In life some roads we travel on we do so with loved ones and friends by our side as those roads traveled have a tangible end. But there is one road we all must travel on that we sadly must do so alone.
And while it’s been said that the road to hell is paved with good intentions, sometimes the road to heaven is paved with good intentions gone horribly wrong. And those intentions become ever so obvious when it comes time for us to travel that final road on the journey ‘home.’
And while some…while many…believe that road must reach its destination only at the time of the Lord’s choosing, I for one have come to witness that is not necessarily so for I cannot nor will not accept that the one true loving God of we Christians and Jews condones the suffering of the barely living getting ready to go ‘home.’
“It’s in God’s hands now,” the religious say…“God will call them ‘home’ at the time of His choosing,” they add, all while quoting or should I say misquoting tenets and words of dogma about the how and when being according to God’s plan alone. But if truth be told what their words really mean is it’s in God’s hands now that we, in all our arrogance and with all our medical know how, can no longer continue to usurp what had all along been the will of God.
And while end of life care inevitably brings about both religious questioning and a deep searching for some semblance of truth, the simple fact is that when a loved one is ready to pass on, many uncomfortable decisions must be made, and many need an excuse or a scapegoat for decisions they themselves are either too uncomfortable with or just too scared to make.
Enter the word’s, “It’s in God’s hands now.”
But no words spoken can explain how a merciful and loving God can allow some to survive and recover while that very same God allows others with the very same disease to suffer and die…is it that sickness and suffering are somehow part of His greater plan? If it is then it’s a plan straight from hell as can be witnessed by taking a simple walk through a hospice ward of any hospital. Take that walk with eyes open as you glance at all the suffering and pain not just experienced by the dying, but also by the loved ones soon to be left behind. Look deeply into the eyes of those suffering who have exhausted all medical technology who now have sadly arrived at what was always their inevitable end, and tell me again how this is the greater plan of a merciful and loving God.
I cannot and will not believe this is God’s plan for any of his children. Instead I believe this type of death…a death shrouded in pain and suffering…is the failed result of our modern society that has doctors wringing every last breath and every last heartbeat possible from a patient’s dying body long after who that person was has since departed this world.
But what should we, as a civilized society, do in these cases…do we play God and end the pain and suffering by our own hand or do we let nature…do we let God…take its predetermined course as the religious believe.
There has to be a better way that allows for better decisions to be made.
And could that better way perhaps be in our allowing doctors to make end of life decisions…to end the pain and suffering…based solely upon a clinical diagnosis that meets a set number of specific medical criteria coupled with the consent of the patient and/or their loved ones…but wait…the religious will say that we cannot have doctors playing God.
But isn’t playing God exactly what doctors have been forced to do by our modern society having set the bar for doctors at an unattainable high. ‘Do No Harm’..the Hippocratic Oath…a promise made that has now translated into doctors being forced to allow patients to linger on and suffer in a prolonged, no ‘quality of life’ existence…an existence God would have ended long before every bit of medical and pharmaceutical technology was thrown at them…an existence now mired down in of all things…legalities. God, or as I believe the natural course of things, would most definitely have closed the door on certain patient’s lives long before the world of modern medicine and a civilized society said their time is up…long before their existence became just a few extra months, weeks, days, or even mere hours of sometimes unbearable suffering and pain.
And amongst all the legalities and the religious dogma that tears at the heart, certain questions remain, for while we can and do prolong life no matter the pain and suffering involved, what has happened to the all-important question of ‘quality of life’…have we as an arrogant society sunk so low as to designate the simple involuntary act of breathing to be ‘quality of life’…life lived just to avoid us having to say that final good-bye? And why at the end of life are we more civilized…more humane…with our pets than we are with the people we so loved? And while as a society we mourn the loss of our loved ones with a celebration of their lives, why do we at the same time excuse ourselves and our choices made by pinning our failings on religion…after all “It was God’s plan” becomes our often repeated mantra as we try to remove ourselves from all blame.
“It was God’s plan”…four simple words we repeat time and again as we strive to make ourselves believe those words…all while ignoring the fact that if we are to invoke God’s plan at the end of our loved one’s life, then we must also invoke God himself in creating the very disease that is taking our loved one from us. And we must also invoke God’s name in helping to create the advances in medicine that allows for prolonging life, prolonging suffering, ultimately leading to the death of our loved one who in their death no longer resembles the vital person we once knew. And then, in God’s name, we pat ourselves on the back for our acts of civility and for blindly accepted what is supposed to be God’s plan.
Again, there must be a better way…a better way that allows for the natural progression of death to occur, but to occur at the time that death becomes a welcome friend not an enemy to be feared.
Enter center stage ‘Hospice’…a highly specialized health care option for those who are faced with no hope of recovery as the end of life draws near…usually in six months time or less…in most cases less…way less. Hospice involves a team of physicians, nurses, hospice aides, clergy, social workers, bereavement counselors, and volunteers who work together to meet the physical, social, emotional, and spiritual needs of each dying patient and their family. With palliative care either given at home, in hospital, in nursing homes, or in special freestanding hospice centers, hospice strives to address the issues most important to the patient’s physical needs while preparing the family for their final good-byes, keeping the focus on improving the person’s quality of life for whatever time they have left, thus allowing them to pass with dignity.
