Friday, October 14, 2016

ESSAY Better Than Hospice Alone

                        Better than Hospice Alone

  Congratulations, you’ve opted for hospice for your loved one, or you. They will be at home, comfortable, and ostensibly pain free. But what happens in the end, towards the death? Is there a better way to die when one is terminal with disease, towards the very end of hospice. Hospice when you experience it through a loved one dying, is sorely lacking in latter stage solutions for the survivors, and becomes a very slow death for the person dying.
    Having been through the hospice experience with my father, his long lasting slow death towards the end, was excruciating, for us anyway. I wouldn't wish it on anyone, although the patient (seems)comfortable for the duration.  What more could one ask for? Maybe they are not as comfortable as assumed, only resigned to dying; but with enough morphine to relieve and banish pain, it becomes a trade off of sorts for the suffering family.
   Although hospice provides the comfort of a death at home, and that is important, it also involves, indeed belabors, an agonizingly slow death by starvation (although the patient doesn’t experience the sensation of hunger) and water deprivation. I know and realize there are reasons for this water and food scarcity, chief among them the patient's lack of appetite, choking concerns and the resulting lung congestion from too much water consumed.
   But there has to be a better way. Hospice provides a valuable service for the early stages when the patient is conscious and responsive, can laugh, watch TV, the ball game, converse with family and the like, but towards the very end, I believe we can do better.
     What is called for at this time? Maybe we the survivors, selfishly want it to be less drawn out and quicker. Who is hospice/assisted dying for exactly? Seemingly the obvious, the one who is terminal, but I would venture it's the whole family that travels this road together.
    If offered a quicker death at the end of hospice, I believe all concerned family members and the patient would welcome a faster end. Both the patient and family want desperately to have the terminal member go the eternal bridge into the unknown, with all the comforts of a hospice setting, but not with the end stage starvation scenario. By this, I mean an 'assisted death', where doctors administer a final and fatal dose of morphine to the dying. Having several consent forms signed once when hospice begins, and resigned a month or so later by the patient when fully cognizant, and certainly their doctor (or perhaps two doctors) to approve and sign as well.
     My own research into hospice and assisted suicide suggests that this kind of assisted ending for a very ill person is already being quietly done/practiced/administered. Additionally, it should not be called 'assisted suicide'. The term suicide is misleading and has nothing to do with suicide by a physically healthy but a woefully depressed individual.
   Intelligent people also realize that chemotherapy doesn't work after a certain point, depending on the type of cancer and stage when diagnosed. Very often a terminal disease strikes a poor soul, whose family members do not opt for hospice at all, and who want all manner of therapies and resuscitation devices used in a hospital setting. This is understandable if the patient has been involved in an accident, but not so understandable or wise when a family member is terminal with disease and their oncologist or cardiologist have given the family of the patient the sad prognosis many times. Unfortunately, emotionally, they just can't let go.
   The same goes with major stroke victims and their loved ones, although that can be and usually is more sudden. In those cases, a space of time is necessary of course, for the family’s new reality to sink in and adapt to that new dire status. If the patient has no 'advanced directive' telling family what they want for their end care, the family is in a serious bind. A document outlining these end of life possibilities is essential. Such a document must outline your preferences for how you wish to be cared for at life's end, not just who gets what materially. An 'advanced directive' is specifically intended to address these ‘end of life’ issues.  Do you want oxygen? A ventilator? Medication? Hospice? Hospice doesn't allow ventilators, only passive oxygen. You must let your family know HOW you want to die.
   This proposal for assisted dying is not for highly religious people (note I didn't say spiritual people). Most people are aware that Catholicism, among other religions, forbids assisted death. That's unfortunate because I believe everyone should have the option of assisted death along with several layers of safeguards. The states of Oregon and New Mexico and countries in Europe, as in the Netherlands, are already allowing assisted death. I want that option as a choice for myself as well.
   Assisted dying is defined by having your doctor giving you enough sedative to let you die gracefully and with dignity without having to starve to death or subject your family to witness the same. My dear father was skin and bones, albeit more grueling for me, than him. A limp fetal curl is difficult to bear.
    -Note: Some define assisted death as patient administered medication, and I don’t agree with that course. But that’s another issue for another time. -In my opinion, a doctor’s okay and advice is vital. The patient should be already in a stage of unconsciousness, unable to be roused awake, when medication is administered, and all papers previously signed.
   When do you administer the final dose of medication? All of this to be determined and recommended by a doctor who knows end stage disease, and by the close family who has agreed to it. In my own experience, the nurses knew when my father's end was near and it would have been easier for all concerned to have them call a doctor to end it.  Long before the nail beds on his graceful surgeon hands turned blue, before another heaving breath. All the family, and I believe fully, my kind father, wanted his demise to be over. There was nothing offered, nothing available to this end. We need  that option, everyone of us.
   There are many legal obstacles and a few amoral people who would abuse this solution to terminal disease, however laws change, sometimes for the better. Many believe, myself included, that assisted death towards the last stage of hospice, is better than hospice alone.

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