Let's talk about dying
“Have you thought about your wishes for end-of-life care?”
I don’t recommend this opener for a networking event, although it’s a good line to use if you want to be left alone at a party.
As we head into the holiday season, why am I talking about death? Surprisingly, the holidays are actually a good time to talk to our families about Advanced Care Planning (ACP). ACP lets you decide ahead of time what kind of care you would want if you were dying. ACP is not a conversation about death, it is conversation about how we want to live. I did this recently and, I promise, it was neither morbid nor depressing.
Imagine three scenarios:
1. During a happy time with your family, you initiate a thoughtful conversation about your wishes for some future day when you need end-of-life care. You have an open, honest dialogue that isn’t laden with urgency or the burden of anticipatory grief.
2. You wait until you are near your final moments – perhaps unable to communicate – and during an emotional, difficult time try to determine and articulate your wishes.
3. (I really hope this isn’t true) You have never thought about or shared your end-of-life wishes and, when you are unable to communicate, strangers (medical and/or insurance professionals) make decisions for you.
Wouldn’t we all want scenario #1?
Ideally, important conversations about ACP happen when you are still healthy. If your time was short, what would be most important to you? Would you want to be treated, and possibly die, in a hospital or at home? If the only way to keep you alive was with a feeding tube or a respirator, would you want that? Would you choose surgery if it could prolong your life but render you paralyzed? Would you choose one more round of chemo that would make you violently ill if it extended your life by only one month?
Research tells us that ACP benefits both patients and their families. For patients, ACP means that they reclaim some control over their final days. Their families find comfort knowing that they did the right thing for their loved one at the end.
While ACP has enormous benefits, most of us haven’t had the conversation yet. Although 92% of people say that talking to their loved ones about end-of-life care is important, fewer than one third have done so. And while 97% of people say that it is important to put their wishes in writing (for example, a living will or an advanced care directive), only 37% have done so.
Fortunately, there is an international movement encouraging doctors and patients to think differently about how we approach end-of-life. Atul Gawande’s 2014 bestseller “Being Mortal” is a thoughtful exploration of aging and death. In beautifully written human stories, Dr. Gawande shows how modern medicine can sometimes extend life through extraordinary means only to prolong suffering. Families and terminally ill patients often pursue every last treatment option, even when treatment is not likely to provide a cure and will most certainly bring added pain. Dr. Gawande writes: “People die only once. They have no experience to draw on. They need doctors and nurses who are willing to have the hard discussions…” This is not solely the responsibility of the medical community. All of us need to take responsibility for having these hard discussions.
If I’ve opened your mind to having the conversation with your family sooner rather than later, here’s how to start:
The Conversation Project https://theconversationproject.org/ is an extraordinary resource. Started in 2010, it is an initiative of the Institute for Healthcare Improvement and the brainchild of Pulitzer Prize-winning writer Ellen Goodman. The Conversation Project offers easy-to-use, step-by-step instructions (in 13 languages) that will guide you through how to have a conversation about your wishes for your end-of-life care.
Hospitals and other healthcare providers are working to bring transformative change to the way we handle end-of-life issues. For example, The Massachusetts Coalition for Serious Illness Care http://maseriouscare.org/ was organized by Blue Cross Blue Shield of Massachusetts and brings together over 100 Massachusetts-based organizations “to ensure that health care for everyone in Massachusetts is in accordance with their goals, values and preferences at all stages of life and in all steps of their care.”
Working with Zamawa Arenas, founder and CEO of Flowetik, a marketing agency, the Coalition conducted groundbreaking national research to determine how best to communicate with people about ACP. Using that research, Arenas tested a variety of marketing messages to see what was most effective. The research showed that the most effective messages used a theme of “Good Talk.” Coalition members are now using the “Good Talk Toolkit” to educate their patients about the importance of ACP. http://maseriouscare.org/toolkit
Our aversion to talking about end-of-life has negative consequences. Not just for us, but for our family members, who will bear the emotional and financial costs of our poor planning. By taking the lead and initiating this conversation about your wishes, you’re also making it possible for others to share their thoughts and wishes for their lives, too.
The Centers for Disease Control now recognizes planning for end-of-life as a public health issue, given its potential to prevent unnecessary suffering. While wider social change does require radical efforts by both providers and their patients, it starts with you, and is as simple as having a good talk.