PAQS - What Matters To You 2019

What Matters To You 2019

Blog 1
WHAT MATTERS TO YOU MATTERS TO ME

Blog 2
HOW WMTY STARTED

Blog 3
WHY “WHAT MATTERS” REALLY MATTERS…

Blog 4
SMALL THINGS MATTER.

Blog5
HOW WMTY-DAY STARTED. FROM HEART TO HANDS

Blog6
WHEN "WHAT MATTERS TO YOU?" BECOMES REALLY PERSONAL

Blog 1 - What Matters to You Matters to Me

Maureen Bisognano

Every year on June 6^th I celebrate “What Matters to You?” day with people from around the world. It’s not that we don’t ask, listen and act every day, but the coming together of our commitment to flip from caring for to caring with really matters to me. And on this day, we celebrate the daily changes, large and small, that are making a cultural difference in health care.

I’m the oldest of nine children, a big loving Irish family. My brother, Johnny was diagnosed with Hodgkin’s Disease in his late teens and his health failed over the next years. I remember the day that what mattered to him changed our lives. He was hospitalized, and the physicians came in to make rounds. They spoke of new tests, more chemo, a longer stay and more. After the physicians left, one doctor came back into Johnny’s room, and he asked my brother “Johnny, what do you want?” My brother said, “I want to go home.” The physician took my jacket off me and put it over Johnny’s frail 85-pound shoulders and he picked him up and carried him to my car, breaking every rule to do what mattered most. I had learned the power of asking what matters in this poignant moment, and when we got home, I asked Johnny “what do you want?” He said, “I want to be 21.” The next few weeks at home were magic. Johnny turned 21 on November 25^th and he died on December 1^st, but those weeks will be treasured always. His friends came to share memories and we all let Johnny know what he meant to us. We laughed and cried with him, and he was so grateful to be at home with us. The physician who came back and asked the question is my hero. He gave my brother a good death and he gave the time to love Johnny as we wanted to. He changed my thinking and my career.

Blog 2 - How WMTY Started

Maureen Bisognano
Several years ago, I read an article by Susan Edgman-Levitan and Michael Barry, “Shared Decision Making-The Pinnacle of Patient-Centered Care” and one line in this New England Journal of Medicine article resonated deeply with me. In the piece, the authors say that we can’t only ask a patient “what’s the matter?” We also need to ask, “what matters to you?” At the IHI/BMJ International Forum a few weeks later in Paris, I challenged the thousands of clinicians and health care leaders in the room to do just that. And they did. From Jen Rodgers in Glasgow to Anders Vege in Norway to Shaun Maher in Scotland and Kris Vanhaecht in Belgium and Isabela Castro in Brazil and so many more, these amazing and compassionate people found that asking patients and their team members “what matters to you?” changed the way they designed care with patients and families and gave them new meaning in their work each day. They found each other and began to share the experiences and enthusiasm as they built this question into their daily work. And their energy started a movement, beginning in Norway on a June day in 2014. Since then, these leaders have built a global strategy to honor the power of the question on June 6^th each year. Last year, tens of thousands of people from over 2000 organizations in 31 countries around the world shared in the passion that comes from compassion and kindness. The stories from this day fill my heart with joy. Galina Gheihman and Cynthia Cooper, two physicians at Massachusetts General Hospital developed the Kind Care Bundle. They noted that we have ventilator bundles and central line bundles, but nothing is so important as kindness. Take a few minutes and watch this video on what can happen when you ask, “what makes a good day for you?”

Kindness and compassion might seem like asking more than you can give, but I challenge us all to take the first step and join us! June 6^th, 2019 … together, we can change the world.

Blog 3 - Why “what matters” really matters…

Shaun Maher - Scotland
Sometimes you might hear people talk about the relational aspects of health and social care as “nice to do” but not essential. The thinking is, that when the chips are down and things get really busy we just need to focus on the tasks and targets – that’s what really matters! This is serious mistake.

