Can you take 2 posts in a row about palliative care? How about if this one is a tender love story? Not related to COVID. About an 87 year old who wanted to "pull the plug" over the holiday weekend because he was "done". And even though he was really sick, didn't appear to be dying in the next days to weeks. Except, what do we mere mortals know about predicting end of life?
When I sat with he and his 3 daughters and sister on Sunday and we talked about how things were going, I asked him if he knew he didn't "have a plug to pull". He said he did not. As bad as he was feeling, he surely thought he must be on some form of life support that could be stopped that would give him a quick exit strategy. What we could do I told him, was put a safety net in place, by making sure he had a Do Not Resuscitate order in the event he were to decline suddenly - which he enthusiastically endorsed. When asked if his bags were packed and he was ready to go anytime he was called from this life, he said "you got that right".
As we talked further about worries, he said he was anxious about "my death". This admission opened the door to good conversation about what to expect. Most people don't know what dying is going to be like and don't ask... maybe because they are afraid, maybe because they think it will be horrible and they don't want to know? Walking people through the process and providing reassurances that we will be there to manage symptoms and minimize suffering can provide great comfort. This is where the love story part comes in... when this part of our talk concluded he looked at me, winked, and said "I love you".
On Monday he decided he was ok with continuing some therapies, allowing more time to see if his body could recover. However, on Tuesday, he was short of breath, feeling badly, and wanted to be done. This time there was no "ifs, ands, or buts" about it. We quickly transitioned to a more comfort focused plan of care, and made medications available for his shortness of breath. Within an hour his nurse called to say he was declining rapidly. When we went back to see him, he had indeed changed dramatically. I expected he would die Tuesday night, but on Wednesday morning he was still there, looking very peaceful, breathing regularly, not really awake but intermittently would open his eyes. On my last visit Wednesday, late in the day, he opened his eyes and smiled at me, with what seemed like total recognition.
He died in the early morning hours today, Thursday. In 3 days he went from not having a plug to pull, to declining precipitously, to becoming stable, to finally dying comfortably surrounded by his family. What is to be learned from this? That death is mysterious. That sometimes people have a wisdom about their bodies and know something is going to happen before it does. That he loved his family very much and helped them prepare for his death in the way he knew best? I have only theories, no answers. The only thing I do know for sure is that THIS is why I work in palliative care.
P.S. That bougainvillea photo at the top has nothing to do with this post, except for the fact that I like it.
Thank you.
Posted by: Susan Maxwell Bjerke | 07/08/2021 at 11:50 PM
I so appreciate your views and stories about the times we will all face. And you do it in such a kind and caring way. I would say your patients are lucky and could very logically say "I love you". Thank you, Carol.
Posted by: jacki long | 07/09/2021 at 12:44 AM
Thank you.
Posted by: Daisy | 07/09/2021 at 10:03 AM
Thank you for sharing this beautiful event.
Posted by: Amy in Texas | 07/09/2021 at 06:13 PM
I wish the likes of you and yours worked in every hospital! I've saved so many of these posts in my "directive" file and I've quoted you in conversation. Thank you. xo
Posted by: Michelle A | 07/10/2021 at 06:23 PM
Thank you for posting this powerful and insightful message. Janelle
Posted by: Janelle Mulvenon | 07/11/2021 at 07:25 AM
Thanks to all who commented. If you or someone you love is ever in the hospital and seriously ill, I hope you will ask to have palliative care come and visit. It's not our job to tell anyone what to do, but rather to listen and present options for how people can proceed - based on their values and what they are hoping for. It can take a lot of pressure off families who may be trying to figure it all out for themselves. It's also easier to have a stranger facilitate a hard conversation...
Posted by: carol | 07/11/2021 at 08:22 PM
Thank you for this.
Posted by: Terri W. | 07/11/2021 at 11:49 PM
In some cultures bougainvillea is a welcoming sign and in others, the symbolic meaning is "peace." I think, Carol, that peace is what you and his family brought to this gentleman. Thanks for sharing.
Posted by: Sheryl Schaffer | 07/16/2021 at 09:55 PM