What is it with respect and patients?

Patients deserve respect. Well….yes.

In healthcare today there is much being made of the need to respect patients, to treat patients with respect, to respect the patient voice. So I wondered, why all this talk about respect for patients?

There is some talk of the need to respect doctors. They get do it automatically by virtue of their life and death skills and a long tradition but patients are increasingly challenging their doctors.  There is little talk of the need to respect nurses and other frontline staff who provide crucial hands on care, but there should be.  So it just seems mostly to be about patients and how they should be treated.

Does the need to focus on respect for patients mean there is a regrettable lack of it and everyone in healthcare needs to be reminded?  Didn’t mama teach us to respect people? But patients are people. Hmmm…. or maybe they aren’t. People that is. In the eyes of healthcare.

Are Patients People in the Eyes of Healthcare?

It doesn't help that when we come for health care we are often at our most vulnerable, in pain, afraid, possibly dying.  This exposes our weakness and our mortality. And none of us is that comfortable with being defenceless or even mortal. So as humans, I think we feel the need to distance ourselves from vulnerability and death. And one way to do so, is to see those who are sick, in pain, or dying as something slightly different from us... as patients.

The healthcare professionals who deal with us know we are people of course. How can they not? They, themselves, are often on the other side of the bed, as it were.  For our healthcare colleagues it is a challenge to be empathetic and not get sucked into an emotional maelstrom - hence the need for professional distance. But still, when those caring for us professionally wrap us up tightly in our role as 'patient', it is harder to see the person at the centre. 

This is one of the challenges of patient-centred care.

When Patients Become Advisors 

There is a difference between a patient and a patient advisor. When patients move to sit as advisors with professionals on the same side of the table, how are we to be viewed? 

It is in relation to the relatively new advisor role where much ink is expended talking about respect.

I wondered about what respect is, what it means in the context of advising and why all this talk about the need for it.

How Are Patient Advisors Viewed?

As people, are we respected?

I think that most have a feeling of respect or perhaps awe for those of us who have gone or are going through tough stuff and are still standing. I think it is a normal human response. "Wow! You climbed Mt. Everest, you survived a brutal accident, you are struggling through cancer..." and so on. The corollary is "I'm not sure I could and it scares me."

As advisors, are we respected?

From many of our healthcare colleagues there is a genuine gratefulness for our willingness to participate in spite of our sometimes significant trials and tribulations with our health and the healthcare system. And some of our colleagues see advisors as unruly and ungovernable and are wary of working with us.

As more and more of us become advisors, healthcare professionals wrestle with how to deal with us...

• As patient advisors, does professional distance continue to apply when we are now in the role of advisor -- or where we may have been the caregiver and not the patient at all?
• Are we scary, emotional creatures who need to be controlled with a separate set of rules carefully wrapped up in respect so as not to offend?
• Are we truly colleagues? And if so, how does that work?

I think, however, when the healthcare world talks about respecting patients, it is often around our role as patient advisors.

How Are Patient Advisors Treated?

How we are treated depends in part on how we are engaged. As patient advisors we contribute in different ways:

• Telling our story 
• Sharing our experience
• Contributing our expertise

There are the stories within our experience. There is the experience of our entire journey. And then there is what we have learned from our encounters, our journey, and our learning about health and healthcare.

Does telling our story lead to respect?

We did not chose our health issue or "work" at it, it just happened. We can provide you our stories to use as -- your inspiration, your context, your data -- and expect to be treated with common courtesy when doing so. In many cases, telling our story requires the courage to share the deeply personal, and that is honoured and respected.

There is another level of respect. Beyond the feeling of respect, there are actions that demonstrate respect.  

If as a listener, I commit to learn from the stories and then make changes for the better, I show respect in my actions. 

We tell our stories to drive action. In my view, respect shown in actions is much more powerful than respectful feelings. It shows respect for our intent and goal.

Does our experience warrant respect?

Stories are episodes. Our experience is often a collection of stories across our journey. We can and do describe our journey across silos, beyond the purely clinical encounters and across time -- sometimes decades.

Our experience has a rich narrative that exposes the nooks and crannies of the healthcare system in ways our colleagues, bound inside their silos do not experience. This information has value and is unique to the patient point of view. 

Like with our specific stories, the ultimate respect comes from the system changes that are driven out of our perspective.

Does our expertise inspire respect?

When we first share our story or experience, we often rely on our colleagues to sort out the wheat from the chaff. 

When we become more knowledgeable and more skilled, we can contribute our insights to our perspective. Our experiences form the basis of our insights. We also bring our life experiences - our work, our activities -- to inform how we understand and solve problems. Some of us have amazing expertise outside healthcare to offer. Many of us read and learn about the healthcare system and health issues. We listen to and seek out the experiences of our fellow patients. 

We aren't all able to analyze and talk about our experiences well. It is not automatic. This is often a new skill for us. We need to learn to harness our experiences in service of the work we do as advisors.

Our expertise is our ability to articulate our understanding of our experience of care and our observations of the healthcare system in the context of all we've learned. And this expertise varies from person to person.

In sharing our insights and ideas and having them judged on their merits, we hope to be respected as peers in the quest for better healthcare. 

The Challenges with Respect

It is hard to exhibit respect for our contributions when the expectations of us are not clear.

Most engagements do not specify what is expected from advisors. There are no clear cut expectations of us in terms of our capacities.

So the unstated expectations often clash with what we, as patient advisors, can contribute.  Are we to tell our story - which story and why? Are we to discuss our journey - does it map to the issues at stake? Are we to collaborate - does our expertise match the issue in content and depth? 

We are not all the same. It takes work and expertise to ensure the right person for a team or engagement. 

Not clarifying expectations and not troubling to get to know us well enough to make a good match -- these are all indications of lack of respect. 


It is hard to demonstrate respect when the need to control us and what we say dominates how we are engaged.

Just as we are not often sure what we can offer beyond retelling our story, so our colleagues are groping for how to use us as advisors. 

This uncertainty leads to some interesting ways of engaging us which runs the spectrum from...

• Using us to provide the appearance of engaging patients for communications purposes
• Framing the discussions so tightly we cannot say what we want or discuss what matters to us
• Ignoring us at meetings and hoping we don't actually speak
• Wanting us to only recount our story and now the patient will be quiet
• Fawning over us and making much over anything we say or do whether it's of merit or not just because we are health challenged
• Embracing us a colleagues with a different but valuable perspective

Using us as token patients, being insincere in dealing with us, controlling our input -- these are all marks of disrespect.  These may be genuine experiments in engaging patients but they come with a side effect of lack of respect.

Respect in Action

So how do actions translate to respect in my view?

As an advisor, I have been most respected when, for example ...

• My comments and ideas are discussed on their merits
• It is a matter of course that my obvious knowledge gaps are filled in so that I can contribute meaningfully
• I am introduced in the same way as the others are and not called out specially as exhibit A: the patient advisor
• Others counter my ideas without worrying about offending me
• My life experiences in work and elsewhere are known and considered an enriching bonus
• My expenses are covered even if my time may not be compensated
• I'm kept in the loop on relevant information like meeting changes

In short when I'm just one of the gang around the table working on an issue, I am respected as an equal.

And On the Other Side

Respect is a two-way street.  

We, as patient advisors, need to respect the expertise and deep knowledge of our healthcare colleagues.

There is a temptation to be self righteous about our experiences and any harms done to us. We don't know best but we do have much of value to contribute. If we are to work together for the common goal of improving healthcare one project, one policy, one change at a time, then we all need to feel respect for each other and consciously act in ways that demonstrate respect.  This starts with listening fully with an open mind and heart to each other.

Respectfully yours