FASday: Patients and families and healthcare

It’s FASDay – September 9th and my blog is about Fetal Alcohol Spectrum Disorders (FASD) – but also about patient and family engagement. If you’d like to know more check out FASworld. If you want a great and engaging read about FASD – Bonnie Buxton’s book Damaged Angels was a huge help to us and our families (and the support groups she started at St. Mike’s Hospital in Toronto).

At a job interview recently, someone asked me why I focused on patients and family experience more than the technology we use in our job. I wasn’t sure at first, I like stories and storytelling, maybe that’s part of it? I’ve had a few bad healthcare encounters as a patient (and seen a few) – but I am sure we’ve all had some. Family experiences with cancer? Check. Again, pretty common in the caring professions.

I think what put the pieces together was the case conference I attended a couple of weeks ago as a parent. My oldest son (P) has FASD. He’s struggled with this debilitating (and preventable) neurological condition his whole life. What people used to see was a little blonde boy acting out, running away, hitting other children – and parents who couldn’t handle the behaviours, parents who sometimes yelled back, walked away and (eventually) ignored them. We stopped going out for meals, taking him to friend’s houses, doing anything outside the routine that would throw him into a spiral of anger. The eventual diagnosis at aged six was a relief at first. But as he became older, and we learned more, we settled into a kind of waking despair. “Kids like him” don’t go to college, “kids like him” drop out, get addicted to drugs, end up on the street. “Kids like him” – with messed up executive functioning and zero sense – are the most common inmates in Canadian jails. Today at seventeen P’s living in a group home with supervision, we’re hoping he goes back into a special education program this fall because it will keep him busy, safe, for a few hours a day. He didn’t graduate high school, but he held down a job for a few weeks last summer. Better than we’d hoped.

My ex-wife and have been to parenting classes, support groups, retreats – read all the books, combed all the websites. We were told by various social workers, mental health workers, key workers, play therapists, psychiatrists, psychologists and physicians that we should be able to cope, we needed positive strategies, a male role model, a time out zone, a safety plan, yet another class to teach us how to stay calm, a sticker chart, visual aids, a rewards jar. We have seen, and talked to, and been talked at by hundreds of healthcare professionals. We’re lucky – we live in a country that has supports for kids like my son. Whenever there is a crisis the troops rally round – P’s “high risk” care team consists of at least ten people and we’re all trying to keep him safe, alive, until he gets older and his brain develops more.

We went for long stretches when he was younger just coping at home. It was impossible to get him comprehensively assessed and his medications reviewed between crises. All the help was time-limited, temporary. and we’d end up in the ER again and again We learned how to navigate the broken system and how to game it. Supports for kids with FASD are few and far between. In Ontario (a few years ago) there was one special education classroom for kids with FASD in a limited age bracket, in a different school district. We needed respite, most of all, for a break. We ended up paying for this ourselves and it was hard to find the right person who “got” FASD so P ended up with a patchwork of carers all over the city. At one point I found myself in the living room of a “private consultant” who would train parents what to say to get a diagnosis of autism for their kid with FASD – because the support was better, there was funding, educational assistants, sympathy. We seriously thought about it.

So – back to the case conference. It was fairly typical as these things go. I was “the mom” and there were about eight healthcare professionals and mental health workers around the table. As we waited, they started chatting about colleagues, conferences they were planning to go to as I sat and scrolled through my phone. My son had overdosed and was in a local hospital, he was coming out that day but the week before had been rough. He’s also been beaten up and robbed, maced. This had happened a few times but he refused to stay away from the location, the people – still talked shit about them on social media. So I felt there were a few things to focus on. The woman on my left was joking with the table about her upcoming retirement. Just a few weeks to go. The mental health worker was in her early twenties and showing her neighbour pictures of her new dog.

When we got started we did a round table of introductions. It always feels odd to me not to use my professional designation – because that comes with some value – there’s little value in being the “mom” in this situation. My ex-wife and I have been in hundreds of these sessions. We’ve cried, brought binders of tests and assessments, circulated a special “getting to know P” book that was strengths-based (he loved Pokemon, has a wicked sense of humour, he loves to rap) – we’re there as his advocates and to tell his story. But mostly they don’t want to hear it. There’s a rhythm to these meetings. We hear reports from his social worker, care worker, Ministry worker, mental health worker, the people from his residence etc. Unbelievably I hear he’s “doing well”, he’s attended one of the youth sessions, one of the drumming circles, begged off the music class that was arranged for him with studio time but said he’s like to go next time. I interrupt – he’s in the hospital today – he overdosed again, what can we do. They look at me – I’ve cut off the tirade of “I’m retiring soon” who was telling the social worker it was illegal to keep clean gear in a Ministry home (even though it’s a harm reduction – kids can’t keep any drug paraphernalia where they live). He’d suggested it might keep P safer. She vehemently disagrees. They suddenly seem to remember I am there.

