The opinions expressed herein are exclusively mine.
I have many reasons to be thankful this Thanksgiving. I am alive. I have many people to thank and I will. But I want to acknowledge my friend Karen. She made the call that led people to my door when I was probably hours from death.
For my thankfulness I want to honor her courage. She died on August 27 after years battling Ovarian Cancer. The cancer started in her ovaries. It was temporarily contained by chemotherapy only to migrate to her brain where it was stalled by radiation. But then it found her spine and crept into her spinal fluid. There was no mistaking what was before her.
The Centers for Medicare and Medicaid Services (CMS) said it wants to reimburse doctors for end of life discussions. This provision, if passed, will not start until 2016. It is solely about discussion. Not action. Many already rail against it. But we need theses discussion with our families and physicians about what we want at the end of our lives or we could die in ways we would not wish.
Much attention focused recently on a terminally ill young woman who moved to Oregon so she could have a dignified death she could control. She did not have that choice where she lived in California. Only three states have Death with Dignity laws now: Oregon, Vermont and Washington. http://www.deathwithdignity.org/acts
We won’t all agree on Karen’s path. It is, however, what she chose. We do deserve to have control over our own lives. Our lives are ours. Atul Gawande, MD, in his new book Mortal Lives examines the importance of discussing our choices so they reflect our wishes at the end of our lives when people too often are faced with others making decisions for them. As nearly happened to me.
We need these end-of-life discussions.
Karen’s Death With Dignity.
Karen fought her stage four cancer bravely for years. Not one doctor said she had any chance to survive. She was fiercely independent, a devoted friend and loving wife. She was Auntie Karen to my son Remi Miles.
She did not want to live without quality or dignity. As her cancer spread she often had double vision. She lost sight in one eye and could no longer read. She was an avid reader. She loved her garden but could no longer plant or water it. She kept declining. Her favorite foods no longer tasted good. She finally could no longer help herself. She needed help dressing and bathing. She was too weak to stand by herself, get in and out of chairs, the sofa, the bed or manage her personal hygiene.
She had no appetite. Nothing tasted good. She weighed less than 90 pounds. She was tired all the time. She could not manage stairs and was restricted to the second floor with their home’s only bathroom. The kitchen was downstairs. She could not walk. She needed a wheelchair to move on just one floor. Her pain could only be managed with increasingly powerful drugs that left her physically and mentally exhausted. She could no longer do many things she loved such as reading, visiting with friends or enjoying eating or gardening. Her husband and friends gave her joy. But she did not want to live as an invalid with no ability to participate fully in her life.
She did not want to die a prolonged painful death. She did not want to live tied up to tubes. She knew she was losing what she loved most to constant pain, fatigue and dependency. She did not want to linger in what to her would be a lifeless life.
To have relief she chose to control her death. This was not a simple or casual act. Her choice could not be assigned to others. She was the only one who could decide. She had to be mentally competent. She had to have the signature of two different doctors who certified that nothing could be done—that there was no reversal, curative treatment. Then she could order the medication but had to wait at least two weeks before she could take it.
She could even decide not to proceed if she wished. She could not take the medication by herself. She had to be asked twice by a health care professional if she wanted to drink the medication. This was not a rash decision. It was not an impulsive action. It was not coerced.
She died peacefully with the health care professional, her husband and her family by her side. She could say she loved them and say good-bye.
End of Life Discussions
End of life discussions require many difficult personal decisions. Not all would make or believe in Karen’s choice.
I am eternally thankful to Karen for my life. I am thankful Karen had a choice in hers. We all should be able to have these discussions with our families and our doctors. We all owe ourselves these discussions.
At this Thanksgiving learn and respect each other’s wishes. Be thankful for family and friends. We are, actually, all we ever really have that counts in the end.
Kathleen O’Connor © November 16, 2014