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Archives > Winter 1999 articles
Do not
go gentle into that good night,
Old age should burn
and rage at close of day;
Rage, rage against the
dying of the light.
...Dylan Thomas
By the time we reach a certain age, most of
us have come to accept our own death. However, the image
of one's self de-ceasing
tends to generate trepidation rather than fear because it
is hard to picture or really appreciate an event with which
we have no prior personal experience. Instead, we tend
to worry about how we might shuffle off this mortal coil.
It might turn into a seemingly endless series of dreary steps
forward and backward rather than a brisk sashay off-stage.
If we become unable to look after ourselves, will we have
any ability to influence what happens to us? There are
some losses, such as powerlessness, that seem worse than death.
If we don't die suddenly or can't recover from
an illness or trauma quickly, there is a good chance that
we will need something called "long term care".People most
need this type of support during the last year of life.
That last year can come at any age, but because more people
are living longer, it is seniors who are more likely to be
the focus of discussion around this need for services.
Health Canada recently funded a project that
looked at abuse prevention in long term care.
Residents, family members, volunteers, and staff working in
extended care facilities were asked about their experiences
and feelings. What they had to say, and what we do with
this information, is important to all of us. When it
is our time, we can "go gentle into that good night", or,
perhaps, not so
gentle.
There was a great deal of emotion during the
project focus groups: residents spoke of grief and loss, family
members struggled with grief, loss and guilt, staff and volunteers
expressed empathy for the residents and their own fears about
ageing.
People living in facilities spoke of being relieved
or resigned to be there, either because they didn't want to
be a burden on their families or because they had no one to
care for them at home. But one respondent said: "Any
place you have
to be feels like a jail". Some said that choice
has a lot to do with the ability to accept, and acceptance
is key to making a successful transition to spending the rest
of one's life in a facility.
Mobility and the ability to do some things for
oneself are important. However, though there are very
few people admitted into care today who have any degree of
mobility, people who can continue to be active outside of
the residential facility - treating it more as a home base
- tended to feel greater independence and equality with staff.
And greater independence seems to foster healthier relationships.
Facility caregivers find it easier to meet residents' needs
if they don't have to meet all of them.
There was much talk among staff about the facility
being the resident's "home" but, as a volunteer said, "most
would really rather be home" if they were given a choice.
They'd probably also like to be healthier, younger, more able
in many ways and with people they loved. So, all of
them are struggling with loss - in some cases devastating
losses - which ".happen at a time when many of their other
resources are depleted". These losses can be (very roughly)
grouped into a few categories:
1) Control - residents make a transition from a life
constructed by personal choices and freedoms to a condition
that ranges from loss of choice to complete dependency.
In one facility, residents say that personal decision making
is supported and promoted: they can choose from a wide variety
of things to do. In another facility ".everything stops
at 4 p.m. and, on Friday, it stops for the weekend".
People need to know where to turn for help with a complaint
and feel confident that their comments will be acted upon.
Some residents alluded to a spiritual component in care provision,
stating that it was their belief that the ".values of management
are similar to residents." which is a good indication that
practice in that particular facility is consistent with its
philosophy. Residents of facilities that have active
residents' councils also appear to feel more control over
their environment and are more supportive of one another.
2) Personal privacy, dignity, loss of person(hood)
- people commonly said that living in a facility was "dehumanizing".
A lot of this is probably due to the resident's need for care
and loss of mobility. Space is a huge factor.
All the residents who participated in focus groups in extended
care facilities were in wheelchairs. It was exceedingly
difficult to get a group together to talk intimately because
the physical space is not designed to accommodate wheelchair
traffic. The result is that residents become, and feel
like, obstacles.
Protecting personal privacy is very important. Bathing,
dressing and other intimate care need to be conducted respectfully.
One staff person indicated that, even though the individual
resident may not be aware of a loss of privacy because of
cognitive losses or other reasons, there is a cumulative effect
on everyone.
