Canadian Virtual Hospice

As requested, a video more representative of Canadian Virtual Hospice.

The previous one I highlighted featured information about children and palliative care, something about which I am most keen!
I spent two session volunteering with Elke's Expressive Arts Therapy group working with young children.

Another excellent post by a Charge Nurse.

Blatchford Bashes Health Care and Misses the Point 

I disagree with some points, however. In rural Ontario there is varied progress in delivering services to palliative seniors.
In Toronto sheer numbers overwhelm.

I also disagree: "If you need to spend your last years in a nursing home, your lot will often be misery and suffering, unless you have money or excellent family supports." Our dear friend, Dolly, loves her later years.
I volunteer in a LTC facility, and they do their utmost to work with the residents. We participate in their lives as volunteers.

They residents would be miserable at home, too. It is no fun being ill, frail, and limited by your body breaking down. This piece just confirms it:

What Broke My Father’s Heart
How putting in a pacemaker wrecked a family’s life
By KATY BUTLER
This kind of story convinces me that people need to read my book and understand how to advocate for their loved ones. They must demand treatment plans, and better physician attention.

There are few nurses in LTC. Most of the grunt work done by Personal Support Workers.
The Emergency Room Nurse is right in that taxpayers don't want to pay for better care, but they damn sure demand it. Those with money simply pay for extra care. This is a horrible situation.

I have written long and hard about LTC. Not all LTC is like this. You only see the worst ones sending their folks to emerg, and many quietly pass in LTC. My father had a dignified death in LTC. It was his doctor and the nurses who wouldn’t give him pain meds in the LTC. I wrote about all this in my book. I think that we need to look at what LTC is doing right. There are many facilities that are well-run. They are mostly for-profit (500 or so out of 600 or so).

And they aren’t nursing homes, as nurses are few and far between. We must regulate PSWs, they are the ones in some retirement homes, too, who panic and send a resident to hospital.

Great Source of Information: Virtual Hospice

The Canadian Virtual Hospice provides support and personalized information about palliative and end-of-life care to patients, family members, health care providers, researchers and educators.

The Canadian Virtual Hospice is an interactive network designed to facilitate information exchange, communication, and mutual support between and among patients, their friends and family, health care providers, and palliative care volunteers. Leading Canadian palliative care professionals, associations, policy makers, private sector businesses, complementary palliative care websites, and individual Canadians have lent their support to the creation of this website.

I just wish someone had told me about it at the time. I was desperate for information on my father's last months. They feature a speech, this one one part, a lecture about caring for palliative children in rural Canada.



Topics include:

Providing Care

Caring for Yourself

Whether you are caring for someone full-time or even just occasionally helping out, caregiving can be mentally, physically and emotionally demanding. Although taking time for yourself is often easier said than done, pushing yourself to do more,... read more...

Help with Medications

Medications are commonly used to help manage pain or other symptoms that are troubling.   It is important to know about the medications that you are prescribed: how much to take, when to take them, why you are using them, potential side effects... read more...

Help with Eating

A person living with an advancing illness will not eat as much as they once did. While it is important not to become too focused on increasing the amount of food a person eats, there are a number of strategies that can be used to increase interest... read more...

Care of the Mouth

Many people with advanced illness will experience an uncomfortably dry mouth. A regular mouth care routine should be followed three to four times a day and more often if the person requires. Following a routine will help keep the person more... read more...

Caring for Hair and Face

Caring for hair Illness tends to make people perspire, making their hair damp and sometimes tangled.  Brushing someone’s hair regularly can be a thoughtful gesture.  Hair can be washed in the shower or tub, at the kitchen table with a basin, or... read more...

Help with Bathing

Most people find bathing or showering refreshing. However, tub baths and even showers may become more difficult as illness progresses. Here are some ideas for making bathing comfortable and safe.   General Tips Buy or rent equipment such as... read more...

Help with Toileting

For some people, the prospect of either giving or receiving assistance with toileting can be a source of embarrassment. A matter-of-fact approach is best. If the person is able to get to the bathroom, consider whether the environment is helpful. read more...

Positioning a Person in Bed / Preventing Bed Sores

They feature information en Français, plus a Glossary

• Support
• For Professionals

• •What Is Palliative Care?
• •Emotional Health
• •Spiritual Health
• •Symptoms
• •Providing Care
• •Visiting
• •Decisions
• •Financial Assistance
• •Final Days

Another great post from the Emergency Room Nurse:

Blatchford Bashes Health Care and Misses the Point [Part I]

There was something bothering me about this column by the Globe and Mail’s Christie Blatchford, published a couple of weeks ago. It contains the the semi-standard Tale of Woe in Canada’s health care system.

