Talking With Loved Ones About How They Want to Die

'The Conversation' author says: make sure you know what they'd prefer

(Editor's note: The following is an excerpt from a new book, The Conversation: A Revolutionary Plan for End-of-Life Care, by Dr. Angelo E. Volandes. In it, he describes what he calls the "unspoken dark side of American medicine – keeping patients alive at any price.")

It was a blustery March morning at the crack of dawn, and my medical team was refueling with ample cups of coffee in the hospital cafeteria before reviewing our list of patients. Just as I took a scalding sip, the overhead speaker blared.

“Code Blue, Greenberg Five! Code Blue, Greenberg Five!”

Greenberg 5 was our floor in the hospital…. I suspected the code might be Lillian Badakian. She was a 32-year-old mother of three with widely metastatic breast cancer. It had not responded to a radical mastectomy, radiotherapy, or numerous rounds of chemotherapy. In short, the skill and dedication of the nurses and doctors might get her through the Code Blue, but Lillian would almost certainly be dead within a few weeks, if not sooner….

When we reached Lillian’s room, her husband, Raffi, was pacing outside in the hall. As I entered I couldn’t help but notice an old Christmas photo card pinned to the wall. Lillian, much healthier at the time, and Raffi had their arms around their three smiling sons. The whole family was festooned in Santa hats. I pulled my gaze away from that proof of the family’s happier times and focused on Lillian’s heart monitor and the nurses gathered around her hospital bed.

(MORE: Learning to Live While Dying)

The staff had already started CPR. One of the burly male nurses was leaning over Lillian performing chest compressions. “One, two, three . . .” he counted as sweat bloomed on his forehead. Another nurse was pumping air into Lillian’s lungs with a green breathing bag. I told one of the younger doctors at the foot of the bed to take charge and run the code.

“Please continue chest compressions,” the resident said, “and let’s secure an airway. Get the heart monitor and pads ready in case we need to shock a V-fib arrest. Let’s make sure we have two peripheral IVs and get the central line kit ready. Get me one of epi ready to go.” …

Trying Everything

I had only just met Lillian Badakian the previous day. In terrible pain and with virtually no statistical chance for survival beyond a few weeks or so, Lillian had reviewed her options for medical care and had chosen to press on with all available interventions in a bid to have one last Easter — now a seemingly interminable one month away — with her husband and children. In my heart of hearts, I knew then as we talked that there would be no Hollywood ending to Lillian’s last wish. Now, even sooner than I had feared, I was a passive witness to her premature death from the same breast cancer that had already killed her mother, grandmother, and great-grandmother. Standing by her bed amid the orchestrated chaos of the Code Blue as Lillian began to slip away, I could not help but reflect on my own life’s journey to this place.

(MORE: Atul Gawande's 5 Questions to Ask at Life's End)

Despite its focus on the 21st-century American approach to dying, the true subject of this book is life, because a life well lived deserves a good ending. When asked where and how they want to spend their last few months, nearly 80 percent of Americans respond that they want to be at home with family and friends, free from the institutional grip of hospitals and nursing homes, and in relative comfort. However, only 24 percent of Americans older than 65 die at home; 63 percent die in hospitals or nursing homes, sometimes tethered to machines, and often in pain. The reasons for this discrepancy between the type of medical care people want at the end of life and the type of medical care they actually receive are many, and include hospital culture, medical reimbursement schemes, and legal concerns; but the discrepancy is largely due to the failure of doctors to have discussions with patients about how to live life’s final chapter. This is one of the most important problems facing American medicine today.

What We've Neglected

Despite the billions of dollars that are invested in new technologies in America’s finest hospitals, the most important intervention in medicine today happens to be its least technological: timely and comprehensive discussions with patients as they near death….
People simply don’t know death in its 21st-century guise. Fifty years ago, most people died at home surrounded by their loved ones; today, most deaths occur in health care institutions where patients are surrounded by strangers…. Much of the medical care that is delivered at the end of life to patients in the advanced stages of a disease would largely be rejected if patients and families had a better sense of what it involved. When we reach for the latest and greatest in medical interventions without understanding whether the benefits are marginal or simply prolong the suffering at the end of life, the result is that many of us die today with tubes emanating from every orifice and cracked ribs and punctured lungs from the rigors of CPR, surrounded by people we’ve never met but who will likely be the last ones we see in this world….

(MORE: Why Infection May Be a Good Way to Die)

Among the questions that all of us, as future patients, need to consider and discuss with family, close friends and our doctors are the following:
●  What kinds of things are important to you in your life?
●  If you were not able to do the activities you enjoy, are there any medical treatments that would be too much?
●  What fears do you have about getting sick or medical care?
●  Do you have any spiritual, religious, philosophical or cultural beliefs that guide you when you make medical decisions?
●  If you had to choose between living longer or having a higher quality of life, which would you pick?
●  How important is it for you to be at home when you die?

What Is Right for You?
Some people will leave end-of-life decisions to their personal physicians and other experts, without questioning them. Some, like Lillian Badakian, will choose to pursue any possible remedy…. Others will opt for hospice care to ensure comfort, a sense of community, and access to family and friends as the end approaches. The success of this essential conversation about end-of-life care lies not in the individual path chosen but rather in the active and fully informed participation of the patient and family members. In other words, these discussions empower patients to receive whatever end-of-life medical care they wish.
The Conversation explores the lives of seven seriously ill patients who experienced very different deaths, each hinging on whether or not a doctor had a discussion with the patient before he or she could no longer make a decision…. It is my profound hope that this book galvanizes patients, families and doctors to establish a new standard of care.

Dr. Angelo E. Volandes is a physician and researcher at Harvard Medical School. He is also co-founder of Advance Care Planning Decisions, a nonprofit organization devoted to encouraging The Conversation through the use of videos. Visit him online at www.AngeloVolandes.com.

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