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Better than hospice alone - Opinion/Editorial

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There has to be a better way. Hospice fits the bill up to a certain point, but hospice when you experience it through a loved one dying, is sorely lacking in the final days for the survivors and involves a very slow death for the person dying. Although hospice provides the comfort of a death at home, it also, in the final days, gives an agonizingly slow death by starvation (although the patient doesn’t have 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 congestion from too much water consumed.

Having been through the hospice process with my father, his lasting slow death was excruciating, for us anyway. I wouldn't wish the last two weeks on anyone -other than the fact that they can die at home and the patient (seems) comfortable for the duration. What more could one ask for? Maybe they are not as comfortable as assumed, but with enough morphine to relieve and banish pain, it's a trade off of sorts. But there has to be a better way. Perhaps hospice provides a good solution for the early stages when the patient is conscious and responsive, can laugh, watch TV, converse with family and the like, but towards the very end, I believe we can do better. 'Assisted death' is called for at this time in my opinion.

Maybe we the survivors, and probably the patient, want it to be less drawn out at the very end. Who is hospice/assisted dying for exactly? Seemingly 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, I believe all concerned family members 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 druggy haze or starvation scenario. By this I mean an 'assisted death' and having several consent forms signed once and resigned a week or a month later by the patient when fully cognizant, and certainly by their doctor (or perhaps two doctors) would have 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'. This term is misleading and has nothing to do with suicide by a physically healthy but 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. And often a terminal disease comes with family members not opting for hospice, 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 has given family their 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 adapting to that. 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. We all die eventually don't we? One should actually have both an advanced directive and a will. But a detailed ‘living will’ will suffice. Do you want oxygen? A ventilator? Medication? Hospice? Hospice doesn't allow ventilators however. Tell your family 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 with several layers of safeguards in place. Countries in Europe are already allowing assisted death with only a few instances of abuse. I want that option as a choice as well.

Assisted dying is defined by having your doctor give you enough sedative to let you die gracefully and with dignity without having to starve to death or your family witness such an end. My father was skin and bones, albeit more grueling for my family than him. A limp fetal curl is difficult to bear.

Note- Some define assisted death as patient administered medication, but that’s another issue for another time. In my opinion, a doctors okay and advice is vital; and the patient should already be at the stage of unconsciousness. Another drawback to hospice is that some of them refuse a doctor's care in the final months.

When do you administer the final dose of medication? After a period of time, and when the afflicted drifts into unconsciousness, not just sleep, and cannot be roused, then is the time for the medication. All of this to be determined and recommended by a doctor who knows end stage disease, and by the spouse/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 the nurses call a doctor days before the nail beds on his graceful hands turned blue.

There are many legal obstacles and many who would abuse this solution to terminal disease, however laws change, sometimes for the better and many believe assisted death is better than hospice alone.

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