Time To Call It

                                                             Time To Call It

                                                          by Marco M. Pardi

Note: All comments are appreciated, read, and responded to accordingly.  The comments sections for all previous articles have been opened for use.  I will certainly look forward to your comments.

“Whilst…[conscience] is a good guide for individual conduct, imposition of that conduct upon all [would] be an insufferable interference with everybody’s freedom of conscience.” Mohandas K. Gandhi (1869-1948) in Young India, 23 September 1926

In the first week of June, 1961, arms still sore from multiple vaccinations, I attended a neighborhood party.  Not naive enough to think it was a going away party for my 24 month assignment to Africa days away, I did my usual routine of pretending to be interested. But as I was preparing to withdraw altogether an older man came toward me with a smile and extended hand.  Dr Requa Bell, Dean of the College of Education at the nearby university, had been a friend and mentor of sorts.

“This is the last time we will be seeing each other,” he said, smiling and grasping my hand.  I knew that security clearance Background Investigations were pretty intensive.  But did he know more than I thought about my line of work and infer a certain result?  I waited for the punch line, but it never came.  Instead he simply declared he was glad I had been part of his life and wished me a fine life to come.  I later found from someone else he had recently been diagnosed with (then) inoperable cancer.

His equanimity, and his supportive thoughts for the future of others even when his own future had been foreclosed has never left me.  For some then unknown reason I felt no compulsion at the time to rush back to his home and tell him he’ll get better, there will be a cure, hang in there, fight the good fight.  I went my way.  And he went his.  In fact, his own future ended as mine was unfolding. 

I later learned that he had simply allowed the cancer to take its course.  Hospice was non-existent, and initial developments in chemo-therapy were little more than pouring in Drano and hoping the non-cancerous cells survived.  Medicine seemed unaware that cancer cells are not weak and “sick” cells; they are super cells, as evidenced by their ability to laugh off all assaults on them, endogenous or otherwise.  Chemotherapy was a burning of the house to flush out someone in a fire proof suit.

Through the many years and experiences which followed I have seen many instances wherein I wondered why we, when possible, deprive a person of the opportunity to end their own suffering when their end is clearly in sight. Why is it illegal to help, even through the provision of information in so many places?

These questions have likely been around since the first human groups developed mechanisms to control the behavior of their members.  But modern societies, distanced from their roots, grapple with them as if they arose only with the advent of technology such as intubation respirators and chemistry such as potassium hydrochloride.     

In April 1975 Karen Ann Quinlan collapsed after ingesting a number of drugs at a party.  Resuscitated twice, she was put onto mechanical ventilation until her family, in 1976, won the right to withdraw this aid.  Nevertheless, she continued in a persistent vegetative state until her death from pneumonia in 1986.  The long and costly legal battle to withdraw the respirator established legal precedents for such elective choices on the part of families, and even the legal right of patients and potential patients to legally affirm choices beforehand precluding the imposition of this technology.  However, in February 1990 Terry Schiavo’s cardiac arrest, and subsequent vegetative state from massive brain damage led to intra-familial conflict between her husband, who averred that she had (without legal documentation) expressed refusal to live under these circumstances,  and her parents, who insisted her cells must be kept alive. The State intervened on behalf of the parents.  This persisted until her death in March of 2005.

The Quinlan case, coming not long after I had initiated a college Death & Dying course, provided a continuous context for course discussions.  The Schiavo case overlapped the two years I served as an Anthropologist on the Institutional Review Board (IRB) for the Federal Centers for Disease Control & Prevention.  All Human Subjects research projects from universities and other research facilities seeking CDC support are first submitted to the IRB for in-depth scrutiny.  This includes but is not limited to: Does the protocol meet the standards of science; does it potentially contribute new knowledge; what are the risks for participants – even for those in placebo groups; are the participants fully informed of risks; and, who are the Principal Investigators.  Of course, the Hippocratic Dictum, “First, do no harm” permeated all our deliberations.  But unlike the general public’s “Uh huh” acceptance of that statement, we parsed and minced every conceivable interpretation of the concept Harm and its parameters.

