the tale of two appointments

gown

At least I have a gown

Yesterday I had two separate diagnostic imaging appointments.  One was for an ultrasound at the cancer agency and the other was for a follow-up mammogram at a diagnostic imaging centre.  I finished treatment for breast cancer six months ago. Both appointments involved my poor beleaguered breasts, but otherwise the two experiences could not have been more different.

I sat in my therapist’s office today and deconstructed each appointment.  I’m figuring out why I am so desperate for kindness in health care settings. A chunk of that is my own stuff – I seek comfort when I’m feeling vulnerable.  But no matter my own personal reasons – I hope we can all agree that being mean to people in hospitals and clinics is not an acceptable option in Canada in 2017.

I present these two experiences to demonstrate how easy it is to be kind, how it does not take more time and how kindness is up to individuals and lack of kindness cannot be blamed on the ‘system.’  Never forget the system is made up of people.  Even in a health care culture that does not promote kindness for its own staff, there is opportunity for exceptional folks to go against culture to demonstrate caring for those they’ve committed to serving.

Example 1:
The Ultrasound 
1.  I waited among the bank of chairs in the hall, the first appointment of the day.  A gentleman pushing a laundry cart called down the hall to me: ‘Hello there!’  This perked me up and made me smile – scared, anxious me, sitting alone in the cancer hospital for my first post-cancer treatment scan.  Hello there mattered.

2.  A man came out of the ultrasound room.  A man to do my breast ultrasound!  But he had a warm smile and called me by name.  Come and get changed, he said and I’ll meet you in the room.  Put the gown on with the back open, he added before he disappeared. I was greeted warmly and clearly told what to do.  I appreciated the option of the gown. (This will make sense as you read my other experience).

3.  I changed and went into the room.  The lights were darkened and there was soft classical music playing.  The environment was comforting.

4.  The whole ultrasound took about half an hour.  This nice man talked to me the whole time.  He asked about my cancer treatment in a conversational kind of way.  He told me what he was doing as he was doing it and also shared with me what he was doing next. Providing information about what was happening and what to expect next was a great comfort. 

5.  He said – this might hurt.  Tell me if you feel pain.  He also said, ‘I’m almost done’ as he was wrapping up.  He told me when he left the room and why.  He wasn’t afraid to acknowledge my pain.  

6.  I was still wound tight as a top, clearly worried that all my cancer wasn’t gone.  He said to me, ‘don’t be worried.’  I knew full well he wasn’t allowed to tell me anything about my scan.  The results of the ultrasound would be faxed to my oncologist in a week (alas, it is the holidays, so I won’t find out the results until the new year).  But his ‘don’t be worried’ – even if it wasn’t true, validated my concern and was actually sweet.  He lessened my anxiety with his words.

I walked out feeling okay.  It wasn’t what this man did – it was how he did it.  And none of it took more time.  And, surprisingly to me, it did not matter one bit that he was a male technologist because of his compassionate approach.

And then, one hour later, in sharp contrast, I experienced the cold, the officious, the not-so-kind experience.

Example 2:
The Mammogram 
1.  I had a mammogram earlier this month, but had been called back for another appointment.  I asked the booking clerk when she phoned, ‘why do I have to come back?’  She said she didn’t know.  So I spent sleepless nights thinking they found more cancer.  Not telling me why I had to come in again seems cruel.

2.  My husband, having dropped our son off at school, met me at this appointment.  We sat in one crowded waiting room until I was called into another waiting room.  On the door it said:  Women only.  No men were allowed.  My husband sat on a bench outside the elevator for the next hour.  Not permitting my partner to accompany me is not patient or family friendly.  

3.  I sat in the second waiting room for a long time.  I was hoping I wouldn’t get the same technologist as before, as she was unfriendly. (Irony alert:  having a woman technologist does not guarantee a good experience).  It turns out I got another woman, who was equally as unfriendly.  I knew then unfriendly was the culture of this diagnostic imaging centre, and only the most exceptional clinicians would rise above it.

