THE LAST STEP ON THE FINAL PATH


I remember one time where I “owned” the ICU at the hospital where I worked.  I was the consultant on eight patients – eight – who were severely, irreversibly brain damaged, or brain dead.  I don’t remember all the diagnoses; there were a couple of aneurysms, an intracerebral hemorrhage, hypoxic encephalopathy, a bad surgical outcome and some devastating strokes.

During my harried week, the staff were superb in using my time efficiently, shepherding me from one family group to another.  It is easy to get jaded when one often sees lethal brain damage, and such patients need to be seen a few times a day.  I tried not to become too cynical, but I don’t know how successful I was.  Taking time to talk to families is necessary, deeply appreciated but stressful, since many grieve using anger.  Nobody who is acutely grieving comprehends much of what a doctor says, so there needed to be constant repetition, and I had to bite my tongue more than once when a nurse said, “The family said you didn’t tell them anything.”  As much as I tried to talk to one designated family member, who would relay the information, that didn’t happen often.

All it took to undo a day’s work was a lung or heart consultant who told the family, “He’s doing well,” when the consultant meant the organ system.  The family didn’t hear that.

It was often the family’s first time dealing with death; it might have been my thousandth time saying, “there is nothing that can be done,” “he will not wake up,” “I am sorry.”  Doctors need to do it and to do it well.  Many do not.  Many made rounds when the family wasn’t there.  Sometimes, the nursing staff had to pressure the attending to contact a neurologist, and they often called me.

Not that it mattered, since I was busier than I wanted to be, but the time spent dealing with families was uncompensated, whereas a carotid endarterctomy, in my hospital a proven worse way of managing carotid disease than leaving it alone (I had the data), was compensated well into four figures.  We pay doctors to do procedures far more than we pay them to listen to a grieving family, say a grasping of a hand is reflex, not voluntary, see the expression of disbelief on their faces, when we give them the bad news, and hear the same stories about “some miracle” that wasn’t.  Small wonder we have expensive medical costs compared to the rest of the world, vegetative patients receiving futile care, because nobody acted when they were irreversibly brain injured and were clinically unstable.  The longer a patient lingers, the more hope a family has.  I was frequently castigated for “taking away hope,” when what I avoided was doing the worst thing of all, “giving false hope.” We pay a lot for the final months of life, but to me that statistic is misleading, because most people don’t know when they are going to die.  We do, however, pay for a lot of unnecessary care.

If we dealt with death well, we would have fewer patients lingering in a way the vast majority would say they never wanted, since the diagnosis of irreversible brain injury may often be made when the patient is clinically unstable, and support discontinued then.

If I returned to medical practice, which I won’t, I would be a far more compassionate physician than I was during the twenty years I did practice.  I thought then I was fairly good.  Now, I am not so sure. I thought I was skilled at allowing patients to die at the right time with more dignity and less stress on the families.  When it came time for my parents to die, I did everything I promised them; neither lived more than eight weeks from the time they started to die.  Ensuring quiet, quick, painless dignified deaths of my parents was the second best thing I’ve ever done in my life.

I wrote about the change in my relationship with my recently widowed father, probably the best article I will ever write.

Having lived through my parents’ deaths, I now look at life differently.  I would be far more compassionate to those who were facing death of a family member.  I would be able to tell families that it is normal to feel guilty when the time comes to stopping life support.  I could tell them how one will miss having that loved one to talk to, all the conversations one would want to have in the coming years, dreaming of the person, a decade later, the way they were in life.  I could tell families how the relationship between children and the surviving parent would change.  I would be good and far more effective.

As I enter a new phase in my life, I am considering once again dealing with death, not as a physician, who cares for a patient, but as a volunteer helping people to navigate the complexity of care and options when they have illnesses that are not going to be cured, problems that are not going away, time that may no longer be present, helping them find their own path, perhaps their last steps on that path.

In doing so, I will help myself.

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