As an ICU doctor, I often care for patients who can no longer speak for themselves. Whether their illness came on gradually or occurred without warning, they lie in bed without a voice. Their family, if they have one, must take on the role of surrogate decision-makers. This is a tremendous responsibility and can cause upheaval and rifts in even the most functional of families.
Here are some common patterns I have witnessed that compromise the patient’s well-being.
In my experience each of these patterns is more likely to occur when the hard work of planning has not been done. The medical literature shows us that the passing of a loved one can cause a host of issues in those still living. Data demonstrates increased risk for the bereaved of medical problems, anxiety and depression, even financial ruin. And while I have not seen research on this, I imagine that those families who have endured such conflicts can suffer disruption for many years to come.
Yet a small amount of preparation can make a big difference, even save a family.
My first recommendation when complexities arise for a hospitalized patient is to call for support from a Palliative Care team. We know from surveys that families with palliative care—which aims to keep the patient at the center of the conversation and offers extensive support to the family—have better medical and psychological outcomes for families in the long run.
Even better than calling for a Palliative Care consult late in the game is to lay the groundwork early on, before the patients are unable to speak for themselves. My recommended steps below will help to keep the patient at the center of decision-making at all times:
In summary, there are many things that can go wrong around critical illness, even in families that are communicative and get along well. But the good news is that you can mitigate, and sometimes even prevent these occurrences with some preparation. A good place to start is Prepareforyourcare.org, a website that takes you step by step through the points above and helps you to pull together and then print out a document with your preferences that can help you fill out a legal advance directive.
You can care best for yourself, and for the ones you love, with some advance preparation. In this way even your final moments will be aligned with your values.