This Is What 70 Looks Like: “A Good Death”
My mother died in 2008 in her 90th year. She did so with dignity and in no pain.
Her daughters, we are four, were not there in her hospital room. We’d gone for breakfast, having kept vigil through the night.
We were comfortable that her care included pain management and big decisions about her course of treatment. Simply put, I knew my mother would not be able to endure a 6 week course of antibiotics to treat a bone infection, nor would she want it.
Today, those decisions have names. They fall under the heading of ‘advanced care planning’ in the case of seriously ill patients in hospital and ‘advanced care directives’ established in conversations with the family members and doctors.
Mom was a farm girl, a tough, no-nonsense stalwart with plenty of grit. She had every reason to reach adulthood with resentment and bitterness. But instead she carved out a full and satisfied life for herself.
She’d abandoned her first child when she left an abusive marriage. Without any money, she’d fled to the city and was working as a charlady. My father who was from a neighbouring farm, became a go-between between her and her family. Eventually, they paired up and married during the Second World War when finding any living space, let alone one that could take three children was near impossible. She did it by going house to house, though my dad often described his covert job of clearing out bed bugs under her very nose as tricky. “She would have gone through the roof” was his terse comment. She worked her whole life, first in the mill, then stepping up to a saleswoman in the children’s department of Simpsons-Sears.
And that was were things stood when Joyce called to say she had taken mom to the local hospital in pain and they were going to keep her because it looked like it was a bladder infection. No alarm. “I’ll come down tomorrow” I responded.
The hospital is a small one, servicing the mostly retired farming community of Dunnville on the Grand River in southern Ontario. Heading up the stairs, I ran into her doctor coming down. “Oh, good to see you, Jean,” he said. “It looks like the infection is in her bone. I am calling the specialist at McMaster for a consultation.”
An osteomylitis — an infection in the bone — is a very different proposition than a bladder infection. In the hallway I could hear her cries. Entering her room, I saw the ER doctor who had admitted her was leaning over the bed, trying to calm her. She was senseless with pain and he was reassuring her that they would get the pain under control.
I walked out of the room, called her doctor and said that the four sisters had agreed that our mother should not have to endure a 6-8 week course of antibiotics, which had terrible side-effects and little chance of saving her life. That life was one of constant, terrible, screaming pain, and we wanted only comfort for our mother.
Within 15 minutes, she was moved to a private room. An IV morphine drip was begun. My sisters were summoned. The vigil had begun. The staff responded with tremendous respect and regard, which made it possible for us to direct the kind of care we wanted for her.
In the end though, our directions for her care – given in conversation with the doctor – were simply a less formal way of dealing with what hospitals have now formalized as the advanced care directive and advanced care planning.
The problem for most of us today is that we won’t die under the authority of an advanced care directive, written or not.
I believe advanced care planning and directives about living wills should be led by the family doctor, and it should be done well ahead of catastrophic events or long slow mental decline. Obviously, this has to involve family members. But most often, that conversation doesn’t happen in a doctor’s day- to-day office practice because everyone’s so very busy. In fact, in my 40 years of family practice, I’ve only had one or two families specifically book an appointment to discuss end-of-life care decisions.
I’m also struck by the fact that my very elderly patients are the ones most likely to leave the whole issue to fate.
In a retirement residence, a patient in her 90s, has a fall and bruises her head. She seems fine but her injury uncovers her disorientation. She can’t find her room. We have her wear a lanyard with the room number on it. She ignores it. There is a frailty to her now and an unsteadiness, which even she acknowledges. ‘Wandering’ is a serious consideration. More help is needed. For years she has lamented the passing of all her friends and asks why is she still here. What use is she?
Her time to respond to her own question about the value of her life has come and gone.
The value of her life now passes to her daughters who will secure her care, and honor her memory even if she loses it.
We all face this very question if not for ourselves then certainly for our parents, or for those who depend on us, as a society for compassion and help.
If you have a critical illness, yes, there’s always the hope of recovery or the possibility of being able to adapt to your new circumstances.
But if you have a progressive terminal condition such as ALS you have only a memory of what once was, and if your decline is Alzheimer’s, then it is your family who lives with that memory.
If you find that you, like many, have walked away from any sort of faith-based belief that you have another existence beyond this one, your hope about how you’ll be remembered lives in your deeds or your children.