January 13th, 2021

  Man, 2020 came and went, now 2021 is like "holy my beer AND my earrings..." She's like the weird ass stepsister that you invite to Christmas dinner thinking she'll behave for once only to learn she spent an entire year thinking up ways to make life even more miserable. It feels so weird that it's already January 13th, but it also feels like so much has happened this year already that it should at least be February by now. 

I've already re-written this post twice because I was worried it was too morbid, but hey, it's my blog and I don't plan to go viral with it so I'm doing it anyway. And please don't blow me in for being in crisis, I'm not in crisis. These are the realities of my job. 

The events of the past couple months have got me thinking about death a lot. Professionally, I'm currently surrounded by the thought of it each and every day thanks to COVID. Personally, we've had some major losses too, lately. It's all been enough of an onslaught that when we get news of something really good, we've been holding onto it as tight as we can. If nothing else, this past holiday season was a serious reminder of just how freaking short life is.

So let's talk about death, a topic many people suck at. I read two books recently that I absolutely loved and just could not put down. The first was The Book of Two Ways by Jodi Picoult and the second was That Good Night: Life and Medicine in the Eleventh Hour by Sunita Puri. 

The book by Sunita Puri is an autobiography of a young physician who takes an interest in the field of palliative care at a time where palliative care was just starting and had not become widely accepted yet. Fun fact: palliative care and hospice were not an established concept until about 1948 and it wasn't until 1990 that the WHO recognized it as a specialty. That's how young it is. So she becomes interested in it as an internal medicine resident and goes on to complete a palliative care fellowship. In a way her story was ironic because the stigma and assumptions she struggled with back then are still very prevalent today. Fortunately, most healthcare providers have since accepted the specialty and use it widely now. However there is still a large group of the population that believe palliative care means giving up, or withdrawing care and standing around watching as someone dies. But really palliative care providers have a huge umbrella of skills. Sometimes we contact them for help with bothersome symptoms from a chronic illness like pain, nausea or lack of appetite. Sometimes we ask them to have a difficult conversation with family about a loved one's prognosis if we need a provider with specific training on approaching these conversations. And yes, many times we are asking them to discuss what we call "goals of care" with a patient and/or their family if it seems we're reaching a point where the risk of pain/suffering due to an incurable illness may outweigh potential benefit from continuing aggressive medical care. 

The thing that really stuck with me after reading this book was the way she approached conversations and I've tried to apply that recently with my own conversations. She approached things by asking the patient their goals and then asking the family what their goals are to get a sense of where everyone is setting their expectations. Does the patient want to continue to fight an aggressive medical disease no matter what or is their goal to optimize the little time they have left (AKA quantity vs quality)? How would the patient want to live the rest of their life? Does the family want their loved one at home with them in the same shape before they left or do they understand things will never be the same again and are prepared to face that? Are the goals and expectations realistic in the grand scheme of things? And if not, if the providers had done all they could do, how would the patient and family proceed at that point? It was a very interesting and powerful approach that really resonated with me. For one, it really gives people the open-ended opportunity to discuss where they're coming from and it helps you get to know them in ways that you can't get from the chart. Honestly I think everyone in medicine needs to read this one. I've said the words "goals of care" so many times, but this book really put that phrase into perspective. Screw that House of God book, that thing was a smutty awful mess, I'm still not sure how I finished it. 

The book by Jodi Picoult was another great one. Let's face it, anything she writes is incredible and thought-provoking. She tackles some big topics that aren't easy and she does it so well. 