One of the women leans across to me and reminds me we’re doing Naxolone training next week – one of the hardest things for moms is to realise we have no control over the risky behaviours – she says sympathetically. I lean back. The talk shifts again to the issue of clean gear – they’re laughing now because they have to hide the tin foil in group homes, because of crack I guess? When the minutes of this meeting come out I’m not mentioned – my words aren’t there. I’m neither surprised nor disappointed.

I’ve got no easy answers – I know the system is flawed and I also know that most of us do our best. The healthcare professionals that I remember the most are the ones that listened to us, believed us and didn’t suggest a sticker chart because we’d already tried that and it didn’t work! They recognised the love and the pain of the situation and were respectful. They saw us as a resource, not a box to be ticked. They didn’t have all the answers, but they were willing to bet we had the most lived experience with our son. They acknowledged the limitations in the system but they still held out hope. They met us in our living room, and not at the hospital – and they asked us what we wanted from them – rather than telling us what they were going to do for us. I can think of a lot of ways that case conference could have gone better – perhaps by giving me space to speak, ask me what I thought for a start? It’s sometimes as simple as that.

 

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Deadlines and headlines*

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There’s a natural hiatus in July and August. Things slow down, people are away. Here in Western Canada it’s been hot and dry and we’ve had forest fires, lots of them. The skies have been gray with smoke, the sun struggling to appear. Before working at a university I assumed the faculty would be whooping it up in far flung locations in the summer, drinks in hand – academia far from their minds. This doesn’t seem to be true. Our students are away but most people are still here, working on courses for the fall and reviewing and revising courses from this past year. Our new students are here next week for their orientation. We get to attend some of this and I’m excited for the drumming ceremony and slightly disappointed to be missing Wednesday’s student-organized party at the local gay bar.  They also have MANDATORY (yes, in capitals) sessions on professional standards, team building and social accountability. How cool is that?

Among all this preparation and pondering, I’ve been looking at my own deadlines. Not a lot to report on the EdD front but a lot going on in the rest of my life. I’m helping to develop a post-graduate course on a subject I know nothing about (magnetic resonance imaging) and getting used to a new life and a new city. I’ve been travelling back and forth to BC and adapting to remote parenting/joint custody. The “I should be writing” guilt has taken a bit of a backseat to the “faculty imposter syndrome” and “extra-mega-ramped-up-maternal-angst”. I’m aware that time is ticking away (and feeling that itch in the back of my brain that means I want to sit down and write something) but I’m busy, it’s still August and my last blog said I was fine with not worrying about end dates**!

A doctoral degree has its own momentum, but there are deadlines to consider when thinking about graduation. The first one (for UBC) is the appointing of the external examiner. This person has to be familiar with the field and joins your supervisory team, and one or more university appointed examiners to dissect your dissertation.  After the external examiner has been appointed, the clock – essentially – starts ticking. A couple of months later is another deadline, the submission of the finished and formatted dissertation to the full committee. A month or two later, comes the oral defense and then the revision and resubmission process. Once the revised dissertation is approved you can apply to graduate (another series of dates and deadlines). For UBC, there are four dates for graduation in the year.

Although this sounds very structured, it’s really only the graduation dates that are hard deadlines. When I asked my supervisor about this and suggested I aim for a fall 2019 grad she told me not to focus too much on the deadlines, but envisage the huge party I’d throw when I’m done. Great advice – but what do I put in the rest of my Gantt*** chart? I’m feeling the back-to-schoolness of the new academic term and wanting to set some goals. We have an EdD educational event in October where I’m presenting. At this point I’ll just be reading everyone one of my stories (which I actually love as a concept!)

So my deadline is still September to start the discussion section, and if you asked me the headline it would be – “Overwhelmed Researcher Reluctantly Learns to Live with Uncertainty”. Nothing new there!

 

 

* Not to be confused with Headlines and Deadlines, the compilation album by the great eurosynth masters A-Ha (1991, Warner Bros Records)

**Yes, yes, OK, obviously slightly untrue

***Fun fact: named after its inventor, Henry Gantt

 

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Plans, progress and dinosaurs

This time last year I was in the midst of my comprehensive exams, trying to pull together my research ideas into a coherent whole, enough to convince the examiners at UBC that I had enough knowledge to move into the research phase of my doctorate.

This time last year I was in a different job, in a different province and married. Things have changed.

It’s axiomatic that doing this kind of in depth introspective work alters you. Also that you’ll smugly assume at the beginning that you are somehow exempt from that. You’re not.

