Thinking about uncomfortable things and considering options in making difficult and consequential decisions is…let’s face it…best left until tomorrow. Unless it is not.
In the pre-COVID times, I was a regular at various Councils on Aging, Senior Centers, professional associations, Rotary Clubs, and more, presenting the vital importance of “owning your own healthcare.” Many people would gladly abdicate that decision to their Primary Care Physician.
True enough, our healthcare providers are our advisors. They explain our options when a diagnosis is revealed or when a condition worsens. As the patient, we are the decision-maker. We decide what we want, when, and for how long. Gone are the days when we should be saying “because my doctor told me to.”
Dr. Atul Gawande, practicing surgeon at Boston’s Brigham and Women’s Hospital and author of the well-known bestseller Being Mortal, has emerged as an influential leader in the “be informed, know your options, and make your own decisions” movement in today’s healthcare. In his book, PBS documentary, and speaking engagements, Dr. Gawande reveals how unprepared he was to share information with his patients that revealed unsuccessful treatment efforts or diagnoses deemed terminal.
These aren’t pleasant topics to spend time on and are often allocated to the bottom of the pile. This works until the fateful day that decisions need to be made, and none have been. We need to be having these conversations well ahead of time.
A 100-year-old man falls at home and fractures his pelvis. While at rehab for the fracture, he contracted COVID-19 and developed pneumonia afterward. He recovers enough to go home but continues with breathing difficulties, inability to eat, and extreme weakness.
Did I mention that he was a tough-as-nails New Englander? A fighter, he wanted all available medical treatment for anything that came his way. He died peacefully but shortly thereafter, emergency personnel were mandated to perform full resuscitation because of his documentation. He was never made fully aware of the likelihood that this intervention would or would not be successful. Decisions need to be made at some point, maybe at age 99, 88, 77, or tragically even at 44.
The Health Care Proxy Document(available online at HonoringChoicesMass.com) is a tool that allows you to select trusted others to make medical decisions for you in the event you are unable to make them on your own. You may choose a primary “agent” and a secondary “agent” who can lawfully work with your medical team and direct your care following your wishes. Your selection of these trusted others should accompany a detailed conversation that informs them of what you want. For example:
Your Proxy is not invoked (made official) until you are determined to be in a position where you cannot fully understand the consequences of the decisions at hand. You have chosen your agents and, hopefully, have faith in their ability to act on your behalf.
The other critical decision is intervention, or if you need to be treated with CPR (Cardio-Pulmonary Resuscitation). Many of us have seen this on various television programs. It looks swift and efficient. It’s like anything else. There is a time for it, and it has saved many lives of otherwise healthy individuals.
The decisions for us to make for ourselves and our loved ones, start with a conversation. If I were asked to be a Proxy for someone, my first question would be, “what do you want.” Often, I find that the answer to this question is “I don’t know what my options are.”
Your medical team may not bring these topics forward. If they do not, you certainly may. It starts with asking the right questions:
We have the opportunity to direct our medical intervention and create a team of trusted others to help assure that our wishes are honored.
We can certainly choose not to make these decisions ahead of time but will pay the consequence if intervention happens that we would like to avoid. Suppose we fail to commit to a plan of intervention or fail to appoint trusted others to the role of Proxy. In that case, we may well end up having decisions made for ourselves by well-meaning healthcare personnel who do not know us or what we want but have never spoken of.
Be an advocate for yourself, an elder loved one, or someone you are responsible for. Ask the hard questions, bring up the awkward topic, and in so doing, show them how much you care. Be the trailblazer for these folks. You want the truth.
You want their truth, and you are willing to be their voice.
