When having a conversation with a patient’s family member, I realized they didn’t really understand the big picture. Of course, they had heard explanations of what the daily plan was for their loved one and they asked about the latest laboratory values and vital sign updates…but no one had really put everything into the big picture. I was able to paint a broader overall perspective that their family member had three major organ systems that were failing and the life support devices supported the family member in surviving from hour to hour. By shifting the perspective, it removed their blinders and changed the way we approached decision-making.
Over the last year caring for Covid patients in Intensive Care, I have learned that it is easy for families to look at the little details and see incremental improvements here and there with a certain lab value or saturation level and focus on that as an indicator of improvement; and a touchstone for hope. I understand that. Stepping back and taking a look at the big picture isn’t always what we want to see.
My dog Max is getting up there in years, over 14 years old now, and I was told to take a short video of him throughout the day to record how he moves doing his day-to-day routine. For example, film him when I walk in the door from work to see how he greets me or film him going down the hallway with a toy or film him briefly going to his bowl for water. That way in a month or two when I wonder if he is declining, I can take a look at the videos of him over time to see how his function has changed. Great idea.
It can be really hard to see the bigger picture in regard to our aging loved ones. Or our not so old loved ones with chronic serious illnesses. It is much easier to look at the smaller details that are still “good” or “stable” and not see the overall decline in function. But the truth is often not seen in the details. It’s in the bigger picture.
We see the small changes, we notice the decline, we want to stay hopeful and believe everything will be okay. Planning for significant declines in function and having discussions about how to handle them, in advance, can make the transition more bearable, if not vaguely familiar, because the topic has already been discussed. We talked about what will happen next; we are prepared for it; we’re ready for the next steps and we know where to get resources and support.
Take the time now to have the big picture discussions with your loved ones and healthcare providers. You may have to be the one to start the conversation and bring up the tough topics. You might have to be the one to read the literature and ask around for reliable information. You may have to bear the brunt of people not wanting to have those talks with you. I understand. And I can help facilitate those conversations and get you started. In the big picture, what do you want? Let’s make that happen.
“Honesty is often very hard. The truth is often painful. But the freedom it can bring is worth the trying.” – Fred Rogers