This last year has reminded me that when we think we have it all figured out, life throws us a curve ball. Or as the old Yiddish proverb goes – Man plans and God laughs. Which reminds me of my all-time favourite:

Dr. Ian Malcolm, “God creates dinosaurs, God destroys dinosaurs. God creates Man, Man destroys God. Man creates dinosaurs”
Dr. Ellie Sattler, “Dinosaurs eat Man….. Woman inherits the earth” (Jurassic Park)

 Yeah, OK, not really the same but chaos theory, am I right?

This last year has also shown me the need for cheerleaders. As well as from my EdD cohort (shout out to Chickadee Nation!) I draw a lot of doctoral-type support from Twitter. The recent #ImmodestWomen tweets have got me cheering. Women with doctorates are changing their Twitter handles to ‘Dr’ to make a point that if they’ve achieved something, they should be able to be proud of itPostings from people doing doctorates can also be inspiring, encouraging and motivating. I love reading the “I finally did it” posts with the pictures of happy people in funny hats. The “OMG why did I start this” tweets can be funny or sad – depending – but usually trail a number of comments like “you got this” and “keep going!” I’d like to think if I was having a terrible day/week/month I’d get my share of cyber hugs as well. Recently my virtual buddy Janice posted about taking a break – people shared with her how hard it had been for them, and how taking a break was sensible and necessary if she needed one. It sounds trite (and I would have scoffed at this three years ago) – but sometimes it really IS about the journey. We don’t want to burn out before we get there.

So after a move to Alberta (home of many dinosaurs!) I’m unpacking my notes, downloading the reference management software on my new laptop, and getting on with it. Or starting to. Or thinking seriously about it. I’ve posted the “things I need to do to be called Dr. Bolderston” table on my wall (see pic!) and put up my “you should be writing” memes so it’s a good start.

Even though my dissertation is about 11% done* since I started my EdD I’ve developed an LGBT healthcare research niche, published, presented and changed a few things for the better. It’s hard to separate the doctoral work from my daily practice (which is the whole point of a professional doctorate – so well played UBC). As an example, I was talking to a volunteer patient last week – she generously gives her time to be “treated” by our radiation therapy students at the University of Alberta. She told me that last year she had to play a patient with prostate cancer. I said, that’s amazing! It must have been so cool for the students to learn about trans patients. She looked at me strangely and said – well, no, we just didn’t have any men volunteering! But think of the missed opportunity, I said, we could rework the whole scenario! I’m not sure if she is going to sign up for that but it’s an easy way to queer the curriculum just a little bit. Impact – right?

So whether I start on my discussion section tomorrow, or next month – graduate this fall or in 2021, I’m (89%) OK with that.  Just remind me when I post the “OMG why did I start this” tweet!

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*probably a generous estimate

Do I look gay enough?

Last week was my last one at BC Cancer. It was also my last week working in healthcare, after 30 plus years of being within earshot of the radiotherapy treatment machines beeping away I’ll miss the clinical environment. I’m moving provinces, to a job teaching and researching which I know I will love, but still there’s a sense of loss as I say good bye to helping patients find the exit (up one floor), working with clinical educators (universally awesome) and eavesdropping on waiting room conversations (some jaw dropping, some touching). I marked my last week with a lot of goodbyes, an evening of too much beer and some lovely speeches and a photo shoot at the Vancouver Cancer Centre.

The session was organised by our director of patient experience, to take some stock photos for our education material, posters etc. I was asked to take part because of a (mostly) off the cuff remark I made at a meeting a few months ago that I wrote about in this blog. We’d been reviewing our patient education material to see if it included representation for LGB and T people – it mostly didn’t. The images had been carefully selected for ethnic and racial diversity but (to me) no one looked remotely gay enough, the smiling women were all femme and long haired and all the couples were heterosexual. No one seemed to care much except me and a gay colleague – we were videoconferencing and had a lot to say to each other with the microphone safely muted! We both know that representation matters, that LGB and T patients scan the healthcare environment for signs of safety and images on walls and in brochures are important.  A good example is the Canadian Cancer Society booklet “Sexuality and Cancer” (below). Finally, in a fit of frustration, I said that I’d volunteer to pose for a few stock pictures (I think the words I used were I’d be happy to “butch it up”). There was an awkward silence and we moved on to the next agenda item.

So, I was surprised to get an email inviting me to pose as a patient for the photo shoot last week. I felt considerable pressure not to let the side down (especially after my comments!) That morning I spent a lot of time staring into my wardrobe – I skipped the usual floral top and earrings, going for a baseball t shirt and denim jacket. I’d just had my hair cut so spiked it up. Was that enough? Was I identifiable???

