I have been involved in caregiving for two persons as they were dying. Some years ago, I was the main caregiver for the last few days of a parent, and quite recently I was a support person for another death in my extended family.
On the Internet, there are plenty of compendiums of advice on how to prepare for this eventuality. There are also old-fashioned hardcopy books out there. It’s too big a subject to treat in a short blog post, so I am going to just focus on one link in the chain of end-of-life care. I am picking out this item because it’s so vital, but it can be one of the hardest steps to execute well.
This step is for the responsible caregivers to obtain, nay, demand, hospice care status, when the appropriate time comes. And then to insist on maximum levels of palliative meds, again, as appropriate.
You might think that this is the obvious, normal course of medical treatment. But (and this is a key point) this runs contrary to what medical practice is normally geared for. Doctors and hospitals exist largely to “save” lives. When someone gets carted into the emergency room, the normal response is to stick tubes into them and fight to keep them alive. Anything less would be considered irresponsible (and possibly grounds for a lawsuit).
And so, the family caregivers may need to fight with the hospital doctors at this point. I am not overdramatizing here. I know of a case where someone in their 90s, and the family and the nursing home staff had good reasons to believe this person was in the process of dying, and at the emergency room was found to have a secondary condition that was probably treatable by antibiotics. The emergency room doctor naturally wanted to do all the usual stuff with IVs and meds, but in this case the family caregiver (backed up by the nursing home staff) insisted on palliative care only and on immediate hospice qualification. Things got kind of testy with the emergency room staff, but these strong women (caregiver and nursing home nurse) got their way, and so the patient was able to quickly receive palliative care.
Hospice care is amazing. It allows the provision of what a professional caregiver called “comfort juice” – – a cocktail of morphine for physical pain relief, and anti-anxiety meds for psychological calming.
That’s the kind of thing you want when the dying process sets in. Most people wish that they could just pass peacefully in their sleep, or maybe from an instantaneous massive heart attack or brain aneurysm. Sadly, that’s not usually the way it happens. The body is programmed to fight to stay alive, so the death process can be prolonged, uncomfortable, and very undignified. Even with the pain meds, there may be stages in the process that are distressing for the family to witness, but at least they know they are doing all that can be done.
Main Takeaway: If you are the potentially dying person, choose your medical POA (Power of Attorney) very carefully. The POA needs to be strong, competent, and 100% on board with your wishes of no prolonging life. She/he may have to fight like a bulldog to get your pain meds increased if there are signs of distress. We often treat our dogs better than we do our dying seniors. A good pet owner doesn’t let them suffer unnecessarily.
The PAO (and his/her allies) may have to take tough, unpopular stands. Within the broader family, there will likely be a few squeamish members who may want to hold back on the transition to hospice care. Maybe they fell they should “give mom/dad another chance” or they just don’t feel ready to lose the person quite yet. I think doctors may read the room, and withhold hospice if there are some family members that are advocating the normal treatment measures. Again, no doctor wants to be sued. Therefore, instruct your POA and your tougher caregivers to try to keep the weak family members away as much as possible when decision making must be done.
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