https://www.google.com.au/
This second one brought tears to my eyes
https://www.youtube.com/watch?v=1e1JxPCDme4
This article, summarising a patient experience and innovation summit, has some great ideas and insights:
http://www.beckershospitalreview.com/quality/innovating-the-patient-experience-with-empathy-a-recap-of-cleveland-clinic-s-summit.html
And the two links within this article are also great
http://www.communicatewithheart.org/Newsroom.aspx
This is a powerful and touching video.
https://www.google.com.au/
I used to think I empathised with patients and practiced
patient-centred care before I became a patient myself. The perspective
is completely different on the other side, as many of you know from
your own experiences. When you're very unwell, or in pain, or in
shock, or worried about your known or unknown diagnosis, or simply
exhausted, it's very hard to take in all the information you're given
by well-meaning clinicians. I discovered that my familiarity with the
conditions I saw as a neuropsychologist possibly made me less aware of
how unfamiliar, frightening, and overwhelming the experience of being
a patient was for my patients. I maintained what I hoped was a
supportive and empathic yet cheerful and encouraging disposition, not knowing that I would
experience being on the receiving end of similar approaches, and
finding that it made it harder for me to express my feelings and
concerns, and to ask questions. I didn't want to be a difficult
patient. I found the cheerful, competent clinical facade, and the empathetic one, difficult to
penetrate as a patient. I still do, and I'm reasonably well-informed
and assertive. Imagine how it is for people with poor health literacy,
cognitive impairment, ESL, acute illness, pain… I didn't realise just how hard it is to say what you're feeling, to ask the questions that you really want answered, but don't have the courage to speak. I can't tell you how many times I have felt frustrated because I didn't say exactly how I was feeling, or asked the questions that were bothering me. We're so used to being polite and answering the question "how are you?" with the socially correct "fine, thanks." It's only rarely that people say that they feel awful - I sometimes corrected myself and said I felt like crap, but that invites a longer interaction, and as a patient, you're aware of the demands on clinicians time from having other patients and administrative duties, you don't want to waste their time on you. But of course, patients are the reason why clinicians are there, and they won't get the best possible care if they don't have the chance to say how they really feel.
I don't think there's one answer to the problem - perhaps one solution
would be to sit beside the hospitalised patient, rather than looking down
at them, and asking them how they really feel, what they're
experiencing, and if they have any questions or concerns that haven't
been addressed yet. And asking the same questions for all our patients. Our
efficiency and expertise and need to remain dispassionate and
objective with our patients can inadvertently create distance between
us and the patients we are trying to help. Maybe we need to remember
to break down that barrier with every patient we see, to create a
bridge that allows them to convey their fears, hopes, and questions,
so that we can inform and reassure them from their space as a patient,
not ours as clinicians who have seen it many times before. Simple things like sitting on the bed or at the bedside, making prolonged - not cursory - eye contact, can signal to the patient that you have the time to talk to them, and are willing to hear what they have to say. Even appropriate physical contact can make the interaction more human and less impersonal to patients, particularly inpatients, whose bodies are regularly treated as impersonal objects to be probed with thermometers, pricked with needles, and compressed for blood pressure readings. I remember my anxiety literally falling away when my neurosurgeon sat on my bed and put his hand on my shin, the gesture was so reassuring, even though what he had to say wasn't the best: "you had a grade IV glioma. It can't be cured, but it can be treated."
Many clinicians are probably doing some of these things already - I thought I was, but being a patient
was a big wake-up call to realise all the things I could have done better. Like sitting down at the bedside every time, and gently touching someone's hand - I remember some patients holding my hand in theirs if I did that, and when I was an inpatient, I would sometimes reach out to hold a nurse's hand - I felt like a prisoner trapped in a dysfunctional body, and craved some human contact that didn't involve instruments of any sort.
I feel like these resources from the Cleveland Clinic cover many of the things I wanted to say at the conference, and more - so if I share them when I give my presentation, it will allow me to focus on any unique insights or experiences that might be left for me - like what it's like to be a neuropsychologist who had a brain tumour, how damned frightening it was to see that initial scan, and how ecstatic I was to get through two craniotomies with life, cognition, and sense of humour intact. I was looking at the photos taken around that time, one year ago (September 4th to 14th, 2013), and it was wonderful to be reminded of how happy we were, once the surgical treatment was over. The combined chemo and radiotherapy was rather torrid, as was the resulting pancytopenia and cancer-related fatigue, and all the other dramas I've experienced, but I've been feeling full of energy these past few weeks, and the bad times seem like a distant memory.
I must walk Ginny and hang out the laundry before the boys get home. I hope you're all having a wonderful Spring day.
