Fighting the Right Fight

By Craig Dresang, CEO, Yolo Hospice

Originally published in The Davis Enterprise

Over the years, I have seen many people with a terminal diagnosis say they want to fight.  Their families want them to fight too.  But I often wonder if they are fighting to live or fighting to not die.

I think of my own mother who finally received a prognosis of six months after keeping a terminal diagnosis at bay for 17 years.  She chose to keep fighting with aggressive chemotherapy coupled with huge doses of optimism.  When that stopped working, her doctor said she could continue her battle by having a shunt put into her chest and wearing a chemo-pack strapped to her waist.  “That will never happen,” she told me.  “I’ll never have a shunt put into my chest.  No more treatments.  I just want to be home.”

So I was surprised when my dad called eight weeks later to say that he took mom in for a check-up and the doctor checked her into the hospital.   My dad did not even know why she was admitted.  By the time I got to the hospital and entered my mom’s room, I could see how badly injured her spirit was from a tsunami of panic, confusion and sadness.  She started to cry like I’ve never seen her cry, and then she pulled open her gown to show me the shunt that was put into her chest.  “Look what they did to me,” she said weeping.   The doctor had unilaterally decided that mom should keep on fighting.  But we all wondered for what.  Her physician kept insisting that she would be fine.  He said, “This state she’s in is temporary.  She’ll be going home by next Tuesday.”

What followed our conversation with the doctor were seven torturous days of my mom laying in a hospital bed, transitioning into a coma and being pumped full of chemotherapy until the day before she died.  It was cold, sterile, meaningless and not what she wanted for herself or for her family.  She missed some final opportunities to do what was important to her: being intimate with my dad, having conversations with her children, seeing the sugar maple in the front yard turn fire-engine red, and listen to old Nat King Cole records. In short, she missed the opportunity to have a longer life without heroic treatments.  She, and our family, were robbed of any sense of dignity, compassion, or clarity around what was happening.

Several studies show that physicians choose less aggressive care for themselves or family members than they provide to their patients.  Physicians are also more likely to have a Do Not Resuscitate order, more likely to decline chemotherapy and other aggressive treatments that will certainly diminish quality of life, and more likely to die at home.  They recognize that there is a tipping point for every person where the burden of the treatment outweighs the burden of the disease.

I often contrast my mom’s story with the stories of many of our Yolo Hospice patients who have had conversations with their doctors and told them what’s important to them.  I’ll never forget the story that one patient told me several years ago.   She said, “I told my doctor that I’m in the driver’s seat now.  I want to continue to do things I love.  I want to garden, I want to lay in the sun, I want to share meals with my family in my own home, and I want you to design a treatment plan that allows me to do those things.”  And the doctor did.

There are two realities that we should all face.  We will all die.  And we all have the power to make some decisions today about how or where we die.

We prepare elaborately for significant life events . . .  weddings, births, final exams, vacations, graduations, retirement.  But we don’t prepare for our final journey.  More than 80 percent of Americans believe it is important to have these conversations and plan, but less than 25 percent have actually documented their wishes and developed a framework for a plan.

In a recent statewide survey of nearly 1,700 Californians, 70 percent of the respondents said they would prefer to die at home instead of a hospital or another facility.  Yet, statistics released by the State of California Department of Public Health reveal that only 32 percent of Californians actually die at home.  More than 80 percent of us will die in a hospital or nursing home.  We are more likely than not to have at least one intensive care stay during our last six months of life.  One in five of us will die in an intensive care unit (ICU) with all the medical gadgets, invasive procedures, and machinery that comes with an ICU stay.

Assuming the data is accurate, then most people are not having their wishes realized when they enter into their final days.  Chances are that we will die among strangers in a strange place.  If we, as individuals, don’t start doing something different, our final days may be chaotic rather than a peaceful journey marked by the things that are most important to us.

Yet most of us will sacrifice living for the most obscure chance of not dying.

Healthcare has evolved and made enormous advances that were unthinkable a half century ago.  Those advances gave my own mother an additional 17 years after her first cancer diagnosis.  But there have also been unintended consequences for us culturally as a result of healthcare’s evolution.  In the days before antibiotics, healthcare was primarily palliative, which means it was for comfort.  A community-based primary care physician made sure we were comfortable.  He or she provided symptom relief and what we now call psychosocial support to give the patient enough strength to make it through their illness.

Today, several decades later, our culture has developed a care model that is primarily curative and specialty driven.  All kinds of specialists take care of different body systems.  Somewhere along the way, we’ve drifted from caring for the whole person.  Instead, we are focused on attacking disease and on prolonging life.  But there is no attack strategy or care plan that can reverse the fundamental truth that we are all mortal.  There isn’t a doctor on the face of the planet who can make us immortal.

Our deep cultural bias in historic healthcare models has conditioned us to fight disease, to not give up hope, and to believe that we can diagnosis and cure everything.  In doing so, we deny our mortality.  People often say they want to do everything.  But what exactly does that mean?  Do we mean that we want to do everything to not die?  Or, do we mean that we want to do everything to live well with some quality of life until we die.

There are more than 100,000 highly skilled and compassionate doctors in California.  They are trained and rewarded for taking action, and for diagnosing and treating.  However, many of them are not trained, paid or rewarded for having a conversation about what matters most to us.  Because of this we have to make sure these conversations happen.  We have to listen and question vigorously.  We have to communicate openly and give our physicians the permission to do the same.   The result will be better care that is aligned with our goals, and the assurance that we are fighting the right fight.