I have spent a lot of my career working with frameworks, toolkits, models of practice, and educational resources. I believe in them. I create them. I use them. I teach from them.

I have also become increasingly cautious about what we expect them to do.

A good framework can give us language for something we have struggled to name. It can bring research, lived experience, and practice knowledge together. It can establish shared commitments and help us notice things our systems and sometimes we ourselves have overlooked.

But a framework cannot make us relational. It cannot make us curious. It cannot make us listen. And it certainly cannot tell us exactly what the person sitting across from us needs.

That part happens in practice.

And practice is much messier.

There is a phrase we use all the time in healthcare: “We need to meet patients where they are at.”

I have used it myself. But the more I think about it, the less comfortable I am with it.  Can we really meet someone where they are?

I don’t think we can.

I can sit beside someone. I can listen. I can believe what they tell me. I can become curious about their experience. I can acknowledge what I don’t understand and resist filling those gaps with my own assumptions.

But I cannot arrive at exactly the same place they are standing because I didn’t travel the road that brought them there.

Their history is not mine. Their body is not mine. Their experiences of illness, disability, healthcare, discrimination, family, loss, safety, and trust are not mine. Even when parts of our experiences appear similar, the paths that brought us there are different.

Perhaps our responsibility as healthcare professionals isn’t to meet patients where they are at.  Perhaps it is to recognize that they are somewhere we have not been and become curious about what it took to get there.

That distinction matters. It shifts us from assuming we understand to asking what we don’t yet know.

I learned this before I had language for it

Long before I was developing frameworks or thinking deeply about relational practice, I experienced this from the other side of healthcare as Sophia’s caregiver.

Sophia lived with a rare and complex disease. Not everything she experienced had an obvious clinical explanation. Pain was one of those things.  There were times when she was clearly in significant pain, but no one could easily explain why. Was it physical? Emotional? Psychological? Related to her disease?

Those were legitimate clinical questions.  But I also knew something:

My daughter was in pain.

I knew what Sophia looked like when she was hurting. I knew the subtle changes in her face and behaviour. I knew her patterns. That knowledge wasn’t written in her chart or produced through a clinical assessment. It came from years of loving her, caring for her, watching her, and learning her.

Sometimes we had to fight very hard for that knowledge to count.  What we needed wasn’t for someone to “meet us where we were at.”   We needed people willing to come toward us with curiosity:

• Tell me what you’re seeing.
• What is different today?
• What have you learned about her pain?
• What do you think we might be missing?

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Those questions don’t diminish clinical expertise.  They expand it.

What a missed appointment doesn’t tell you

There is another experience with Sophia that I think about often, particularly when I hear healthcare professionals talk about engagement, adherence, or missed appointments.  There was one specialty clinic where I rarely managed to get Sophia to her appointments or sometimes, we arrived but couldn’t stay for the entire visit.  It wasn’t because that part of her condition wasn’t important. It wasn’t because I didn’t value the specialist. And it certainly wasn’t because I wasn’t engaged in her care.

The reasons were far more complicated.

The clinic was in an older part of the hospital that was awkward to access from the underground covered parking we relied on. That might sound insignificant until you imagine navigating a hospital with a child in a wheelchair, oxygen tanks, medications, feeding supplies, and everything else that travelled with us.

Sophia’s health was compromised. The waiting room was often packed with children coughing and sneezing. For me, sitting there meant calculating what an ordinary respiratory infection could mean for her.

There was little privacy. Intake questions could be heard by everyone around us. As a queer family, there were times when that lack of confidentiality made us particularly uncomfortable.

And then there was time.

I appreciated that we were in a teaching hospital and understood the importance of medical students and residents learning. But we were also a family trying to stack specialist appointments whenever possible not for convenience, but because managing healthcare had become a significant part of managing our lives.

Every visit involved calculations largely invisible to the people waiting for us inside the clinic:

• How much oxygen remained in Sophia’s tanks?
• When did she need medication or a feed?
• Where could I do those things safely and privately?
• Would we make the next appointment?
• How much work would I miss?
• What would travel and parking cost?
• How much energy did Sophia have left?
• How much energy did I have left?

