Gustavo Ferrer - Graceful Exit: How to Advocate Effectively, Take Care of Yourself, and Be Present for the Death of a Loved One

To my beloved patients,

from whom I continue to glean

wisdom and knowledge

We may not ever understand why we suffer or be able to control the forces that cause our suffering, but we can have a lot to say about what the suffering does to us and what sort of people we become because of it. Pain makes some people bitter and envious. It makes others sensitive and compassionate. It is the result, not the cause, of pain that makes some experiences of pain meaningful and others empty and destructive.

HAROLD KUSHNER

When Bad Things Happen to Good People

Contents

Preface

Death Is Not Failure

Every day, at least one of my patients dies. Although that may not sound like a track record I should admit to, its actually considered normal. Most of my practice as a critical care physician and pulmonologist working in the intensive care unit (ICU) in the Miami area involves serving those who are in their final weeks or even days. Although my team has succeeded in dropping the mortality rate below the national rates for long-term critical care patients, every day Im on duty, I witness not only the loss of life but the familial aftermaththe shock, the tears, the screams, and even the cursing. Mostly, I see the confusion.

Do you want me to call someone? is usually my first question. Some people have me phone an estranged sibling. Others have me contact the deceaseds spouse or another who is close and involved and often highly emotional. Almost everyone has me call someone. I am more than willing to do it. My firm belief is that empathy at the core of health care requires this action. I wouldnt have it any other way.

I didnt always feel this way. In fact, when a patient died, I used to feel like a failure. My training in Cuba taught me that medicine was the answer, and if a patient died, it was because I did not do my job.

Ive since learned that death is a part of life, and the biggest failure is not death, but refusing to get involved in the process of dying. Ive learned that dying ultimately involves the living, and so I make a point to help those who will soon be left behind make difficult end-of-life decisions, and afterward, I lend a hand when they are too full of grief to make a phone call.

I learned the importance of getting involved through the many family members who have entrusted me with the care of their loved one. Some of my lessons were hard, even shameful. Like when I was a young physician and Doris, a gracious, intelligent, and peaceful woman in her eighties, sat me down, as if I were her son. She gently counseled me about how devastating it was to her and her daughter when I, in my haste, jumped to false conclusions. Or when Margarita, after learning that her husband of forty-five years had died, looked at me, her eyes filled with utter confusion. Up until then, I hadnt taken much notice of what happened after a patient died. But Margarita triggered something in me.

Ever since then, Ive been asking family members whether they want me to call someone. I keep making this small gesture because Ive found that it goes a long way. These lessons and many, many more have left their mark on me over the past twenty years. And so now my practice is just as much about helping a patients family members and friends as it is about treating the patient.

In some ways, this portion of my training came early, during the 1970s and 1980s, when I was growing up in Cuba. We Cubans are a passionate people. Family is first. The small farming community where I grew up lacked the economic resources and technology needed to prolong life. When, at the age of 102, my grandfather was dying of pneumonia, we did what we could to make him comfortable and accepted that death was imminent. We didnt have to consider whether we should rush him to the emergency department, increase his medication, or administer cardiopulmonary resuscitation (CPR). Without those distractions, we were present enough to feel our pain and lovingly tend to Grandfather. The family gathered, so about fifteen of us were around to help and support one another, as humans throughout the world have done throughout time.

Yet this is in sharp contrast to todays environment, especially in industrialized countries, where technology can dominate in end-of-life care and dramatically alter the experience. Ive witnessed many family members instinctively, and sometimes out of guilt, make rash decisions to keep an elderly loved one alive by demanding certain procedures, regardless of how painful or futile they might be for the patient. CPR keeps the ninety-year-old with stage 4 lung cancer breathing, but its painful, as it can break ribs and damage muscles and skin, causing stabbing chest pain. Pain and bruises result from the needles needed to access veins. A feeding tube inserted through the mouth or nose can stimulate the gag reflex and trigger vomiting. These scenarios are commonplace, almost everyday occurrences in almost every hospital in America. Although a blessing on many fronts, advancements in medicine can make acceptance of the inevitable harder for everyone, including ICU medical staff, who cite dealing with family members as the number one reason for burnout.

And that is how I came to write this book. We live in the Information Age, but no one seems to know what to do before, during, or after a family member becomes terminally ill, whether with cancer, heart disease, or dementia. As the technology behind health care keeps improving, our notion of how to interact with it on a human level is at times nonexistent. We are in uncharted territory. Families are torn. Doing what is available to them translates into doing what is right. But this is not always the case. This is only one of the reasons families need help from the clinicians and staff who serve the patient. I and every other ICU clinician repeatedly witness the same scenarios. We can almost predict when conflict will erupt among family members wrought with grief. We sense when emotions will trigger irrational decisions or behavior. Families have the medical facts, the advice of doctors and other medical staff, and sometimes family and friends, yet they hold on to the belief that twenty-first-century medicine will pull their loved one through.

Because of what I witness through my practice, I feel compelled to communicate three important messages: First, death is not failure. Aggressively treating the patient who has a chance of surviving is our responsibility but so is recognizing when the patient is no longer helped by modern medicine. Pretending otherwise is hubris.

Second, family members of a dying patient deserve guidance, respect, and compassion. For many people, dying is no longer simple, like it was for my grandfather. The impact of a familys decisions is more complicated than it was even thirty years ago. Clinicians know the drill. Most family members do not. Hospital staff has a responsibility to help people put it all into perspective.

Lastly, the behaviors and decisions of family members and medical staff play a large role in determining whether a patient leaves this world with grace and dignity. For the sake of the patient, we must all allow our moral compass to guide us, to be fully human during this most spiritual of experiences.

I see death more often than most people, but death is a part of everyones life at one point or another. And when it touches us, it has the power to change us, like it did me, regardless of which side of the bed were sitting on.