How We Live Before We Die

How We Live Before We Die

Anne Katz, PhD, RN, FAAN

@DrAnneKatz
Jan 14, 2015

A friend of mine died after outliving her prognosis for more than a year. I was with her at almost all her appointments with various oncologists. She had asked me to be the notetaker for these appointments so that she could focus on the discussion as it happened and then have the notes to review afterwards.

Her treatment course was complicated, and her tumors did not respond to the first round of chemotherapy. Because of severe side effects, she decided to not try second-line chemotherapy and opted for conservative management of her symptoms.

I felt honored to have been asked to accompany her in this journey. I learned a lot about my physician and nurse colleagues through their communication with her. They were mostly good, and some were excellent. But that is not the reason for these musings . . .  

At one of her appointments with a medical oncologist, she was asked what she regarded as good quality of life. Without hesitation she replied: “Being able to work on my laptop.” This shocked me, as I really thought she would say that spending time with her family would be high on her priority list. However, her work was that important to her. She tried to continue working right up until the very last weeks of her life. She was a scientist and had been on leave for a year but still participated in conference calls and answered emails when she could. She was hospitalized off and on during that year and asked for her laptop frequently so she could work, although I was not sure how productive she was given the medications she was taking and the constant interruptions from staff.

I struggled with her choice of work as a marker of quality of life but respected that and never talked to her about her choice. Many years ago, I worked in HIV/AIDS care and learned important life lessons from the young men I cared for. One, in particular, has guided my life philosophy. Michael was 33 years old at the time of his death. He was an award-winning journalist and had written a novel. This, for me, was the pinnacle of success—a book! He gave me the manuscript to read, and I tore through it in a day. It was wonderful, and every time I saw him after that, I asked if he had found a publisher yet. One day he looked at me and said: “It’s not about the book, Anne.” I was dumbstruck. How could it NOT be about the book? He went on to explain that at the end of his life, what was important to him was his partner and his family. I got it—it’s not about the book/work. I have carried that lesson with me—at the end of life, as many have said, it is not about your accomplishments but about the relationships you treasure.

So, why did my friend say that she valued her work and to me it seemed as if this came ahead of her family? Is that what she really meant or just what she said in the moment? Was this in part denial about the finality of her diagnosis and the lack of treatment we could offer her? Was she protecting herself from the inevitability of leaving her family? Or was it really the work above all? When we depart this life, what do we really leave behind? Will our research findings and published papers live on forever? Or do we really only live on in the memories of our loved ones?

I never asked her about this, and now it’s too late.

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Comments

Ellen Kay LeMosy, MD, PhD

Jan, 14 2015 9:58 PM

Dr. Katz has a clear point of view, but speaking as a scientist and former cancer patient, it seems that she is selling her friend's motivations short. Science is a collaborative endeavor - there may have been trainees or colleagues whose careers and funding (and thus their lives/security) depended on her knowledge and writing. (I know I felt a strong responsibility to my lab members, not wanting to take anyone else down with me.) There are purpose and legacy, which are more than "accomplishments." The project and ideas may bring her joy and an intellectual spark that is a refuge from the ravages of cancer and its treatment. If a friend was the one accompanying her to her oncology appointments, she may not have the close family relationships on which to pin quality of life in final months, or using the laptop may represent the lowest level of mental functioning she considers good quality of life. In the end, it's the patient's call on what is an acceptable quality of life.

Anne Katz, PhD, RN, FAAN

Jan, 15 2015 9:29 AM

Thank you for your insightful response to my blog. The intent of my musings was to reflect on MY response to her answer to the question posed about quality of life and MY regret that I never talked about this more with her. Over time I considered many of the issues you raise in  my attempt to understand her choice and my response to it - and your rationale points to the importance of the CONTEXT of people's lives that influence everything they do and say - and how we as health care providers (and even as friends) can never be absolutely sure we understand and appreciate that context.

James Randolph Hillard, MD

Jan, 23 2015 12:53 PM

When Sigmund Freud was asked what constituted the good life, his response was being able to "lieben und arbeiten", being able to love and to work.  I can really identify with this.  Earlier this week, I had my every six months CT scan, after having been diagnosed with metastatic gastric adenocarcinoma which was HER-2 positive in 2010 (trastuzumab is why I am still alive; but, of course, most patient's tumors eventually become resistant to it).  Since then, I have made my relationships with my wife, my adult children, and my mother a much higher priority.  For most of my life, I had been sort of a careerist robot who had taken these relationships for granted.  At the same time, I have developed a new professional mission in life, which is to improve the recognition of H. pylori infections and of stomach cancer, in high risk populations, both among potential patients and among primary care practitioners. 

These are the things that have kept me going and helped me put up with my very unpleasant oncology treatments.  I suppose that if I had to pick only one "reason for living," I would say that relationships with my loved ones was most important.  Fortunately, I do not really have to make a choice.  My life would be quite incomplete if I were not able to both "lieben und arbeiten."  Being able to do each of these, with love, really has made me better able to do the other.

 

Anne Katz, PhD, RN, FAAN

Jan, 27 2015 10:42 AM

Thanks for this response, James. Your eloquence in the midst of your disease experience speaks loudly for doing what is right for YOU and I really like the idea of this balance between love and work and the interdependence in your life.


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