One of the most compelling reasons for diversity in leadership positions, especially in elected positions, is that the different life experiences we bring to our work should make our decisions more reflective of those we serve. At least that is the hope. This week I continued my tip-toe back to whatever normalcy will be with a business trip to Chicago. So it felt like a good time to tackle an issue that conflates my public policy views/work life with my journey as Chuck’s caregiver. This one might need a warning - it is about some of the hardest decisions we make as humans: it’s about the choices and challenges we face as a society, as a family, and as individuals when we are dying. It is also long - as there is a lot of ground to cover and I spent an extra day in Chicago due to weather delays!
Many commenters have noted that as a country and society we aren’t very good at grief. We are so much worse at end of life and death. Some of that is because of poor policy but also because of our human nature and it isn’t always easy to tease out where one starts and the other stops. I can’t possibly cover everything Chuck and I experienced or all my thoughts in this blog post, but I will introduce a few themes and hopefully, I will come back to them later.
Doctors. This is not going to be about single-payer health care & insurance - although many of you know I have some strong feelings on both. So if you came for that, wait for another day. I don’t know what the curriculum is in medical school regarding how to speak with patients and families when options for sustaining good health and quality of life start to narrow precipitously but I can guess that they either don’t exist at all or are not done well. Late last spring as Chuck had begun dialysis but was still having lots of health complications, we began the process of determining if he could receive a second transplant. We were spending a lot of time in and out of hospitals for infections, tests, interventions and he was losing precious time on the farm and getting weaker. I was beginning to spend more time getting tested as a possible donor in a three-way swap. However, Chuck had other issues going on including a blocked ureter that folks determined he was too weak/immune-compromised to attempt a complicated surgery to repair. This of course led me to the obvious question: if Chuck was too weak for a ureter repair - a 3-hour procedure that is part of a kidney transplant - how would he survive a second transplant? As I have said, we are fortunate to have a concierge doctor who is attentive, caring, honest, and smart. I made an appointment to go see her to ask this question even though I suspected that I knew the answer.
The answer was that unless Chuck’s immune system recovered, there would be no 2nd transplant. And so the question I was empowered to ask was: would Chuck’s immune system recover? And the answer, when I asked that direct question was - probably not. So, we stopped going to Boston. We stopped trying to get a second transplant. We never stopped hoping for a miracle but we did start protecting Chuck’s precious time.
This was one of the multiple points in time where I had to realize that very well-meaning doctors would keep testing, treating, and encouraging Chuck to pursue complicated and expensive options even when dispassionate observers would realize there was almost no chance they would come to pass. Each time it was incumbent on me (luckily supported by Dr. C.) to ask very specific questions and to make the decision to pare back interventions. It is impossible for me to put words to the psychic burden this created. Rather than doctors introducing reality & a quality of life path to us, I had to introduce these conversations. And, not only quality of life was at stake but a lot of expense and capacity of scarce health care resources.
Let me be crystal clear: Chuck and I made tough decisions that were right for him. They would have been easier if introduced by doctors. Yes, they were consistent with some of my long-held political beliefs that we spend way too much money on unnecessary medical interventions for end-of-life care. And that home care is often both preferrable and less expensive. But I am no saint - if Chuck wanted to keep trying everything and to camp out at MGH every day I would have been right there with him.
Regrets. Every person who has served for any time in politics eventually has life experiences that contradict their political beliefs. Some would seek political hay based on that - I just chalk it up to being human. For me the thing I regret - not in its entirety necessarily - is that in my support for John McCain (good) I was called upon to defend Sarah Palin. I don’t regret calling out the classism and sexism. But for whatever her own reasons, she chose to become (or maybe she always was) someone who gravitated to the provocative sound bites. Most of the time this form of politics is annoying and harmless. But her criticism of health care reform and in particular one aspect which she called “death panels” has never sat well with me and stings more now. Tackling the policy and personal choices that occur in those precious, sacred final months is complex, hard and sensitive. Exactly the opposite of what you solve with sound bites. Shame.
But not just politicians need to heed the words they use. I am still angry (a stage of grief, I know - but for the record I was angry before Chuck died and there are witnesses) at the dialysis doctor. Despite clear data showing that dialysis was losing its efficacy for Chuck by fall, his primary dialysis doctor insisted (with his nervous laugh) in telling us during the monthly and quarterly updates required by Medicare (as an aside I am 100% convinced they would never have happened if not required - so kudos to whomever required that) about the patient he had who “lived for 20 years on dialysis.” First, this is so clearly not the data-driven reality for most dialysis patients. Second, assuming he believed it was important to provide hope to patients for whom dialysis was effective - it clearly was not applicable to Chuck for reasons I will probably never know. So what exactly did he think this accomplished besides making us feel like failures?