A half-hour appointment could become three hours when multiple learners saw Sophia before the specialist.  Three hours wasn’t simply inconvenient. It affected oxygen, medications, feeds, other appointments, and Sophia’s ability to tolerate the day.

We were exhausted.  Yet I don’t remember anyone asking:
“What makes it difficult for you to get Sophia here?”

From the system’s perspective, we were a family repeatedly missing appointments.

From inside our lives, I was making a risk-benefit decision every time:
Is the value of this appointment today greater than the physical, logistical, financial, and emotional cost of getting Sophia there?

Sometimes the answer was no.  That wasn’t disengagement.  That was caregiving…
 
And then we ended up in Emergency

Eventually, Sophia ended up in Emergency in crisis. Part of what was happening intersected with the specialty whose appointments we had struggled to attend.  The specialist came to see us with a learner, and very quickly the missed appointments entered the conversation.

I don’t remember every word. I remember how it felt.  The language, tone, and energy seemed to carry the same message:

You missed these appointments. This is part of why you are here. And now this is what you must do.

We felt admonished. We felt shamed. We felt responsible.  And context was almost entirely absent.  Sophia was about six months from the end of her life. By then, our priorities had changed dramatically. We were increasingly living in what I came to think of as the breathing, bleeding, broken bones stage of her care.

• Could she breathe?
• Was she bleeding?
• Was something broken?
• Was she in pain?
• What did we need to deal with today to get her through today?

There were many important aspects of Sophia’s care. But when you are caring for a medically complex child whose health is deteriorating, everything cannot remain the highest priority at the same time.  That particular specialty simply wasn’t in our eyeline during that crisis.  That didn’t mean we didn’t care.

Other things had become more urgent.

And sitting in Emergency, while our child was in crisis, was not the time or place to account for our previous attendance. 

What I don’t remember hearing were questions like:

• What has been happening for your family?
• What matters most for Sophia right now?
• What has made accessing our clinic difficult?
• Could we provide this care differently?
• What do you need from us right now?

None of those questions would have changed the clinical concern.  But they could have completely changed the encounter.

No one asked how the clinic itself might adapt. The assumption seemed to be that we needed to do better at getting Sophia to them.  No one seemed to consider whether they could do better at getting their care to Sophia.

That difference has stayed with me.

A fact and an interpretation are not the same thing

I think about this experience when I hear words like non-compliant, disengaged, frequent no-show, or difficult to reach.
A missed appointment is a fact.

“Disengaged” is an interpretation.

And interpretations can become stories about people. They enter charts, travel between providers, and influence how the next healthcare professional enters the room.  Before long, the patient or family can become the problem rather than someone experiencing a problem with accessing our system.

The goal isn’t to replace one assumption with another. It is to remain curious long enough to find out.
Instead of asking, Why won’t this patient engage?, we might ask:

• What don’t we understand about this person’s circumstances?
• What does it take for them simply to access our care?
• What competing priorities are they managing?
• What assumptions are we making?
• What could we change?

That last question matters.

Who actually needs to move?

This is why I struggle with “meeting patients where they are at.”  The phrase subtly centres the health care professional and/or team who are positioned as the stable point, travelling toward the patient. And too often healthcare then defines where the patient is: not ready, resistant, non-compliant, not engaging.

When I think about Sophia, I find myself asking:
Who actually needed to move?

Could every appointment have needed to be in person? Could we have bypassed a crowded waiting room? Could sensitive questions have been asked privately? Could the number of learners have been negotiated? Could there have been somewhere to manage medications and tube feeds?

And as Sophia became sicker, could someone have asked:
Does what our specialty considers a priority still align with what matters most to Sophia and her family right now?
Every specialty understandably sees the importance of the area it is responsible for.  Patients and families live all of those areas at once.  Something can be clinically important and still not be the most important thing right now.  That isn’t rejecting care.  Sometimes that is what prioritizing looks like from inside a person’s life.

