Patient-centred-care – the dream and the reality

RNAO has been advocating for person-centred care for years. Our Person-and-Family-Centre Care Best Practice Guideline (BPG) was first published in 2002 (it is now in its third edition), and thousands of organizations and health providers use this evidence-based tool to advance their own commitment to engage with the person – not only with their illness. This BPG is a mandatory one for the Ontario Health Teams (OHTs) that work with RNAO and Best Practice Spotlight Organizations (BPSO). RNAO’s work with Ontario Health Teams on person-and-family centred-care was at the centre of a BPSO OHT meeting two weeks ago. Please get a real glimpse of what person-and-family-centred care looks like from the field by reading the two contributions shared below from a caregiver and a health provider. The first one, by Mik Phipps, is a glimpse into person-centred-care at its best – and how small actions can have enormous meaning. The second, contributed by Helen Lascelle, shares an experience where patient-centred-care was a dream, not a reality.

Small steps lead to big surprises (a contribution of Mik Phipps)

Hi! My name is Mik and I’m delighted to share with you the story of a moment that truly exemplified why we, as health care practitioners, must listen to our clients or patients when they express their own desired path to service or treatment, especially when it may deviate from our usual approach.

In my role as an Outreach Case Manager with the Ottawa branch of the Canadian Mental Health Association, I often get to experience firsthand the value of a person- and family-centred care approach. While working with folks experiencing homelessness and a mental illness, I’ve had the privilege of witnessing the strengths and resources a person draws from their community.

Outside a local shelter, I met with a client of CMHA Ottawa who requested assistance with changing their medication dosage to reduce unpleasant side effects. I was eager to be supportive and immediately started to outline my own plan. This included a call to their clinic, scheduling an appointment, arranging for accompaniment, etc. This plan would likely unfold over a few days or even weeks if missed appointments had to be rescheduled.

That’s when the person suddenly spoke up and said: “No, thanks! Let’s go to my church instead!”

That stopped me in my tracks.

Luckily, we use a strengths-based approach and my role allows for the flexibility and spontaneity to accompany people in their community as determined by what they value as important. I was excited to support this person in taking the lead. So, of course, I said a very enthusiastic “YES!”, then we headed towards the church (even though I had my own biased impression about the plan and was sceptical anything would come of it).

I couldn’t have been more wrong.

When we arrived, I found a church filled with people that all seemed to know each other. A volunteer community worker welcomed us and within minutes they were on the phone with a direct line to the person’s prescriber; they completed a consultation on the phone and arranged for delivery of the adjusted prescription to the shelter where the person was staying.

I was so impressed to see this person leverage his established network to navigate access to health care! Just as I was thinking of ways to celebrate this unexpected success, we learned a community meal was being served.  The person I was accompanying said grace (a prayer before a meal) in English and Inuktitut for all those gathered around the tables and we shared a meal.

As we ate, I realized how close we came to missing this opportunity. By focusing on a person’s experience and relationships rather than only on formal ways of navigating health care systems we expand possibilities, allow more space for culturally significant experiences, and enjoy benefits that can go way beyond any expected outcome.

When patient-centred care is a dream (a contribution of Helen Lascelle)

I would like to share a personal experience of the health system being self-centred instead of patient-oriented. Roger needed a carpal tunnel surgery, which is typically a one-day surgery. However, Roger is 83 years old with multiple conditions: he is diabetic, only 27 % of his heart works, had a stroke that left him with cognitive loss, and is on warfarin and aspirin. The medication has to be stopped and restarted after surgery, and that is a big risk. The last time the warfarin was stopped he lost his legs’ strength and fell to the ground. He had to spend the night in the emergency. Do you think that this is a one-day surgery for him? 

I asked if he can be hospitalized overnight after the surgery to make sure everything is coming fine. Or – could he have a nurse for the first night at home? The answer was a double negative. I am a 77 year old caregiver and surely, I would need help for the first few days. It will cost more if he is re-hospitalized because of a bad recovery.

I asked for help from Community Services. There is no residence that offers respite time for surgery recovery with French services in Ottawa. They can offer more respite time during the day… a care worker to whom I would have to explain everything?  Or I can pay around $150 per day in a private residence with the risk of the Covid-19 virus. In any case, it would be up to me to coordinate everything.

It would be so nice if all the coordination of a patient’s needs would be taken in charge and adapted to his different needs. As a patient, I would like him to feel safe and in good hands – that his special needs are being addressed. As a caregiver, I would like to feel accompanied. We both would like to hear: You are not alone; we are there for you!

This is my dream!