Most people who want to have a discussion with their doctor about end-of-life issues have been unable to do so. A survey came out demonstrating that nearly all doctors think it’s important to talk about end of life issues with patients and families, and the government just started reimbursing doctors for these discussions as well. So, shouldn’t we be seeing a big growth in these discussions? Not yet, and it’s unlikely to anytime soon.
It takes education and practice: Doctors are not taught how to have difficult conversation in an effective, compassionate manner. We’ve known that for decades. But even if they were would it make a difference? Probably not to the degree we would hope for. Why? It takes practice. It takes being placed in uncomfortable conversations over and over - sort of like learning to ride a bike. Because these discussions can be long, unpredictable, and stressful for a provider we are unlikely to see widespread adoption anytime soon based on today’s practice and payment models.
The focus is off: True advance care planning, or healthcare planning, shouldn’t be just about what happens during the last few days or weeks of someone’s life. Many associate healthcare planning with hospice, dying, or end of life – this is far too narrow and can cause both patients and physicians to avoid the topic altogether. While planning for these items is important, the real focus should be on helping people live better for the many months and years that might be living with a serious illness. We need to talk about and plan for care proactively from the time a person gets a diagnosis of cancer, dementia, cirrhosis, or kidney disease. My grandfather lived for over a decade with dementia. He went through the process of actively dying in 4 days. I am quite certain that he would have been more interested in talking about what his life would be like for that last decade over his last 96 hours.
Technology alone is not the solution: There is a tremendous emphasis on digital solutions to chronic problems in healthcare delivery: electronic medical records, patient engagement apps, total cost of care analytics and so on. We even see organizations looking at “end of life” care choices purely through technology. Perhaps this will happen in 10 or 20 years with unforeseen advancements. But technology alone will not get us out of the current mess: right now we spend an enormous amount of hope, time, love, and money on care that is unwanted, unnecessary, or non-beneficial. Technology can be a powerful enabler to drive human connections, however. Iris uses it to identify patients and families that need these conversations using complicated algorithms, connect people over great distances through telehealth platforms, and enhance education through online resources and support tools. But the importance of the human element persists and trumps everything else. The essential piece of helping people feel safe, secure, and supported in the planning process are healthcare professionals that understand the medical evidence but are masters in the art of the difficult-to-navigate healthcare planning discussion.