Beginnings

tree blossomAfter four years of wonderful work within a large healthcare agency, I’ve been feeling called to step out from the safety of a big organization and explore having more power over my voice, my time and my energy. Ever since I became so incredibly lucky enough to get my heart broken wide open over 10 years ago, what I have loved most to do is to work with others to  make things better, so I hope to keep doing that.

I’m not exactly clear where this new path is going and I’m giving it time to unfold. It’s a bit awkward when someone asks what I’ll be doing next and I have to struggle to find an answer; I’m ok with that. But the practicalities of the everyday world force me to put words around ideas.

For example, moments ago I hit the send button and submitted the registration of a new business, a necessary step to be able to do some work I’m being asked to do. As I completed the field on the form asking for a business description using the language of industry and commerce, it started to feel like I was ruining a great detective novel by skipping straight to the end. So I split the difference and let it be playful. I do hope that should anyone ever read the form, they will accept this description of the venture:

“The business will conduct consulting and training for leaders who work with development and innovation, with a focus on developing health and social services with patients, service users, their families and their advocates. Consulting services include project and process management, coaching and guidance, and planning and moderating conferences. Trainings will increase participants energy and ability to create positive change for society.”

To myself though, I describe it like this.

I choose to inhabit my days,
to allow my living to open me,
to make me less afraid,
more accessible,
to loosen my heart
until it becomes a wing,
a torch, a promise.

–Dawna Markova

It may not be good enough for a form, but it’s good enough for me. If either description sounds appealing, let me know and maybe we can find something fun and useful to do together.

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Hello, hello

It’s been so long since I shared any writing here that I need to say hi before diving into my own stuff. Hello. How are you? What’ve you been up to? Are you taking care of yourself?

Speaking of hello

Last week I took my son to a pre-surgery appointment at the hospital. We hadn’t even reached the main lobby and I was feeling anxious and stressed about the upcoming surgery, and frustrated that I had to take him out of school for a visit that we probably could do over the phone. A cloud of general dread was also hanging around mostly because of lingering emotions hanging around from the six weeks we had spent there last year, triggered by the smell of the parking garage and the sound of the music in the elevator hall. Let’s just say I was not my best self.

And then something happened. Sitting on stool off to the side behind the front desk, a janitor was chatting with the receptionist. As we approached, he looked at my son and greeted him by name. “Hey buddy, how are you doing?” I hesitated for a second and the man looked at me and said, “I remember him from when he was here before.” It was really remarkable.

While it’s really impressive that he remembered us, I thought even more about the fact that he said hello at all, and how that made me feel. Saying hello can seem like a token transaction, but really it’s a way to let others know that we see them. My shoulders loosened. I was reminded of the importance of kindness.

Hälsa means both health and say hello

There is a beautiful word in Swedish — hälsa. As a verb, it means to say hello or to greet. As a noun, it means health. The words are connected etymologically from the word hel, which means whole and even perhaps from helig or holy, sacred. To say hello is to wish someone wholeness and wellness. How wonderful to be reminded that all these words are connected! A simple hi can say much more than we think.

Bringing back hello to healthcare — The 10/5 Rule

I remember reading about hospitals in the US launching campaigns to bring back saying hello in health care environments. Inspired by the service industry, they began adopting the 10/5 Rule, or the Hospitality Principle, to help instruct their staff on how to provide courteous service through greeting. The 10/5 basically recommends that when within 10 feet (3 meters) of a guest or patient, staff should smile and make eye contact; when within 5 feet (1.5 meters), staff should say hello. This also means that staff should stop their conversation with each other in preparation to greet.

What does this mean for health care?

The 10/5 Rule, with its roots in companies like Walmart and Disney, can seem like an American attempt to commodify courtesy or institute robotic friendliness. At the same time, I know that my experience as a caregiver and patient matters. When I’m treated well, I also treat others well, which must be better for staff in the long run.

So much of what we’re doing in hospitals these days when it comes to improvement is really expensive. New buildings, new IT systems, more staff. As a parent and patient, I know what feeling invisible, afraid and alone feel like, and sometimes I think healthcare is missing out when it focuses on the big ticket items and skips over delivering common kindness.

Personally this has gotten me very curious about how I say hello, and what it means to those around me. I’m going to be experimenting with how I can sincerely show the people around me that I see them and care about them. I’ll keep you posted. Until then, bye!

