The truth about dying in Vancouver

Eroca (left) and the author (right) in a Vancouver hospital.

Providing proper care for our dying loved ones should be a right, rather than a privilege. 

“In the U.S., there wouldn’t be anything,” the doctor told me.

“You wouldn’t have any home care support to help your mother with showering and personal care for an hour a day. You wouldn’t have a nurseline to call.”

“What happens if I get sick and there's nobody who can help me care for my dying mother after she's sent home?” I asked the doctors and nurses repeatedly. But I never got a clear answer. My mother had more than three months to live and there were no other options for her care. 

As we prepared for my mother to go  home from the hospital, I felt I was standing on a ledge with an abyss opening beneath my feet. It was like confronting a cold vast emptiness, while the hospital at least felt safe.

I'd lie down with my mother in her hospital bed and just hold her tight. With my arms around her, I felt I was keeping her back from the abyss with my strength, the only thing between her and the abyss. But I knew she would fall. I knew the abyss was yawning beside us, a cold wind blowing up from its depths. 

My mother was one of 1,100 patients who are sent home to receive palliative home care in Metro Vancouver each year, according to Vancouver Coastal Health. The average dying patient in Vancouver is cared for at home by their families whether or not it is affordable or manageable. My mother's name was Eroca. She possessed a witty intellect seasoned with cynicism. A hardworking psychologist and a single mother, she loved  farmer’s markets and opera. She was my best freind. 

When my dying mother was sent home from the hospital, I received a list of medications, a list of Red Cross equipment to pick-up, a number to call and some brochures about private nurse services.

I was enlisted as a nurse without training.

It reminded me of being 4 years old in the messy dress-up corner at daycare. I'd wait patiently while my mother finished up another long day at the office. At day care, there was an over-sized nurse uniform and a plastic orange stethoscope and I diagnosed stuffed animals and pretended to have medical training. 

As the doctors handed me prescriptions, brochures and lists, I couldn’t help but wonder whether someone would hand me a plastic orange stethoscope soon.

We left the hospital and the free fall into uncertainty began. We were told that my mother could return to emergency if she needed medical care.

When it came time to return to the ER, however, it was a dangerous process. My mother’s bones and lungs were full of tumours which made her vulnerable to vertigo and fractures. I positioned her body in the passenger seat of her car with pillows and blankets like a breakable object. Her deteriorating body could not sit upright for a long period of time in waiting rooms alongside  patients with twisted ankles and surface wounds.

“Don’t dying people get any sort of preferential treatment?” I asked the receptionist behind the glass.

“She has to wait like everyone else,” explained the woman.

After pushing with loud words and losing my manners, a less robotic woman stepped in to assist me. She helped us to obtain a hospital bed, so that my mother could lie down and minimize her suffering as she waited in her stoic state of patience.

After realizing that the process of going to the ER was dangerous, I became determined to find a palliative care doctor who would come to my mother’s home.

In order to gain access to this doctor, I spent several weeks waiting on hold and going up the chain of command.

Once again, I raised my voice and lost my manners in order to access services. I later learned from nurses that this style of advocacy is the best way to get what you need. What happens to the patients and caregivers who are not privileged with an understanding of advocacy?

Living through my time as a caregiver, I was offered unexpected gifts of human kindness that are too beautiful for words and I learned about innovative solutions. I was also confronted by inhumane policies.

In upcoming stories, I'll write about innovative solutions and the people who inspired me to slow down and find the beauty in palliative care. I hope to share the stories of isolated people: disabled, aging or dying in Canada, and the invisible caregivers who accompany them through this process.

Listen carefully.

This could one day be your story, too.

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Comments

US Resources for The Dying

Your doctor was misinformed about services available to US palliative care patients. Sadly, I was with my partner in Ohio recently when he lost his dad. If we had brought him home a care worker would have come to help out with bathing etc, 3 or so times a week and we would have had access to nurse line 24/7. That was as covered by Medicare. The rest of the time we would have had to care for him ourselves or hire help. I'm so sorry for your loss.

Reply to comment.

My father died at home of a cancer that blocked his intestines and fused them to gether. He died in my arms. He did not want to die in the hospital, where he would have been alone, isolated in a room only to see family during visiting hours. Regardless of the hardship home, when people are in the last stages of life, is where they should be. Much of the long waits and care problems, is caused by the people who are in the haospital waiting to died. This has also helped a growing list of bacteria that feed off the deteriorating soon to be corpses to learn to overpower the human immune systems. People should die at home where even if there life is cut short due to lack of life sustaining technology they can be with their loved ones. Hospitals use the elderly as a source of income, it should be a crime.

 

Thank you for your comments. I agree that dying at home can be an ideal situation. I was eventually able to find innovative solutions that made home care possible. We need to provide support to families when they are providing care for their loved ones at home. If home care is preferrable and it saves tax payers money, then it is logical to make it more manageable. 

 

Dying at home or in hospital

Oh, Christabel, I know your mom was so grateful for that time she had with you in the apartment, with or without your orange plastic stethoscope.

The last thing I remember about visiting her is you and your brother discussing new recipes for your mom. She was with the two people she loved most in all the world, and that is what mattered. She still had her sense of humor and her formidable intelligence, and she had people to appreciate her. What a precious gift you, with help from Charles, were able to give her.

Love, Kay

This was a very touching

This was a very touching story Christabel and I am very sorry for your loss. Your voice and advocacy is inspiring to me and I hope to hear more about your experiences.

Palliative Care in a hospital

I volunteer at a palliative care weekly, a lot of patients don't know where to go next... For some I often doubt if it had sped up the dying process.

Thanks for writing this

So beautifully expressed Christabel...

Yes, your mother was so very lucky to have you with her on her final journey. And I agree that when private citizens take over public welfare duties there should be some sort of support or compensation.

But despite the fact that this was so very very hard for you, no professional would have made your mother more comfortable or feel more safe and loved.

Look forward to reading more,

Monika

 

The Truth About Dying in Vancouver

If you wrote a letter saying you had packed your bags and were on the way to the airport for an extended vacation, and you handed that letter in the nursing station in the hospital wing where your mother was being cared for before they could make you take her home or stop you, what would happen to your mother? Whether you should do that or not is a different question we can discuss later.

The bottom line

I am grateful to have spent my mom's final days by her side. If you become a caregiver, you should not have to fight to access basic services. You should be able to feel that your loved one is safe and comfortable.

In our current system, many caregivers end up severely traumatized and overwhelmed, because there is not enough support at home.

The bottom line of what I want to communicate is the unsustainable structure of palliative home care in Vancouver. The current system is stretched beyond capacity...and some could argue that the system is completely broken.

When someone is dying and cared for at home, there is an enormous saving for taxpayers. Therefore it is not logical to have insufficient supports outside the hospital. When support is insufficient, then patients are more likely to end up in the emergency room more than is necessary. This costs more for taxpayers and it is dangerous for patients and caregivers.