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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 community.

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 their decisions.

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 living.

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 one.

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 together.