Then there was this sign:

sign

I knew to expect it because I had been there before, so I was wise to them. I brought a cardigan to wear in the mammogram room.  At my last appointment, I had to strip from the waist up in front of the technologist and stood there, unnecessarily exposed, cold and topless.  This time I brought my own cover-up.

There’s so much to say about this sign.  First, the idea of being efficient by not encouraging gowns is baloney.  I sat in the waiting room for 40 minutes.  Forty minutes is plenty of time to change into a gown, isn’t it?  And for environmental impact?  Yes, I guess doing laundry is bad for the environment.  All my years of hating hospital gowns and I never would have guessed their solution to sterile gowns would be to take away the gown.  Yes, I could have taken a gown but this was clearly not encouraged.  There were other signs too, saying NO CELL PHONES.  There was a stereo on the floor, tuned into a Christmas music radio station that cut in and out as people walked past and played loud commercials.  The room was packed.  All of us women were lined up in rows in chairs, our fear palpable. Signage and physical space sets the tone for the whole patient experience.

4.  Once I was called in, I had to strip from the waist up.  I put my cardigan back on and pulled it tightly around me.  The woman did not introduce herself.  She did not tell me what she was going to do.  I said casually – it is too bad we don’t have gowns.  ‘Gowns just get in the way,’ she responded.  Oh.  Dignity starts with giving options to minimize patient nudity.  (Do I really have to say this?).

5.  I don’t want to discourage women from getting mammograms, but this mammogram hurt a lot.  She did tell me they wanted a closer picture of one part of my breast – which happened to be in an awkward position – close to under my arm.  I was jammed into the mammogram machine.  I whimpered as she tightened the machine around my breast – this one, my cancer side, still swollen with edema from radiation.  She did not acknowledge my pain and clamped down on it some more.  Not acknowledging pain does not help with suffering – in fact, it increases it.

6.  She must have taken ten more images.  Each time it hurt more.  I tried to breathe but I was told to hold my breath.  I was starting to feel dizzy and clammy.  I had no idea when she would be done.  Being left in the dark about what’s going on is anxiety-provoking in an already anxiety-provoking situation.

7.  Suddenly, it was mercifully over.  I stood in the corner, my back turned and got dressed. I was told to sit in the waiting room again, but I didn’t know why.  Another woman came about 20 minutes later and told me I could go.  I wasn’t informed what was to happen next or when my test results would be shared with me.  I got out of there as fast as I possibly could.  Knowing what will happen next does help.

I met my husband in the hall and he enveloped me in a hug.  What took so long?  Did they find something?  he asked, clearly alarmed.  I shook my head and said, just please take me home.

Listen, I don’t need emails or comments telling me I should have spoken up.  I know how to speak up.  I also know how to submit a complaint but I gotta tell you – a lot of good that’s done me in the past. Sometimes all we can do is put our head down and endure horrible situations.  I don’t always feel like being an advocate.  I am not always strong. That’s ok too.

But I hope I have demonstrated with these stories how one person can make a difference.  That the little things matter.  That what is not a big deal for health professionals (like topless patients) might be a big deal for us.

Those who work in health care can make a hard situation better by demonstrating compassion.  For my whole mammogram experience, all I can say is:  I know you can do better.

As Anne Lamott says, there are only two prayers:  Help me help me help me.  And thank you thank you thank you.  For the ultrasound technologist, I say thank you.  Thank you for making things a little bit easier for a scared, traumatized woman with breast cancer.  What you did mattered. In fact, all those so-called little things you did – that took no extra time at all – mattered to me a lot.  For you, I am tremendously grateful.  xo.

a gathering of kindness

australia

Catherine Crock + me at Brighton Beach  Melbourne 2012

One summer day five years ago I boarded a plane to Australia.  The entire trip took 33 hours – with bad weather, delays, missed connections and four flights.  I finally arrived at the Melbourne airport, bleary-eyed and having lost a day off my life. Dr. Catherine Crock was standing there waiting for me to take me to her home.

