This week a piece by writer Leigh Page was published with the title “Doctor, Don’t Give Up on Me!.” Mr. Page addresses a very small, but very important sliver of the population. He details insights into patients who want to continue treatment despite physicians’ warning not to do so. This is a difficult subject to address. For those of us with extensive experience in caring for patients and families in this type of scenario I believe there would be an easy consensus that this issue cannot be adequately explored in a single article. But I am glad Mr. Page raised the issue and will take the opportunity to explore some critical aspects of this topic over the next few blog posts.
The examples Mr. Page uses are from hospitalized patients. That’s the right place to start because it’s clear talking through goals of care is something initiated in the hospital rather than further upstream in a patient’s journey. But we know that people make decisions during a hospital stay differently then they would at home in “steady state.” When you’re hospitalized its often times of physical and emotional distress. Test results are pending. New specialists are coming to see you to render an opinion. You have over 20 strangers per day coming in and out of your room, disrupting your sleep, peppering you with questions that seem unrelated to why you have terrible back pain or difficulty breathing. The familiar faces you know from the clinic or office are often absent. Family members are at work or otherwise absent during the day when most of the information is coming at you in a fashion that is too fast and too technical. How can someone possibly make thoughtful decisions about their future under these circumstances?
Imagine a different way. What if patient and family members had on-going education and discussion about the state of their illness and their goals. Consider how care would look if we started these conversations from the time of diagnosis. What if patients had time to to digest the information they receive over days, weeks, or months before an inevitable hospitalization. They can reflect, pray, discuss, or process the information in a way that is most befitting for them. Family members could be involved. They would feel consulted, involved, and recognized as an important part of the patient’s care. Then when it is time to be hospitalized everyone is on the same page about next steps. Instead of the conversation starting in the hospital there is a review of the series of conversations that were held leading up to this point.
Would this change the degree of disagreement and conflict? Absolutely! This is something I’ve seen for over a decade in providing advance care planning (ACP). And the studies strongly support this. In bringing this back to Mr. Page’s article, timing is critical when it comes to preventing the problem he addresses. To be effective, ACP needs to happen early and regularly. If we achieve this as a society then the level of distress and dissent described in the article will in large part be prevented.