COMMENT: “The effectiveness of liquid morphine & Ativan seemed inadequate. The 'active dying' process took six days---no food, no water, and it seemed her body began to decay before our eyes. Even the hospice nurses were somewhat surprised at her strength.
We were able to give her wonderful care at home, and hospice was a valuable resource, but strongly opposed to the use of a narcotic patch for additional comfort care, despite our calm but assertive concerns. Finally did start the patches, and wished they could have been started sooner. We still struggle with the memory of those final days, and the periodic suffering she experienced.
Your book “Gone From My Sight” was so helpful to us. Perhaps the concerns I've raised belong under a different topic of your blog.
There are several areas in the above comment I am going to address: comfort management, use of a transdermal patch, the normal dying process and being at the bedside watching someone we care about die.
Comfort management: Pain is unique to each individual. There is no one dose, one kind, one method that fits all. Unlike the old adage, “Take two aspirin and call me in the morning”, end of life pain management requires time and experimentation to reach a comfort level. Closeness to death itself also affects how medications will be responded to. The closer to death the less circulation there is to distribute the medication throughout the body.
Use of a transdermal patch: A patch is pain medicine commercially put into patch form and applied directly to the skin. Some end of life care professionals like and use the patch system, others do not. I personally do not use the patch if the person is within days of death for a couple of reasons. Early in the disease process a patch can be an excellent source of pain relief but when very close to death, circulation is poor so absorption is poor. Mainly, a patch is a specific dosage for a specific time period and what is needed as death approaches is the ability to regulate the dosage and time frame to each individual. Patches and time release medications do not allow that latitude. If the person is non responsive and unable to swallow but agitated and pain has been a part of their disease process then medication can be given rectally or made into a creme and rubbed onto the skin. Generally there is no need for invasive injections or IV medications.
The dying process: In the one to three week time period before death a person enters what I refer to as labor. That labor is harder on us the watchers than it is on the person who is actively dying. The person who is dying is so removed from their body they are not experiencing it in the same way that we, the watchers, are perceiving.
In those days to weeks before death the person is not eating or drinking or they are taking so little fluids we believe they can’t possibly be comfortable. This is the time the body is shutting down, letting go of it’s hold on this life, dying. No food, no water in the last days of life is perfectly normal. That is how we die. It is not uncomfortable or painful to not eat or drink at this stage. It is actually uncomfortable and disruptive for the dying person if we force food and water in the days to weeks before death.
This is a short explanation about a complicated subject. Watching someone we care about in the dying process is frightening, stressful and generally misunderstood. Knowledge reduces fear but it is generally after the fact that we begin processing and asking questions. It is my hope that people will read “Gone From My Sight,” “The Eleventh Hour” and watch “New Rules for End of Life Care” so that their experience will be less traumatic. Having someone close to us in the dying process is so very sad but with a bit of knowledge it doesn’t have to be a bad experience.