Catherine Crock is a mom, pediatrician, founder of the Australian Institute for Patient and Family Centred Care, the HUSH Foundation and the Gathering of Kindness.  She is a force and a rabble rouser – a whirlwind of energy, ideas and action.

I sat on the long flight to Australia, wide awake, crammed in a middle seat in economy class and quaking with fear.  I had never been so far from home.  I was going to present about Meaningful Patient Engagement at a Consumers Reforming Health Conference, which was hosted by the Health Issues Centre in Melbourne.  It took every ounce of my bravery to get on that plane.

Here is a story about what kindness looks like in real life.  I was covering my own costs to Australia, as I was talking only in a break-out session and was not a plenary speaker.  When my abstract was accepted six months previously,  my husband and I decided to cough up the thousands of dollars in airfare because the chance to speak in Australia was the opportunity of a lifetime. (Note:  If you don’t pay patient speakers, it is only us privileged speakers who are able attend).

Cath knew I was funding myself.  She offered that I stay with her and her family at their house in Melbourne to help with my costs.  I politely said in my Canadian way:  oh no, that’s too much!  But Cath countered in her welcoming Australian way and insisted.  This made me a bit nervous too.  I’d never been billeted with anybody before.

In the end, staying with Cath and her big family was the best thing part of my whole Australia experience.  I spent loads of time with her, soaking up her Cath-ness and travelling back and forth with her by public transit to the conference.  I met her five children and experienced the love in her full lively house.  I slept in the guest room at the back of her home where there was a kangaroo living outside my patio door.  Her family welcomed me, fed me and cared for me like I was one of their own.

The night before my presentation, I rehearsed in front of Cath and her husband Rod in their living room.  I was taking another risk and using what I call the Dick Hardt style of presenting.  I had 133 slides for 15 minutes of speaking.  (Yes, I flew to Australia to speak for 15 minutes).  Cath and Rod generously helped me polish my speaking notes.

Despite my jitters, my talk was well-received.  I was a foreigner with a weird accent and a strange way of presenting and this helped me stand out.  (Afterwards, I wrote an article called Meaningful Engagement or Tokenism about my talk for Australia’s Health Issues Journal).

Cath and I have kept in touch ever since.  I was supposed to visit her in Australia with my own family this past March.  She had kindly offered up her cottage for us to stay at. But then I got the damn cancer, so we had to cancel our trip, which was scheduled two weeks after my surgery.  This was so disappointing.

I have vowed to bring my husband and son to Australia in the next two years.  I want to attend the next Gathering of Kindness, which is an annual event organized by Cath and her colleagues.  This year’s event is on October 30 and is for health care professionals, artists and innovators.  The 2016 Gathering of Kindness is described as this:

The GOK 2016 invited 100 participants – actors, healthcare clinicians, artists, musicians and innovators to imagine that kindness, trust and respect were the fundamental components of the healthcare system, and that bullying was unacceptable. Collectively they proposed a better way forward. 

I can’t be there this year because I’m still healing from the damn cancer.  But this blog post is a very long preamble to say that I was pleased to support this important initiative by contributing an essay about kindness for the Gathering of Kindness blog.  I called it All the Warm Blankets.  Please read it and also check out the Gathering of Kindness site.  If you are someone who works in health care this will remind you that all your kindness matters, every single time.

Dr. Catherine Crock’s generous heart and fingerprints are all over my essay.  She works hard to bring compassion into health care settings, through her own actions and by leading initiatives like HUSH Foundation (which introduces healing music into waiting and treatment rooms in hospital environments) and the Gathering of Kindness.

I’ll never forget how Cath welcomed and cared for poor, scared, jet-lagged me five years ago.  We need more Dr. Catherine Crocks in this messed up, beautiful world.  She’s one of the great healers who is handing out warm blankets to everyone, everywhere she goes.  xo.

the gentle hearts will help us heal in the end

img_5927.jpg

A painting given to my daughter, a gentle soul who is entering her third year of nursing school.