So, what is it about “what matters to you?” conversations and relational care that’s so important? When we focus on the things that are important to someone we become attuned to what they really need and want. When we become attuned and understand what really matters to a person it helps us to focus our time and energy on those things and means we can often stop doing the things that don’t add value for the individual. This usually enhances the quality of care and the quality of experience for the person concerned.

If the things we do aren’t adding value for the person then that is wasteful, and when time is short or resources are tight, the last thing we want to do is be wasteful. Focusing on what really matters helps us to reduce wasteful activity and maximises opportunities to help the person to live life in a way that is meaningful and significant to them.
The other important benefit from the “what matters to you?” approach, perhaps the most important benefit, is that it creates a relationship, a connection with another human-being which in turn generates trust. Trust is the cornerstone of healing, generative therapeutic relationships. Without trust wounds heal more slowly, pain is intensified, loneliness becomes more unbearable. Trust is the X-factor that leads to better outcomes for the person being cared for and the “what matters to you?” approach

powerfully builds trust. Not only does it lead to better outcomes for people being cared for, but it also helps to generate deeper more meaningful connection to work for health and social care professionals.

This cycle of attentiveness, attunement and trust, resulting in improved outcomes, is described as “the virtuous circle of person-centredness” by Ballat and Campling in their book “Intelligent Kindness”¹ and is well worth a read if you interested in exploring this concept more deeply. But in the meantime what we need to remember is that when things get busy and we start to feel the pressure – focus on what really matters. That’s what really matters!

¹Intelligent Kindness: reforming the culture of healthcare (Ballat and Campling 2011)

Blog 4 - Small things matter.

Shaun Maher - Scotland
As we have talked to people all over the world about their “what matters to you?” conversations we have noticed some interesting themes. One of the most common things people notice is that small things seem to make a really big difference. Of course, this is not a new phenomenon and we have perhaps often experienced this ourselves or heard it said by others. But why do apparently small, simple things often have such a powerful impact in health and care experiences? “She smiled as she spoke to me…”; “He always remembered that I like my tea in china mug…”; “They always brought me my tablets after 10am because that’s when I take them at home…”. How is it that such apparently inconsequential things seem to have a disproportionate positive impact on the emotional and physical well-being of people receiving care and support?

When Austrian psychiatrist Viktor Frankl was incarcerated in a concentration camp during the second world war because of his Jewish heritage he experienced and witnessed unimaginable suffering and pain. When he wrote about these events later in life¹ one of his many reflections was that the greater the suffering he was experiencing, the more a simple act of kindness was amplified. Small acts of kindness that would have passed barely noticed in normal life suddenly had enormous impact, generating feelings of hope and being valued as a human-being, to surge through his body. A morsel of mouldy bread flicked his way by a guard, a scrap of lice-infested blanket shared by a fellow prisoner, suddenly became endowed with transformative power!

Frankl’s hypothesis is that the greater the suffering of an individual, the greater the impact of an act of simple kindness, no matter how small it may seem to the benefactor. This perhaps goes some way towards explaining why entering into a conversation with a person and understanding what really matters to them, and then doing something about it, can be such a powerful intervention. The people we come into contact with each day are often dealing with great challenges in their lives, challenges which often come with intense physical or emotional suffering and pain. A conversation focused on the things that are really important to a person in such circumstances, no matter how small and trivial these things might seem to us, has the power to generate hope, a feeling of being a person of value and the power to transform. Even if sometimes we are at a loss to know what to do we shouldn’t forget the power of listening as an act of kindness in its own right – to know you have been heard and feel that someone really cares isn’t nothing! Small things matter.

¹Frankl, V. Man’s search for meaning. Beacon Press (1966) Originally published 1946

Blog 5 - How WMTY-day started. From heart to hands

Anders Vege - Norway
In 2014 we started two learning networks in Norway. We wanted to create better and more health promoting pathways for elderly and people with long term conditions. We had two interventions:

Implementing a system approach by a successful pathway pilot in Norway, "Patient Trajectory for Home-dwelling elders"
Changing direction in healthcare. Moving from asking "What’s the matter?" to "What matters to you?" This was inspired by my dear friend and mentor Maureen Bisognano.

