Based on an article in the NYT ‘Life, Interrupted: Am I a Cancer Survivor?‘ I posted the a Tweet and received the following responses which is spurring this post.
These response made me stop to consider who are the losers and winners in terminal and serious illness?
In the NYTime article Suleika Jaouad asks the following question ‘What does it mean to be a survivor?’ She further states that, and rightly so, the term “survivor” is as ubiquitous as it is hard to define. Cancer, its diagnosis, treatment, and outcome is as complex as Higgs boson. Cancer is not a binary zero or one, on or off, yes or no. It is a gradient of the disease, the patient, the family, the HCP, the insurance plan, and a dozen other variables. To look at someone with cancer as winner or loser I believe harms those with cancer who choose palliation or hospice. The reality is that there may not have been a choice to go into palliative or hospice care but, to position that decision in relation to being a survivor a winner harms the entire spectrum of terminal illness and especially cancer.
Let me make a point right now. I am not advocating that those diagnosed with cancer don’t fight like hell. They should do anything and everything to not lose that fight. (You can’t help but use that win lose analogy.) At the same time the American Cancer Society states there will be 1,529,560 new cancer cases and 569,490 deaths from cancer in 2010. The ACS further reports Cancer death rates fell 21.0% among men and 12.3% among women during 1991 to 2006. This could not happen if there were not winners and if people were not committed to survive. Those half million Americans who died fought their disease. Are they losers? And as they were losing their fight did they suffer unnecessarily? Did their loved one witness something that will forever remain etched in their memories? Those of us who have benefited from palliative and hospice care I hope feel as I do, even in my loss, my wife’s ultimate loss, there was a small sense of victory, it was dignity for both of us. As I’ve said and still don’t know where I Bogarted it from ‘Hospice saved my life.’
Robert Wood Johnson Foundation had a post ‘The Path to Palliative Care‘ which documents the December 1995 issue of Time magazine publishing the findings of SUPPORT the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Knowing When to Stop which to quote ‘American physicians often ignored the last wishes of dying patients and caused unnecessary anguish and stress’. The post points to the development of a robust palliative care movement in the US. As I’ve posted here before we have come a long way and many of us have benefited from palliative care and hospice but the data is clear there is more to be done. This movement and those who deliver it know how it makes a huge difference to both patient and family. Would they be investing so much and serving so selfishly if was not a winning proposition?
Further in the Jaouad NYT article she says a friend Tweeted the following ‘I loath the term. It’s either exclusionary or overly broad. So I don’t define it, I avoid it’ The author ends the article by saying she will continue to figure out what surviving is. And that is a great conundrum to face.
Those who know and have experienced palliative or hospice care know it is a hard choice to make and accept. It is hard to travel that path but compared to the alternative it makes everyone a winner. Perhaps those of us who some feel are losers need to let them know we are not.