Hospice Care. Because Medicare won’t allow dialysis patients to enter hospice while on dialysis - even when the patient’s dialysis ‘numbers’ show that this life-sustaining treatment is losing its effectiveness - we were effectively on our own with Dr. C. When Chuck couldn’t breathe, we not only paid out of pocket for oxygen, but coordinated the set up. No social workers or hospital bed when the side effects of the diaysis (I don’t know if these were because it was not working well) made the caregiving a heavier lift. Again, my flexible job and amazing daughters, and our financial position gave us the ability to create work-arounds. But the path we were charting was completely consistent with sound (and cost-effective) public policy - yet we were thwarted at nearly every turn and encouraged to take the more invasive, expensive path.
I don’t regret any of the choices we made - most together, in the last 48 hours I had to make them myself empowered by the many “what if” conversations we had over the previous years. But how many patients without the ability to research or the information and wherewithal or support to ask the tough questions are wasting precious days and weeks undergoing useless procedures? If anything, that is what haunts me.
The cause of death. Okay, this is what really haunts me - and leads to my conviction that too many doctors see death as a personal failure and therefore can’t help families at the hardest time of their lives. I know this because it was the responsibility of the happy dialysis doctor to ‘confirm’ Chuck’s death and sign the death certificate. He wasn’t there though. In the end, we succeeded in doing this our way. Chuck died at home relatively peacefully after less than 48 hours in hospice. The assigned hospice nurse never saw him alive and arrived as procedures require to confirm his death and then get official sign off from Dr. Happy.
I will pause here as some of you may wonder why I identify my daughters by their actual names while I conceal the names of these doctors. It might seem off. My daughters’ first names have been public since their birth. They have a different last name and the deal Chuck and I agreed on with my social media was I could use their first names but limit the details of their location. When they went to college, I scrubbed my Instagram and put all personal pictures there. Chuck’s doctors all cared about him deeply I believe. And I never asked any of them if they wanted to be in my social media screeds, so ….
Happy listed 3 causes of death for Chuck in this order: 1. UTI; 2. Failure to Thrive; 3. Chronic Kidney Disease. When I first got the death certificate I wanted to storm his office and demand answers. For the record, I did not. Chuck had a LOT of UTIs. And they were really dangerous and any of them could have gone septic (and several did) and led to his death. Happy often refused to order antibiotics or delegated that to the urology team. AND Chuck was hospitalized for several days before his death and it was determined he was not septic and he was on antibiotics for the UTI when he died. I was told a million times that what I thought were UTIs were just ‘contamination’ in his nephrostomy tube that wasn’t dangerous and we were discharged with antibiotics for a UTI that if it existed was not septic or dangerous.
But the ‘failure to thrive’ is the one that sends me to orbit. Chuck fought for 67 years to thrive. He was strong, tough and had a ferocious will to live. He desperately wanted to see his daughters graduate from college. I don’t know what that ‘failure to thrive’ means in medical terms but it is an insult (I had a colorful adjective before “insult” then I remembered two priests read this …) and says more about Happy than Chuck. And a lot about the inability of doctors to accept that eventually, we all die. And that in many, many, many cases doctors and health care professionals will be intimately involved in our lives during that period when we are on a path to death.
I believe it is important to expand palliative care through hospice. It is humane and will provide important support to families. I also know that doctors will need to help families to know when that care is needed. And for many, once they have it it will be a huge blessing. And the policy and budget implications for us as a society will be plentiful.
I mostly know this because the unbelievably difficult conversations Chuck and I had with our primary care doctor, Dr. C., both before and throughout his ordeal, were the reason I had the strength to make the final decisions that honored his wishes. At one point I apologized to her for taking so much time to just ask questions and work through decisions - that didn’t feel like “health care” as I knew it. She assured me that these end of life conversations were in fact the most important and impactful appointments. Somehow these posts always end in the same place - with me realizing that our family is so very blessed.
Thank you, Jane, for sharing this.
During the last 4 days of my husband’s life 2 yrs ago the nurses and doctors told me he was very sick but I knew that. My daughter was out of state and I kept asking if I should bring her home. The night before he died I asked the doctor if he was “ever leaving the hospital” and he replied “we are doing everything so he can”. I woke up in the middle of the night and called the floor to check on him and after a lengthy hold a doctor I didn’t know came on the phone and said she hoped to keep him alive til noon that day. I was stunned that I had no idea from his regular team this was a possibility. I had to call my daughter to quickly get her home in time, which she did. But the conversation never happened with me that this was a possibility. I now know death is a failure in their eyes but to those of us who have no experience in these matters we are caught off guard. I’m not trying to be critical of his care but wished we could have had these conversations. I am still haunted by the panic I felt thinking I should have had my kids there sooner