Death. Unfortunately, in my line of work, it’s part of my daily life. If you’ve had an appointment with my dad anytime in the past year, you know that I recently shifted gears from an Emergency residency to a Critical Care fellowship. Having spent the last several years in the Emergency Department (ED), I’d forgotten what a different beast death is in the Intensive Care Unit (ICU). In the ED, death is swift, often unexpected and sometimes merciful. ICU deaths however, are frequently prolonged, often excruciatingly so – and in my experience, much more slow, painful experiences for everyone involved.
In the ICU, I often feel like I’m prolonging death and suffering rather than restoring life and vitality. My patients often have more organ systems that have failed than ones still functioning; death is being kept at bay by multiple forms or life support; ventilators, vasopressors, dialysis, ECMO (a form of partial cardiopulmonary bypass), etc. Very rarely is the person who emerges from that cloud of clinical contrivances the same that went into it. More commonly, they are frail shells of their former selves, often without all their faculties, and now condemned to the all-too-common narrative of discharge to rehab facility, where they will continue to linger until they incur one in a long line of complications and end up back in the hospital, often to do the whole thing all over again.
Now, you may say this is a very bleak representative of what the ICU is. Certainly, there are success stories, and not everyone is condemned to this fate. While that is true, those cases are not the impetus behind my writing this column. One of the reasons even frankly futile cases end up languishing on life support for days or months on end is their family’s inability to make complex medical decisions for the patient, which is why Advanced Directives (ADRs) are so important.
While it can be an uncomfortable or awkward discussion for many people to have, it is absolutely imperative that you think about and discuss your goals and wishes before you or your loved one end up in an unfortunate, unforeseen situation. Unless you’ve had a sick family member, or happen to work in health care, you likely have never heard of ADRs. Even those who have may not know everything that can go into them.
And while deciding if you want a breathing tube or CPR are certainly key decisions (described in the “DNR/DNI” portion of an ADR), advanced directives can go way beyond just that. You can make yours as personal and intricate as you want; e.g., blood transfusions, dialysis, feeding methods, surgeries, etc., etc. Or you can stick to the very basic DNR decision. There is a lot to think about and the time to do it is now. Making these choices by no means locks you into anything; you can change, update or rescind any decision at any time.
But where do you even start? Your primary care doctor is a good first stop. He/she likely has a social worker or specialized nurse who can help you through the steps or provide you with worksheets or information pamphlets. Or this person may refer you to a Palliative Care colleague. Family lawyers can be good non-medical resources to assist you through the process as well. Or you can do some research on your own—www.caringinfo.org and theconversationproject.org are both excellent resources.