Harm, when fully understood, applies to far more than just the patient.  It applies to families and caregivers, often in brutal ways.  Recent studies by the Alzheimer’s Foundation and others agree that home caretakers for Alzheimer’s patients lose an average of 6 years from their life expectancy.  Throughout the “mortgage crisis” the leading cause of mortgage default and home loss was unexpected medical bills. Families shatter under the stress and the frequent disagreements of caring for someone who, if asked without a family member present, often says they wish they could get it over with.  I’ve had these talks with patients, assuring them first of confidentiality.

Much of what passes for everyday life is simply presumed to be in the natural order of things.  Sick?  Submit to treatment. Really, really sick?  Put up a good fight.  In his best selling book, Being Mortal, Atul Gawande cites the collated results of numerous studies interviewing patients who elected often severe regimens of chemotherapy, radiation treatment, or high risk surgery subsequent to their diagnosis with a life ending condition.  Across the studies fully two thirds of the patients said they elected these procedures not of their own accord, but under pressure from others. They went further in saying, left alone they would not have so chosen.  A related figure from the Office of Management and Budget (OMB) cites that 80% of all Medicare spending occurs in the last 6 months of life.  I cite this figure not as a call for cost cutting but as an example of how far people will go, even when it means as many as two thirds of the “beneficiaries” are unwilling to follow.  

The recent episode of Brittany Maynard’s choice to end her life within the parameters allowable by law, before her disease disabled her from meeting the legal standards brought to light the Death With Dignity statutes of four U.S. States.  As expected, Right to Life and related groups rushed out materials purporting to show such legislation in the Netherlands has been abused and in fact used to kill people against their will.  Post hoc by definition, the claims may indeed point to some abuses.  But until a corpse sits up and tells me, “They killed me against my will” I will continue to treat these claims as very highly suspicious.

In a much earlier piece, “When Fantasy Becomes Law” – archived on this site, I wrote of the erosive insinuation of “religious” values into the legal code, even in a country which has in its founding documents the assertion of a “wall of separation between Church and State”.  Several ongoing issues illuminate the relentless efforts of “religious” sappers to undermine and destroy this wall, anti-Death With Dignity activists among them.  I also wrote of gaining permission to observe Alcoholics Anonymous meetings where, at one such meeting, a member refuted the trite mantra, “God doesn’t want us to die drunk” with “God wants me to die drunk, as an example to my children of what not to do.” His point, of course, was the sheer absurdity of claiming to know the will of some, by definition, unknowable entity.

Of course, history provides endless examples of people who claimed to know this will.  And this claim figures largely in arguments against assisting people in the termination of often horrendous life conditions.  As a child I heard adults refer to a disabled or chronically ill child as god’s retribution on the parents for some unspecified sin (hint: adultery).  Their authority came from biblical verses in which this god said he would visit the sins of the fathers on the second and third generations and beyond.  I wondered at how adults could believe they were the captives of such a monster.  But I was saddened for the kids, several of whom were friends of mine.

Of course, few people in our modern society openly voice such views, but they lurk beneath the rhetoric of “In God’s time……….According to his plan………..Doctors must not play God”, and on and on. Most of us, through media or stories told by others, get only brief glimpses of the reality of ongoing daily agony endured by patients – and families constrained by, in effect, theocracy based legal systems. 

I have written so often on the “thinking” involved in religiously based debates I just will not do so again here.  I will only say, as indicated in the above quote from the A.A. attendee, it takes very little to expose and reverse flawed logic – and I’m stretching to include logic and religious thinking in the same thought frame.  In our daily, “normal” lives we have room to accommodate such frivolity and fantasy.  But our lives are not the lives being lived by countless unseen and unheard patients and their families, those people down the street, that guy on You Tube.  If people supposedly have free will, we should allow them to exercise it as they wish and declare for themselves when it’s Time To Call It.