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Time To Call It

by on June 24, 2015

                                                             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.     

 

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12 Comments
  1. diannejoydiamond permalink

    I didn’t have much say over my birth, but I certainly I hope I will have the last say regarding my death. I think a person has a pretty good idea when it’s “Time to Call It”. Fortunately, the state of
    Washington has a death with dignity law. Every once in a while I hear some religious zealots are thinking of challenging this law, a law that was endorsed by the majority of voters. If someone does NOT think it is “godly” to determine it is time to go, fine. THEY do not have to take advantage of the law. But they have no right to allow a family member or patient to linger in pain if there is a
    humane way to end that suffering.

    • Thank you, Dianne. I am glad you live in a State which is as enlightened as you describe. Of course, I hope you never find yourself in a position to use it, but as we go on in life we will surely encounter people who will have such a need. And I’m glad for them that you are there.

  2. Ray Rivers permalink

    Marco – This is an important topic and you have covered the breadth of it. We make decisions about life and death everyday. Smoking, drinking, driving dangerously, and the most innocuous examples. In the land of the requisite handgun, no one should consider they have been denied the right to ‘call it’ because we do everyday.

    When I was first diagnosed with moderately aggressive cancer, some seventeen years ago, the doc’s were negative, suggesting it had spread. I often thought about my motorcycle in that same way – it was my ticket to freedom when and if the time came. Fortunately it didn’t and I am so fortunate to have had all these years since.

    I was assigned power of attorney over my aging uncle living in Alberta. He suffered a brain hemorrhage and was rushed to hospital. By the time I could get to see him, the hospital had already obtained his final instructions, which included his request not being left on a resuscitator. Since operating on an elderly person might end up with him in a coma they refused to operate to stem the blood flow. I was too late to intervene in their decision.

    They let him die with their own inaction. I looked into his eyes as he lay there waiting for the inevitable and was sure that this was not what he had really wanted when he signed that piece of legal mumbo-jumbo. Though in his early eighties he had been an active and vibrant person and contributor to his community and family. He might have had another few years left to enhance the quality of our lives.

    So by all means go when ready but we really need to be sure. Coming to that decision, rather than doing the final act is perhaps what doesn’t get discussed enough.

    Ray

    • Thank you, Ray. The experiences of both you and your uncle provide context and depth for this discussion and that is deeply appreciated. The point you make in your first paragraph should awaken us to the reality of how we so often go through life on the basis of unquestioned assumptions – assumptions that are sometimes jarred aside by hard reality.

      I want to express my appreciation in knowing you, and in following your thoughts on this and so many other matters. Marco

  3. I’m sure each death is different. I have known several terminally ill people. Some have chosen chemotherapy to extend their life. Others have chosen no treatment. In my small sample those who chose no treatment actually lived longer than the prognosis they were given and to me seemed to have a much better quality of life. Those who chose treatment as to have more time did not get it and the quality of life was terrible. Regardless of laws, I hope we all have someone in our lives who would carry out our wishes when it is “Time to Call It”.

    • Thank you, Mary. Your comment illustrates the importance of “having the talk” with the people most likely to be in a position to act on our wishes. Of course, a legal framework, even as basic as an Advance Directive, would be a source of security and comfort for everyone involved.

  4. I have a cousin who is near dying from COPD. A few months ago, he had a severe episode, and his sister called the paramedics to take him to the hospital. Despite having an Advance Directive to the contrary (a copy of which was given to them), he was intubated while on the way to the hospital. This filled his lungs with air which, because of his condition, he could not expel, causing him a great deal of pain and distress. It was finally removed at the hospital. Needless to say, he became very angry. That it extended his life is hard to deny. He has not really complained at the extra time, but he has made it plain that he is ready for his life to end; under no circumstances are such measures to be taken again on his behalf. Let’s see if he gets his way.

    • Thank you, Rose. You raise an interesting question: Are EMTs constrained from honoring the legally expressed wishes of a patient in their care? If so, this would be an area worthy of examination and action. I wonder if you could access the Florida statutes applicable to that. I will look into it.

      • The Florida statutes concerning the Advance Directive are readily available on line. I tried reading them this morning, but having no legal or medical background, would only be hazarding a guess as to what they are saying. They don’t seem to constrain a care provider from honoring the document that is provided, but neither do they require that they do so, based on their own code of ethics. If they do not honor the directive, I believe they are required to transport the patient to a facility which is willing to do so within seven days.

        Let me know if you figure it out. It makes it seem like following the wishes expressed in the Advance Directive are optional.

      • Thanks, Rose. I suspect what you have uncovered may be part of the “religious freedom act” which allows pharmacies to refuse to fill certain prescriptions including contraceptives. Of course, it also allows discrimination against LGBT individuals. If so, I hope someone files a record breaking lawsuit.

  5. Gary permalink

    Marco, a well written piece on an important topic.

    In my younger days, when I still practiced law (note how that is expressed, I practiced it, I never mastered it) I used to read the medical malpractice cases in which perfectly healthy people went into the hospital for utterly routine operations (e.g., an appendectomy) and owing to inattention on the part of somebody in the OR ended up in a vegetative state. After a time I stopped reading them, because I thought they would make me afraid of going to the hospital. I am going for a routine operation in September and I will be completing a living will before entry to give my wife power to pull the plug just in case.

    More on topic, my mother had a heart attack when she was 80. Feeling unwell, she had already called the paramedics who were at her door when she dropped to the floor. They revived her. She is now over 90 and living in an assisted living residence, and she suffers from progressive dementia which greatly diminishes her quality of life. Before she became non compos mentis and as her health deteriorated she told me she wished they had not revived her.

    One day, my brother, who had been to visit her said, “Those people in that place are so old. How is it that people get to be so old?” To which, his wife, who had been a nurse in nursing homes for the majority of her nursing career, sardonically replied, “Because they keep taking their meds.”

    And when I thought about it that is exactly right. If certain medications had not been available at the time, I would have expired 17 years ago. If I stop taking them today, I could shuffle off within a year, or two at the most. My problem is that the manner in which I would die is not necessarily the most comfortable one. We all like to think that we might just go to bed one night and not wake up in the morning. But the chances of a slow and painful death from, say, a debilitating series of strokes, is the more likely outcome should I dispense with the daily medications. Not a pleasant thought. I don’t really want to die in hospital with plastic tubes shove up every available orifice.

    • Thank you, Gary. Your personal examples bring so much context to the discussion. And I know that you, as an attorney, have a very deep understanding of the disproportionate power some people may have in lobbying for the creation of laws. And, you well understand how culture – and its technology can change far ahead of the changes in the laws.

      I agree, as we age we increasingly face the question: Do I want to keep on doing this? For those from whom the choice has been taken, by disease or by law, life must be a day to day surrender of the most fundamental freedom we so commonly take for granted. This must also be terrible when the patient is fully aware of the immense burdens their condition places on those they love, but they can do nothing about it.

      Thank you, Gary

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