encourage people to talk now and as often as necessary so that their wishes are known when the time comes.”

The Project’s cornerstone is a website that offers visitors a Conversation Starter Kit and asks people to submit their personal stories to be shared at The Conversation Project and via You Tube, Twitter, and Facebook. The idea is to hear other people’s stories about the deaths of friends and relatives. And, to tell your own– hopefully normalizing the experience and making future conversations easier to have.

The Project does not judge what is a “Good Death” and what is a bad one.  And it does not advocate for any particular type of end-of-life approach. Rather it focuses on people telling their loved ones about their end of life preferences.

I had an opportunity to preview some of the stories that appear on the site that just went live today, August 13, 2012.  Each one is different. One tells the story of a detail-oriented dad writing to his daughter about all of his end-of-life issues, ranging from exactly what and where his assets were to which hymns he wanted to be sung at his memorial and exactly who was to give his eulogy.

Another is about an 86 year old mother of six who was lucky enough to spend 75 years with the man she loved. After he died at the age of 88, she decided she did not want to live any longer. She was 86 and living in a rehab facility. She asked her daughters to take her for a chocolate milkshake after his memorial. And then “she simply stopped eating and drinking.”

One person wrote about being willing to let her 80-year-old mom die without aggressive medical intervention she knew her mom did not want – because her mom had talked to her about her wishes. But her sister, who had not had the conversation about end of life wishes with said, “I am not ready.” The aggressive interventions were instituted and the mother survived the hospitalization and is now living, “her worst nightmare” of physical incapacity in a nursing home.

One man described visiting his dad who was dying from an inoperable brain tumor in his room in a nursing home.  Although often unresponsive, that morning, he woke up and motioned his son to come close, asking him if he was going to get better. The son told him he wasn’t. The dad then told him he did not want to continue in this way and asked his son to tell the doctors he had had enough. The son did as he was asked.

 

Have you had the Conversation yet?

After reading these stories, I realized that although my husband and I have had advance directives for years, we have not had “The Conversation.”  And, outside of joking remarks, like my Dad did with me, our grown-up kids don’t really know how we want our end-of-life experience to be.  We are all going to be together at Thanksgiving.  One of the things that is going to be on the menu of our favorite holiday this year will be a family discussion of our end-of-life preferences.

4 COMMENTS

  1. Pat —

    I agree that it is critically important to have these conversations. Another approach to broaching the topic and having the conversation is the Engage With Grace project, which includes the One Slide – five questions that may be used to start the conversation. There has been a “blog rally” before Thanksgiving (a natural time to have the conversation) each of the past several years. Here’s a link to my most recent post as part of the rally:

    Occupy With Grace (HealthBlawg) – http://vsb.li/pVDq2S

    Thanks for raising the issue.

    — David

  2. This is a stimulating first step, well-presented and with useful downloadable resource lists.

    Part of the conversation, but in a very different way and from a different perspective, is for all of us to gain a practical understanding of how our best-laid plans and wishes can go awry, and how quickly. Ironically, one factor regarding that quickness (that is, ending up on life support technology) is our lifelong use of, and benefit from, medical technology. The slippery slope is actually quite long and gradual when viewed from a lifelong perspective.

    Although these things are known to providers and understood by those who’ve had the misfortune of a loved ones’ death(s) becoming trainwrecks instead of peaceful, they are rarely articulated in a step-by-step, here’s what you need to do, manner. This remains a crucial missing piece in the overall conversation.

    Because I have not encountered or found others saying the things I say, I invite all to google me and visit my blog for a range of concrete considerations that will help all of us manifest the peaceful death that family conversations intend to result in.

  3. Pat,
    Dying a good death can be quite difficult for an older person. Most folks living in assisted living centers and retirement homes are taking so many medication they hardly know who they are or where they are. They are basically cash cows for Big Pharma. My mom died three years ago. When she lived at the assisted living center in Chico she was on 10 different medications costing $1500/month. The medications made her disoriented and depressed. Hardly a good way to die but great for Big Pharms’ profits. I moved my mom in with me the last six months of her life and took her off all the medications and cooked her up some cannabis brownies. In a couple of days she began to “waked up”. It was like a scene from the movie “Awakening”. Her smile and laugh returned and I spent the last six months of her life enjoying her company.
    For me dying the good death means being mindful of the passage I’m going through. Being numbed out by a bunch of pharmaceuticals is not my idea of a good death.
    Jim

LEAVE A REPLY

Please enter your comment!
Please enter your name here

This site uses Akismet to reduce spam. Learn how your comment data is processed.