By Dr. Jon Hunter and Dr. Bob Maunder
"Arlene’s experience illustrates how health care is complicated because it usually takes place between people who don’t actually know each other very well." - Dr. Bob Maunder, Chair in Health and Behaviour and Deputy Psychiatrist-in-Chief
We are psychiatrists who hear the stories of critically ill patients. As a result, we often have a unique perspective on what works well and what doesn’t for people who are treated at Sinai Health System, whether for a sudden, unexpected health event or for a chronic or life-threatening illness or injury.
We listen, especially for two things — patients’ past experiences with illness and their attachment style, which means how they manage relationships with others in order to feel secure during times of fear or stress. These two things help us understand the struggles they’re having with their illness or their treatment.
Everyone has a kind of comfort zone when it comes to attachment. In times of fear or stress — such as during an illness — people may fear being alone and seek out support and care from others, or, on the other side of the spectrum, avoid others and prioritize self-reliance. These styles of attachment play a critical role in shaping the dynamics of all kinds of relationships, including those we form with our health-care providers and caregivers.
Our relationships have a powerful influence on health. For one thing, whether a patient is wary of health-care providers or views them as trusted confidantes influences their care. Because patients manifest these different styles, needs and strengths at times of illness — and in fact these factors are often intensified by illness — a one-size-fits-all approach to providing health care just doesn’t work very well.
For years, we have been meeting with each other every Monday to talk about our experiences with patients in order to figure out how to use these insights to improve patient care. It goes something like this…
JON: There was a patient on the oncology service a while back, Arlene*. I remember her, especially because we had such a slow start. When I first went in to see her, her head was propped up on the pillows and she was just staring across the room. She didn’t acknowledge me at all. She looked frustrated and very tired. She was 43 but she could’ve easily passed for 15 years older than that.
I introduced myself as the psychiatrist on the cancer team and told her they often ask me to see patients in hospital, to see if I can help. Her answer was sarcastic. She said “Great” with an obvious edge to her tone, so we had a really short conversation. I didn’t want to start our relationship by ignoring the cue to leave her alone.
I was asked to assess if she was depressed, but it was quickly apparent that she wasn’t. Arlene had quite a range of feelings, but mostly she was angry — and with good reason. She mistrusted the doctors and nurses who were caring for her, and they had their doubts about her too. But I’m getting ahead of myself. All I knew after that first meeting was that she was frustrated and not keen to talk to me.
So I spoke with Arlene’s primary nurse. I’ve worked with Mia* for years; she’s really experienced and very caring. She told me the nurses were concerned about Arlene, and that they needed some help. Mia told me that Arlene was crusty with everyone on the team; she tended to fend everybody off as she had me. She was fussy about the details of her care and quick to point out small errors.
BOB: That’s not unusual — being in hospital for cancer treatment does not bring out the best in people — but they wouldn’t call you if that was all that was going on.
JON: Exactly. Something was interfering with Arlene recovering from treatment but the team couldn’t figure out what it was. Mia thought that Arlene was not putting any effort into trying to recover. That’s what made her wonder if she was depressed. Arlene was barely talking to the physiotherapist and not even attempting the exercises that she had been taught. Some of the other nurses and the surgical resident also thought that Arlene was asking for pain medication too often. Mia didn’t think so, but I could see from her facial expression and hear in the tone of her voice that she was starting to lose patience too.
BOB: So what happened?
JON: I went back to see Arlene a couple of times, trying not to overstay my welcome but persisting. She gradually started to share her story.
BOB: Persistence pays off.
JON: Maybe. Later on she said that it made a difference that I seemed more interested in figuring things out with her than in defending my colleagues, so coming without an agenda of my own helped to.
Once she was talking, I learned that this was not Arlene’s first rodeo — she’d had treatment for lymphoma 20 years ago. She was a young single mother at the time and under a ton of strain. That experience was really important now because at an emotional level, she couldn’t help but cross-reference the two treatment episodes. The lymphoma had required surgical biopsy, radiation therapy and chemotherapy. The radiation played a significant role in her cure, but also had probably contributed to the development of the breast cancer she had now.
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BOB: I didn’t know that was a risk.
