Wednesday, November 16, 2011

Alternate Level of Care–where are the stakeholders?

First they ask for a phone interview, the ubiquitous intern or producer, and I spend an hour on the phone trying to explain the healthcare system to a journalist.
I talk to them about the differences between long-term care, hospitals and retirement homes. I explain that with so-called 'nursing homes' (you can find yourself hard-pressed to find a nurse in one some days) they are now called long-term care (LTC).
I explain how to gain access to LTC, in Ontario it is through CCAC.

I explain that for many with dementia, and other debilitating illnesses, from dementia to cancer, family members are no longer able to provide the care a loved one needs to manage the activities of daily living (ADLs) the patient so needs. This arises from the needs to toilet, or change the adult incontinent product of a loved one. It is well-documented in my book. My father more frequently using a walker after his brain tumour returned, eventually using a wheelchair, was unable to make it to the toilet.
Being a two-person lift, I could not lift him at home.

It broke my heart that the man who changed *my* diaper, I could not care for in return.
As a mother of three adult children, I have done my fair share of changing diapers. The last thing I did for my own mother, before my trip to the city, was to change hers. Weak, feeble unable to breath with a tumour blocking her lung, I did not know she was less than 24 hours away from death. None of the care staff told me.

My brother, caring for both of my parents for that weekend, took her into the hospital. She wanted to die at home and they discharged her. I need the break, did not phone, oblivious in Toronto. Discharged at 4:00 a.m., mom died at 9:00 a.m., as I was presenting a workshop at a women's IT conference.

Fortunately, for me, my brother had taken 5 weeks off of work. He was able to share my caregiving burden, taking dad to radiation treatments, while mom was having chemotherapy and I lived with her, still working full-time teaching.

In the meantime, Mom, in a hospital bed, would have been called a bed-blocker. Not requiring more than the basics that a personal support worker (PSW) could provide, she was eating a tablespoon of food every few hours, resting much of the time on her living room couch.

Many clients could rest like this at home, rather in a hospital bed. Many must be placed in LTC, however, as the demand of a job must be fulfilled by families.

Women are the primary caregivers. Many lose their jobs, if they are not in a field that permits them to provide the care and attention a loved one needs. Many women, including daughters-in-law, are giving up precious time and energy to meet the needs of a loved one even as they reside in a proper facility, a placement in a LTC.

Bed blockers, horrible pejorative term. As if this kind, caring, loving person with ADL needs unmet at home, do not deserve a nurse to pop in, and a PSW to keep them clean.

At this time, according to the media, the costs of care are such:
$1250/day acute care bed in hospital,
$100/day LTC.

And yes, the government pays for this hospital care. There are subsidies for LTC in the (mostly) for-profit LTC beds in our province. This is not true across the country.

I was consulted for 16:9 The Bigger Pictures Hospital Hearbreak.
They continue to call this poor souls bed blockers. The proper terminology is alternate level of care (ALC) patients.

There aren't enough LTC beds, and they sit in acute care beds, with hospitals demanding we move patients into alternative services. Some illegally charge family members extra fees if they will not move the patient. This is against the law. If this is your case, then talk to someone.

We rely on mostly for-profits to house our frail, failing loved ones. And the situation is getting worse across the globe.

Changes for elder care: our best advocate has been Sharon Carstairs, but she is retired.
They keep telling us that the system is broken, but it is not. The system needs to work better. We rely on the will of politicians to make things happen. Their 4-year mandate is not one long enough in the public eye. And change is expensive. We do not have the money to consult in order to create a new system.
We need to make physicians more accountable, and to make the individual stakeholders work better with the resources on hand.

With 68,000 doctors in Canada –fewer than 300 specialize in geriatrics. I wrote about this in my book in 2008.
PSWs are few and far between in rural Canada, where Home First programs, designed to send family members home with extra supports, but PSWs are fully engaged by for-profit nursing companies, LTC residences and retirement homes. We are short nurses, they estimate by 25%, in Canada. Yet the feds and the provinces are being told by taxpayers to cut taxes, not increase services. PSWs work is increasing, with many institutions increasing the numbers of short shifts, where there is not enough staff, due to illness, fatigue, vacation, to meet the needs of residents.

Federal politicians pass the responsibility and the ownership of healthcare on to provinces. Too concerned with 'getting tough on crime', PM Harper is focusing on other issues. Yet ALC clients, with the baby boomer generation turning 65 this year, at increasing exponentially, while crime rates go down. Harper continues to fight a system crowded with criminals, and our prisons are overcrowded, while ignoring the lessons learned about rehabilitating criminals, victim resolution programs, and our hospitals overflow with those in desperate need of LTC.

1 comment:

Christine said...

found this great link to CBC Radio so I'll be sure to catch your stint on radio.

This is a disturbing post, only too true.