Other resources for “Say hello” campaigns

Implementing the 10/5 Rule in Nursing homes

A video from Children’s Hospital of Pittsburgh

Here’s a very enthusiastic training video from ASMMC Medical Center

Reflections from Tufts University professor on the power of saying hello from Psychology Today

Amy Rees Anderson shares background on the evidence of saying hello from Forbes magazine.

39,000 feet

“If you promise to give it your all, I promise to make your life as interesting as possible. To give you something to look forward to every day.”

-Chaz Ebert to her husband Roger Ebert, on the relapse of his cancer. Life Itself (2014)

I am writing this somewhere between the US and Europe, 39,000 feet above the Atlantic Ocean, the churning vastness that has been the threshold for my personal reboot many times.

I wasn’t intending for this particular crossing to be more than a chance to eat peanuts and catch up on movies that get ruthlessly vetoed on family movie night. I’ve just finished watching Life Itself, the Steve James documentary about Roger Ebert, the beloved movie critic who influenced not only what I watch but how I think about films.

Steve James and his camera enter Ebert’s life after Ebert had already embarked on a journey with cancer, capturing the unfolding of a relapse which ultimately led to his death during filming. There’s much to say about the movie, but the thing that has me sitting here paralyzed in the dark airplane cabin for the last several hundred miles is what Roger’s wife and caregiver Chaz told Roger upon the cancer’s re-awakening. She recalls for James that upon receiving the news, she offered him a deal if he would muster up the energy to for another round of treatment:

“If you promise to give it your all, I promise to make your life as interesting as possible. To give you something to look forward to every day.”

It hurts me to say it, but if I’m totally honest I’m not the kind of mom who was wired to easily provide my children with something to look forward to every day. Not with my daughter, who’s neurotypical, or my son, who has a developmental disability and complex social needs. Sometimes it’s even hard to know what that might be, as I wrote years ago. I’m a good mom, I think, but that’s just not the way that my love comes out.

My mothering seeps out in other ways. Some days it is simply the effort of keeping a stable, daily life going. At my best times, it has had me quitting jobs to have more time to coordinate doctor’s visits and order medical supplies. Lately it has me tilting at the windmills of injustice, tackling the inequities that leave people like my son underserved, vulnerable and sometimes invisible. I’ve been an activist for causes relating to diability and health care for several years now, doing work that takes me physically and mentally far away from our home and leaves little time and energy left for even getting dinner on the table most days, let alone creating moments of wonderment and magic. I do it in part for other families who don’t have it as good as we do, but also in the hopes of creating a society that will be more able to help my son life a safe and meaningful life.

The idea that Chaz was proposing, to take responsibility for providing someone else’s reason for living—for making it interesting and delightful—made me squirm in my already uncomfortable seat. Because it’s occurring to me lately that that is exactly what I’m supposed to be doing for my son. With his limited agency and independence, I’m not sure that he has the ability to make it happen for himself. And if he doesn’t, who will? What good is the promise of a future life of meaning and joy if there isn’t one now?

In the developmental disability world, parents are often accused of not being let go of our children. But the fact is that they need us in a much more complex way than anyone wants to admit. Sometimes they need us to make interesting things happen. Or at least, hire, train and supervise the person who does. Sometimes we are their (only) friend. Sometimes that’s our fault. Sometimes it’s not.

What if Chaz Ebert’s contract is exactly the one I should be offering my son? What if instead of attending conferences and writing articles, I should be helping him look at the stars or collect shells on the beach? How do I give him the moments of wonder and delight that come so easily to my daughter? If I don’t, who will? What would it mean to take on the responsibility to create interest and something to look forward to every day? And given that that type of nurturing isn’t my nature, how do I personally sustain the energy to do that? And not just now, but maybe for years to come.

I doubt I will have the answer before I land. I plan to talk to my husband and those closest to us about how we can make a life full of wonder and joy for him. Full of things to look forward to. Full of days to look back on. Full of great days. For all of us.

Answering questions together

Last weekend I travelled to Washington DC to help create a new model for government-funded medical research. As a parent of a child with special needs who spends most of my time thinking about children with special needs, this 150-person patient summit was one of the most diverse groups of patient stakeholders I’d ever been part of. People representing arthritis, cancer, and kidney disease, people representing geriatric and pediatric issues, people whose medical issues came into their lives as a result of a tragic medical error or because of the body’s natural tendency to try new things.

