“What do I need to know about you as a person to give you the best care possible?”
Tina was our longtime former housekeeper at the Royal Jubilee Hospital. She somehow knew that this question was the key to her remarkably close relationships with patients and their families at our 17-bed Victoria Hospice in-patient unit. During her 30+ year career spent cleaning patient rooms day in and day out, amid rotating nursing shifts and a blur of end-of-life care consults, Tina’s friendly face was often the one predictable constant for patients. She chatted with them while she worked, got to know family members and other visitors by name, and remembered details about each patient’s real life (meaning, before they became patients) that made them feel unique and cared about. And it was reciprocal – everybody loved Tina!
Tina didn’t invent this question, but as a kind and naturally compassionate person, she knew intuitively that what’s known as the Patient Dignity Question was very, very important to patients and their families.
The question was developed as part of a concept that its founder called Dignity in Care.
Dr. Harvey Chochinov found that better healthcare interactions mean not only better patient experiences in the hospital, but better health outcomes and, interestingly, improved job satisfaction for those who work there.
And that question applies to everybody providing care for patients – from the staff who clean the patient’s room or deliver the breakfast tray to the physician, nurse, ward clerk or tech who interacts with each person.
I first learned of Dignity in Care during the years I worked at Victoria Hospice (before my abrupt retirement following a heart attack and subsequent new and improved diagnosis of coronary microvascular disease). I recall reading a journal article written by Dr. Chochinov, a Canadian palliative care physician and researcher, who concluded that patients feel better when their health care team listens to them with respect and attention.(1)
When our medical director at the time first told me about Dr. Harvey’s work, I rolled my eyes. Seriously? You have to do studies on this no-brainer? As if doctors don’t instinctively know this already? As if they won’t accept it until they see it published in a medical journal?
Med students have been learning this lesson for a long time, but it is apparently news to some. Back in 1925, Dr. Frances Peabody, in his famous address to his Harvard medical students, warned:
“The secret of the care of the patient is in caring for the patient.”
Even the perception that we’re getting good care – or not! – is powerful. At our Regional Pain Clinic (where my skilled pain specialist offers both respect and attention), patients learn about the freakish nature of pain. Here’s an example, as I wrote here:
“Taking a pain pill that you believe will work means that your sensation of pain actually begins to decrease even before the medication actually has time to be absorbed into your bloodstream.
But what if you suddenly realize that you’ve run out of those trusty pain pills? Because you believe now that you cannot get the immediate help you need, your nervous system pays more attention to those pain signals, and you will feel more intense pain.”
Consider also the remarkable phenomenon we call the placebo effect. A placebo – a fake treatment or a harmless, inactive substance – can sometimes improve a patient’s condition simply because the person has the expectation that it will be helpful. But it turns out that how that person is treated while encountering this placebo can actually intensify the placebo effect.
Dr. Ted Kaptchuk is a Professor of Medicine at Harvard Medical School and the author of the classic 1983 textbook, The Web That Has No Weaver. He led an interesting study on this phenomenon(2) as described in a Wired interview:
“Patients with irritable bowel syndrome were told they’d be participating in a study of the benefits of acupuncture. One group, which received the treatment from a warm, friendly researcher who asked detailed questions about their lives, did report a marked reduction in symptoms, equivalent to what might result from any drug on the market. Unbeknownst to them, the researchers used trick needles that didn’t pierce the skin.
“Now here’s the interesting part: The same sham treatment was given to another group of subjects – but performed brusquely, without conversation. The benefits largely disappeared.
“It was the empathetic exchange between practitioner and patient that made the difference.
“What Kaptchuk demonstrated is what some medical thinkers have begun to call the ‘Care Effect’ – the idea that the opportunity for patients to feel heard and cared for can improve their health. Kaptchuk’s study was a breakthrough: it showed that randomized, controlled trials could measure the effect of caring.”
