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Better home support for dying patients in Vancouver would improve hospital wait times

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Dorothy sits across from me at Calhoun’s on West Broadway in Vancouver, BC. Her eyes are bright and relentlessly honest. Although slight creases in her face suggest her age, she seems light. Her bouyancy suprises me when she shares anecdotes from working thirty years on the front lines of palliative home care.

“It is a privilege to connect with so many people and their families. Everyone has their own unique story and family dynamic. It is crucial to have the time to build connections with palliative home care patients. I don’t understand why we [nurses] are increasingly pressured to rush. Things have changed a lot over the past few years,” says Dorothy. “I hope that you can back-up my anecdotes with research.”

“I promise that I won’t write anything until I find research to back up what you are saying,” I reply.

The research

The Canadian Centre for Policy Alternatives has been following the “steep decline in home and community care services” since 2001 and their numbers indicate that home and community care services have declined by 14 per cent in the past decade.

The CCPA studies verify what Dorothy has seen and what I have written in my previous posts, Palliative in BC: a daughter's view of the health care system and The truth about dying in Vancouver. Although the majority of my struggle was the despair of losing my mother, it was also the devastation of losing faith in the ability of our province and city to care for our most vulnerable.

The CCPA 2012 report titled, Caring for BC’s Aging Population, explains how “a decade of underfunding and restructuring has led to a home and community care system that is fragmented, confusing to navigate, and unable to meet seniors’ needs”. These studies are aimed to bring clarity to what had become “a numbers game, with the provincial government claiming it had increased the availability of services despite evidence of a growing crisis in access to care in communities around the province, particularly as a result of the closure of residential care beds”.

Time is the greatest commodity

According to Dorothy, the patients that are sent home from the hospital are sicker than she has ever seen in her 30 years of home care service. “I am not sure why there are people being sent home with such extreme health conditions.”

She recalls a time when she delivered medication to little old ladies and had enough time to alleviate their isolation with a cup of tea. “Their eyes would sparkle and light up when I delivered their medication, because they were almost always alone. They would say that our visit was a highlight of their week,” Dorothy recalls as her eyes smile at the memory.

The brightness in Dorothy fades as she returns to the present. “Now, the medication is just dropped off by a delivery service through the pharmacy. I have to justify the time I spend with patients by listing specific tasks that are completed. We are not supposed to spend time getting to know our patients,” she says.

According to Dorothy, there are many important reasons to have more time with home care patients:

1. When nurses have more time with patients, they can achieve trust, that is not built in quick visits.

2. The trust and connection is essential to understanding the condition of each patient.

3. When nurses have more time, they can answer questions that emerge naturally through conversation.

4. A rushed visit prevents nurses from providing care that is aligned with the ideologies of nursing school.

(6) Comments

Bernice Balcaen November 13th 2012 | 2:14 PM

Everytime I get a new pain or tickle or twinge, etc. on top of my already-health-problems, I pray to myself all day until diagnosis and follow up - because I envision the next illness/major health problem will take away my independence. I envision being shunted into a facility in a wheelchair or rolling bed and stuck in a corner ...  full of medications which will shut off my brain & I will be left in that corner sitting, bringing-up all over myself and sitting in my own excrement until someone comes along and pronounces me dead and they take me off to the crematorium. There is not enough money in Canada for in-home or out-of-home health care (so it is said) and all our governments (local, provincial or federal) don't care to do anything about it - (they each pass the buck)  let all the money go to the politicans who WORK SO HARD FOR US.

christabel shaler November 13th 2012 | 3:15 PM

Bernice- Your concerns are valid. From what I have learned, we are facing problems that are primarily due to inefficiencies in our healthcare system. If money was spent more strategically, we would see an improvement. Vancouver Coastal Health decides where the money goes. They are influenced by what is most relevant to Vancouver citizens. If we don't talk about old age and palliative care, there will be less attention put towards these issues. It is our job as citizens to care and insist that we can do better! When more people care about these topics, it will make a difference. 

Thank you for caring and being part of this conversation.

huckleberry farper November 14th 2012 | 9:09 AM

The cared-for need better supports at home, but the caregivers, who often suffer loss of jobs or income, need a bit of help, too.  Caregiving for an elderly relative is a 24/7 responsiblility.  I know this because I care for my elderly mother, but I still have my own needs as well.  They don't take a holiday.

 

When I wrote Christy Clark about it, all I got was a campaign speech and excuses.  Her reply read like it was written by Ken Boessenkool--snotty and condescending.

 

christabel shaler November 14th 2012 | 11:23 PM

Thank you for raising this important point. I can relate to your struggles as a caregiver. We have to keep these conversations happening, so that people like Christy Clark can see that voters care about our most vulnerable citizens.

Caregivers constantly live at risk of burnout and health problems. I am hoping to find an economist, who can help me to break down why unsupported caregivers impact our local economy.

It seems logical that providing support and respite for caregivers helps to sustain their health, finances and community connection.

Healthy citizens can better contribute to society. 

huckleberry farper November 16th 2012 | 5:17 PM

Thank you for your understanding.


Perhaps we should break the ice with Adrian Dix as well...from the looks of things, he might have the spring election in the bag--and he may be a little bit more willing to listen.

 

We caregivers save the healthcare system millions upon millions of dollars a year in this country.  I know I have.  I took care of Dad when he became more or less bedridden in the last six months of his life, and after his death, I managed to keep Mom from falling into a deep depression.  She's good now, but at 84, there's a lot she can't do anymore.

 

In the same token, I know she wouldn't be happy in a care home.  Care homes aren't very nice anymore, since Gordon Campbell and gang decided that the private sector were more suited for the task.  They take the money and cheap out on everything, and I read about the horrifying results all the time.  No way is Mom going into one of those hellholes, no stinkin' way. 

 

But she has good times and bad times health-wise, and I still have to be aware from day to day.  Yet the government calls me lazy because I don't have an outside job.

 

I'd love to see Christy Clark do this.  I've taken care of them for over 10 years now all totalled.   Up till when Dad got sick a year and a half ago, I also had a janitorial job at 25 hours a week.

 

I might be many things, but I would love to tell Mizz Clark that I am anything but lazy.  She wouldn't last 10 days doing what I do here.

 

christabel shaler November 18th 2012 | 7:07 AM

Your work as a caregiver is both important and valuable.

In my opinion, this issue is bigger than Christy Clark...It is a far-reaching cultural plague. It is a collective pressure for us to turn away from the eldery, so that we can maintain our entitled realities of working 9-5 and consuming things we don't need. 

What if there was honour and respect for those who care for the elderly? What if there was room to slow down and just be with our loved ones in their final days?

What happened to us? How did we end up in a point in history where we cling to youth, gluttony, and narcissistic self-improvement ideologies?  

How did we buy into the concept of tucking away the disabled and the elderly?