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.'