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.
Her mother joined our household when I was a baby, in spite of the family rift and was with us as our caregiver until she died. I was in my late teens before I knew of the ‘other child’ and even more years passed before bits of information surfaced about my half-sister’s early years. Looking back, I can easily frame our family tableau as one of a fiercely, self-reliant pack, facing into a headwind.
My mom survived three husbands and was well into her 80s before she declared that she was finished with looking after men, though to be fair she was never a loner and always longed for companionship. In her 80s, we had reconfigured my sister’s home to include the ‘granny pad’ off the kitchen.
Her goal was to get to 90 with her wits intact — the trajectory of dementia in her family history was alarming for her, and she dreaded a similar course.
She made that decade, but then sank like a stone with anxiety and terrifying withdrawal.
We fought back, arranging for daycare and for friends to take her to the seniors club. But it was my sister Joyce who bore the brunt of long nights of being up with her agitation and responding to the frequent police calls when she pushed her life button in a panic.
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.
Last month, my patient was admitted to hospital with a stroke. After two weeks, the extent of the damage is just now becoming clear. In the meantime, and no surprise, she’s developed pneumonia. She moves in and out of consciousness. So more nursing care is brought in by the family who have been asked to consider an advanced care directive.
In another hospital, one of the doctors from the many medical teams caring for one of our friends relays that the latest complication has been caught just in time. He is alive, but after the next complication which they assure him will happen, maybe not.
“What do you want to do?” the doctor asked our friend at his bedside.
Is this a request for an advanced care directive? He has been in hospital for 19 long, unexpected weeks.
There are now clear guidelines for hospital staff to help patients and families establish directives in the case of the seriously ill, including anyone over 80 admitted with an acute problem like heart failure, or anyone with metastatic cancer. Even patients over 55 with documented serious chronic disease like respiratory or kidney failure are included in needing advanced care planning discussions with family and hospital staff. Yes, even those in the final stages of dementia qualify in enabling a family member to direct care.
But the whole terrifying territory of giving instructions for a loved one’s death is far too unformed, vague and at times contradictory. Surely this, of all decisions, should be something that everyone is very, very clear about.
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.
How do I want to die?
Like my mother, I want out with my mind intact.
Here then is a declaration of a 71-year-old who is hale and hearty in body and mind. I want to state my directive in clear language: Before it becomes impossible to remember that I don’t want to be alive in a state of not being aware of who is my family, friend, or kindly care provider, I want the dignity of ending my life on my terms.
I need to have the capacity to have such a discussion that keeps my family safe from legal action, and doesn’t require me to seek an underground source of drugs for the task. I am not asking for a panel of experts to come to such a decision. I want it in my hands while I am still capable.
Even more, I want it not to be a criminal act, but rather an acknowledgement that we should not have to end a good life with an awful death. As long as any such discussion is tainted with criminality, it will never have an open and fair platform.
In fact, we can look 400 years to the past for what I earnestly pray the next 400 years will bring. As Shakespeare said: “Nothing in his life became him like the leaving it.”