Last week I had the privilege of being the keynote speaker at the Washington End of Life Consensus Coalition annual conference. The room was filled with palliative care and hospice specialists – physicians and social workers, nurses and chaplains – each of whom cares for patients living with life-threatening illnesses. I was invited to offer the family caregiver’s perspective, to convey the lessons I learned while supporting my parents through the end of their lives. Because I have spent more than 25 years in health care and we cared for my father and mother living with cancer and Alzheimer’s disease, respectively, at home, my talks often create a bridge between the way the medical system intervenes with patients and the reality of their home lives. I had planned to deliver my usual speech about navigating the aging journey but for this audience, I had another mission: I wanted these clinicians to feel the experience of being the family caregiver, bouncing from specialist to specialist,challenged to make medical decisions regarding chemotherapy and surgery, feeding tubes and ventilation, without the benefit of consistent medical counsel. For when my parents were ill, palliative care specialists were not prevalent in hospital or medical settings.
What is palliative care? It is a team approach for caring for a seriously ill patient that focuses on alleviating symptoms such as pain, nausea and fatigue while helping patients and their families understand treatment choices and options. You can learn more here. Nurses and physicians, pharmacists and others trained in palliative care practices are a useful resource for family members struggling to understand the arc of an illness and how to best care for their loved one. This specialty is relatively new, but one that you should inquire about as your parents and other loved ones navigate the later stages of their aging journey.
I began my speech by introducing the clinicians to my family and I did my usual gig with good humor, highlighting the legal, financial, familial and housing decisions that challenge families as their parents age. Then I circled back to the medical system and my personal story. For the first time, in nearly five years of public speaking, I decided to share my parents’ end of life experiences publicly, knowing that this audience deals with life and death decisions daily. I read two pages from Chapter 20 of my book, Don’t Give Up on Me!, conveying a conversation I had with a physician regarding how Alzheimer’s disease advances and the decisions I might have to make on my mother’s behalf. I noted that the conversation took place nearly three years before my mother passed away and reminded them that preparation for the end of life doesn’t begin when someone is literally at the end. I proceeded to share anecdotes from the time of that conversation through the end of her life and I watched as the room grew increasingly more quiet and still. I tempered the anecdotes with humor, creating vivid imagery, juxtaposing preparation for a Valentines Day party for 30 six-year olds with a testy telephone conversation with my mother’s physician regarding potential surgery. Slowly I brought them to the end of her life and her last ambulance ride to the hospital with the EMTs who honored her do-not-recussitate order only to encounter the emergency room physician who did not, who placed my mother, against her wishes, on a ventilator. I stopped my storytelling there and in the brief silence that followed, the audience responded in a way that I did not anticipate.
We know that clinicians are trained to separate their emotions from their clinical judgment, allowing them to work daily surrounded by disease, pain, sorrow and death. Without that cognitive ability to compartmentalize their feelings, to objectify their patients somewhat, they would be unable to function optimally. Yet, at the end of my story, these highly trained clinicians did something I did not expect. They cried.
Over the years I’ve developed great affection for health care professionals. Admittedly, a few are callous and inattentive, but the majority work long hours under difficult circumstances to provide the best possible care for their patients. Helping families understand how to interact with the medical system, to fill in knowledge gaps about insurance and disease, advance directives and health maintenance is the reason I founded Circle of Life Partners. Most of the time, I speak before families and professionals outside the healthcare system. But sometimes, when the medical community invites me to join them, I use my experience and yours to elevate the voice and concerns of families, to showcase the gaps in care that only they can close.
Following my speech, a geriatrician gave me the greatest compliment when he said, “You reminded all of us that when a patient receives a diagnosis of cancer or Alzheimer’s or any life-threatening illness, the entire family receives the same diagnosis.” That’s so true.
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