What Matters Most When Caring for Loved One

End-of-life conversationIf you are caring for a loved one, whether it’s an aging parent, spouse, sibling or friend who needs help managing medical conditions, treatments and healthcare decisions, I highly recommend reading the book, “Being Mortal”, by Atul Gawande.

When I told a friend I was reading it, she asked, “That book is about dying, isn’t it?” I said, “No! It’s about making choices so you can stay in control of how and where you live out the final stages of your life.”

Dr. Gawande points out that the medical community tends to look at aging as a medical problem that needs to be fixed. He said, “…Our decision making in most medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality.”

He goes into depth about how to ask the right questions so you will know what matters most to people who are coping with life-ending diseases. There are some basic questions each of us need to answer. Depending on our age and stage in life, your answers may vary:

  • Do you want to be resuscitated if your heart stops?
  • Do you want aggressive treatments such as intubation and mechanical ventilation?
  • Do you want antibiotics?
  • Do you want tube or intravenous feeding if you can’t eat on your own?

These questions are all included in an Advance Directive, one of the end-of-life documents everyone needs. In this document we appoint a health-care representative who is obligated to follow our wishes – even if they don’t agree with them.

As important as it is to ask and answer these basic questions, Dr. Gawande points out that what may be even more important is determining what matters most to the patient regarding quality of life versus quantity of life.

In one story he describes a conversation a woman had with her father the night before he had a risky surgery. When she asked him what he would need to be able to do in order for his life to still be worth living, he said, “I want to be able to eat chocolate ice cream and watch football.”

When Dr. Gawande’s own father was facing surgery for a spinal tumor, he asked his dad what trade-offs he was willing to make in order to live. His father said that being with people and interacting with them was what mattered to him most. However, he wasn’t willing to accept a life of complete paralysis and of needing total care. He wanted to be in charge of his world and life.

Finding out what matters most to people and understanding what they are willing to suffer and sacrifice in order to extend their lives can help families and physicians make decisions in accordance with the patients’ wishes when they are not in a position to do it themselves.

Although this book is about aging and end-of-life decisions, it isn’t depressing. It’s good to know that even if we are old or dealing with a life-ending illness, we still have choices. If we make those choices now, and let our loved ones know what matters most to us, it will be much easier for them to make informed decisions that will help us stay in control of our lives until the very end. I think that’s tremendously encouraging and empowering.