Why I Still Don't Have a Living Will

Hi, friends! The other day we shared a video about living wills on our Instagram account, and the response was huge. Most of you said something like, “Yessss, it's right at the top of my to-do list, but I keep pushing it off.” Totally understandable. It's not an easy topic. You have to think hard about what you would and wouldn't want in a worst-case scenario.

Simone wrote to us too. She has had a lot of firsthand experience with living wills, and today she's getting it off her chest:

Why I Don't Have a Living Will

My name is Simone, and I want to tell you what I think about living wills, health care powers of attorney, and general powers of attorney, and about the consequences that come with them, which I've seen up close more than once. The first time was with my father-in-law at the time, who had a stroke completely out of the blue at just 60 years old. Right away the question came up: life support, yes or no?

In that situation I saw for the first time how casually many people say they don't want life-sustaining measures, that they don't want to be “hooked up to machines.” My father-in-law had always said exactly that, and he'd put it in writing, so the people around him knew what they were supposed to do in theory.

In practice, though, it all happened so suddenly that the family decided to allow life support for at least a few days. And to me, even many years later, that was the right decision. Why? Because it gave his relatives a chance to grasp what was happening. They could say goodbye, visit him one last time, and begin to come to terms with this blow. After three days, the life support was stopped.

The second time was with my own parents. They each wrote a living will and a health care power of attorney after my father was diagnosed with cancer. They both named me as the person who would have the final say. After eight years of ups and downs, my father ended up in the palliative care unit. My mother was an emotional wreck and could no longer bring herself to visit him.

At the time, my husband had just left me with a house, a loan, and two small children, and I was driving to the hospital every day between the office and preschool pickup. A few weeks later, on a Sunday afternoon, I had friends over and there were kids bouncing all over the place when my phone rang. “Hello, this is the university hospital, palliative care unit. We need you to make a decision now. Your mother doesn't feel able to.”

So that afternoon, in the middle of a houseful of other people's kids, I was supposed to decide right then whether my father would be allowed to begin the dying process, or whether he'd be given a medication that would make him responsive for about two more days. The doctor on the phone was very kind. He explained that the medication option is really only used when, say, a baby is about to be born in the next few hours or important documents need to be signed.

The decision to let him go was absolutely clear to me, and still it felt grotesque to be having that conversation in the laundry room next to the washing machine (the only quiet spot in the house with all those guests). In that moment, I felt completely alone with the decision…

And now I'm facing it a third time, with my grandparents. After my father died, they fell into a deep depression. We live very close to each other, and while their relationship with the rest of the family has always been difficult, the two of them and I are close. So they had a general power of attorney drawn up for me by a notary.

My grandmother has been slipping further into dementia for three years now, and my grandfather has had several episodes of sudden hearing loss from the strain and is now deaf. They're both at care level 2 under Germany's long-term care insurance system, but they want to stay at home as long as possible, and we want that for them too. Thanks to that power of attorney, on top of an already full life with three kids, a house, a yard, and a job, I've taken over my grandparents' entire lives. Health, money, household, emotional well-being: I have to decide, handle, and take care of all of it. It costs an enormous amount of time and energy. But the hardest part for me is knowing that I carry this responsibility alone.

My partner, with whom I also have a child, supports me where he can. He's a passionate athlete, and he plays sports where a fall can have serious consequences. Since we're not married, without a living will or health care power of attorney, his parents would have to make the decisions in a worst-case scenario, even though he has very little contact with them.

After a sports accident that ended up being, more or less, not so bad, he put a power of attorney in front of me, completely filled out, and asked me to sign. That made him the fifth person who simply assumed I would take on the responsibility, without talking through the details with me or putting his own wishes for such a situation into words. In the end I signed, partly to honor the trust he was placing in me. And of course I want a say in what happens to my partner medically. Still, being handed that much responsibility so casually feels like a few extra pounds on my shoulders. 

I don't have any of these documents myself. For years, I haven't been able to bring myself to put together such an emotionless piece of paper. Deep down, I know exactly that I do not want my mother making decisions for me (she would probably either be unable to or react without thinking it through). On the other hand, the moment a decision actually has to be made matters so much that, to me, you can hardly make the “right” decision ahead of time on a piece of paper. So I still haven't found an answer for how I want to arrange my future…