by Kim Keller
The decisions we made still haunt me. And I suppose they always will.
It’s not that I think we made the wrong choices. In fact, I’m certain we made the right ones. What I can’t shake is the belief that my father should have been leading the discussion about his own healthcare choices.
Instead, he wasn’t even a participant.
My dad had a living will. So my parents thought they were covered when it came to the recommendation, “Have a discussion with your family about end-of-life issues.”
But missing from that recommendation was the word “thorough” — as in, “have a thorough discussion about end-of-life issues.”
The living will only told us that Dad didn’t want to be kept alive by artificial means. What the document never anticipated were all of the other more likely scenarios that could develop. When some of those unforeseen events did ultimately play out, it was too late to secure his input and guidance.
Making these critical decisions for someone we loved so much, such as stopping aggressive medical treatments or starting hospice care, was a major impetus in the creation of In Care of Dad. My sister Karen and I wanted to spread the word: Have those end-of-life discussions before it’s too late, and make them meaningful!
Which often prompts people to ask us, “So how do I do that?”
Well, a great place to start is “Five Wishes,” a PDF of a living will, created by the national non-profit organization, Aging with Dignity. The founder, Jim Towey, worked for many years as a legal adviser to Mother Teresa, and spent one of those years living in a hospice she ran in Washington, DC. The experience motivated him to help families make the hard decisions that come toward the end we all eventually face.
“Five Wishes” is a simple step-by-step guide for making thoughtful end-of-life choices. If your loved one is, or becomes, incapable of making healthcare decisions for him or herself, then this document would clarify his/her wishes regarding:
- Who would make care decisions in his/her stead;
- The kind of medical treatment that is approved or rejected, such as surgery, hospice care, blood transfusions, dialysis, feeding tubes, as well as when life-support equipment should or shouldn’t be engaged.
- Comfort levels, such as pain relief or having one’s favorite music played when near death.
- Treatment requests, such as wanting bedside prayer or the wish to die at home.
- Specific communication directly to loved ones, from funeral arrangement wishes to asking all family members to respect one’s final choices, even if they don’t agree.
Finally, when the document is complete, you’ll need the signatures of two witnesses, and then the document will need to be notarized. Also outlined in “Five Wishes” are the steps to be taken after the document is finalized, addressing issues like where you should keep the original document, who gets a copy, etc. In addition, there’s a card one can keep in a wallet or purse that directs others, in cases of emergency, to locate your Health Care Agent and to follow these advanced directives.
Although these decisions are appropriately difficult to discuss and undertake, “Five Wishes” makes the rest of the process much simpler. The document is legally recognized in 42 states and the District of Columbia (the list of states is included). Even if your state is not listed, use the document for clarifying the questions that must be addressed.
This is perhaps the hardest discussion for most families to have. When you’re holding onto the last shreds of hope, and wishing for a miracle to save your loved one, it feels like a surrender to talk about death. And when everyone is healthy and happy, it might feel like a jinx. But it’s really neither. It’s just acknowledging an eventuality that everyone of us must face. Think of it only as protecting your loved one’s last wishes during that most human of moments, and making sure you handle things just as they wanted.
Kim Keller is the Co-Founder of In Care of Dad. She lives and works in New York City.
We are happy to re-post this blog from March of 2013.