The shoot was done in a crowded clinical area with patients coming and going around us. We had a pharmacist in a lab coat playing “the doctor” and a room full of patient volunteers. I felt a fraud as I listened to their stories, one woman with late stage cancer talked about her previous two terrible and current wonderful oncologist and how she’d learned not to put up with bad healthcare professionals (“time is too fucking short” she said). I knew one volunteer from other groups and sprang it on her that she was going to be my partner. She took it well. When the photographer asked for “family” shots he looked at the man next to me and suggested we come in. I grabbed my new lovers hand instead and we went for it.

The first scenario was “bad news” – I was the patient (only fair as my other half had already been through that).  We giggled a lot, but also managed some serious award-winning acting with lots of loving embraces, hand holding and emotion. Then we were told to “talk” to the fake doctor (who did a good job of telling me about my upcoming chemo regime). We were encouraged to use our hands and gesticulate (I guess talking alone doesn’t shoot well) and we took a lot more pictures.

As I left (and hugged my temporary wife farewell) I weaved through actual patients, attending a new patient clinic, some of whom would be getting bad news for real. I hope some of the pictures we took make it into the waiting rooms and elevators, and I hope I looked gay enough – that we looked like a real couple. I’d love to think that in a few years someone sees me in my baseball shirt and denim jacket and relaxes just a tiny bit. That they feel that the cancer clinic is a place for them. It was a fitting way to say goodbye.

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We’re all stories in the end

This quote (from Dr. Who)  has been rattling around in my mind for a while*. When we last left off, I was writing stories from the discussions with my participants. I’d written three and a kind of prose poem thing that I wasn’t entirely sure about. They’re all in different voices, or styles – one is from the viewpoint of a patient partner, for example. I’ve mined the transcripts for ideas, and the writing was surprisingly easy and unexpectedly enjoyable. I’ve never delved into fiction before and, although this was shaped by our conversations, it was very different from my usual writing. After four I hit a roadblock. I knew there was something else I wanted to say but I couldn’t unpack it. I wrote a few false starts, tried to write in the first person, wreathed my idea with heavy figurative language – nothing worked.

 

I met my three participants again recently, we sat in a borrowed house and ate cookies and I read them the stories. I’d anticipated blank looks, comments like “well, that wasn’t exactly what I said” but they were receptive and encouraging.  They got it. We talked about the missing piece and Naomi, who is the quietest one, said something that stayed with me. My final story will be jumping off from that, and will pull all three of my participants back in, as they should be, front and centre. After weeks of being stuck and irritated, I think I can see the path ahead. There’s still a long way to go, I have to write “back stories” for each piece – showing the relevance of what I wrote and linking it back to the wider conversation and body of knowledge. Then I have to build the rest of the dissertation – the traditional bits like the literature review and conclusion. But the heart is the stories and I think it’s starting to beat.

 

Here’s an example from one of the false starts– it was meant to be a build up to an encounter with a gay patient that left a lasting impression. I decided not to use it, it didn’t fit with the conversations we’d been having and felt too similar to one of the other pieces. But it’s a little look at what I’ve been doing and tiny part of my own story from back in the day.

 

I’m late again, lacing up my trainers at the last minute and hurrying for the Wellesley subway. It’s January, the mornings are dark, and it was hard to get out of bed. Anna has a day off and was still asleep. I made tea and instead of getting in the shower crawled back into bed with her for an extra twenty minutes. My shift starts at ten but it’s nine already, and the trip is longer that the time I have. Checking my purse for transit tokens, my paperback and lunch money I head out into a deep freeze morning. I’m underdressed, didn’t grab my scarf, and my face is immediately cold. We’ve been here for seven years but still the Ontario winters are a shock. On really cold days my nose hairs freeze, a deeply unsettling feeling. Sometimes my legs are numb when I stumble into the cancer centre, the Marks and Spencer’s thermal undies my mum sent still in the drawer at home. Today, though, I am in luck. The connections work out, I’m off the subway and onto the bus in less than half an hour. I even get a seat. It’s warm and steamy, the windows are fogged and it’s hard to see out as we head along Davisville, adding passengers as we go.

There’s a steep turn into the hospital and I shuffle forward, clinging to the pole among the crowd of people pressing towards the exit. Steeping off the bus, I thread my way between patients walking slowly, unsure where to go or shuffling towards chemotherapy appointments. Through the automatic doors into the sun filled atrium, smiling at the white-haired volunteer in her yellow smock, I impatiently press the elevator button. I’m still going to be late, just a few minutes, but I still need to change into my scrubs. If I’m late, someone on the early shift will be late for their coffee…

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*Fun fact – the last time I mentioned Dr. Who was back in October 2015!