This is where frameworks matter

I continue to believe deeply in frameworks but perhaps differently than I once did.

A trauma-informed framework can remind us to consider safety, trust, choice, and power. A strengths-based framework can help us notice capability rather than beginning with deficits. A relational framework can remind us that what happens between people matters. An equity-oriented framework can help us ask whose knowledge is valued and who is continually being asked to adapt.

But the framework cannot tell us what those things look like for the person sitting in front of us.  The framework might tell us to improve access.

Practice asks us to understand what “access” looks like from a wheelchair, with an oxygen tank and feeding supplies, while worrying about infection and watching the clock.

The framework might tell us to centre patients and families. 

Practice requires us to believe they hold knowledge we don’t.

The framework might tell us to “meet patients where they are.”

Practice requires us to acknowledge that we may not actually understand where they are at all.
The framework isn’t the practice

Over time, I have become less interested in whether someone can recite the principles of a framework and more interested in what happens when those principles become inconvenient.

What happens when a patient says no? When a family challenges our interpretation? When lived experience conflicts with professional assumptions? When someone tells us something we designed to be accessible isn’t accessible to them?

Those are the moments when our values become visible.

Embodied practice can look surprisingly ordinary:

• Pause before interpreting someone’s behaviour.
• Ask rather than assume.
• Notice whose knowledge is missing.
• Ask, “What matters most right now?”
• Be willing to change the plan.
• Recognize when professional authority is taking up too much space.
• Repair when we get something wrong.

No toolkit can guarantee those things.  But a good framework can create the conditions for us to practice them.

Creating possibility, not prescribing practice

I think of frameworks as scaffolding.  Scaffolding gives us something to hold onto while we build. It provides structure and orientation.  But the scaffolding isn’t the building.

The framework isn’t the relationship. The toolkit isn’t the practice. And completing the training isn’t the transformation.

Eventually, the principles have to leave the page and enter the complicated, imperfect, relational world of people.
The frameworks I value most don't prescribe a single right way of being.

They create possibility.

And perhaps most importantly, they remind us that we are not experts on someone else’s journey.

I don’t think we can truly “meet patients where they are at.”  We haven’t travelled their road.  But we can move toward them.

We can listen. We can become curious about what we don’t understand. We can ask what matters most right now. We can bring our expertise without assuming it is the only expertise that matters.

And sometimes, rather than asking patients and families to move toward the system, we need to ask what the system could move, change, or let go of to make care more possible.

So rather than asking only, Are we following the framework?, I find myself asking:

• What is this framework helping me notice?
• What am I assuming?
• Whose knowledge am I privileging?
• What don’t I understand yet?
• What is being asked of this patient or family simply to access our care?
• What could we change rather than expecting them to change?
• Am I willing to let what I learn change how I practice?

Because a framework should never be the end of our thinking.

It should create possibility not prescribe a single way of being.

And perhaps the real measure of a framework isn’t whether we can demonstrate that we implemented it. 
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Perhaps it is whether, because of it, we notice differently, listen differently, relate differently, and ultimately practice differently.

What caregiving taught me about uncertainty, trust, and the knowledge we bring into healthcare.

My understanding of relationships as infrastructure did not begin in a boardroom, a research project, or a health system strategy.   It began as a caregiver.

When my daughter Sophia was living with a rare and complex disease, I learned that navigating healthcare was about much more than finding the right clinical intervention. It was also about navigating uncertainty, different perspectives, clinical expertise, systems, and relationships.

And sometimes, the most important thing a healthcare professional could offer us was not an answer.  It was a willingness to stay in the uncertainty with us.

One of the clearest examples was Sophia's experience of pain.

There were periods when Sophia was clearly in pain, but we did not understand why. There was no straightforward explanation. No single test that could tell us where the pain was coming from. Her rare disease was complex and, at times, difficult to understand even for the people caring for her.  From my perspective as her caregiver, however, there was something I did understand.