It is a commonly held notion that patients will only give feedback when care is either very bad or very good. Those who have ordinary experiences do not usually take the time to write a letter or fill out a comment card.  I’d like to commit to speaking up when things go well, as well as when they go poorly.  Here’s my story of a perfectly ordinary appointment.

Today I had time booked with a radiation oncologist at the cancer centre.  I think appointments with oncologists strike fear into most people.  It must be a strange job to be an oncologist and have people show up in your office terrified to see you.

This was my first time back at the cancer centre since my last day of treatment.  On the drive there, I was an anxious mess.  I drove as fast as I could in bumper-to-bumper Vancouver traffic and loudly played a Tragically Hip live album on the car stereo to give me some moxie.

Courage, my word
It didn’t come, it doesn’t matter
Courage, it couldn’t come at a worse time

My regular radiation oncologist was on holidays, so I was booked into see someone new.  I woke up this morning awash with anxiety thinking about this new doctor. What if he wasn’t kind? And yet another new person looking at my poor boob and this time a man to boot? Great. I might as well be marching through the cancer centre with no shirt on with the amount of dignity I have left.  I had to go to the appointment by myself, as my husband had to remain at home to look after our son. Being alone never helps my monkey brain either.

I eyed my bottle of Ativan before I left. Isn’t it ironic that the main reason I pop anti-anxiety pills is when I have an appointment at the hospital? I decided instead of taking a pill to park a few blocks away from the cancer centre and walk to see if the trek would help settle me down (it did).

I hiked through the leafy residential neighbourhoods, grabbed an iced coffee and snuck in the back through the parkade elevator. The sight of all the people with cancer waiting in the lobby always makes me sad. In fact, the whole building makes me sad. It isn’t my favourite place to go.

I dutifully checked in with the receptionist, who was pleasant enough, and sat down for about three minutes before my name was called. I have to say that the radiation folks are all very efficient – there’s very little waiting in that department. The nurse (I think?) who fetched me asked how I was doing. She didn’t share her name or her role and I didn’t have the energy to ask. We chatted a bit about burned boobs and fatigue and she left me alone in the room to change into a gown. The radiation oncologist knocked and came in a few minutes later.

He was a young physician with a gentle manner. He introduced himself and shook my hand.  He sat down in the chair while I was perched on the treatment table. I knew this was my last radiation oncology appointment and so I had my notebook with my list of questions for him.

In total, he spent almost half an hour with me. He never appeared rushed or glanced at the clock. He was both professional and friendly. He smiled and made eye contact. Except for my physical exam, he remained seated and clearly answered all my questions. It reminded me how important communication is for physicians. It must be challenging to read a patient when they first meet them to figure out how to talk to them like they aren’t stupid, but in a way they understand. Translating recurrence rates, statistics and risk factors into layperson terms takes talent and skill.

He wasn’t rushed and didn’t seem to try to be wrapping the appointment up in any way. I never felt as if I was intruding on his time. He was there for me for the entire half an hour. He said a number of times – if you ever want to come back and see us, just give us a call. He shook my hand again when he got up to leave.

I walked back to my car feeling calm and relaxed. I felt as if I was taken care of, mostly because of how this young physician behaved and not what he did. His friendly, calm, unrushed manner turned what could have been a stressful and upsetting oncology appointment into a perfectly fine oncology appointment.

I assert that the so-called bedside manner matters a lot. While our interaction might have been just an ordinary appointment, it meant much more than that to me. I’ve said it before but it bears repeating: it is these little things – a handshake, a smile, patience, eye contact, a calm manner – that mean a lot to us vulnerable, broken patients, every single time.

Medicine might cure (sometimes), it doesn’t always heal. This oncologist was not only a specialist, smart and brimming with lots of medical knowledge, but he was a healer too. And right now, I mostly need to heal.

