Disclosure: Although I am told by everyone that I look and act a decade or two younger than I actually am, the truth is that I was 85 on my most recent birthday! This fact very much drives my decisions about how to live with my recently diagnosed Stage 4 lung cancer, which has metastasized to my bones.
I have no doubt that if I were considerably younger and especially if I had young children to care for, I would choose aggressive treatments, in spite of their poisonous effects, to buy any amount of time to be with my children. But for me, at this time in my life….quality is much more important than quantity.
Quality of life for people living with chronic life-threatening illness is clearly a very subjective matter. Professionals are busy parsing various ideas about what makes a good quality of life but I have some clear personal standards for myself: In general, I need to be able to maintain and enjoy many, not necessarily all, of my usual activities and social connections.
At the very top of my list is to be pain free, whatever that takes! Next on that list is being able to stay in my peaceful and beautiful apartment enjoying relationships with my family, friends and colleagues. And I also need to be physically active. If I am not able to actually continue my ballroom and ballet activities, then at least I must be able to take a good walk in the fresh air!
I also have hope, not for a cure which is unrealistic for me at this point, but for living a satisfying life as long as possible. I subscribe to the metaphor of Niagara Falls I once read on a cancer patient’s blog of living fully until I can’t and then going over the falls.
Obviously I have already given much thought to end-of-life decisions for myself both because of my age, and because of my work for the past 20 years with older adults facing the end of their lives. I decided long ago the path I would take regarding my own end-of-life decisions when faced with a terminal illness and have made my children well aware of my wishes: “Give me a glass of good red wine, play Mozart and leave me alone or I will haunt you for the rest of your lives!”
On reflection, I have lived a good long life during which I believe I’ve met the challenges put before me bravely and well; I raised three wonderful children of whom I am very proud both in their accomplishments and in their humanity. And although I have certainly made my share of mistakes, I have no regrets. I have done everything on my bucket list (although I’m always ready to add more), including riding on a Harley and cruising up the Irrawaddy River in Myanmar. I was always a teacher, mentor, care-giver and apparently frequently an inspiration to many others.
Highly Personal Decisions
It seems to me that no matter how you treat or don’t treat Stage 4 cancer, there is great trouble ahead. Even when there is a cure for a particular person and cancer, there is often much pain and suffering either as a result of the treatments or because of the nature of cancer, The Emperor of All Maladies, as Siddhartha Mukherjee named his Pulitzer Prize winning book about cancer.
I have no intention of accepting futile treatments that might gain me a few weeks or months of longevity but leave me incompetent, incontinent and immobile! I am fully aware that my decision is certainly an individual choice and definitely not for everyone. But my own truth is that my quality of life and maintaining my sense of self to my last breath are more important to me than how much longer I live.
PEARL OF WISDOM
Older adults need to think about their end-of-life wishes and convey them to their children or trusted friends verbally and in written form. Adult children need to have the discussions so they know what their parent wants when the end of life inevitably draws near. Clarity about these issues makes a difficult time more bearable and less conflictual.
© 2017 Joan Blumenfeld