I knew my child was in pain.

I knew her baseline. I knew how she moved, how she communicated, how she behaved when something was wrong. I knew the subtle changes that could be easy to miss in a clinical encounter.  But knowing that she was in pain and being able to explain why she was in pain were two very different things.  And that difference created enormous tension.

We had many difficult conversations about what her pain meant. Was it physical? Was it related to her underlying disease? Was it emotional? Psychological? Was there something we were missing?  There were also significant discussions and resistance around the use of medications, including methadone and other approaches to managing her pain.

I could understand why those conversations were complicated for clinicians. Without knowing the source of pain, there were legitimate questions about what we were treating, what risks we were taking, and whether medication was the right approach.  But for us as a family, there was another reality that could not be put aside:

Sophia was hurting.

We found ourselves repeatedly advocating for that reality to be recognized, even when we couldn't provide the explanation that people were looking for.  That experience taught me something I have carried into my work ever since.

Uncertainty makes relationships more important, not less

Healthcare systems are often designed around the idea that the right information will lead us to the right answer.

• But what happens when the information is incomplete?
• What happens when the tests don't explain what the person is experiencing?
• What happens when clinical expertise, lived experience, and uncertainty don't immediately align?

These are some of the moments when relationships become infrastructure.  When there is uncertainty, trust becomes essential.  A clinician does not have to agree with a family about every decision to remain in relationship with them.  A caregiver does not have to have the clinical explanation for their observations to be worthy of consideration.

Both can hold expertise.
Both can be uncertain.
Both can ask questions.

And both can continue working toward understanding.

For me, the most important shift is from asking "Who is right?" to asking "What are we missing?"

That is a very different starting point.  It creates room for curiosity rather than defensiveness.  It allows clinical expertise to remain important without dismissing the knowledge that comes from living alongside a person every day.  And it recognizes that sometimes the most responsible thing we can do is acknowledge that we don't yet know.

Caregiver knowledge is knowledge

As Sophia's caregiver, I became deeply aware of the difference between being present in healthcare and being recognized as part of it.  I could not always explain the medical reason for what Sophia was experiencing.  But I knew her.  I knew what she looked like when she was comfortable.  I knew what she looked like when something had changed.  I knew the difference between distress, fear, frustration, exhaustion, and pain as I had come to understand them through years of caring for her.

That knowledge didn't replace clinical expertise.  It complemented it.

This distinction matters.

When we treat lived and caregiving experience as secondary to professional expertise, we can unintentionally create a system where people have to prove what they know before they are listened to.  And when someone is living with a rare or complex condition, that can be particularly harmful.  The people closest to them may be carrying knowledge that the health system does not yet have.  Sometimes that knowledge is the beginning of the clinical question.  Sometimes it is the thing that helps a team notice something they might otherwise miss.  And sometimes it is simply the knowledge that something is wrong, even when we don't yet know what that something is.

Relationships don't require agreement

One of the lessons I continue to carry from those experiences is that relational practice does not mean agreeing with someone.  It doesn't mean that clinicians should automatically accept every interpretation offered by a patient or family.  It doesn't mean that families should always get the intervention they request.  And it doesn't mean that difficult clinical conversations can be avoided in the name of being relational.  Quite the opposite.

Good relationships make difficult conversations possible.

There were times when we had to sit across from healthcare professionals and have very difficult conversations about Sophia's pain and how it should be managed.  Those conversations could be uncomfortable.  There were different perspectives.  There was uncertainty.  There were legitimate clinical concerns.

And there was our lived experience of watching our child suffer.

What mattered was whether we could remain in the conversation.

• Could we ask one another questions?
• Could we acknowledge what we did not know?
• Could we explain our concerns without assuming bad intent?
• Could we hold the possibility that more than one thing might be true?

 Those questions are not just relevant to pediatric care of complex disease.  They are relevant to healthcare everywhere.