JON: It isn’t common, but it happens. Logically, Arlene accepted that the new cancer was essentially bad luck. But once she was back in the same environment where her first cancer was treated there were a hundred reminders to trigger emotions and connect the previous experience to the current one. Without even being aware of it, out beyond the logical part of her brain, another idea was gaining strength: “You did this to me.” That idea made it hard to trust the team.
BOB: So when things were at their most stressful, Arlene’s most comfortable position was to keep everyone at a bit of a distance. She was taking control of her circumstances as best she could by pushing back.
JON: Right. I’ve come to know that Arlene feels most secure when she has a little “breathing space” between herself and others. She needs support — everyone does — but she is cautious about letting others get close.
Unfortunately, there were also other factors contributing to the tension. Arlene’s medical record indicated that years before she’d had a problem with addiction to painkillers. She was proud that she had put it behind her. However, when tensions started to rise between Arlene and her nurses, her history of addiction also evoked mistrust. Some of Arlene’s care providers started to doubt the validity of her reports of pain.
When Arlene interacted with her health-care providers, each person was a little wary of the other, which created distance in their interactions at precisely a time when Arlene needed support.
BOB: Arlene’s experience illustrates how health care is complicated because it usually takes place between people who don’t actually know each other very well. It sounds like you and Arlene figured out what was going on fairly quickly. But it would have taken longer or not happened at all without appreciating the backstory that made sense of the tense interactions.
JON: Even though the tensions between Arlene and the oncology team were never dramatic, they had consequences. The anemia that explained why she was so lethargic, for example, took a little longer to discover because the team was slow to realize that her complaints of fatigue were valid and were valuable information. Mia said it helped when I told her and the physiotherapist what I thought was going on.
BOB: There is no recipe for how to make it better for every patient, every time. But there are many steps we can take that improve things.
JON: Sometimes very small things can make a difference. I always think of that study where they found that if they attached a photo of a patient’s face to the requisition for a CT scan, the radiologists’ reports were more accurate. Little connections to real people make a difference.
BOB: That connection can also happen by asking about a person’s past experiences. We know that health-care professionals are hesitant to ask about harmful experiences in the past, but we also know that these experiences are very common and that they influence a person’s health throughout life, especially experiences of abuse and neglect during childhood. If we don’t ask, we don’t get to hear a part of a person’s story that might matter a lot.
JON: I have been thinking about how we medicalize problems when a person comes into hospital. A guy comes into the Emergency Department because he has a life problem — say he doesn’t have the strength to climb the eight stairs between his living room and bedroom. As we investigate we start to see this as a medical problem: The tests show that his heart is not pumping blood well enough to bring oxygen to his leg muscles. We have technical terms to describe that problem, evidence-based guidelines to treat it and specific tests to know if our treatments are improving his heart function. Somewhere in that process, it can happen that people forget to ask him how he’s doing with the stairs.
BOB: Another thing that we can do is to help people to know themselves — their strengths and vulnerabilities, their coping style, how they prefer to interact. We all sort of know ourselves, but we usually have no way to know how we compare to others, or if our difficulties are severe enough to need some attention.
JON: Right. Like the studies that show that if university students are given clear feedback about how their drinking habits compare to social norms and healthy limits, they tend to adopt healthier patterns.
BOB: What happened with Arlene?
JON: In the end I suggested that it might help to meet with me for a few visits after she was home from hospital, just to troubleshoot anything that came up. Once at home, she felt more independent, which is how she likes it, so it was easier for her to cope. She was much more open to discussion by then, and I came to appreciate just how resilient she is. She didn’t need to see me for long but she stays in touch. She even drops in on the 11th floor to see Mia and the other nurses when she’s back at Mount Sinai for a check-up. She really appreciated their help.
Dr. Jon Hunter holds the Pencer Family Chair in Applied General Psychiatry at Sinai Health System and is Head of the Consultation-Liaison Psychiatry Service and of Psychosocial Services at the Marvelle Koffler Breast Centre. Dr. Bob Maunder holds the Chair in Health and Behaviour at Sinai Health System and is Deputy Psychiatrist-in-Chief. Both Dr. Hunter and Dr. Maunder are shining a spotlight on the relationships between people that are at the core of all health care through research, advocacy, education and system change. Their shared goal is to improve working relationships between patients, their families and health-care professionals.
Illustration by: Jeannie Phan, Portraits by Eden Biggin