Reading the summary of the story, it is rather sad if it is a reported. 
What a horrible tale, if it is true. I hesitate as I recall reading Ms. Blatchford’s book, “Fifteen Days”, in which she reported, according to a soldier, and she concluded the same, that few coming back from Afghanistan are suffering from PTSD. We discovered PTSD from studying Vietnam vets, I don’t think they have cured this, and she leads many astray.

I think journalists have to stay away from complex issues like this, especially since it is a one-sided, flat story, with none of us being entitled to be judge and jury. It is the Charge…oops, critical care nurse and those on staff who must examine what happened. Having been a chair of a Family Council at a LTC home, I know how wacko some families get. Everyone is jumping on the bandwagon, and few understand the issues.

I am tired of senior abuse being charged to the system. Incompetence, perhaps, but since the story must be coming from the family (the hospital cannot release info) I know how much having an ill loved one sends a family member over the edge. Staff run around like mad. Most are competent. We never hear the good stories, and we always hear rumours and innuendos. There are many ways to monitor a loved one in a hospital. Being in a hospital exposes one to many complications. Read my post here: Hospitalization for seniors

Many have bedsores – my friend does, and she is paraplegic. She is a sentient, retired nurse on a “special bed”! It is no cure.

Having worked with my mother’s Charge Nurse (through CCAC) I know how hard they work to find homecare before discharge. Mom kept insisting she didn’t need much. There may be a difference between ‘no homecare’ and not enough homecare. That we all suffer, due to no one wanting to pay taxes!

Personal Support Workers & LTC

  Jun 23, 2010

Situation critical: Overburdened PSWs

As front-line workers in the overburdened long-term care system, PSWs are the...

"PSWs are the most intimate point of contact for 75,000 elderly Ontarians living in government-supported nursing homes, helping with everything from feeding to toileting."

While these Long-Term Care (LTC - not 'nursing homes' - there are fewer nurses) are homes run on government support, most (about 500 out of the 600 in Ontario) are for-profit institutions. Thereby lies the rub. And regulation of retirement homes isn't going to help.


We need consistently trained, responsive, responsible PSWs who are accountable, registered and regulated. I am not sure that the training is entirely the issue, either. It is making the for-profit institutions accountable to taxpayers and residents for effectively-managed staff. The work formerly done by nurses is now being done by PSWs: changing bedding, changing incontinence products, toileting of incontinent residents, which requires a great deal of intimate interaction. Rumours of for-profit institutions demanding that adult diapers be held back are horrifying.


Those who complain about seniors being neglected are justified. However, this is also a function of taxpayers unwilling to pay HST, or higher taxes to provide such care. There are socioeconomic issues. In my case I put my father in LTC in a private room. He was loud, sang at the top of his fully-functioning lungs, had fights with other men in wheelchairs, and once pulled the fire alarm. These are people with dementia, with few inhibitions. They need utmost care and vigilant attention. Dad's personality changed and the myth of the benign senior abounds. Those with mental health issues are trouble in LTC. We were forced to put Dad in a private room, as his behaviour was intolerable. It was well worth the money. 


There is a lack of money for enough PSWs. The physicians have about 200 patients per floor, the nurses do not always understand a resident's case. The Silver Tsunami is wreaking havok on our system.

Accountability and Responsibility Case Study #11

I adore reading this blog, Emergency Room Nurse. Now promoted to 'Clinical Care Leader', the author is an advocate for all stakeholders in the system, from patient to professional. Her latest piece,

When the Physician is an Idiot, You Have To Be an Advocate

is fabulous.

We in the health care system must advocate for our loved ones, family and friends (they are not mutually exclusive or inclusive!) In this case, her nurse over rode the intern, who misinterpreted a DNR order as a Do Not Treat order, and denied appropriate, simple, medical intervention. Such a shame, but bless those in uniform who do so.

Those delivering services to seniors, as volunteers, must be aware of the responsibility that they accept. By visiting a home, it is their role (in my humble opinion - IMHO) to advocate for the men and women they serve. Often, they have no one else, or family does not know the situation. I was speaking to another adult caregiver for a failing parent. Before dementia was diagnosed, often neighbours and friends would phone and suggest to the caregiver that they were responsible for letting said parent engage in dangerous activities. Unfortunately, as with my case, I had no idea my mother was driving unsafely. No idea a neighbour would help her turn her minivan around as she could not manage her vehicle..