We were invited there by an innovative organization, the Patient-Centered Outcomes Research Institute, or PCORI. Funded by the Affordable Care Act, PCORI aims to do research differently: to pair patients and researchers to answer questions that patients and families really care about. The idea of professionals doing work with patients instead of to or for them is reaching higher and higher levels of our nation’s health research priorities. In other words, this is a really big deal!

Even leveraging the collective lived experience of the attendees gathered by PCORI’s committed leadership, creating a research model that supports authentic partnership is going to be tough. Here are a few challenges I can see from my experience supporting patient-(and family)-professional partnerships on a number of levels and some ideas for addressing the challenges:

  • Challenge: Many professionals and patients don’t yet appreciate the innovation that patient-professional partnerships bring.

“We’re all patients,” is a common refrain from professionals when entering into collaboration with patients for the first time. That may be true, yet if that were enough, our health care system would have achieved a level of patient-centeredness that would render initiatives like PCORI unnecessary. Including people who are able work collaboratively while still retaining the unique vantage point of their own stakeholder group is critical to producing ideas innovative enough to handle the challenges our health care system is facing.

Suggestions: While PCORI’s current structure of supplying large grants (nearly $1m each) to a small number of projects has the opportunity to create some huge research results, funding many smaller projects in the form of micro-grants might do more to flood the field of research with thousands of opportunities to experience the “magic moments” of partnership innovation, encouraging real culture change.

  • Challenge: Throughout history, trying to insert a less powerful stakeholder group (patients) into the paradigm of the more powerful one (research) often results in paternalism and tokenism.

It takes a skilled, supported patient to not become acculturated to the professionals’ perspective when they’re sitting in their conference room or in their labs. Patients are often invited to partner and then sent signals that their ideas are unreasonable, off-topic or too aspirational—basically, that they “just don’t understand the reality of the situation,” or the professional’s own paradigm. Eventually, they become tokenized, or present so that the organization can claim credit for including consumers without actually changing.

Suggestions: PCORI must aggressively equalize the power dynamic from the outset. Make parity of participation (equal ratio of patients to all other stakeholders combined on a project) and compensation a requirement—including in their own leadership. Give higher scores to grant applications that offer patient-generated ideas and patient-driven projects. Teach the research community partnership skills. Putting patient groups in charge of awarding the funds would be a radical approach but could even out the power dynamic effectively.

  • Challenge: It’s easy to treat patient engagement as an ancillary function of whatever it is you’re trying to partner around.

When patients are invited into existing professional structures to partner, professionals often think that patients are the only ones who need to learn new things, that cultivating a healthy partnership is the job for a designated patient leader, or that partnering is a value deserving of resources only after the real work is done.

Suggestion: Instead of referring to “patient engagement,” frame the entire concept as “patient-professional partnership,” and make the partnering as important as other work. Accept that both sides will require training, new skills and new capacity to partner successfully. Select researchers and other stakeholders who demonstrate a commitment to partnership. Rather than assign a single person (usually a patient leader) to head up “patient engagement,” partner a patient and professional to model collaboration and manage this function. Similarly, partner patients and professionals as co-leaders throughout the organization to ensure that partnership stays central to the mission of the organization.

  • Challenge: Inadequate compensation creates circumstances in which only educated, engaged, connected patients are likely to participate.

Patients and caregivers are not often salaried employees. Participating in partnering often costs money: for childcare, additional nursing care for themselves or a family member or in lost income. When time is not valued through payment, only a lucky few have the means to participate. Also typical is that these patients’ contributions are devalued because the patients aren’t “regular people”—they’re too activated, navigate the system too well, or aren’t diverse enough.

Suggestion: PCORI can model transactions that will facilitate a more diverse participation by paying participants their time as well as expenses, and for participating in every role in their organization, including as grant reviewers and on their board and in leadership.

  • Challenge: The medical model paradigm favored by medical research, with its focus on body parts, diagnoses and disease labels, may be a source of conflict with patients.

Patients often take a radically more holistic perspective to medicine than researchers or even clinicians. Patients’ health care frame of reference is often a life course approach, a public health mindset and a medical home model blended into one, dismantling the silos of medicine, education, employment, transportation, housing, recreation and spirituality and blurring the lines between their own health and their families’ well-being.

