Addicted to ACP

16.10.2018
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Rev. Dr. Mike Johnston is Director of Spiritual & Supportive Care at AnMed Health in Anderson, SC.  Prior to joining AnMed Health, Mike served in a similar role at Gaston Memorial Hospital in Gastonia, NC as well as two other hospitals in the Richmond, Va. area. Mike has served as Stated Supply Pastor at two small Presbyterian Church’s in NC and one small Presbyterian Church in Anderson. Mike and his wife Valerie have four children, one granddaughter and one grandson.

 

That is a pretty surprising title of a blog about Advanced Care Planning, especially by a hospital chaplain. But, there is a reason for it. Having done hospital ministry since 1992, I have had a great deal of experience with families who never had a conversation, never had a discussion about the “What if . . .” and we all know that ‘What if” happens a lot more frequently than folks can begin to imagine.

One of my first experiences around ‘What if” occurred at the Medical College of Virginia Hospitals where I did my clinical training. A large family was gathered in the waiting room, the ten children and an even larger number of grandchildren were gathered as “Momma” was in the ICU. It was clear in the eyes of the medical team that she was not going to be leaving the hospital and the family was split, right down the middle, five were ready to focus on comfort care and five were not going to let Momma die no matter what. From listening to the family there had been no conversations about what Momma wanted if something unexpected happened. And here we were, ‘What if,’ and the family was literally torn apart. As I watched them fight, and yes security was called to the waiting room on more than one occasion, I saw the suffering in their eyes; I felt the deep pain of not knowing what the right thing to do was; I experienced in real time what can happen to a family that doesn’t have an advanced care planning road map, discussion, document.

In the aftermath of that painful learning experience, I reached out to my parents to ask, “What do you want if something unexpected happens?”  Both of my parents said they had an advanced directive, but I didn’t know what they wanted so I pushed them for a conversation. Both were clear in their desires and shared with me their wishes for end of life.

Fast forward to Jan of 2014. My dad had been diagnosed with Stage 4 Lung Cancer as well as End Stage Kidney Disease. For many years my dad had said time and again, “I won’t ever do dialysis.” UNTIL, he learned that even with a terminal diagnosis and referral to hospice, his nephrologist suggested dialysis when his kidneys reached that level of need. I was shocked and was like, why? He told me that he had some unfinished business he needed to take care of, then he would stop the dialysis. I understood, sort of. For the next 3 months he went to dialysis three times a week and he hated every single minute of it. He sold his car and gave the proceeds to the 7 grandchildren. He moved his stocks and accounts to my mother’s name. He promised he would get the taxes done, but he had never done that in his entire life, filling extensions every year. Between the advancing cancer which he refused treatment and the dialysis he endured, I watched my dad get weaker and weaker. His last dialysis treatment drained what little life he had right out of him. A week after Easter that spring, he died, comfortably and not hooked to machines at the end, as was his wish.

As a chaplain and a son, I have watched loved ones wrestle with end of life decisions more times than I can count because there was never a conversation. I have observed the pain and suffering on the faces of both patients and families far too often because there was never a conversation about ‘What if.’ Too many people are afraid of these conversations because they are not easy conversations. But they are critically important when it comes to end of life.

For the last several years I have been involved with a state-wide effort in SC to improve these ACP conversations. At AnMed Health where I work, all of my chaplain colleagues have been trained in Respecting Choices First and Last Steps facilitation. Our hospital ACP Initiative has been focused in our Family Practices where the physician office sets up appointments for us to meet with patients in the practice to have these facilitated conversations. We are beginning to have these in our Specialty Practices as well, from Oncology to Pulmonology and Cardiology. The patient response has been phenomenal. The response from the various Practice Physicians has been extraordinary because we are offering them a way to have meaningful discussions that can impact their patients at the end of life. Conversations are had; documents are completed and scanned into the Electronic Medical Record and followed when the time comes. The culture is changing, and changing for the better of patient-centered care.

I have learned a great deal from having these conversations because we focus our discussion on what values, beliefs, connections are most meaningful for our patients. It is not about completing a document, it is about assessing what matters to them, what are they willing to trade-off for extra time, what abilities are so critical to their life they can’t imagine living without those abilities. I have seen the results first hand when patients have come into the hospital and we are able to pull their documents easily and support the wishes of that patient and family in difficult and often critical times.

My wife and I have completed our documents and have had conversations with our four children. We have also had discussions with them about what matters most to them if ‘What if’ occurs. I feel confident that my kids know what really matters to my wife and me. I also feel confident that I know what matters to my oldest daughter, our two sons and our youngest daughter.

ACP has become my passion, my addiction, if you will. It makes a difference. It makes a difference one patient and one family at a time!

 

 

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