In February of 2019, I accompanied my grandfather to a doctor’s appointment at a hospital in Chicago. (It’s strange to think of it now, but it was only a year before the pandemic.) He had been experiencing increasing abdominal discomfort for the past several months, and though we had a sense of what we were walking in to, it was with a quiet, withdrawn anticipation.
One of the oddest experiences I\’ve ever had in medicine happened at that visit. A resident – young, nervous, and unsure – was there to tell us the results of the abdominal CT scan my grandfather had had recently. And though he could not tell me the diagnosis, I could see he made the intentional decision to look me in the eye and tell us, “I’m sorry,” not just once, but multiple times, as he pointed at key words on the page that held the scan results. I could almost feel his palpable relief as he rushed out of the exam room. (I sincerely hope he has become a fantastic doctor. We all have awkward growth moments, and I’m honestly glad our’s was a way for him to get comfortable with stuff like this!)
My grandfather was diagnosed with small cell carcinoma, possibly originating from the lungs but with no discernible cancer in the lungs, with a large mass in his liver and possibly his gallbladder. Treatment was available, but after several family discussions and a second opinion, he decided to decline chemotherapy. So we instead got ready.
I have never been so thankful for my training. Oncology is my specialty. I knew we had to keep my grandfather comfortable. Even before we knew he would decide not to pursue treatment, palliative care (aka Comfort care) was the first specialty appointment I made sure to make for him. And at the end of his life, he declined quickly, without significant pain. He was admitted to an inpatient hospice unit in April. During his stay, as my brother described in his eulogy, “my grandfather repeatedly raised his hands to heaven as if he knew it would be his last day on Earth. He was right. A quarter past 10 pm on Monday, he passed.”
There are very few universal experiences human beings have in this life, but death is one of them. In Ecclesiastes, Qoheleth (or the Teacher), says, “for everything there is a season, a time for every activity under heaven. A time to be born and a time to die…”
Having worked in the field I work in, I think about death a lot. It has made me realize I am promised very few things during my days on earth. I am not promised even one more day of life. I am not promised that I will be able to wake tomorrow to hold my sons, smell their hair, kiss their cheeks, see their smiles. I am not promised another moment with my husband, with his silly humor, his strength, his affection. And … (it takes my breath away to think of it)… I am not promised that even if I live a long life, that anyone I know and love, my children, my husband, my family, will wake up tomorrow with me, to be with me as I live it. What I am promised is that no matter what, the unceasing, relentless love of God and his presence will stay with me. This awareness makes the experience of life feel so precious.
Death is something we must deal with as a result of the fall. Dying is never “clean.” There is emotional, physical, and spiritual brokenness tied in with this looming reality. So of course, it is also one of the hardest things for us to talk about. It’s weird. Awkward. And sometimes incredibly frightening. It’s also strange to think that we can do anything about. Why think about it at all? It’s not here yet, there’s nothing you can do about it anyway. Why worry?
During the process of going through treatment options with my grandfather and the level of care that he wanted, we set up a few things. Did he want to have extensive life-saving measures if he should have a medical emergency? Would he prefer to be DNR (do not resuscitate) and/or DNI (do not intubate)? Who is his power of attorney, who speaks for him and his medical care if he is not in a place to do it himself? What conversations did we need to have about his options? Who could we call in to explain all of this stuff? How could we help him to guard the quality of life that he wanted for himself?
All of this was important because a lack of clear communication could lead to invasive, painful procedures that my grandfather may not have wanted. It was a matter of honoring the wishes of someone we loved and cared for, as well as a way for us to utilize our time with him meaningfully. And what did he want to do with his time?
Now, how do we start talking about this? There was a recent article that came out in the Journal of Christian Nursing entitled “Increasing Advance Care Planning Conversations Among Korean Americans Through A Faith Community Nurse Intervention,” written by Dr. Morgan Park. (I know this is a serious conversation about death, but I cannot even describe to you how excited this article made me, since it represented both my ethnic, cultural background and gave me “this is what I want to be when I grow up!” – vibes). There are a number of great ideas in this piece, but the main thing is that even though advance care planning (ACP) leads to better outcomes, this can be incredibly difficult to figure out in minority communities. In this particular community, due to the high value placed on understanding and assuming non-verbal communication, it just feels hard to voice some of this stuff out loud. (And what does “better outcomes” even mean when it comes to death and dying?!)
There are several online resources listed in the article, but I wanted to go through just a few of them, as they are designed to open up conversation. All of these websites are relatively easy to navigate, and printable sources are abundant.
Prepareforyourcare.com
Ok, some of the video quality and acting feels a little … dated. BUT. I really like this site. It is simple, straightforward, and it takes you step by step through how to start the conversation with a loved one about what level of care you or they would want if a medical emergency should happen. It walks you through who a good medical decision maker for you would be, the priorities you might have for your care, and it overall helps you to make sure that someone knows what you want.
There are 5 steps (listed here). You can make a log in so that if you stop somewhere in the middle, you can come back to it later. There are also printable resources, for your self, a caregiver, and medical professionals. The only thing I was disappointed with was that it’s only available in English and Spanish.
Fivewishes.org
This one DOES requires you to purchase a legal document, but it is available in 28 different languages, and it’s relatively cheap. The document helps you to choose your healthcare agent (or your primary decision maker when you are unable to make your own choices), the level of medical care you might want, what comfort-based medications, procedures, or services you might want, how you would want to be treated, and what information you would want to share with the people around you, from family to the public. This is the one I will probably use for my own parents. The language is simple but clear, and you can circle or cross out items on each page, depending on the subject matter.
There are a variety of purchase options, from a single printable document to a “family pack” with instructional DVD and conversation guide. I was able to google a sample document and it goes through what advance planning options there are, and what to do if you already have something in place. (https://fivewishes.org/docs/default-source/default-document-library/product-samples/fwsample.pdf?sfvrsn=2)
TheConversationProject.org
This website has a pretty straightforward goal:
“The Conversation Project® is a public engagement initiative with a goal that is both simple and transformative: to help everyone talk about their wishes for care through the end of life, so those wishes can be understood and respected.”
One draw for this website is that it explicitly addresses patients or loved ones with changes in mental status who may have difficulty making their own decisions, or even for children who have a serious medical condition. There are prompts to start these kinds of conversations with these particularly vulnerable populations.
There\’s so much more to talk about when it comes to this subject, but these resources seemed particularly helpful and I may even use them to start some conversations with my own patients in the future. If you have any other helpful resources or have your own story about setting up advanced directives, please leave a comment! I would love to hear your story. And I hope this was helpful for you!
Resources
https://fivewishes.org/Home
https://prepareforyourcare.org/welcome
https://theconversationproject.org/
Park, Morgan Increasing Advance Care Planning Conversations Among Korean Americans Through a Faith Community Nurse Intervention, Journal of Christian Nursing: July/September 2021 – Volume 38 – Issue 3 – p 187-193
doi: 10.1097/CNJ.0000000000000839
Pingback: Making a Family Medical Record - Your Church Nurse