The first reaction on the interventions was inspiring. The pathway appealed to the heads and asking "What matters to you?" moved hearts. 10% of all Norwegian municipalities participated.

The improvement teams came to the second session of the learning networks with frustration. Making health professionals ask "What matters to you?" was difficult. Health care professionals are educated and trained with small "What’s the matter-questions" and that gives us a picture of a diagnose or lost functions. Flipping to the other questions is hard training so we asked the improvement teams, do you think it would help to create a "What matters to you" day?

That gave energy and creativity for a change of direction. In 2014 we had about 30 municipalities participating. We invited them to ask for free badges with WMTY on, and share stories on our Facebook group "gode pasientforløp". The message was clear: do whatever creates energy and build a new conversation with your patients and users. And so, this amazing movement had started. The number of participants have grown year by year in Norway. This year we have activity in more than half of the Norwegian health care. And it’s all in the local hands of health professionals in municipalities and hospitals.

In the beginning a lot of health professionals were afraid of asking. They said "we cannot meet the needs they will put on our shoulders". Time has shown this to be wrong, just as in "shared decision making", the answer is often modest and about the need of being independent and being able to live home as long as possible. And that creates a climate for focusing on health promotion and training on everyday activities, to live home as long as possible. This is why "What matters to you" day matters so much. It opens our eyes for better health and better coping. Now some municipalities sais "in the beginning we were afraid of asking, and now we are afraid if we have not asked".

The Health and Care Department leads the board for our program. And we are so fortuned that our health minister, Bent Hoie, has promoted our WMTY day from the very beginning. Here in the middle with the former minister of elderly and public health, Aase Michaelsen. The program is organized by KS, membership organization for municipalities, and The Norwegian Institute of Public Health. Kristin Tveitnes (KS), to the left, does incredible work in communications for our program.

We in Norway wish you all a powerful and health promoting "What matters to you-day".

Blog 6 - When "What matters to you?" becomes really personal

Anders Vege - Norway
Two years ago my dear friend Shaun Maher from Scotland invited me to share my personal "What matters to me-message". I thought for a little while and found in my heart the true answer to the big question.

The question can find its way to the very deep of our heart, as well as being related to the practicalities of our daily life.

My three kids are off course the deepest answer to this question. Their daily life and coping changes everything. From joy to deep worries and the other way around. The love of my life is the best anchor for this roller coaster. My mother used to be an anchor too.

After she developed dementia we kind of had to switch roles. But the contact continued to be strong and our meetings were filled with her

wisdom and the way she managed to see the light in even the darkest days. It became clear to me when Shaun asked. Walking all the way through this pathway with my mom was what mattered to me. I often talked to her about my work. Meeting health professionals in Norway and talk about moving from asking "What’s the matter?" to "What matters to you?". One day I talked about this change in health care she responded intuitively and took both her hands to her stomach and said;

"Ohhh, I could feel this here. The first you said made me feel very little. But in the other question it was space enough for all of me."

Without knowing it, I think she nailed the differences of those two questions. "What’s the matter?" is perfect to find and set an illness, a diagnose. But those kind of questions have never been ment to find a whole person, and can therefore not be used to create person centered care.

I heard Maureen Bisognano from Institute of Healthcare Improvement, Boston speaking in Paris April 2014. My mentor and dear friend inspired me deeply, and we created a "What matters to you-day" in Norway two months later. One of the municipalities that joined the first "What matters to you-day" was my hometown. My mother recieved

health care in that town and the very same question inspired the services she recieved. Four years later the question was not "a day in June-question" in my hometown. In january 2018 she spent her last six days of life at Sandefjord medical center. And she was cared for by nurses wearing the wmty-badge every day at work. It was on their uniform, in their heart and in their hands.I don’t think "What matters to you?" can become as personal as it did those six days. So I could be her son and hold her hand.
I made a wmty-memo for her carers and it started with: Mom has 7 children, many grandchildren, and great-grandchildren. To mention the name of her children will comfort her: Ulf, Aashild, Kristin, Gunnar, Erik, Anders and Ingunn. Name everyone of them and say they love her deeply.

I wish you the best for your personal "What matters to you-day"