Having the Conversation

When my dad was diagnosed with an aggressive brain tumor, our family quickly realized he would not be making his own decisions for much longer. After surgery to remove a golf-ball sized tumor, we started to see a dimming of the brilliance that had been a powerful guiding force in all our lives.

It was time for a conversation.

We sat down at the dinner table with him one night and asked if he could tell us what he wanted. He said, “I don’t want any 20-year-old doctors pounding on my chest,” and “If I’m not having fun at the party, I don’t want to stay.”

As he lost more and more cognitive function, we went back to those words over and over to make decisions about his treatment. They gave us a clear goal of prolonging life only so long as it had quality. He didn’t want extreme measures, and he didn’t want to linger in pain.

We were lucky.

As we went on this journey, we witnessed many other families arguing in waiting rooms. Families facing the emotional challenge of a loved one’s illness, grieving, tired, and suffering from fractures in their families, with no clear basis for making decisions on care, left with only their own differing preferences and opinions. And, sadly, their loved ones were probably facing the end of life on someone else’s terms.

We had our differences and opinions, but we knew what my dad wanted. It didn’t make it easy, but it made it easier.

As painful as it was to watch him fade, we made the most of the time he had left. We were able to find an amazing amount of joy in those last months. Joy we would have missed if we had been arguing.

Although we had a good idea of what my father wanted, it would have been helpful to have more information on paper. And I can only imagine how much easier it would have been for those families we saw struggling with life and death decisions.

To help with that conversation, HAP and Henry Ford Health System have created some tools to help make choices about end of life care and communicate them to loved ones. Go to Henry Ford’s Advance Care Planning page to learn about terms like durable power of attorney, living will, palliative care and hospice care. The site contains an advance directive form to name a person to make decisions if you can’t, and give that person directions.

It contains The Conversation Project discussion kit. The kit is designed to facilitate that conversation and cover all the bases. It provides materials that can help you discuss crucial issues such as:

• Who you want included in the conversation
• What will matter most to you at the end of your life
• How involved you would want to be in decision-making
• How long you would like treatment prolonged
• Where you would like to spend your last days

And it provides kits that help you talk to your doctor, select or be a health care proxy, deal with issues around dementia or Alzheimer’s, and even one on having the conversation with a child.

When I think back to that conversation with my dad, I’m so glad we got to have it around the kitchen table, in his home, where he wanted to, and did, remain until the end. Although we were grieving, we had peace of mind knowing that we knew and carried out his wishes. And our family bond was strengthened by the good feeling that we had been able to do that together.
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