To pass with dignity is hospice’s hope but not always the reality for in many cases death, even with the aid of hospice, is anything but pretty.
Remember, hospice’s goal is to improve a patient’s quality of life for the time that remains all while allowing nature to take its course…to allow God’s will to supersede the will of man and of medicine. This means that hospice does not treat the disease the patient is dying from… simply, the patient is made as comfortable as possible while their body naturally shuts down…shuts down as morphine or other opiates tries to alleviate any pain they may be experiencing. And many times that shutting down means no food or even water is given…translation: hospice is not for the faint of heart for death does not come easy nor pain free for many.
And while hospice provides a valuable service to many, hospice has its hands tied as well for hospice can do more to end the suffering of both the patient and their loved ones, that is if the legalities of death and the dogma of the religious could be put aside for the betterment of the person dying and for those left behind.
Let me tell you a story…a true story with an anything but happy ending as I just personally witnessed hospice in action with the recent death of my mother. Diagnosed young with Parkinson’s disease…the same disease that actor Michael J. Fox is battling and will in the end lose…Parkinson’s has but one outcome…death…a most horrific and gruesome death that many say is worse than the ravages of cancer for Parkinson’s ravages the body but leaves the mind for the most part intact. In other words, the Parkinson’s patient is aware of every change their body is going through…is aware of what horrors are to come next.
My mother battled Parkinson’s for 40+ years and for the first 30 of those years medicine kept it in check and one would barely, if ever, notice that she had a disease that there was no cure for. Thanks to medical science my mom got to raise her family, see her children marry, and have children of their own…in other words my mom got to see the cycle of life continue on. But her last 10 years or so saw Parkinson’s take over as she progressed through manageable stage 2 through needing full-time aides in stage 4, sometimes with the disease slowing for a bit, but then going full throttle into end-stage 5 over these past few months as her ability to walk, sit, move, and most horribly of all…to swallow…was taken away from her.
When one cannot swallow the 22 pills that has to be taken each day in order to live, and when one cannot move any part of their body without agonizing pain, pneumonia and sepsis sets in…and when one cannot swallow even a sip of water medical intervention has for all intents and purposes ended, the doctor signs off with the family’s permission, and hospice takes over. And while I have high praise for hospice in general and for all who attended my mother, I do have to say once again that hospice can do more when the pain and suffering reaches a point that it has become nothing but a living hell.
And while some will not like what I am going to say it still must be said…as I believe hospice must be legally allowed to turn up the morphine drip thus ending the hell on Earth for our loved ones. This would take but a few seconds, and in my family’s case would have spared my mother from five days of a living hell as well as spared our family the specifics of watching our mother and my father’s beloved wife gasp for every breath, moan if even gently touched, drown in her own secretions, and die from starvation and thirst…yes starvation and thirst…for the truth is that for the five days my mom was in hospice she was not allowed even a sip of water for fear of aspiration causing more suffering without medical intervention being allowed. And it must be understand by all that once hospice is called in medical intervention ceases in full.
Is this really how we want our loved ones to journey ‘home’…yet this is how many are dying throughout our country simply because the religious have dictated what the legalities of life and death should and should not be. Shouldn’t we…the doctors and/or the family…be allowed to ‘pull the plug’ so to speak…just as we do for our cherished animals…when no hope whatsoever of survival is at hand…shouldn’t the family be allowed to say our goodbyes to the person when they are still conscious and know we are there by their side instead of them being unconscious, drugged-up, and in reality alone in their death…that would be the humane and civilized thing to do yet that is what we are not allowed to do.
Sadly, death and dying in America is big business with end of life care not only becoming a matter of professional commitment coupled with responsibility, but of dollars and cents as well, all while the true wishes of the family are for the most part ignored. As my mother lay dying…as her body rotted from within…we begged and pleaded with both the doctors and with hospice for it to end not for our sake but for hers. When the unconscious cry through the pain they still feel…when they begged to die while still of this world…to be free of the physical horrors consuming them…we are legally forced to sit back and watch as the morphine is upped a bit at a time until their heart can take no more…and in my mom’s case it took five long days of hell.
This, in a word, is cruel…cruel to the point that no one of faith should abide this as it goes against everything we believe our God would condone for isn’t the basis of faith to be one with God…yet how can you be one with God when you are cursing Him for allowing this suffering to continue.
And this is cruel for nonbelievers as well for suffering becomes pain personified, and it is inbred in the human condition that suffering must be alleviated by any means humanly possible, yet we allow our loved ones to suffer and linger on as we fear the legalities that come with someone’s passing by a human hand.
And so while the pain is finally over for my mom, my family’s final memories of her are one of unbearable pain and suffering…pain and suffering that did not have to happen as there are better ways to leave this world and be one with God if only religious dogma and legalities were set aside for the good of not only the dying but of the ones left behind in their grief.
In Part 2 of this two-part series I will touch upon how legally a true death with dignity can be achieved while at the same time letting the dying be one with God as they travel on the final road ‘home.’