by Carolyn Thomas ♥ @HeartSisters
“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 our 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 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.
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T. Kaptchuk, F. Miller, “Placebo Effects in Medicine,” New England Journal of Medicine, 2015; 373:8-9 July 2, 2015.
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.
Q: Have you encountered your own “Tina” during your hospital experience?
♥
NOTE FROM CAROLYN: I wrote much more about how we are treated by those in charge of our care impacts treatment outcomes in my book, “A Woman’s Guide to Living with Heart Disease” . You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use the code HTWN to save 20% off the list price).
See also:
Kindness in health care: missing in action?
News flash: care improves when doctors consider the whole person
The lost art of common courtesy in medicine
Six rules for navigating your next doctor’s appointment
Just not listening – or “narrative incompetence”?
Empathy 101: how to sound like you give a damn
Stupid things that doctors say to heart patients
Why aren’t more doctors like Dr. Bernard Lown?
Heart Sisters 
WOW!! I have no clue how.. But I guess due to the heart tags, I stumbled across your blog! It is the BEST blog I have ever come across in terms of heart information for people living with heart diseases.
Thank you so much for taking out the time & effort to educate & enlighten us further. I’m a 21 year old from South Africa living with a rare type of Dysautonomia which is life threatening.
Have survived a partial heart attack & another one suspected due to coronary artery spasms.
I’m learning so much more & you cover all the various aspects etc.
I definitely feel less alone in this battle of angina world & learning a lot.
Kind regards!
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Hi Kay – so glad you found your way to my site, but I’m not glad that you’ve been diagnosed at such a young age. Thanks for your kind words. I love the fact that your own blog is helping to raise awareness of rare disease. I hope you will also check out another terrific site all about dysautonomia (you may have already discovered it): “Living With Bob” by Rusty Hoe (I suspect that’s not her real name (!) but I do love her blog). Best of luck to you…
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When I had a TAVR valve replacement, I was fortunate to have it done at Beth Israel Deaconess Medical Center in Boston where everyone, from the cafeteria staff to the doctors, were the most friendly and respectful medical professionals I have ever met.
This is a weird time of life for me, because I’m just entering “senior citizen” territory, and I am appalled at the condescending treatment I get on a daily basis (like the ER doctor calling me “young lady” constantly), simply because of my age. But not with these professionals: I was a respected “colleague” in my health care team. It made the time so much more pleasurable.
Through a few hospital stays, I have learned that treating staff like human beings is kind of a rare behavior, apparently. I didn’t do anything special, just didn’t bitch when they did their job (whether it was taking blood or taking my blood pressure at 3:00 in the morning). I said hello when they came on shift. I thanked them for working on Christmas day when I was in the hospital at that time. Whenever I was being discharged, the nurses always complimented me (and my family, I should add) for being so friendly. Again–nothing special, just treating them like human beings doing a valuable job.
I took from this that “patient care” is a two-way street. While in the throes of medical issues, it is normal to be self-absorbed and cranky, but remembering that the person who’s sticking you with a needle is trying to help you and letting them know that you know that makes a huge difference in not just your experience, but in the quality of care you receive.
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Thanks for that important reminder, Wendy – and a nice shout-out to staff at BIDMC “from the cafeteria to the doctors”. This tells me that this is an organizational culture that values courtesy and respect, and expects no less from every staff member in every patient interaction. I hope some of my readers in the Boston area will pass on your kind comment to friends/family who work there. We are often quick to complain, but less likely to offer sincere compliments to hard-working staff.
I worked in a hospital for many years, and can tell you that my colleagues are no different than anybody else: working with pleasant people is more enjoyable than working with cranky ones. It’s pretty basic human nature. But ours was a unique in-patient unit (hospice palliative care) that featured a pervasive culture of caring from the top down. I think that’s one of the reasons I’ve been so shocked by the dismissive, uncaring and even downright rude behaviours observed on occasion during my routine post-heart attack tests, consultations and procedures since 2008. I know, for example, that none of our hospice nurses would EVER have spoken to our patients as I have been spoken to since then. Like you, I’m consistently friendly throughout every interaction (an occupational hazard of working in the public relations field for 35+ years!) no matter how I’m feeling. Yet sometimes I do wonder why I seem to be the only person in the room making an effort!
