Having the Talk: Planning for End of Life
The best time to talk is now
According to The Conversation Project, a public engagement initiative of the Institute for Healthcare Improvement (IHI), time is of the essence, “It’s time to share the way we want to live through the end of our lives. And it’s time to communicate about the kind of care we want and don’t want for ourselves. We believe that the place for this to begin is at the kitchen table—not in the intensive care unit—with the people who matter most to us, before it’s too late. Together we can make these difficult conversations easier. We can make sure that our own wishes, and those of the people who matter most to us (our loved ones, friends, chosen family), are both understood and respected.”
We plan for other life events, so view it through that lens
Most of us plan for big events in our lives, so, although difficult, of life should be no different. If you can view it through that lens it may help. Also remind yourself that it can help take the burden our friends, family and loved ones when a plan is in place so they can rest assured knowing that your wishes are being truly honored.
Some statistics support this from The Conversation Project National Survey in 2018:
92% of Americans say it’s important to discuss their wishes for end-of-life care but only 32% have had such a conversation.
95% of Americans say they would be willing to talk about their wishes and 53% even say they’d be relieved to discuss it.
The bottom line is many want to have this talk so plan to make it happen.
Hear from someone who’s been there
Matt Paradise from Massachusetts understands end-of-life conversations all too well. Matt was diagnosed with bile duct cancer and eventually needed a liver transplant. Only six months after Matt’s diagnosis, his father-in-law (who lives with Matt and his family), was diagnosed with lung cancer. Matt has the unique perspective of being in both seats, the person whose wishes are being discussed, and the person initiating the discussions with his father-in-law. He shares the following:
Be open and honest and don’t hide the truth: Matt shares, “Planning for the end of life is difficult but important. Everyone has their own limits about what they can handle. We found that openness and taking cues from loved ones was helpful. We have a young son and he asked difficult and emotional questions like, ‘will dad be alive to see me grow up?’ One challenge with cancer is that there are many unknowns, we worked hard to present the truth in ways he could understand. The reality of death is that it's inevitable, but it's also impossible to know when it will come. Kids are very perceptive and with advice, we chose not to sugarcoat or hide the truth.”
Create a will or trust: Matt shares, “My wife and I were fortunate to have the ability to hire a lawyer who is a friend to help us plan. We updated , , and worked to get a guardian in place. We wanted to make sure that if something happened to both of us, our son would be taken care of. We also to ensure that my in-laws were provided for as we're their caregivers.” Setting up an plan can cost money but it’s important to get sound advice so research options and talk to friends and family for referrals.
Create a concrete transition plan of responsibilities: This will look different for every family. Matt shares, “We continue to work with my mother-in-law to transition responsibility for paying bills and directing her own health care. Throughout their long lives, her husband paid bills and took care of all paperwork.” This may seem like a small but many families fall into set responsibilities of tasks so having the conversation and planning or learning how to conduct certain tasks helps make the transition easier when the inevitable happens to all of us. No one wants to wait for a loved one to pass and then learn how to balance a checkbook, pay bills, grocery shop…whatever it is that the other partner or loved one will take over.
Get your affairs in order but be easy on yourself and others: Matt shares, “Knowing the optimal ways to prepare paperwork and finances for end of life and understanding what might be best for others are often two different things. As a caregiver, I've come to realize that comfort, love, and dignity are far more important than optimizing for taxes or beneficiaries. At the same time, when I coded on the emergency room table two years ago, there was comfort in knowing that affairs were in order.”
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