By Lisa Nelson, Guest Contributor
Recently, a dear friend called me in a panic. Her partner had been struggling with what he thought was just a head cold. He had gone upstairs to rest and try to shake it off. A couple of hours later, she went upstairs to check on him. What she found was the unthinkable. He had passed away in his sleep - peacefully, but suddenly.
At first, you might think, “Well, if you have to go, that’s the way.” No long drawn-out illness. No painful goodbyes. Up until that day, he had been leading an active life and was full of plans. He was working at the volunteer fire station, dreaming up home projects, talking about next year’s vacations. And then suddenly, he was gone.
Death never comes at a good time, but at least there was no long suffering to precede it. But something about this made it clear to me that even the most peaceful death can be complicated if you’re not prepared.
The county coroner and EMTs arrived and started asking a lot of questions. My friend, understandably shaken, was left trying to explain a relationship that had no legal backing, because they weren’t married. He’d never officially divorced from a long-ago marriage to the mother of his only daughter. His wife now lived on a boat somewhere in the Caribbean. They just went their separate ways, and it didn’t seem necessary to formally divorce.
They asked if he had a DNR. My friend didn’t know. There was no healthcare power of attorney giving her the right to speak on his behalf for medical or legal considerations. No documents. No instructions. Thankfully, his condition was clear enough that resuscitation wasn’t attempted, but what if it hadn’t been? Who would have made that call?
Once his daughter arrived, the planning began. But there were so many decisions to be made. Burial or cremation? Where to place his remains? What kind of service would he have wanted? No one knew. They did their best and made these choices without knowing what he actually would have wanted. I could see how it weighed on my friend and his daughter, wondering if they were honoring his wishes or just guessing. Because they just didn’t know.
As I sat outside the funeral home waiting for them, I kept thinking: this didn’t have to be this hard. How could they not have known how easy it is for all this uncertainty to be avoided?
Planning for the end of life doesn’t take much time. A few clicks on a website. Choose someone to speak for you. Leave a few notes about what matters to you, your treatment healthcare preferences and treatment goals, write your thoughts about what you would like to have happen upon your death, and get the needed signatures. It’s an opportunity to communicate anything others should know about what you would like to have happen upon your death.
There’s not a lot we can control about death. If we’re lucky, the sting is gentle for our loved ones and lasts not long. The one thing we can control is the way in which we are prepared for this eventuality. If not for ourselves, for those we leave behind who become responsible in our absence.
Every year, April 16 is National Healthcare Decisions Day. It’s meant to prompt conversations like these. Not just about dying but about living well until the end. It’s a reminder that even if we can’t control when death comes, we can make it easier on the people we love.
I’ve always believed a good life includes a good death. Part of a good death is having the final chapter well-orchestrated so that all those around us – from care providers to relatives and friends – feel some comfort amidst the loss, knowing these final days went as we would have wanted them to go.
If you haven’t already, use this National Healthcare Decisions Day as your reason to start. Visit MyDirectives.com. Make a plan. Not because something might happen tomorrow – but because we love the people who will be left to pick up the pieces when it does.
Lisa Nelson is the Chief Technical Officer at DirectTrust and a creative innovator, experienced business manager, and medical informaticist with over 25 years' experience in the development and use of health information technology (HIT) standards. Committed to improving accessibility for patient’s health data, she also serves as a consultant to MyDirectives, where she supports MyDirectives' SMART on FHIR app technology integration with EHR solutions and other legacy platforms, and the company's standards development efforts. Before joining DirectTrust, Lisa was the Senior Vice President of Enterprise Integrations at MyDirectives, leading efforts to connect digital advance care planning with healthcare systems nationwide. Her work continues to bridge the gap between technology, policy, and person-centered care.