​The relationship changes the experience of uncertainty

Looking back, I don't think the most meaningful relationships were necessarily the ones where someone always had an answer.  They were the ones where we didn't feel that we had to navigate the uncertainty alone.  That distinction has stayed with me.  Because relationships don't necessarily remove complexity.

They change how people experience complexity.

A family may still be waiting for answers.

A patient may still be experiencing pain.

A clinician may still be uncertain about the cause.

A treatment decision may still be difficult.

But when there is trust, people can experience those things differently.

• They can ask more questions.
• They can share more information.
• They can acknowledge fear or disagreement.
• They can say, "I'm not sure."
• They can say, "Something doesn't feel right."
• They can say, "I don't agree."

And they can continue the conversation.

That is not a small thing.

Relationships are infrastructure

We often think of infrastructure as the things that hold systems together: policies, technology, buildings, processes, pathways, and resources.  But systems are ultimately experienced through relationships.  A policy is interpreted by a person.  A clinical pathway is navigated by a patient and family.  A research project is shaped by relationships between researchers, participants, partners, and communities.  A healthcare decision happens between people.

The quality of those relationships influences what information is shared, what questions are asked, what concerns are raised, and what possibilities become visible.

This is why I have come to think of relationships as infrastructure.   Not because relationships should replace evidence, expertise, accountability, or good systems.  They shouldn't.  But because those things don't exist independently of people.  Relationships create the conditions in which expertise can be shared, uncertainty can be acknowledged, disagreement can be navigated, and learning can happen.

From caregiving to practice

My experience as Sophia's caregiver continues to influence how I approach my work.  It reminds me that behind every chart is a person whose experience may not be fully captured by the information in front of us.  Behind every clinical decision may be a family carrying knowledge, fear, questions, and years of experience.  And behind every healthcare professional is a person who is also trying to make sense of complexity with the information and resources available to them.

Relational practice asks us to bring those forms of knowledge together.  It asks us:

• To remain curious.
• To notice power.
• To listen beyond the immediate question.
• To make space for uncertainty.

And, perhaps most importantly, to resist the urge to reduce a person or an experience to the explanation that is easiest to understand.

Sometimes we don't know.  Sometimes we won't know for a while.  Sometimes the person experiencing something knows that it is happening before anyone can explain why.  Those moments require more than a pathway or a protocol.  They require people who are willing to stay in relationship while they work toward understanding.

What we build together

Relationships are not a soft addition to healthcare.  They are not the nice thing we do if there is enough time.  They are part of the infrastructure.  They are built through listening, consistency, curiosity, accountability, repair, and trust.  They are strengthened when we recognize that different forms of knowledge can coexist.  And they become particularly important when certainty is unavailable.

I think often about the experience of being Sophia's caregiver and how different healthcare encounters could feel depending on whether we experienced the person across from us as someone we needed to convince—or someone willing to be curious with us.  The clinical questions did not disappear.  The uncertainty did not disappear.  The pain did not disappear.  But the experience of navigating those things could change.
And that, to me, is the power of relational practice.

The relationship may not change the complexity of what a person is facing. But it can change how they experience it and what becomes possible within it.

Perhaps, then, when we think about building better healthcare, better research, and better systems, we should ask not only:  What are we building?

But also:  What relationships are we building along the way?

Because those relationships may be some of the most important infrastructure we create.

 Self Compassion versus Self Care

I wrote this blog some time ago, however, the subject around self care versus self compassion keeps popping up both personally and professionally lately so I felt the need to re-post.

Professionally, when organizations are going through change or transitions, managers can and do become overwhelmed with responsibility for both the operational shift and the people management of their staff.  It is easy to go home late, exhausted, reactive to one's family.  The idea of self care just adding to the list of to do's in our world.

I was having coffee with a dear friend and colleague one morning when the question came up around self care and what am I doing for my own self care.  And let me tell you, it was a trigger…boy, was it a trigger.  I am sorry, dear friend!

