Recently, my father in law was diagnosed with a Stage IV Neuroendocrine Tumor on the head of the pancreas. Ironically, it’s the same disease that Steve Jobs experienced. Chemotherapy began this week and we’re hopeful that shrinking the tumor will relieve some of his symptoms. Cure is unlikely and many difficult decisions await us.
With Stage IV cancer, surgery is not an option.
If we do nothing, the highly aggressive tumor will cause rapid decline - weight loss, weakness, and susceptibility to falls/infections.
If we proceed with full cycles of chemotherapy, there may be reduction in tumor burden improving life quality or there may be side effects that make the situation worse.
We’ll work hard to respect all of his wishes on the journey ahead. Chemotherapy and medications are meant to be palliative. If complications occur, it’s likely that he will want minimal intervention.
He lives at the farm and needs to climb a few stairs, which is increasingly difficult, We’ll need to think about mobility solutions, home care assistance, and possible relocation of his living spaces to the first floor. We’re heading into cold and icy weather, so likely we’ll have to build a wheelchair ramp in and out of the house.
Having experienced the death of my father in March of 2013, the end of life process is still fresh in my mind. As Atul Gawande outlines in Being Mortal, we’ll focus on life quality, not quantity. My father-in-law and the dynamics of the entire family are paramount. We’re rethinking the pattern of our duties and our activities. I return to Boston from Europe tomorrow and I will not travel for the remainder of 2014, deferring all distant meetings and speaking responsibilities. We’ll take each day one at a time, and I’ll creatively juggle my time using Skype, FaceTime, and teleconferencing to balance home/family needs with work needs. My colleagues and BIDMC leaders are all very supportive.
Each of us will die. The goal is to ensure that death is dignified and pain free. My wife’s battle with breast cancer led to remission. My father-in-law’s experience of pancreatic cancer will include the entire spectrum of emotion, from sadness to love and hope. For now, medication, hydration, and spending time together is the most compassionate care we can deliver.
My thoughts with you and your family, Mr Halamka.
ReplyDeleteI had to go through similar phase with my mother suffering from cirrhosis of liver. She passed away peacefully 4 years back
Hope your wife and you can garner all the courage required during this phase.
John: I'm VERY sorry to hear about your father-in-law's illness, esp. so soon after losing your father.
ReplyDeleteIt sounds like you have things exactly right, as Atul Gawande is teaching us. People interested in what that means might start with Atul's recent wonderful NY Times op-ed from Oct 5, "The Best Possible Day": http://www.nytimes.com/2014/10/05/opinion/sunday/the-best-possible-day.html
For doctors and nurses trying to help, this need not be complicated -- just asking "What will make today (and tomorrow and tomorrow) a 'good day'?" can keep medical interventions focused on the right things. See, for example, the short (<4 minutes) video of one of my patients having a "good day" here: http://theconversationproject.org/how-jazz-singer-dolly-baker-found-voice-on-deathbed/
I hope there are many very good days ahead for all of you -- not just despite the fact that "mortality looms", but maybe even in part BECAUSE you are all now so vividly aware that every single day each of us has together is so precious.
Thanks for this posting.
--Lachlan
Lachlan Forrow, MD
Director, BIDMC Palliative Care Programs
Thinking of you and your family during this difficult time.
ReplyDeleteYou are inspirational, and I appreciate your openness in sharing your family's story so that we may learn and plan. Thinking of you and your family, and wishing you all strength during this part of your lives.
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