Your loved one chooses to stop treatment that may provide more weeks or months of life. Perhaps they refuse more chemotherapy or continued dialysis. Although it may seem contradictory, this refusal of ongoing treatment does not mean he or she wants to die. On the contrary, their choice would be to live if there was a chance at improved quality of life. But without the opportunity for improved function or more enjoyment, they are choosing to live out their definition of a good life knowing that the end is unavoidable.
You love this person. And intellectually, you may understand. But emotionally this can be a difficult change in direction. You may feel as if you are being abandoned. It may seem that they are choosing a more rapid progression towards death over a continued fight for life.
Less Often Equals More
Sometimes the physiologic impact of treatment can weaken the body or create side effects that actually result in a quicker death. Statistics reveal time and again that people who stop treatment for cancer and choose the support and symptom control of hospice actually live longer and better for the final leg of their journey. Stop treatment; live longer. Seems counterintuitive, right?
A good friend sought my support when she decided to stop chemotherapy for her advancing cancer. We talked about her definition of quality of life, and her response was quick, strong and clear.
“Living, for me, is fishing, time with friends, and working on that antique dresser I am restoring. What I am experiencing now is not living. I’m not ‘giving up.’ I’m accepting reality.”
There was a time that the future held the promise of remission, but no longer. There was no end to ongoing treatments and their impact on her. Unable to enjoy the things that gave her joy and meaning, she was confined to her home, sleeping near the bathroom due to the side effects of her treatment, and lacking the energy to participate in even the most basic aspects of her life.
Death is not the enemy. Suffering is the enemy when there is no hope of improving daily existence. The line that separates a quality life from something unacceptable can only be determined by the person who must live that life.
A Good Ending
The decision to stop treatment can be a tough choice for the family to embrace, as it never feels like an acceptable time for someone you love to die. Yet, it is essential that you put your own grief aside and focus on the quality of life of the person you love. It’s not easy. Letting go never is. Loving that person enough to let go can feel like a herculean feat.
In the comic strip “Funky Winkerbean,” Tom Batiuk wrote a touching storyline about the character, Lisa. With advancing cancer, she explained her decision to stop burdensome treatment to her husband, stating:
“I want to live the life I have left, not just be alive.”
The decision to stop treatment is rarely about wanting to die. It’s about living as well as possible. It means you want to experience your remaining days or weeks on your own terms.
Tani Bahti, RN, CT, CHPN, offers practical guidance to demystify the dying process. A RN since 1976, Tani has been working to empower families and healthcare professionals to enable the best end-of-life experience possible through education and the development of helpful tools and resources. The current owner of Pathways, Tani is also the author of “Dying to Know, Straight Talk About Death and Dying,” a book that SevenPonds considers one of the most helpful books on the subject available today. Founder Suzette Sherman says, “This is the book I will have at the bedside of my dying parents some day, hopefully, a very long time from now.”