My father discovered that he had developed pancreatic cancer too late for anything other than chemotherapy and radiation. Fortunately, he had access to incredible medical care from the best in the pancreatic cancer business.
For those who do not know, this type of cancer is painful and relief from that pain requires a significant amount of medication, including opiates. In addition, not only are there physical aspects to dying that are hard to anticipate and unique, there are also great mental challenges as you begin to face your end on Earth.
My father was a devout Catholic, outspoken anti-abortion, and gave money to a myriad of causes designed to help people in need. He also was very giving of his time, helping countless children mature and grow into responsible adults.
After fighting this horrible disease - nothing can prepare you to watch someone suffer in this manner - for 14 months, he could fight no more. In fact, there came a definitive point where he knew he would soon die. Everyone likes to think that their father is tough, and mine was provably so, but after making every sacrifice, allowing his body to be poked and prodded for more than a year, and trying every available remedy, he accepted that he was destined for Heaven.
We did speak with Hospice, and in fact signed him up for the program for him to die at home as peaceful as possible. However, that same evening he began to experience the greatest pain of his entire journey and instead of calling Hospice, my mother decided to take him to the hospital. That is where he was admitted to the palliative care floor at his hospital, and was where I learned a new phrase (palliative care) and what that entailed.
He had little time left to be conscious, in fact only 2.5 days in hindsight, so there was a flurry of activity to make final plans, say goodbye, and try to make him as comfortable as possible. His doctor, who was the most wonderful, caring, a compassionate person you could ask for, who had stuck with him throughout the journey, was there. He told her that he was ready to die, that he was done fighting, and that if they could give him a shot right there to take him out of his misery, he would take it. In absence of that option, he asked that he be kept free from pain.
From that point forward, it is hard to put into words what I witnessed. Along with my mother, we lived for almost 10 days in that little room (I left for roughly 6 hours in that time period, my Mom almost none) caring for him the best that we were able. I had never witnessed someone die in this manner, let alone my father, and there are sounds, sights, smells, and other things that were horrible to experience. He was essentially unconsciousness for 7 days, though there were a few brief moments where he “woke up” and tried to communicate with us. We had worked with the staff at the hospital to increase his morphine intake until he no longer exhibited outward signs of pain, and it certainly affected his ability to communicate and function.
Regarding hospice care and palliative care, at the time I did not give too much weight to the fact that they only kept him on a slow IV for hydration and no nutrients whatsoever. He asked to be kept pain-free and he acknowledged his fast-approaching death. The reason behind the extreme pain that led him to the hospital this final time was an intestinal blockage that prevented him from digesting food. Essentially, without external infusion of a source of nutrients, he was a goner no matter what at this point - the disease had reached its apogee.
Did the lack of nutrients hasten his death? Probably... Did the large amount of opiates hasten his death? I don’t know, but possibly... Did he want to die? Yes. Would he have accepted a quick death at the end without suffering? Yes, he specifically requested it from his doctor, but she refused.
In hindsight, I did feel that he was at least partially starved to death in the end, but I have to ask - why would we want to prolong his suffering? To what end? He wanted to go to God... He wanted the pain to end. He was tired of suffering and made his choices lucid and after much reflection. Had we given him nutrients, he could have possibly lived for a month or more while in extreme pain from the blockage. As it was, he made it almost 10 days and we were successful in keeping it mostly pain-free, but it wasn’t a 100% pain-free experience.
I miss my Father and it was hard to watch such a strong man get destroyed by such a ruthless disease, but the disease was destined to win over his physical body. This is without doubt or question - He was terminal. Upon reflection, I think that what the staff at the palliative care ward in the hospital accomplished was amazing. To a person, they were loving, kind, sympathetic, helpful, caring, and strong. They worked very hard to make sure that my father suffered as little as possible as he completed his journey here and began his next. Were I in his shoes, I don’t know what I would have done the same or different, but the terminal suffering would have heavily weighed in my decisions. He made his choice to move on and we accepted all of the assistance that we could to help him with his wish.
I don’t think that there ever will be a template that can be used to make these types of decisions, though our “leaders” are going to try. Ultimately, if it can be competently made by the patient, that is who’s wishes should be honored to the best of our ability.
Unfortunately, the industry has used the fear of this "prolonging a painful death," and used it to promote the removal of hydration and nutrition from those also who are not dying from cancer or advanced organic brain disease like jacquej described, but simply "failure to thrive" and dementia and stroke patients.
Deliberate dehydration in these latter circumstances, despite what the palliative care industry says, is a very uncomfortable (indeed, "tortuous") process, the symptoms of which must be masked by morphone, sedatives, haldol, etc.
A friend of mine is a hospitalist in Harrisburg. He says 50% of the patients admitted to the Catholic hospital where he works with advanced dementia or severe stroke are dead within a week. He calls it "7 day euthanasia," because these patients are not terminal unless you withdraw hydration. They are placed in palliative or hospice care, their food and water is withdrawn, they are given morphine, and they are dead in 7 days.
That is euthanasia, and it is occurring on a large scale in this country and abroad.
It is going on in hospice care as well as palliative care.
Yes, there are incredible individuals and individual hospice and palliative care programs out there offering compassionate, truly ethical care. I know some of them personally. But that is not universally the case. Far from it.
I sought a nurse on the floor to discuss this with....and asked she go off the record. She of course hesitated but eventually understood. As I had suspected the medication was indeed too strong and the cause of her problem. I asked the nurse if she would please ask the Dr. to decrease it, even if it might mean she'd have some discomfort. I would learn he did just that...and the hallucinations stopped and she was in no discomfort at all for lessening it.
The problem as I saw this was the family member was far too dependent on the Doctors..and my mother for that matter. As the nurse explained to me the Doctors see the patient for only a ‘very short’ time....it's ‘the nurses’ who care for them who ‘see’ the progress or the opposite throughout the day. Having this information I spoke often with the nurses who let me know the real comfort level of my mother....and I went thru them.. who then went to the Dr. if I thought something might be done differently.
Additionally my daughter in-law is an outstanding ER trauma nurse as well as worked on the floors and headed them. She has said the same thing.....get to know the nurses even though they change shifts....and it helps because you can then structure your visits when you know a particular one is on shift. I did and for that my mom was comfortable until time to go with the Lord.