But, back to volunteers. In a home they should be checking a refrigerator. For those delivering Meals on Wheels, for example, they need to be noting how much food is actually in the refrigerator and whether it has been eaten. Phoning their contact person is crucial if there is either no food, or too much. Chains of command are interesting, in that anyone in Ontario can report elder issues to either the police, or to the  Community Care Access Centre(CCAC). This is the agency that works through the regional Local Health Integration Networks, the Transfer Payment Agencies for Ontario Health Care.

If a senior is not eating, if their home is dirty, it is up to someone to take control. If moldy food is left in a refrige, and it is eaten, there could be dire consequences. My concern is if there are no standards of care for a Personal Support Worker, and they are not checking the food situation for a senior, someone has to be accountable.

the truth about long-term care

I disagree that it is a policy that makes seniors wait for placements. It is an increase in demands of the system and the Silver Tsunami. In our case my father was placed within 3 weeks. We put him in a private room. No, he didn't like it, but he was immobile, incontinent, and we could neither lift him, nor provide those intimate pieces of care so important to all of us.

Many seniors refuse to leave their homes. They wait until it is too late to make a decision, and they then have to be put in Long-Term Care (LTC). In Muskoka, seniors refuse to leave homes, require much support at home and end up in hospital, too ill to go back home, and breaking fragile bones. The demands on loved ones is huge, with senior caregivers, often spouses, facing burnout and depression.

The other issue is that most of our LTC homes (500/600+ in Ontario, for example) are for-profit centres who rely on government money to survive, in order to make a profit. It is far more complex that waiting times, it is infrastructure and the sudden influx of seniors living longer, and needing more care.

The great media blitz, with journalists charged with showing the difficulties of our system, is putting everything out of proportion. These 3 writers:

By Mike Adler, Jillian Follert and Rob O’Flanagan | Jun 16

Situation critical: a Metroland special report

Ontario’s long-term care system is paralyzed, and failing its most vulnerable...

are all part of the bandwagon.

Yes, we have wait times. Yes, we have people in hospital (Alternate level of care: ALC) who could be better placed in LTC, but we have many more who insist on their independence until it is too late. LTC is expensive, and many want to stay at home. But the reality is that we cannot afford, as taxpayers, to keep every ailing senior in their homes. We do not have the Personal Support Workers (PSWs) required to make the system work. There are insufficient hours, and personnel in many places, e.g., the north, to make this work more than on a part-time basis.

There comes a point when a senior must relinquish their home, and pay for support services for their activities of daily living (ADL). My mother refused to move, despite being unable to get groceries, drive the car, pick up a newspaper, get mail from the post office and all the other activities. This meant that someone has to pick up the ball. In my case, it was me. She had chemo, on top of her other medical issues, against what I thought a logical treatment plan, while my father had radiation treatments for a brain tumour that had returned.

These treatments stopped them in their tracks. They needed full-time care. And still my mother wanted to stay at home. Our hospitals are crowded. Seniors are becoming increasingly frail. LTC homes are sending residents to hospital (the emergency department) who should not be there. It is a vicious circle.

I recall, during the 30-hour blackout, hubby as manager directing traffic for airport passengers in the long lines. Most were resigned. Most accepted the reality of the situation. He heard a TV crew yelling across the place to the reporter, 'I found a crier!' and they all hustled over to film the one person in tears trying to get a flight out of town.

The media isn't telling the wonderful stories about those who are coping well. It is shameful. They are not speaking of the peaceful passing, pain free, of those who have lived good lives. I had a client in The Pines, LTC, and they did a masterful job, in this public (non-profit) institution, to give him excellent care.
My dad was well-done by in LTC, for the most part. His physician let me down. But that is another story.

Senior Care and the news

 I truly have to laugh at the 'if it bleeds, it leads' philosophy.
 Some in My Muskoka complain that retirees are taking up bed spaces in long-term care. (We won't call it a 'nursing home' in Ontario anymore!)

I gave a couple of presentations at the North Simcoe Muskoka Palliative Care Conference last week. Held in Casino Rama, it was great. The staff were very attentive. I gave away a few books, but sold more!