Residents and family members emphasized that there "must
be leeway for honest mistakes and honest emotions" when people
are working with other people. But residents don't always
feel like people, and may instead feel more like "a job to
be done". Family members described residents being wheeled
into a room and left facing a wall or a television set turned
on without regard to whether the program was appropriate.
Residents said they wanted to be viewed as individuals, capable
of change, and possessing "an opportunity to develop to greatest
potential", not as a group of people needing care and maintenance.
3) Physical privacy, quiet places to visit, time and
space for quiet reflection, tranquility - limited space means
living with people not necessarily of one's choice.
One of the intermediate care residents said of her room, "privacy
is very important - it's all you've got". But then she
was mobile, and was able to leave her room to socialize.
Not everyone in intermediate care wanted to be alone in a
room, but they did want compatible roommates.
Only 5% of seniors in B.C. require institutional or residential
care. Many enter facilities from acute care hospitals
where they are sometimes referred to as "bed blockers".
Staff of residential facilities are feeling pressure to provide
more acute care even though the philosophies and realities
of care are very different. Acute care emphasizes "fixing"
and a short turn-around. Long term care supports people
to live with disabilities
or illnesses. Residents of long term care facilities
have very different needs from acute care patients.
One person working in a facility said, "Those societal expectations
of our roles and responsibilities expand to government and
funding and how we're resourced - which is mainly by custodial-type
care. Those are different kinds of resources than what
is required to provide independence." This "widget factory
mentality" surfaces in descriptions of facilities as a number
of beds rather than the capacity for number of people.
Residents say: "Staff need to be reminded of how important
they are to lonely old people" and "who gets you up in the
morning is how your day goes - someone comes in with a smile
and sets the tone for the day". But, if funding
provides only 2.5 care hours per day, per resident and the
majority of people need far more care than that, staff are
forced to "borrow (time) from Peter to care for Paul".
There's a good chance that the resident whose mood is most
affected by contact with staff is also the one perceived as
most likely able to "lend" some of his care time to another
resident needing more care time.
One sour, bad tempered staff person can have a considerable
effect on residents and other staff. So the impact of
a staff person who doesn't want to be there or doing this
work has a significance all out of proportion to their relative
numbers. Saying that "It takes the same amount of time
to get someone up, whether or not one smiles when doing it",
focus group participants emphasized that the right attitude
has to be a prerequisite to working in long-term care facilities.
Staff must want to be there, engaging in this work, and need
to secure union cooperation in setting standards in care giving.
Not surprisingly, abuse and neglect in long-term care facilities
appears to be a continuation of abuse and neglect in communities.
One person working in a facility said:
"Our control, which stems from the responsibility to look
after and protect, allows us to be patronizing, demeaning,
disrespectful, ... and gives us permission for not getting
to know people. We sometimes create dependence.
It's difficult to relinquish that control because of our responsibility.
We need to be clear about resident's rights and their freedom
to live at risk and involve family members in a discussion
about these issues and the need to weigh the risk. We
need to value staff, give them more freedom in their work
environment. Meaningful participation and shared decision
making so control is shared - that's part of education.
Rights and individuality are what we're striving for".
The impact of violence, abuse and neglect on people living
in facilities is very profound. One man spoke of being
disabled and thus completely unable to move as another resident
held a pillow over his face, smothering him. He
has now recovered some movement but said he will never forget
what it felt like to be totally helpless and dependent on
others. He wanted people to know that his experience
is not that uncommon.
We all, to some degree, depend on the people around us to
keep us safe and to meet our needs. The people who are
now most in need of care have a right to basic care and support
but are least able to demand it. Increasingly, in our
politically charged society, individuals have to form a group
and lobby for what they need. Very frail seniors have
no resources or inclination to do this. Or, if they
try, they can not compete with other more vocal and well organized
groups. Many of the oldest people in our society are
women who have outlived people whom they cared for and who
might have cared for them. They represent a generation
reared to accept responsibility for others, not assert their
own rights. They are too often alone, and too easily
made invisible. What we are able to do for them, we
do for ourselves.
The APL professional development kit, including videos and
teaching materials, is available on loan for a refundable
deposit from BC CEAS. Call 521-1235.
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