Suggestion: Expand the scope of viable research questions to include non-diagnosis related questions, like identifying key activities of patient-professional partnership, the mechanisms of patient activation, care coordination, shared decision making, the impact of peer-to-peer (patient-to-patient and family-to-family) relationships, and the impact of social determinants on health. Fund projects agnostic to disease label to build a patient-centered research infrastructure: resources for patients on how to conduct research, access for patients on critical functions like an IRB and a venue for publishing, training on how to recruit their own researcher, and resources for all (not just PCORI) researchers on how to partner with patients.

PCORI leadership seems dedicated to doing this right. As a patient and family member, I recognize what a culture shift PCORI’s existence represents.

Do you have a research question that you’d like to submit to PCORI? Would you like to be a PCORI grant reviewer? Do you want to learn more about what PCORI does? Get involved and shape the future of medical research. Together we are better.

The Society for Participatory Medicine’s blog is also collecting  posts from other participants at last week’s event. Check them out.

Transition baby steps that lead to major milestones: It starts with YOU!

Recently my colleagues at the Federation for Children with Special Needs have been talking about the importance of preparing kids for medical transition to adulthood—how parents and caregivers need to deliberately teach kids the skills and build the confidence they will need to be engaged in their own health care as adults.

When the topic came up at first, I was resistant. With so many other skills to teach and care elements to manage, the prospect of adding another task to my long to-do list was overwhelming.

Luckily, one colleague offered one simple suggestion that I felt willing to take on: at our next doctor’s appointment, I would give my kids their health insurance cards, let them walk up to the check-in counter and say that they were there for an appointment. I felt it was something that my nine-year-old son, who has complex medical and developmental needs, and my seven-year-old daughter could handle.

Since our doctor visits are fairly frequent, I was able to try it out soon. My son, who has been practicing social pragmatics like this at school, loved this real world experience. My daughter also easily did it. I was also surprised by an unintended consequence: not only did it teach my kids a new skill, it reminded the staff, my kids and me that my child is the patient.

OK, I thought. I get it. This doesn’t have to be a big deal. As with most things we want our kids to know, we need to give them lots and lots of tiny opportunities to practice, not one big lecture a couple of days before they reach adulthood. I realized I could do this.

A couple of weeks later, a patient satisfaction survey came addressed to my daughter. Rather than fill it out myself or toss it, I gave it to her. To my surprise she had a lot to say, both good and bad. “I love Lorraine*,” she wrote about the medical assistant. She wrote earnestly: “The waiting room is really boring.” I was taken aback by the strength of her experience and her ability to articulate it. I chuckled thinking about what the person opening the envelope would think when they read the results.

Last week, she had her eight-year well visit. With minimal effort, I handed her not only her insurance card but also the card I use to pay her co-pay. I told her that she’d be fine checking herself in. Rather than standing next to her, I sat down on a chair nearby.

She approached the desk with a little hesitation, but the receptionist took the cards and proceeded to get her set up. He started to direct his questions to confirm our address and phone number to me, but I looked to her and repeated them, showing them both that this was between the two of them. I took real effort on my part not to jump in and help, but I managed.

We all survived and even smiled. By the end of the check-in process, he handed her a clipboard with a behavioral health survey. She came to sit near me and announced that she was going to fill it out. Once again I was surprised and delighted about how much I learned from her answers—for the questions “My child seems more tired during the day,” and “S/he wants to be with me more than usual,” she circled the options for “often.” Interesting information and the beginnings of a couple of great conversations we had afterwards.

As we went through the process, a woman sitting nearby with four boys, all clearly older than my daughter, remarked at how independent she was. They had already checked in, but next time, she said, she’d get them to do it themselves.

Shortly afterward, a hurried mother and her teenage daughter arrived. The girl stood over to the side while the mother took charge checking her in, while I got to sit and luxuriously read a magazine. Knowing that this girl would be going into her doctor’s appointment without her mother, as is required by law, I wondered how comfortable she would be.

Unfortunately, there wasn’t any way to pass along the lesson I learned to her mom, but I can pay it forward to you. Preparing our kids to become adult patients doesn’t have to be complicated. Just start giving them lots of tiny chances to practice, and they’ll surprise you. Before you know it, adulthood will be here, and they’ll be ready. Even if we’re not!

*not her real name