In living grief, especially as a parent/family care giver you are, hopefully, surrounded by many many people who have the right intention of making sure you are taking care of yourself.  You know the saying, “put the oxygen mask on yourself first”.  Bless them!

Self care has become a necessary focus as family care givers burn out on these profound journeys of ongoing loss.  We are looking after our family members more and more at home and for longer periods of time with more medical complexity than ever before.

I have been caring for my daughter and her life limiting, life threatening condition now for over 15 years.  It has always been a challenge to be conscious of my own well being; physically, emotionally, mentally, spiritually as her journey and condition deepens.  But now, traversing into what is deemed ‘palliative’ care or ‘comfort’ care due to a significant and somewhat sudden shift in her condition, it almost feels impossible.

Thus my whole ‘fuck self care’ moment this morning.  I know everyone is well intentioned.  I get that ensuring I am ‘ok’ and looked after is important.  The reality is, I am NOT ok. I know that my metabolic system is screwed up. That I am over weight, that I lack a good nights sleep.  That I can barely get food down without incurring such excruciating pain from reflux. That I walk around with the fear of loss etched on my face, grief looming over my shoulders.  

This is the reality of living grief…

Try as I might to eat healthy, keep hydrated, meditate in the bath each night, get outside in my garden, seek counselling or a reprieve with friends, it is never going to be enough to abate the churning pain and devastation of watching your child die.

It is never going to be enough…and where I am at today, you can’t convince me otherwise. But asking me over and over again, be it a health care worker, a counsellor, a friend, a family member, clergy about my ‘self care’…just adds to the stress and can be quite overwhelming. It just doesn’t help. 

Great, one more person I have to answer to, or one more thing to add to my already overwhelming, exhausting, stacked plate. Fuck self care

At the same time, I am not saying self care isn’t important.  It is! But it has to be on your terms in a way or form that not only you can manage but that resonates with you…on the inside, not the outside.

Self care in living grief is so much more than what you eat, how much you exercise, how long and how often you meditate.  It is about self compassion.

My dear friend, who’s got a decade on me, understands that self care is only dangerous when you close yourself off, when you shut down, push back, tuck yourself away from the overwhelm.

True self care…if we are going to keep calling it that, is when you allow yourself to remain open, porous, vulnerable.  It is in remaining open that you will be fed, you will be walked, you will be nurtured, hydrated, tended to emotionally, physically, mentally, spiritually.  That is true self compassion in living grief.

“The strongest love is the love that can demonstrate its fragility”, Paul Coehlo

It isn’t easy to stay porous, to be vulnerable, show fragility.  I really didn’t think I could become any more vulnerable until a few months ago when my daughter didn’t wake up for several days.  I didn’t think it could get worse, that I could possibly become more fragile as I sat vigilant next to her bed in our paediatric hospice.  But I did…my vulnerability deepened and my needs for ‘self care’ extended beyond the physical. I wept spiritually, my heart and soul drowned in tears of pain.  It was an epiphany; self compassion reigns in these moments, it has to.

“We cultivate love when we allow our most vulnerable and powerful selves to be deeply seen and known, and when we honor the spiritual connection that grows from that offering with trust, respect, kindness and affection.” Brene Brown

In that moment, it was my long time friend, Angela, chatting with me in the hospice library; it was my dear friend, Tracy, texting me her own crazy life; my other friends inviting me out for drinks, tea, coffee, walks.  It was the staff and volunteers at Canuck Place Children’s Hospice who with grace, and kindness met me at my place of fragility, walked with me through the deepening vulnerability of living grief that truly supports the degree of self care such a journey requires.
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I am lucky to have my dear friend, her wise words, her conditional love for my well being.  And for the select few beautiful, generous, kind souls who I’ve become spiritually connected with.  Because even if I want to fuck self care, they don’t let me…and know it runs deeper; it's about self compassion.

Check out another great blog from my dear friend and colleague, Kat Thorsen on Self Care versus Self Compassion, as well.

What does Self Care / Self Compassion mean to you? Come join the conversation!
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