Cheers to all the healers out there, who comfort and alleviate suffering just by holding space for their patients. Holding space is the ultimate demonstration of respect for patients.  I strongly believe that it is these gentle hearts who will help us heal in the end.

an open letter to radiation therapists

June 9, 2017

Letter to folks at Radiation Therapy

I’m done! I moved a crabby, wounded animal on my first week of treatment through to feeling a glimmer of joy today that this cancer business is done (for now).

You have helped me these past four weeks. Thank you. I always presumed competence, but it was your kindness and humanity that set you apart. Here are the small things that meant the world to me:

  1. Eye contact, introductions and smiles.
  2. The offer of a warm blanket.
  3. Chit chat – about the weather, colour of my nail polish, my family, plans for the day.
  4. Helping me on and off the table.
  5. Covering me up as much as possible.
  6. Telling me what you were doing as you went along. (This lessened anxiety, a lot).
  7. Your respectful treatment of my husband and son when they came in.
  8. Being open to answering my questions. Prompting me to ask questions. Saying, ‘what questions do you have’ instead of ‘do you have any questions’
  9. A reassuring hand on me.
  10. Not appearing rushed, even if you were.
  11. Your demonstrated compassion: empathy for fatigue, burning, itching, how crappy this whole experience is.

I am grateful for all those so-called little things. I think medicine can cure (sometimes) but it is the love that actually heals us patients.

Please keep doing these things, even if the system tells you otherwise. They matter.

Warmly,
Sue Robins.

(Shared with the Radiation Therapists on my unit at the cancer agency (and their manager) on my last day of treatment.  Although I’m quick to provide ‘constructive feedback’, I also strongly believe in saying thank you too).  

how the little stuff is the big stuff

Screen Shot 2017-04-18 at 8.43.33 PMI’ve been to three cancer physicians the past three months since being diagnosed with breast cancer.  (Let’s all agree not to call my experience a journey or battle okay?).

There aren’t any navigator programs for cancer patients here, so my dealings have been directly with physicians.  I wish I had access to a nurse or nurse practitioner, but that is not how things are set up in British Columbia.

My first physician was a surgeon who was all business.  Yes, I know surgeons aren’t famous for their bedside manner and as far as I can tell, she did a fabulous job cutting out the cancer out of my body.  People say surgeons can’t get emotionally involved with their patients and still be able to cut them open, so I tried my best to understand this.  She reviewed my results with me too quickly for my muddled head, but thankfully I saw my family physician a few days later and she translated the pathology and my surgeon’s scribbles into a language I could understand.

My second cancer physician was the medical oncologist (shortened to the funny-sounding MedOnc in the cancer world).  I mostly saw her resident, not her. This oncologist kept calling me Ms. Robins which was disconcerting and made me feel like she was talking to my mother.  She was brisk to the point of being dismissive.  I don’t need chemo so she didn’t have a lot of time for me and waved my silly questions away.  It is true that she had other patients to see who had more serious kinds of cancer, so I tried my best to be understanding of her approach.  I took my puny little cancer and slunk away as fast as I could.

I have been a mess after each of these appointments, hand-wringing and second-guessing everything the doctors told me and ruminating on every word they said for days afterwards.  Ask my sweet husband – this has not been fun.  Frankly, I have been acting like a wounded animal.  I realize I was struggling to trust what surgeon and medical oncologist told me because I did not sense they cared about me.  Well, maybe they did care about me, but they didn’t demonstrate they cared about me. Also, I’m not a good mind-reader, so any caring they might have in their hearts went entirely undetected by broken (and admittedly-sensitive) me.

Yesterday I dragged my demoralized self to the hospital to meet yet another physician – this time a radiation oncologist.  The nurse ushered anxious me into the clinic room.  The first thing she did was she asked me if I wanted a warm blanket.  A warm blanket!  I love warm blankets.  This appointment was off to an unusual start.  My shoulders instantly relaxed and I breathed a bit easier, cosy under my coveted blanket.

