What is criminal is that it is often only through experience or word of mouth that we understand how to proceed in heath care issues. This is why I wrote my book. My mother died at home, and we were helpless with no information on supports in our small community. My father died in long-term care. Now I would have known whom to talk to.
I took the Foundations in Palliative Care Course, a standardized course for professionals and volunteers, and I am volunteering with HospiceMuskoka, to give back to the community. We know much about having a good death. The professionals are amazing. My teacher was an RN whose father died part way through the two-month course. There are so many issues: Rx, pain control, comfort measures, symptom management, family conflict, disparity between urban and rural. etc. all manageable if you know where to go for help.
One issue, of importance to me, is preparing for pain control. This does not mean you have to administer drugs to diminish their mental capacity. It does mean that you should have a plan whereby you are prepared night or day to manage their pain. In my case I fought for more than a week, discussing medications with nursing staff, and fought intensively over a couple of days, to talk to the physician at my father's long-term care (LTC) home to get more pain meds.
If you are providing palliative care at home, you must be ready if and when a patient is in pain. Many suggest drugs like Lorazepam, for anxiety, which (I believe) may mask real pain. When a patient cannot breathe, is on oxygen, with reduced food intake, limbs are thin, bed sores are common. It may be hard for them to articulate or isolate the pain from their worries.
Anxiety may well be a sign of pain symptoms. It was for my dad. If so, then rather than guessing about pain issues, prevent pain. My dad could not communicate this to me as his cogntive functioning was compromised with his dementia. Pain is something that needs to be kept on top of: once pain becomes severe it is more difficult to manage.
It is difficult in the wee hours to access a physician and/or a pharmacy. You must be prepared. That said, my mother was sent home from her 2nd chemo treatment, cancelled due to a blood clot, with a Rx for morphine tablets and she chose not to fill it. That meant that when the pain hit, in the wee hours, she would not have had the drugs available. Similarly with my father: I should have sat down with his physician and asked for a plan and a standing order for morphine injections (he was no longer eating, chewing or swalloing) when the time came. (Dad had refused to take his Lorazepam and other meds, and was unable to ingest them.) In that way I would not have had to phone around trying to find the doctor (who has both a clinic, private practice, and worked at the LTC home) and get Dad the pain relief he needed WHEN he needed it.
I urge you to plan ahead and be prepared for every eventuality. Doctors seldom make house calls, especially in rural areas, and there is no reason a famliy should be dragging a patient to emergency for this problem.
Other Resources Adam, J. (2006). The last 48 hours. In ABC of Palliative Care. (2nd edition) Oxford. Blackwell.