Thursday, August 14, 2008

How Could We "Not Know?"

Saturday, August 13, 2008

How Could We Not Know?

Another Family's Hospice Horror Story: HOW DID WE "NOT KNOW?" How did four highly educated adults not know that the purpose of hospice care was to kill our mother slowly and painlessly? Two weeks after enlisting the assistance of hospice, our mother whose only complaint was that it hurt to be turned, but not enough for pain meds was given a high dose of morphine by a hospice nurse of death. This was just minutes after a doctor had examined her and determined that her vitals were good, she was awake and not in pain. Now she cannot swallow or be fully aroused. Hours before the overdose I called to share how my first day of school went, because I am a teacher. She carried her end of the conversation asking appropriate questions and laughing at appropriate times. Now I cannot even have a conversation with her. The nurses have diagnosed my mother based on what? When she left the hospital she had just had surgery to remove a cancerous tumor. The doctors said that the cancer might have spread to her lungs or she might have pneumonia. The nurse determined two days later that she not only had lung cancer but that it had spread to her brain. WHAT!? Again I have to wonder what she is basing this on. And forget privacy. When I was leaving for a few days to return to my home 2,000 miles away, not sure that my mother would still be with us when I returned a few days later, the nurse found my wanting to spend my last few minutes at my mother's bedside inappropriate. In addition whenever we go into my mother's room everything we say to her is written down to be shared with others later. The nurse told my sister that I needed to come to terms with the fact that people die. "We are all dying," is her pat answer. I am an ordained minister and I accept that death is a fact of life. I know that I will die someday, but for now I am living, not dying. What kind of healthy person lives by the mantra that she is dying? So, you may be asking, "What's the point here?" Do your research. DO NOT USE HOSPICE unless you are looking for a way to speed up the death process albeit painlessly. If you feel that the best thing for your family member is to be heavily sedated so much so that they cannot eat and breathing slows to the point that their brain becomes deprived of oxygen then hospice is for you. If you happen to live in San Antonio, Texas and you use Vitas and better yet the nurse assigned to you is Phyllis, then you better start planning the funeral. Do your research. My family's experience is not unique. Now that it is too late, I have discovered thousands of others who have had similar experiences.

3 comments:

Mary Walsh said...

There is no way a hospice is the place to go and die in Australia.

If you look like "living" they removed the patient back from where they came from, be that home, a hospital, or a nursing home. Usually there is about a three week stay before death occurs, but they don't starve anyone nor do they drug them into unconsciousness to facilitate dying....Drug may comotose the patient, but it is not with the intentions to assist their death!

That is why we are fighting for PAD so that nursing staff can listen to the patient themselves rather than the relatives who wish for their loved one to endure forever what they themselves could never!!!

I'm with the nurse here - People do die - and should be allowed to - if that's what they want for themselves.

CJ said...

My fathers life on hospice "dragged on" for 11 months...he had no "quality of life" for all those months he was KEPT bedridden and drugged and finally, was let to die of nutritional starvation....it was a "soft" death alright but not quick or quiet. he had many fretful, fitful, sleepless nights wrough with delerium....we should have let him live and die naturally of his disease. There was no "pro-life" anything for him...it was a planned course for death and apparently, cause he "held on" for so long, it was NOT his time to go yet...but gone he is now, let to starve to death...

CJ said...

Mary I think you are missing my point here. I am all for a patients "right to die," if that is what they want. My father wanted to live....he was aheart patient on hospice at home and wasnt allowed to get out of bed. They drugged him up so bad eventually he lost his appetite and wasted away. When I realized that he was starving I kicked up a fuss because I know he didnt want to go that way! No one ever told him that he was in danger of starving to death,...their excuse was "he didnt want any needles." Which was true. However, no one told him he could take ORAL nutrients and NOT have to die from starvation and/or malnutrition....
My only point of contention with his care-givers is that he was not informed of the danger of starving to death (though he was!) NOR was he told about the oral nutrients which woul prevent that. I know from personal conservatons with him even just before he died, that he DID NOT WANT to die, PERIOD. But we let him anyways. He thinks it was his heart killing him when in reality, it was NUTRITIONAL starvation. He was never made aware, by my sister the nurse, his caregiver, nor his doctor or any of the other hospice workers. Whats even more bazarre is the fact that hospice had a nutritionalist ON STAFF but NEVER ONCE visited him! This was the Washington County NY Hospice Program- where the head honcho there told me herself, she was NOT aware of any higher standard of care for heart-patients on hospice! Another thing he was supposed to get was physical therapy which he did not have one visit from them either. Poor dad. Its like they wanted him to die like that, as they know nutritional starvation is a painless way to go....particulauly when you are all doped up. I think my father should have been told the TRUTH about his condition and given the option to take oral nutrients,IF he wanted, ...but my family FORBADE me to say anything to him about it. They actually banned me from the house just a couple of week before he passed....so now they say I have abandonded him "in the end." I know better.