Table Of ContentTo 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 Death Is Not Failure
PREFACE
INTRODUCTION The New Rules of Dying
1 Getting Everyone on the Same Page
2 Letting Head and Heart Guide You Through the Hardest Decisions
3 Your Best Ally
Working with the Medical Team
4 What to Do When Your Loved One Still Has Some Time
Hospice, Palliative Care, Long-Term Life Support, and Other Considerations
5 Who Pays?
Medicare, Spending Down, Long-Term Care Policies, and More
6 Legacies and Regrets
The Importance of Having Final Conversations about Life
7 Grieving, Letting Go, and Acceptance
Lessons from the Orinoco
8 Post-Death Paperwork
Funerals, Taxes, Passwords, and More
9 Planning an Event You Don’t Want to Attend
EPILOGUE For Every Season
Acknowledgments
Notes
About the Author
About Sounds True
Copyright
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, it’s 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 I’m
on duty, I witness not only the loss of life but the familial aftermath—the 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
deceased’s 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
wouldn’t have it any other way.
I didn’t 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.
I’ve 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. I’ve 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 hadn’t taken much
notice of what happened after a patient died. But Margarita triggered something
in me.
Ever since then, I’ve been asking family members whether they want me to
call someone. I keep making this small gesture because I’ve 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
patient’s 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 didn’t 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 today’s environment, especially in
industrialized countries, where technology can dominate in end-of-life care and
dramatically alter the experience. I’ve 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 it’s 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 family’s 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 everyone’s 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 we’re sitting on.
