One of the most painful things a physician can hear from family members of a hospitalized, critically ill patient is, “Gosh, we never talked about anything like this!” It is not uncommon that patients, their families and professional care providers have not discussed goals of care regarding end-of-life until a crisis point occurs, typically when patients can no longer speak for themselves.
These conversations tend to be delayed because of our natural aversion to talking about the very real fact that we will die. Thinking about mortality can be anxiety-provoking for many people but if we open the door to accepting that death, as life, is a natural process, we maximize the possibility that end-of-life experiences will match our values, preferences and goals. Our country is culturally averse to talking about end-of-life issues, yet we are the first generation that is empowered to actually do something about it. But the conversations need to happen well before a crisis so that they become a normal part of living.
April 16 is National Healthcare Decisions Day (NHDD), founded in 2008 by Nathan Kottkamp, a Virginia-based lawyer who dedicates his time and experience to public health issues. NHDD educates both the public and healthcare providers about the importance of advance care planning (ACP) and encourages facilities to respect those wishes, whatever they may be.
Kottkamp chose April 16, the day after Tax Day, as NHDD because, as Ben Franklin said, two things in life are certain — death and taxes.
Contrary to popular belief, ACP is not only for the elderly and the ill. Every adult 18-years and up should have a plan because accidents or illnesses can happen at any age. Kottkamp was just 20 years old when he completed his advance directive (AD). He was motivated to complete his AD because of three famous cases regarding healthcare decision-making involving women in their 20s: Karen Ann Quinlan, Nancy Cruzan and Terri Schiavo.
In my experience caring for critically ill patients, I believe a life well-lived deserves the best ending possible, which doesn't always mean using new technologies or advanced medical interventions, but it should include one simple thing: having the conversation. It might be the most important conversation you ever have. Revisit your decision time-to-time as you will likely change your mind and goals over time.
While a completed, written document is desired, the key step is appointing a durable power of attorney (POA) for healthcare, sometimes called a healthcare proxy, surrogate or agent. That person (the agent) is given the responsibility to make decisions for an individual should they be unable to do so themselves. The agent must know the principal's wishes, values and goals. The agent must also be strong, unflappable and able to honor the patient's wishes whether they agree with those wishes or not. The agent does not need to be a person's spouse or another family member. The agent can be a trusted friend.
Naming a POA for healthcare does not take any rights away from the individual, because the POA is only activated if a person can't speak for themselves. At that point, the healthcare agent acts for them in terms of ordering procedures or indicating if certain procedures should not be given.
The COVID-19 pandemic has shown that the future can change in a second. It has highlighted the importance of having plans in place to navigate the unknown. Kottkamp said, “The hope is the pandemic will wake people up that health is unpredictable and that every adult should have an ACP, even if it is just to identify an appropriate decision-maker. It is hard to know (yet) what people have done in response to the pandemic. I can, however, report that I've been involved on the legal side of a few Covid-related situations in which no ACP had been prepared before Covid had hit, but still, no ACP before a patient went on a ventilator. That is a system failure on multiple levels.”
We can help mitigate these system failures by talking to our loved ones and our healthcare providers as a shared responsibility — addressing our understanding of our illness, our fears or worries for the future, our priorities and goals, what outcomes are unacceptable, what sacrifices we are willing to accept — and contemplating, what does a good day look like.
There are tools available that can help patients and families: the Prepare for Your Care program; materials from the Conversation Project, Respecting Choices and Caring Conversations; videos about health care decisions at ACP Decisions and Realities of Advanced Medical Interventions.
Also, two excellent books are “Preparing for A Better End” and “The ICU Guide for Families.”
As a community, we are ahead of some parts of the country on Advance Care Planning. Please use NHDD as the catalyst to keep moving the needle — let's “have the conversation."
Dr. Lombard, now retired, practiced as a nephrologist in Whatcom County for nearly 40 years. He is past medical director for the Mount Baker Kidney Center.