It’s a busy day in the emergency room when an elderly lady with advanced dementia and pneumonia is wheeled in by ambulance. She is at death’s door. I introduce myself to her two daughters as the emergency physician and notify them of their mother’s critical condition.
“To keep her alive,” I told them, “she requires a ventilator.” One daughter responded, “Yes, do everything; I don’t want to lose my mother.” The other daughter said, “Mom told me that, if it’s her time, she would never want to be on a ventilator.”
This typical nightmare situation could likely have been avoided by having a conversation about life’s end.
As an emergency physician for 40 years, I have been trained to aggressively treat patients, including those who are terminally ill. Over the past several years, I realized that this mindset is misguided. In many cases, such intensive and invasive care is not only pointless, it borders on inhumane. Providing comfort care for end-of-life patients instead is often far better suited to ensuring a dignified and peaceful path for patients and their families at this life stage.
I turn 70 this year and I am constantly reminded of my own mortality by working in the ER, reading obituaries in the Arizona Republic and going to Yizkor services at Yom Kippur. The COVID-19 pandemic was the most sobering reminder of our mortality most of us have witnessed. I recall recently visiting my mother’s grave at Mount Sinai Cemetery and walking around. So many did not even make it to 60.
I advocate for more education and enlightenment on life's end for the medical community and patients and families. As doctors, we are wired to see death as the ultimate enemy, even in the face of immense and intolerable suffering on the part of our patients and their loved ones. Far too many of us seem to forget that our lives have a beginning, a middle and an end. We have to do better about encouraging our patients and their families to have a difficult conversation informing people of all their treatment options, including comfort care, so that they can choose what provides them the most dignity.
Doctors are not gods. We cannot reverse the aging process. Most of what we do is disease management rather than cure. Many physicians are not proficient in having end-of-life discussions with patients. It is unacceptable that we doctors often have a double standard. Most physicians wish to spend their final days at home surrounded by loved ones, and yet many of our patients die in the intensive care unit receiving aggressive but futile care. We are in need of a culture change that is thankfully starting to happen.
During my mother‘s five-year journey with Alzheimer’s disease, she went from a delightful, energetic and bright 75-year-old to a person just staring into space, unable to recognize me, unable to feed herself and incontinent. I started writing about life's end in “Saving Lives, Saving Dignity” with my cousin, Dr. Robert Shapiro, while she was still alive, and it was cathartic.
I had an epiphany while I held her hand four months before she died. If, five years earlier, I held a crystal ball in front of her showing what she would look like on that day, she would have said, “Oh no! Please push me off a cliff if that happens!”
Dignity is closely intertwined with quality of life. So many life-limiting diseases strip us of our dignity and independence. Most of us would not be OK with our spouses and children forced to care for us if diagnosed with an incurable illness. Most of us would not want to be a burden on our families.
While Judaism teaches that honoring and taking care of our parents is a mitzvah that many of us would do with unconditional love, I know that my mother would never have wanted to be a burden on her two sons. In turn, I would not want to be a burden on my amazing triplets.
This should prompt us to have end-of-life conversations and memorialize our advanced directives. Being proactive about this is essential. Sweeping it under the rug will only come back to make your life, and your loved ones’ lives, unnecessarily complicated and painful. Before deciding that you are in favor of going on a ventilator or dialysis or receiving chemotherapy for advanced stage IV cancer, do your due diligence. Ask your doctors questions, go online and speak to other patients and families.
As a baby boomer, I worry a great deal about being a part of a health care system that is not sustainable. Medicare dollars spent in the last few months of life are astronomical. We owe it to our children and grandchildren not to bankrupt the system. We can make a difference by considering comfort care at life’s end.
My friends, family and colleagues have always seen me as a bit of a meshuggeneh and a jokester. Many were amazed that I wrote a book with such a serious and solemn message, but if just a handful of readers find our book helpful, I have achieved my mission. My mom would be smiling, and her journey with Alzheimer’s would not have been in vain. JN
Alan G. Molk is a board-certified emergency physician in Phoenix. His book “Saving Lives, Saving Dignity” is available on Amazon, and his website is savingdignity.com.