As Dr. Kaptchuk explained, nurturing is of course no replacement for science. His research explained that:
” There is no evidence that placebos can shrink tumors; however, studies demonstrate that common symptoms of cancer and side effects of cancer treatment (e.g., fatigue, nausea, hot flashes, and pain) are in fact responsive to placebo treatments. Similarly, an experiment in patients with asthma showed that placebos can nonetheless dramatically relieve perceived symptoms.”
Suffering people reflexively seek care, but in mainstream medicine, “care” can mean specific treatment of a single culprit problem, and little else.
I observed this while lying on an Emergency Department gurney, waiting for the on-call cardiologist who had been urgently summoned. I overheard the nurses refer to me as “the M.I. in Bed 8” (M.I. =myocardial infarction, or heart attack). To those busy Emergency staff, I was no longer a real person lying there alone and scared. I wasn’t Carolyn. I was merely an errant organ taking up space in Bed 8.
Compare that with a nurse in the C.C.U. (the intensive care unit for heart patients). She met me in the corridor as I was being wheeled into her unit on a gurney later that day, placed one hand gently on my shoulder, and said calmly, “You’re in the right place. We’re going to take very good care of you.”
Or to borrow terms from the behavioral social sciences, healing interactions that target the whole person lying there can “nudge” patients toward shifts in their perceptions of their symptoms, illness and treatment – making them feel less disturbed or anxious. This shift, Dr. Kaptchuk says, is part of medicine’s moral imperative to relieve unnecessary suffering.
Dr. Chochinov’s Patient Dignity Question helps healthcare professionals to embrace that moral imperative, as he observed:
“Research has shown that this single question can identify issues and stressors that may be important to consider when planning and delivering someone’s care and treatment.
“The intent is to reveal the ‘invisible’ factors that might not otherwise come to light – and to identify these concerns early in the process.”
Here’s why Professor Jason Leitch, the National Clinical Director of NHS Scotland, urges his medical colleagues to participate in the annual day called What Matters to You? Day every June.
“There is nothing more powerful than taking a moment to connect on a personal level. We all know what that feels like, yet in health and social care, we’re not always as good at it as we think we are. We like to classify by heart rates, drug lists and disease. What if we took a moment to get to know patients, families and carers in a more meaningful way and maybe even shared something of ourselves too?
“My Dad cares about country music more than his macular degeneration, and my Mum cares more about tennis than her flu vaccination. That instant human connection matters more than anything else. ‘What Matters To You?’ conversations are deceptively simple, some would argue overly simple, but they are a start.
“Try it! You might be surprised what you learn.”
While many skilled healthcare professionals who have spent years devoted to academic training might turn up their noses in disdain at the thought that even a humble hospital cleaner like our Tina might be better at those human connections than they are, consider Dr. John Launer’s recent essay in the BMJ Postgraduate Medical Journal:(3)
Two physicians who happened to be hospitalized at the same time discovered, to their apparent amazement, that being a hospital patient can actually be an opportunity to accurately observe the culture of care around them:
“During our own admissions, possibly the most striking observation my colleague and I made is how small a proportion of the day each of us spent in conversational contact with any staff member. The majority of such contacts were in fact with nursing assistants while they carried out observations of our vital signs, or with domestic workers who were delivering meals, or cleaning and tidying.”
When I recall our Hospice housekeeper Tina now, it’s her engaging kindness I remember, that gentle curiosity inherent in looking beyond the patient in the drafty hospital gown in order to see and understand the real person inside.
As Dr. Kaptchuk sums up:
“We believe such effects are at the core of what makes medicine a healing profession.”
H. Chochinov et al, “Dignity Therapy: A Novel Psychotherapeutic Intervention for Patients Near the End of Life,” Journal of Clinical Oncology 23, no. 24, 5520-5525. August 2005.
T. Kaptchuk, F. Miller, “Placebo Effects in Medicine,” New England Journal of Medicine, 2015; 373:8-9 July 2, 2015.
Patients as Ethnographers”, BMJ
Q: Have you encountered your own “Tina” during your hospital experience?
NOTE FROM CAROLYN: I wrote much more about patient dignity and related topics in my book, “A Woman’s Guide to Living with Heart Disease“ (Johns Hopkins University Press, 2017)
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