A few weeks ago, I had the privilege of attending an Angel MedFlight sponsored Case Management Society of America (CMSA) dinner in Tampa, Florida. Our speaker on this evening was Barbara Turner, MSN, RN, CCM, Assistant Director of the Post-Acute Programs Case Management Department for Tampa General Hospital.
Barbara’s topic centered around aging and dying, both of which “are the two big unfixables” according to surgeon and public health journalist, Dr. Atul Gawande of Brigham and Women’s Hospital & Medical Center in Boston, Massachusetts. The message was powerful, emotional and thought-provoking.
1. I never thought about the questions that keep case managers up at night.
Barbara started the evening by showing Being Mortal, the PBS FRONTLINE Documentary to the 65 case managers in attendance. In this documentary, Dr. Gawande shares how clinicians often question themselves when their patient enters into end-life, “Was there something I missed?”, “Was there anything else I could have done?” The emotion behind these questions really struck me.
Clinicians (to include case managers) are human beings … caring human beings. They see life, and death entirely differently than a lay-person like myself. That’s because they see both routinely throughout any given work day. When it comes to life and death Dr. Gawande states, “Among the most uncomfortable difficulties [for clinicians] are grappling with those cases where they couldn’t solve the problem.”
2. The final stage of life is just as important.
This left me with my own unanswered question. How do clinicians start candid conversations about end-life with patients and their families? We can likely agree, there is no natural moment for these types of conversations, but I would venture a guess that waiting until the final week of one’s life is too late.
Dr. Gawande acknowledges that in the medical profession, dying is a difficult choice to accept because clinicians are trained to save lives. He found “we as human beings desire to live for something bigger than ourselves.” His discovery was what matters most to most people is “how their story comes to a close.” That’s why he began asking his patients, “What matters to you now?”
Hospice and palliative-care specialists understand listening is critical, perhaps more so than talking. Who doesn’t want to be heard? My thoughts took me back a few years when my mother was diagnosed with stage IV lung cancer. From point of diagnosis to her final breath, her time was short, just four and a half months. Over the course of those months she had the opportunity to talk best case and worst case while her Oncologist, and my family, listened. As challenging as this was for my family, we sensed her final stage of life was just as important as the 76 years she had lived so beautifully and courageously.
3. The only thing that’s certain is we must start the conversation.
In the August 2010 issue of The New Yorker, Dr. Gawande contributed an article entitled, Letting Go. In it he speaks to the heartache of not taking the time to say, “It’s O.K.,” or “I’m sorry,” or “I love you” as the end nears. Terminal patients have a sensing that they are terminal, as do, oftentimes, their family and friends.
In today’s technologically and medically advanced world, death for most people comes after the multiple debilities of old age or after a long medical struggle with an incurable condition. Dr. Gawande explains it best: “Death is certain, but the timing isn’t.” It’s just so hard to let go.
How do we now position ourselves to converse on “how to die?” This conversation is avoided, primarily because we feel ill-prepared to confront the mortality being faced by the patient – our loved one, whether family or friend. “Why should a patient, or their family members, enter into life’s final stage unprepared?” asks Dr. Atul Gawande.
Stephen Jay Gould, an American paleontologist, evolutionary biologist, and historian of science, once wrote, “I prefer the more martial view that death is the ultimate enemy—and I find nothing reproachable in those who rage mightily against the dying of the light.” In this he was referencing his own battle with peritoneal mesothelioma.
Diagnosed in 1982, Gould was stunned by his discovery that “mesothelioma is incurable, with a median mortality of only eight months after discovery.” He chose to think differently and lived another 20 years. According to Dr. Gawande, this possibility to think differently to achieve a longer life expectancy may not be the norm, but it can make a real difference for patients while acknowledging and understanding all of the possible outcomes.
With my mother, we hoped for the best and prepared for the not-so-best. My family and I opened the door for “end-life” conversation which resulted in my mother having a terrific hospice team and the ability to remain at home. She had the highest possible quality of life all while suffering a bit less, being more capable physically of getting around, and being better able to interact with family and friends during her final days. She passed in peace and in control of her situation, which ultimately spared both her and our family unnecessary anguish.
So how do you start this type of conversation?
Crucial questions in end-life conversations may include:
- Do you want to be resuscitated if your heart stops?
- Are you open to more aggressive treatments such as intubation and mechanical ventilation?
- Are you open to taking antibiotics?
- If you can’t eat on your own would you consider tube or intravenous feeding?
However, just as crucial are conversations resulting in healing of the heart, forgiveness, a better understanding of others, caring for financial matters and more.
From Barbara Turner’s showing of Being Mortal and the ensuing discussion, I took away a deeper appreciation for the extraordinary work our partners at healthcare providers do every day. The care with which you provide your patients, and ultimately their families, is nothing short of remarkable.
Healthcare providers, and of course, case managers are a true inspiration! Their strength of character, level of sensitivity, the depth and breadth of their heart, their ability to hear their patients and provide them with space to close their stories with grace and dignity. I’m proud to support case managers and their patients by being a part of an organization that reunites families with air medical transport of patients for palliative care.
We’re proud to introduce Karen Marie Derr. Karen is the Business Development Manager at Angel MedFlight World Wide Air Ambulance, heading up relationship management across the country. She has her Bachelors in Communications and an Executive MBA with an emphasis in Leadership. For the last two decades, she has worked in Marketing and Relationship Management, in addition to teaching college-level Marketing, Business and Management courses.