It was profoundly interesting to hear one another's stories. I encouraged my audience to add their stories, as it was the them of the day. "Stories in Palliative Care"

Yes, in Muskoka, there are long waiting lists. It is true everywhere. What REALLY CAUGHT MY EYE was the Bracebridge Examiner article that complained about retirees in Muskoka who are taking up LTC placements. They interviewed a daughter who was complaining that her mother, in Lake of Bays, who was given 3 choices for LTC and was sent to Gravenhurst. The wait for a place near the daughter's home was 2 - 3 years in Huntsville, much closer.

Our PSWs are fabulous people, and the nurses know what they are doing. What I do is tell adult caregivers how to advocate. This is an important part of being in touch with what is going on. 

As an adult daughter I gave up a lot to care for my parents. I wanted to share my expertise. Living and Dying With Dignity is a tricky prospect, at best.

Fearmongering won't help, though. Metroland writes: Seniors in Parry Sound are 'Falling through the cracks'. In another article, we are 'Punishing our seniors'. Another, Hurry Up and Wait. All the same article, raising the cry. You know that if it bleeds, it leads! Many seniors are begin cared for well by many in the system.

In 1901 life expectancy: ages 47 (F) and 50 (M).
In 2010 life expectancy is 82.9 (F) and 78.3 (M) years
Seniors experience:

• arthritis 
• 44 % of 65 => 74-year olds high blood pressure (40% of seniors) 
• vision problems: 79% of senior men and 84% of women.
• One in ten seniors over the age of 75 need help with ADL s.

Despite our grandparents living longer, our parents fail to understand that there are only two certainties: death with taxes. Government is pushing family members and communities to become more involved. Also, they expect neighbours to lend a hand, despite inadequate resources, training, the will or expertise.

I saw mom and dad slowly deteriorating. Denial about health issues because that meant they weren’t ‘fine’.

• Demand a geriatric assessment to determine their quality of life. Radiation on a 75 year old is different that the same effect on a 45 year old. 
• There may be other comorbidity factors, such as infections or chronic diseases, that contraindicate treatments.
• Caregivers & family members must look for signs: driving habits, getting lost
  1/3 Canadians suffer chronic diseases: 80% < 65 years have 1 or more (OHQCC.ca, 2008)

Barriers to health care

I have written previously about this issue. Even in Canada, with our health care system, there are barriers.

Barriers to health care

We know what works in health care: prevention, early identification, efficient treatment.
We know how to prevent chronic diseases: stop smoking, eat well: a balance of food groups, exercise (FITT- flexibility, endurance, strength), relax, socialize, monitor your blood pressure, live well, and listen to your body.

The Canadian Institute for Health Information published a report: Reducing Gaps in Health: A Focus on Socio-Economic Status in Urban Canada. In it Low Socio-Economic Status (SES) is identified as a barrier to good health.

WHAT IS A BARRIER?

Within the Ontarians with Disabilities Act (ODA), a barrier is defined as “anything that prevents a person with a disability from fully participating in all aspects of society because of his or her disability, including a physical barrier, an architectural barrier, information or communications barrier, an attitudinal barrier, a technological barrier, a policy or a practice” (ODA, 2001).

•    Family issues - dysfunctional families

•    Communication deficiencies or disorders: language barriers, auditory, visual, cognitive disorders

•    Pregrieving issues: anger, denial, bargaining, caregiver issues,

•    Bias or prejudice - i.e., inaccurate statistics: women die of stroke and heart disease, fears, = mistakes in diagnosis or treatment

•    Language barriers, expressive or receptive language disorders

•    Poor or ineffective treatment plans

•    Cognitive disorders - delirium, dementia,

•    Mental health issues

•    Attitudes: i.e., discrimination, being treated as incompetent, Primary Care workers who speak down to patients, or use acronyms, or complicated language

•    ACCESS: Wait times, lack of staffing, crowded hospitals

•       Socioeconomics, e.g.,   lack of awareness of dental hygiene, undiagnosed diseases

The RN Association of Ontario has created a learning experience:

In My Shoes: A play about poverty

Interested in learning more about how poverty can affect one’s health? Come join us for a special community performance of In My Shoes: A Play About Poverty on Friday, June 18, 2010 at the Innis Town Hall Theatre in Toronto. The play shares experiences and reflections of a group of people living in poverty in Sault Ste. Marie. The play will be followed by a discussion with the audience. Admission is free of charge.

LTC beds in Eastern Ontario are scarce

Everyone is looking for answers to the silver tsunami. Eat well, exercise, and plan for the future.