The main character in the book is a death doula, a job I never knew existed until now. Basically it is a non-medical professional that is trained to care for a terminally ill person's physical, emotional and spiritual needs during the death process. Her portrayal of the character is that not only does she ensure the patient's medications are actually doing what they're supposed to, but she also takes care of tasks/projects/errands etc so the patient and their family can just enjoy their time together. While it's an interesting career choice, and certainly not one I could do, it also sounds amazing. We send people home on hospice all the time because they want to be with their families in their own home, but what happens once they get home? You get a hospice nurse that visits every once in awhile to ensure things are going well. If you're able to afford it, you could hire someone to come stay in your home and offload some of the medical responsibilities. Other than that, the family takes on a lot of responsibility, and it can be a taxing job that takes a way from that concept of "quality time." Now there's death doulas that can offload many of these responsibilities and help the family and patient actually get to spend time together. There's a lot more to the plot of the book obviously, but I'll just let you read it if you want to. 

It's tough to watch suffering, especially when you're trying to talk about it with a patient's family and they keep telling you to do everything possible to keep someone alive. I've learned there's a lot of nuances to a family's decision - some just don't know what palliative care is and worry that the alternative to aggressive medical care is standing around and not intervening when the patient is in pain or distress, some families have no idea what the patient would want because they never talked about it, some have strong cultural beliefs that guide their approach to end of life, some don't believe us when we say we've exhausted all medical interventions, and some are guided by guilt. The really frustrating times are when family members can't agree on a course of action and just hold everything in limbo indefinitely. But no matter what, we're here for the patients and their families and whatever they choose we try to make it happen. All we can really do is make sure everyone is on the same page.

I feel like I could talk about this for days because it is something I'm passionate about. As emotional as it is to have tough discussions with families, they're extremely important and being able to do it gracefully is not easy. I'm still not a pro at it. I still tear up every time I do it and I still stutter through it with as much grace as I can muster. Heck I can still remember my first goals of care discussion. It was Father's Day and I had a 92 year old man tell me that he'd had enough and he wanted me to call his family in to talk and he wanted me to do the talking. I was terrified and my attending basically said "good luck." His sons were so confused, rightfully so. Their dad was perfectly stable, so why did he want to talk about dying? Well, he was sick of coming to the hospital for his uncontrolled afib so he could get poked and prodded all the time, then get told he couldn't leave because his heart rates were too difficult to control. He decided if his destiny was to pass away at home because of an arrhythmia, that's what he wanted. And he was passionate as hell about that opinion. While it wasn't the stereotypical end of life situation and I was forced into being an advocate, he needed me to be the one to tell his family that he had reached a fork in the road where he could choose quality of time or quantity of time and he wanted the former. And that is one of our responsibilities as providers, is to recognize when someone is approaching that fork in the road and to be the person that advocates having the discussion. I've seen some providers shy away from it and instead put on a face of forced positivity that doesn't do anyone any favors. 

Anyway, I'll get off my soapbox. That's enough of a talk. 

So what do I do when topics start to weigh a little heavily on my mind? I think of sunlight (and puppies, but that's for another time). Some of my favorite landscape photos involve the sun. I love sunsets and sunrises, especially the super colorful ones, and I love photos where you can see the individual rays of sun filtering through. It just kind of brings me a little bit of peace and a reminder that the world can still be beautiful. Now unfortunately, sun has not had a huge presence here in Rochester for about a month now. We had one sunny day over this past weekend, but that was it. It's really driving me nuts. 

I know I said I was going to save this blog for photos that I take with my real camera, but this topic had me thinking about our trip to Maui and the morning we spent on the top of Haleakala watching the sunrise. Unfortunately I didn't have my camera back then, but I'm super excited to go back there with it, hopefully when I know how to photograph bright sunlight better because our poor iPhone cameras struggled with this one. Haleakala means "house of the sun" in Hawaiian. It has been said that the demigod Maui stood on top of the volcano's summit and lassoed the sun to make the day last longer. So one of the top things to do in Maui is to drive up to the top of the volcano (10,000 feet above sea level) and watch the sunrise. We did it during our trip and honestly, I don't think I've ever seen something so beautiful. I don't even think I can describe how it felt to be up there watching the sky slowly light up. Some would probably call it a religious experience. I don't think that even does it justice. Either way, I wanted to end this heavy blog post with some sunrise beauty, because we all could use some of it and I think about it whenever life gets a little sucky.