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I’ve had three major surgeries … open heart, bilateral knee implants, and last year radical hysterectomy due to uterine endometrial cancer. The list is too long on neglect, inappropriate treatment, lack of respect/dignity. The very short list represents dr/nurse/other staff who were professional, kindly, respectful.
For now, my main disgust is doctors who sit sideways in the exam room, hands on keyboard, eyes on laptop screen, my view of them is sideways, they don’t look at me. I speak but have no clue what they’re typing, I’m not asked how I am, are you depressed, what issues do you have today … but I am TOLD I’m depressed based on fibromyalgia on my new patient form. I did not ask for FM help, I happen to manage it well. I do not deal with depression, anxiety, mood swings … and yet I’ve found these statements on my medical files in dr notes – which get sent to all the drs I go to … my recent cancer made it necessary for me to have to see a long list of different specialists … every one of them, including the hospital, got these notes – and I was therefore treated accordingly … a patient with mental health issues … as my own caregiver, living alone, going to surgery along (by taxi) and needing to speak up for myself …
These labels posted on me are detrimental to my care, disrespectful, unprofessional and abusive. I’ve repeatedly replied I am not depressed … and not believed … to my face, in that way, calling me a liar!!! I’m 77 years old, an intelligent, independent woman fully aware with no signs of dementia … and yet treated as if I don’t have a brain in my head or the ability to know my own body and mind – mental health status!
Even with my serious medical issues I’m a calm, happy, spiritual person … with a lifetime of experience in managing my life experiences. This is relative to my current primary care doctor, who I am not returning to. I have an appointment with a new doctor this month. The primary doctor before this one used to lean over my chair, point her finger in my face and shout “you’re depressed” … she too never asked me if I was, I repeatedly said ‘no, I’m not’ – she’d say ‘yes you are’ as she turned her back and walked out the door. All based on my fibromyalgia diagnosis. There is not one bit of logic in this …
I’ve actually been depressed over being treated like this … I reached the age of 77 to be so badly disrespected … I manage my diseases so well, and yet I truly do feel at times that I might as well give up … added to these doctors is the hospital staff issue … there seems to be a total lack of professional respect … people who take these jobs to earn their living but have no interest in human beings. The few humane human beings in charge of patients are – too few!!
One more point: the doctor with the notes on my file also noted “monotone voice” – mine! She noted two things I’d told her that she heard wrong … one being that I said while on statins they caused my lipids numbers to go up. What I’d said was ‘even while on statins my numbers went up’ … and that’s only ONE misinterpretation of what I’d said while she had hands on keyboard/eyes on screen, not facing me! My last appointment with ‘current’ primary – who was on maternity leave – was with her father, head of their clinic … I’d never met him, he came in with a young medical student, without introducing her or himself. He spoke with her about me as he sat as the laptop, ignoring me. When I’d asked him to repeat something I couldn’t hear well, he said “I’m speaking to her, not to you” … my appointment, my med insurance paying, me paying my insurance and supplement … and yet, he could have filled the time without me there! I had a list of necessary questions, especially still recovering from major surgery … and I was ignored. What the heck is going on with the medical ‘profession’? The Do No Harm of the Hippocratic Oath is obviously unheard of!
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Hi Michelle – it’s reassuring to read that you describe yourself as a “calm, happy, spiritual person” despite so many frustrations with your health care. Good luck turning a fresh page with your new doctor.
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In my last few hospital stays I took the initiative of asking a similar question of those who visited my room – nurses, cna’s, cleaning people, etc and found it made such a difference in how I felt…relaxed & non-stressed…when I noticed how eager people were willing to talk about their job & what they liked about it. Each time they came in my room after that encounter, they seemed more willing to linger a little while & have a brief, but friendly conversation. It made such a difference for me.
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Thanks for raising that important point, Joan. This communication stuff certainly goes both ways! When you made an effort to connect with the hospital staff coming into your room, you became more of a real person to them because of that connection – not just another task on their shift schedule. Such a good reminder to all of us, especially when we’re well enough to actually initiate such an interaction.
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Carolyn – this seems like such common sense. Not once though have I been asked what matters to me or more importantly maybe, what my fears are. I hope the culture of only vital signs starts to slowly come around to patients as people! Great article!
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Thanks so much Jodi – I’m in the same boat (not once have I been asked anything like that patient dignity question!) This morning I read Isabel Jordan’s really good article on kindness in healthcare, and seeing patients as people.
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