CBC News - Ottawa - 
Lack of long-term care worse in eastern Ontario

The doctor responsible for health care in eastern Ontario says the region lags behind the rest of the province in providing long-term care to patients because of a lack of affordable home-care options.
"We probably have 250 folks today who are in our acute-care hospitals who shouldn't be there," said Dr. Robert Cushman, CEO of the Champlain Local Health Integration Network, which covers an area along the Ontario-Quebec border, including Ottawa, Cornwall and Deep River.
"Their treatment is finished. Unfortunately, they can't go home. Well, one of the reasons they can't go home is we don't have the supports to improve home-care services. [So], the apparent option is long-term care."

Read more: http://www.cbc.ca/canada/ottawa/story/2010/06/04/ott-long-term-care-wait.html#ixzz0qC5DY9xk

Alternate Level of Care (ALC) Patients

Report: 2010

Wait times for long-term care in Ontario triple since 2005

 TORONTO - Too many people in Ontario are still waiting too long for the medical care they need, the Ontario Health Quality Council said Thursday in its 2010 annual report.

Patients in a hospital who need a long-term care bed wait an average of 105 days, but for people who are still living at home, the wait is 173 days or almost half a year.

"We’ve got 25,000 people who are waiting for long-term placement, 6,000 of whom are in acute care hospitals," said Progressive Conservative health critic Christine Elliott.

The Health Quality Council also found there are still 730,000 adults in Ontario without a family doctor, even though half of them are actively looking for a physician.

Ontario's New Retirement Home Legislation

Retirement home bill doesn't protect seniors, opposition says

Wed Jun 02 2010

Opposition parties say legislation to regulate retirement homes was rushed through the House Tuesday without adequate consultation, leaving big loopholes harmful to seniors.

Ontario is to enact retirement home legislation

The difference between a retirement home and a Long-Term Care facility is one of needs and abilities. Here is my dad in his retirement home. He needed a walker at the time, and help taking his medications, as well as supervision for showers.

In a retirement home you are a tenant. In LTC, formerly called 'nursing homes', you are a resident and protected by the LTC Resident's Act in Canada. The difference between a long-term care (LTC) home and a retirement home is the levels of care, and the Government Acts which apply.
In LTC, you gain the benefit of the Ministry of Health and LTC strict regulations.

• Ministry of Health and LTC (Ont.)

In a retirement home you are simply a tenant, and are governed by the Landlord-Tenant Act.
In LTC you have nurses, with PSWs to do the work, in a retirement home, you are susceptible to the whims of the for-profit owners.

In LTC you have a Bill of Rights: LTC Standards

In Ontario, 500 or so of our 600 plus LTC homes are for-profit, and look at the troubles they face.

This is a frightening proposition to me, since LTC is staffed according to a specific resident/staff ratio. In a retirement home there are fewer staff, residents are required to be independent, to a certain extent, and many in LTC would not manage in a retirement home. They can get away with much if they are NOT regulated, but I fear that they will not improve the delivery of services to individuals.

You can see from my photos of my father the difference between his living in LTC (right) and in the retirement home (above). In the LTC facility he was no longer mobile.

In public and privately run retirement homes the media regularly report horror stories of resident neglect, abuse and poor standards of care on this continent.

The new act states:

Restraints prohibited

"(1) No licensee of a retirement home and no external care providers who provide care services in the home shall restrain a resident of the home in any way, including by the use of a physical device or by the administration of a drug except as permitted by section 71."

 
This means that government inspectors will be out and about. This is not a bad idea at all. But with something like 628 retirement homes across Ontario housing 43,000 residents (Tor. Star), they better be on their toes!

Some say, "“When there are no rules, there are no rules,” he said. “This will bring consistency. It will ensure those operating retirement homes have a level of competency to do so.”"
I hope so.

If a family member complains, and some are reluctant, there is a fear that nothing will be done, or that their family member will suffer the repercussions. Similarly, if a family member complains about a retirement home they can simply kick the resident out.

I hope this does not increase family expectations for retirement home vs. LTC.


The Star has a big article on this:

Big holes in Ontario retirement homes bill, advocates say‎ -Toronto Star

Critics charge that retirement homes will be able to self-regulate, medicate residents, and become "de facto" long-term care facilities if Bill 21 passes, according to a Toronto Star article.


However, the bill allows for the industry to be virtually self-regulating — missing public oversight, critics say. The legislation creates a private oversight model called the Retirement Homes Regulatory Authority but it has limited public controls, according to Sack Goldblatt Mitchell.