The delivery man from Schryver (a medical supply company) showed up unexpectedly at my room this morning to retrieve the oxygen equipment—equipment that I happened to be using at the time.
Naturally, no one from the hospice bothered to warn me.
Surprise surprise. This entire introduction to the “hospice system” has been an eye-opening one. From the outset it was made plain to me that I was not the typical patient. This was dpone in a rather accusatory fashion almost as though I had somehow offended them by not opting to die as they thought I should. Apparently I did not look sick, act sick, or respond to my sickness as was expected. It made the staff and administration quite unhappy.
Rather than a suitable alternative to traditional hospital care—as advertised—it is little more than a less comprehensive extension. Since my enrollment I have encountered the exact same bullying, the same condescension, the same arrogant disregard for the patient , prevalent, unfortunately, in the modern “medical” world (or health care arena), only within the hospice system these platitudes are couched within the myth of catering to the express desires of the patient. It is an oppressive world; one which those entrusted to serve and care for others instead seek n to control, manipulate or in some way to exercise dominance over them.
One never thinks about the preconceived notions applied to the sick and the dying. We each assume that the end of life will be treated with reverence, tenderness, and infinite care. I suppose the concept of another expecting one to die cooperatively and on terms acceptable to the caregiver is so abhorrent that it is never even considered; nonetheless, what I have, much to my outrage, bewilderment and frustration.
But then I stop to think about it….
Those who are terminally ill are usually the elderly or those too incapacitated to make decisions regarding their treatment and/or care. If not utterly alone, they are generally under the guardianship of harried loved ones struggling to not only come to terms with the death of someone dear to them but also with those pressures and stresses which result from providing daily care; that’s, in the typical “hospice situation”, the recipient of their services are usually all too willing to allow the “system” to dictate any and all procedures and decisions for them. Few question. Few complain. The administrators (and staff) maintain absolute autonomy with regards to every aspect of the patient’s final days.
Until someone raises an objection….
Then the delicate balance topples. The reins of power are no longer firmly in hand. Allowances must be made, questions addressed, suggestions heard, alternatives entertained, requests considered, needs met, and invariably, routines broken. And this is a situation that does not conform to the day-to-day process of providing “hospice services.” One can no longer--as an administrator, nurse, volunteer, or caregiver—operate under welcome familiarity of autopilot; and this is utterly unacceptable.
What a sad yet evocative statement regarding not only our society, but also our current health care system.
Would I be receiving my quietus at 3 this afternoon had I not questioned the before undisputed authority? Had I not pointed out the ways in which the actual system failed to conform to those standards and ideals promised, would now the same guidelines under which I initially qualified for hospice care suddenly exclude me? Had I just shut up and been a good, docile patient—unthinkingly, unequivocally, surrendering to the methods, procedures, and treatments prescribed me regardless of their effectiveness, without considering the specific needs and challenges of my individual situation, no matter how inappropriate they were under the circumstances—would Pike’s Peak Hospice (or other facilities like it) be quite so eager to “give me the beach.”
Would I still be “hospice qualified” or “a perfect fit” if “I only had [no] brain.”
Perhaps…
I shall never know.
Yet, for all intents and purposes, from all that I have seen, heard, and endured, it most certainly seems so!
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