Talking Openly About End-of-Life Care

By Debbie Reslock | Oct 8th, 2018

Every time I think about living wills or healthcare directives, I think of my mother. She was only in her 50s when diagnosed with cancer, during a time when conversations on hospice or last wishes were only beginning. My dad had died unexpectedly a few years earlier and being the only daughter, I was totally unprepared to help her face this. But what also stunned me was that the medical profession seemed to be ill-equipped as well.

Even with chemotherapy and experimental treatments, this aggressive and unforgiving illness took my mother’s life six months later. There was never a doctor’s appointment when we received good news. Instead, we all watched as a vibrant woman was reduced to a mere shadow of herself. Yet no one, including my mom, myself, my family or her doctors ever talked about what was happening and where we were headed.

Only as we approached the last few days of her life, and any talk of hope was silenced, did the doctor tell me, not her, that we were coming to the inevitable end. He asked if I thought she would be more comfortable at home or in the hospital and whether she would want life support, which for a dying cancer patient only resuscitates the suffering.

I couldn’t avoid questioning myself and my family: Why hadn’t any of us asked her?

I was heartbroken. But I was also angry. I wasn’t ready to make these decisions for her or anyone else. I was only 25. I wanted to ask him why he was asking me. But even though I found a moment’s comfort in directing my anger toward him, I couldn’t avoid questioning myself and my family. Why hadn’t any of us asked her?

How could we talk to her about this now when no one had acknowledged that she was indeed dying? I think she wanted to protect her kids from what she really couldn’t. And we were afraid that maybe she didn’t know how sick she was. But of course she did. In our botched handling of the situation, she didn’t get the chance to tell us what she wanted. And we missed the opportunity to tell her what a great mom she had been.

We still aren’t having the conversations

Today, you might think communicating between families and their doctors commonly happens. But you’d most likely be wrong. Because it turns out that we still don’t want to talk about it. Even with the knowledge we now have, we may say it’s something we value, but our actions don’t back us up. According to The Conversation Project, an organization that helps people express their end-of-life intentions:

82 percent say it’s important to put their wishes in writing but only 23 percent have done so.
90 percent say talking with their loved ones about end-of-life care is important but only 27 percent have had those conversations.
60 percent say not burdening their family with tough end-of-life decisions is extremely important but 56 percent have not communicated their wishes.

Why do we ignore the one thing in life guaranteed to come to all of us? Some say they’re afraid they’ll jinx their luck. Others claim that they’re fine with whatever the family wants. But intellectually we know that planning ahead doesn’t cause an event to happen. And shifting our responsibility onto our family not only can lead to our wishes not being honored but it’s a horrible burden for those we love.

5 steps to help get you started

If you haven’t made your plans known, make a promise to yourself and your family to start today. If you don’t know where to begin, The Conversation Project is a wonderful resource and offers a free starter kit. Here are 5 steps to help get you headed in the right direction.

To help focus your thoughts, complete the sentence “what matters to me at the end of life is _____.” Is it being surrounded by loved ones, staying at home or exhausting all possible treatments? Answering these questions and others can help you define what you would want.
Don’t keep it a secret. You’ll need to express your wishes to someone if you’re unable to communicate them at some point. If you’ve avoided the subject this long, don’t expect it to necessarily be comfortable or come up naturally.
Decide who you want to talk with, where and when. Think through what you want to say beforehand. Check The Conversation Project’s website for suggestions on how to break the ice.
Be patient. This is only the first conversation of what should be on-going discussions. Not everyone will agree with what you want or be ready to talk. But these are still your decisions to make.
Begin by completing the two legal documents below and speak with your attorney for other needed paperwork. Nothing is set in stone. They can still be revised if you ever change your mind.
1. Choose a healthcare proxy or durable power of attorney for healthcare, which allows someone to speak for you if you’re not able.
2. Complete an advanced directive or living will, which states your wishes regarding end-of-life medical care if you’re not able to make your own decisions. Every state has its own forms. For more information, click here.

Decisions still need to be made even if you don’t make them

Take a small step today and visit The Conversation Project’s website. If you need motivation, look at your kids, spouse or other family members who will be responsible if you’re not. Studies have shown people often suffer from anxiety years after having to make these decisions for a loved one. And not because they feel like they were wrong but because they can never know if what they did was right.

I will always regret that we never had the conversation with our mom. There’s nothing I can do now except move forward with the promise not to do that with my family. It’s a helpless feeling to be in a crisis and asked to make someone else’s decisions. Make sure that one day you don’t leave your family having to second-guess what yours would have been.