Next, my new doctor knocked on the door and introduced herself to both me and my husband.  She was genuine and lovely.  She reviewed my pathology results in regular person language, leaning on gardening metaphors and pausing to ask what questions I had.  She asked me what kind of writing I did.  She patted me on the leg a few times, which gave me great comfort.  (There’s not enough healing touch in health care.  To me, that simple touch gave me a little peek into her caring heart).

She asked me if I wanted to ask my list of questions first, or if I wanted her to explain things and then I could ask any remaining questions afterwards. (I chose the latter).  A few times I started to say something and stopped, worried about interrupting her – and she immediately paused and gently said:  yes, yes, what did you want to say?  She did not appear rushed in any way, even though she had a roomful of patients in the waiting room.  She even shared her email address so I could ask any follow up questions when I got home.

By the end of the appointment, the wounded animal in me had disappeared.  The kindness settled me down.  I felt connected to my new doctor and that connection was blossoming into the beginning of trust.  This is more than merely being nice – it is about laying the foundation for a relationship.

All the little actions helped to heal my fragile heart – from the warm blanket, the introductions, her gentle approach, her hand on my leg and the way she held space for my questions. All this so-called soft stuff is so much more than just kindness.  With her words, gestures and actions, this physician was demonstrating respect and caring too.  It was not only what she did, but how she did it.

I might still have cancer, but I am finally at peace for the first time in a long time.  This is because I feel taken care of. These little things may seem like nothing to you, but in my current state of heightened vulnerability, they mean just about the world to me.

be kinder than necessary

It has been a long & emotional week.  I flew to Ronaoke Virginia for the great honour of being one of the plenary speakers to open the Collaborating Across Borders conference for interprofessional health educators.

Before I left my room for my talk, I left $2 on the pillow for the housekeeping staff.  That’s a habit I have adopted over the years and my husband teases me that I’m forever looking for tip money.  I figure that being a housekeeper in a hotel is a pretty thankless, low paying and sometimes disgusting job – so leaving two dollars on the pillow seems like a very small token of appreciation.

I then went to the ballroom, and climbed up on stage and looked out into the sea of close to 1,000 participants.  I couldn’t actually see their reactions to my talk, because there were so many people out there.  I could hear in my voice that I was nervous for the first few minutes and stumbled over my words until I settled down into a more even rhythm.  I tried to forgive myself for not being perfect.  The crowd was engaged and respectful, and I was appreciative of their attention and applause.  My talks are basically about compassion, and how I believe that actively listening to patient stories can lead to more compassionate health care. One of my mantras is that I’m talking about kindness, and kindness is free.

Afterwards, I stuck around for lunch and attended some sessions.  Then I needed to retreat into my room for some introvert time.  My room was nice and tidy and my bed was made.  On the covers was this note:

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I had given only $2 and I received this beautiful note in return.  To the lady who does the housekeeping:  I did have a bless day.  Thank you for being a part of that.  Such a small effort on my behalf for such a large reward.  I’ve tucked this little note away in my notebook to remind me, even if I am weary or rushed, to always be kinder than necessary.  As the saying goes, for everyone you meet is fighting some kind of battle.  God bless you too.

keep on spreading that love

spreadingloveAn essay I wrote for the Canadian Medical Association Journal called About Dr. Darwish now has public access.  Hurrah!  (I was cursing the obligatory paywall it was hiding behind for a year after publication in May 2014).  But here it is.  It is free for the reading.

I share this story widely in my work with health professionals.  It was written in honour of Dr. Azza Darwish, who was Aaron’s pediatrician after he was born.

This story says to every single person who works in health care: you have the power to put patients and families on a path of strength and hope.  

Azza Darwish did just that the years we were blessed to have her on this earth. Her memory lives on every time there is a kind and compassionate interaction in the health care system. Let’s all keep spreading her love.