As a physiotherapist at Sunnybrook Hospital, I started my
career working in geriatric care. Working with elderly patients was like trying
to fit a jigsaw puzzle together to help them with their needs – not only
physical, but social and emotional needs too.
There was no textbook that told you what to do, but patient by patient, I
gained so many insights and strategies.
Over time and through various work settings, I became
interested in chronic disease self-management which for me, was an extension of
rehabilitation and aligned with my experiences with cancer (myself, my mother
and my father). My mother died 22 years
ago, and she received some palliative care, but it was more “end of life” care
because it was arranged when she only had three months left to live. In fact, this is how we as a family were
informed she was end of life – she was offered services!
I was drawn to work in palliative care, which I believe is a
continuation of serving the chronic disease population and geriatric population.
As the Executive Lead of Hospice Palliative Care Teams, I currently work with
my Nursing Manager to lead a team of ten expert palliative care nurses in the
Central LHIN who consult and educate patients and professionals in the
What I’ve experienced over the
years is that too many patients end up in the hospital for conditions for which
there is no cure and it’s really not the right place to receive the services
they need. Then when patients are sent
home from the hospital, they feel like they have been sent into a black hole,
left alone to struggle through.
We have too many people going to the hospital in crisis or
being sent home from hospital for crisis-type care where we are rushing to get
all the needed services in place, and no one is sure of the patient’s true
wishes or goals of care, so the cycle keeps repeating.
I think we often ask patients for consent – either to apply
or withhold treatments – but do we really
inform them properly of the
risks and/or benefits of each? We tell
patients what we can do from a medical perspective, but we don’t really go
through all the options and explain the different possible results. We don’t really
like patients to refuse care, but it’s their right to refuse and we can support
The possible future
I’m intrigued by the “palliative care movement” going
on. Palliative care was very different,
even five to 10 years ago. Now we are incorporating more ideas from self-management
and focusing on giving people the best possible life they are currently
What intrigues me the most is
the early identification of those who would benefit from having a palliative
approach to care. I think we have a nice
momentum in the areas of self-management and chronic disease, and it would be
great to marry that to the early identification of patients who would benefit
from a palliative approach to care.
Early identification benefits not only patients but may
prevent caregiver burnout. Caregivers become exhausted and confused when they
don’t have access to resources, and they often have chronic diseases themselves,
which they don’t attend to because they are busy taking care of their loved
Let’s have conversations with patients when they are well
enough to make their own decisions before everyone is at the end of their
tether. We need to offer information and
the chance to discuss goals and aspirations for life, but also discuss death
and dying. This will be better for
patients, families, and the health care system overall.
Of course, we need to use hospitals when appropriate, but we
also need to fund community services to be able to provide care in the home and
earlier self-management programs to improve quality of life.
We can’t do ONE thing. There needs to be a multipronged
approach that includes prevention, chronic disease self-management, early identification,
early palliative care service provision (including education and resources),
and provision of end of life care in the location of the patient’s choice.
I think if we can continue the current momentum in the field
around palliative care we can relieve stress on the hospital system, improve
the care and the lives of persons with life limiting illnesses, reduce
caregiver burden, and improve the happiness of clinicians who want to ensure
patients are well served.
The word palliative means to ‘cover or cloak’ – it’s time to
cloak patients with the right care and services when and where they need us. After
all, we live right up until we die.
What strategies do you use to move the palliative
approach to care forward? Add your comments below so that we can all learn