by Carolyn Thomas ♥ @HeartSisters
Those heartbreaking fundraising ads with tiny cancer patients or neglected puppies beg us to send in our $19 per month donations right away. Each ad tugs at our hearts and wallets. Donors tend to fund what we love (puppies) or what we fear (cancer).
And in healthcare settings, hospitals are competing for scarce donor dollars. Many hospital fundraisers have learned that one way to get help with the heavy lifting of a major campaign involves identifying specific people who are known as the hospital’s Top Grateful Patients. Yes. Seriously. . .
A list of Top Grateful Patients can be used for a hospital’s range of spending needs – like targeting wealthy donors to fund new imaging equipment, medical research or construction projects.
The Hastings Center is a non-profit research institute that’s been addressing social and ethical issues in health care, science and technology since it was founded in 1969. In their 2022 Bioethics Forum essay called “Grateful Patient Fundraising: Ethically Problematic or Altruistic?”, they question some Top Grateful Patients fundraising strategies.(1)
For example, they write about American hospital fundraising departments (also called Development Departments because they’re developing relationships with donors for longterm funding benefits). The staff can use public data to identify wealthy donors. In fact, the Hastings Center criticizes the 2013 changes in U.S. privacy legislation which now “allows hospitals to conduct wealth screenings, often before a patient has even had a medical appointment, to determine the patient’s capacity for giving.” (You can read all 13 pages of privacy rules here).
The Hastings Center points out another common practice which encourages hospital physicians to approach their own Grateful Patients about donating. This theory assumes that it’s hard to say NO when the doctor who has helped you is the one asking you for money. But as a heart transplant surgeon in California once warned: “Asking patients directly for a donation can be delicate.”
No kidding.
Some doctors warmly embrace this Grateful Patients philanthropy concept, while others may prefer to stick to doctoring instead of unpaid side gigs as hospital fundraisers. One such example of the latter is Dr. Michelle Burack, a neurologist in Rochester, New York. The journal Narrative Inquiry in Bioethics published her essay called“Targeting Patients for Donations: Opening a Door, or Pushing Them Through It?”(2)
Dr. Burack wrote about an uncomfortable conversation on this topic involving one of her own patients:
“While I was leading a patient to the exam room for a routine appointment, she told me about a solicitation letter she’d received from our hospital’s fundraising office – which specifically mentioned my name. The patient then said:
“I have to say, when I first opened that letter, it was kinda creepy. But I’m so grateful for your excellent care that I felt like I had to send something.”
And the Hastings Center also expresses concern that the Top Grateful Patients lists imply that “there is no worthwhile way to show gratitude or give back if a grateful patient is without the means to make financial contributions.”(1)
As a heart patient who now depends on a very modest retirement pension, I’m pretty sure I’ve never been targeted as a Top Grateful Patient on any hospital’s wealth screening radar.
I’m more of a Bargain Basement Grateful Patient. But a few years ago, I was identified as a potential recruit to do some heavy lifting for my own hospital’s fundraising campaign.
Here’s how it happened:
When my book came out (“A Woman’s Guide to Living with Heart Disease“, published by Johns Hopkins University Press), the senior fundraising staff in the same hospital that had misdiagnosed me and sent me home in mid-heart attack asked me to help with their upcoming campaign to raise funds for new cardiac equipment.
At our first planning meeting in the hospital cafeteria, the staffers were so nice! They told me that they loved my Heart Sisters blog, they loved my book, they loved my free Heart-Smart Women public presentations (described by one as “part cardiology bootcamp and part stand-up comedy”).
The trouble was this: they did not love my hospital story.
Well, they did love the very dramatic final tail end of my story – the part that involved my second trip to their Emergency Department, on the day my widow-maker heart attack was finally correctly diagnosed and appropriately treated by their heroic doctors. They loved that part!
But after the love was shared around our cafeteria table, the next words out of the mouths of the fundraisers were essentially the script I was expected to follow. For example, they told me upfront:
Don’t mention that your heart attack was originally misdiagnosed as acid reflux in our Emergency Department.
Don’t mention any of your textbook heart attack symptoms (central chest pain, nausea, sweating and pain down your left arm) that were ignored by our Emergency staff.
Don’t mention that our Emergency doc did not request a consult with the on-call cardiologist that morning.
Don’t mention that before sending you away, the Emerg doc advised you to “just call your family doctor to request a prescription for antacid drugs.”
Don’t mention the Emergency Department nurse who came to your bedside and sternly scolded you: “You’ll have to stop asking questions of the doctor! He is a very good doctor, and he does NOT like to be questioned!” (By the way, the only question I’d asked him was: “But Doc, what about this pain down my arm?”) I’m not a doctor, but even I knew that arm pain is not a sign of indigestion.
And finally: Don’t mention that it wasn’t until your second trip back to our Emergency Department that your dangerous symptoms were taken seriously (by a different doctor).
Then the fundraisers told me what I could mention:
You can talk about the fantastic care you received on our cardiac unit.
You can talk about the skilled experts in our cath lab.
You can talk about our caring cardiac nurses.
You can talk about how the cardiac team SAVED YOUR LIFE!
You can talk about how grateful you are to the cardiology team for keeping you alive.
You can talk about the wonderful, state-of-the-art, world-class cardiac care at our hospital – yes, even the story (or was it a rumour?) about the Saudi royal prince who flew all the way to Victoria to have cardiac procedures done here instead of there.
I got that message loud and clear. And so I ended up doing whatever they told me to do. I did TV and newspaper interviews about our hospital’s fantastic cardiac care, I spoke at official campaign events, I urged my audiences to be generous in their financial support, I smiled for media photos with my cardiologist and major donors, I did a video presentation of my story that was aired during the final gala event (too late in the evening for this heart patient to speak in person!) – and I left out all the parts the fundraisers wanted me to leave out.
Looking back, I now wonder: why did I say YES to an invitation to lie about my hospital experience?
I could really relate to Dr. Burack’s patient, who despite feeling ‘creepy’ about that solicitation letter, somehow felt obligated to pay up. By the way, Dr. Burack also wrote that in February 2021, news broke that her own hospital “had inappropriately expedited access to the COVID vaccine for wealthy donors.” So maybe being a Top Grateful Patient pays off!
In my case, it was almost as if I didn’t want to appear ungrateful by mentioning the nasty misdiagnosis part of my hospital story.
But that WAS my story.
And worse, it continues to be the story of countless other women.
These are the women who worry they’re making a fuss over nothing because the Emerg doc doesn’t believe them, whose priorities clearly put everybody else ahead of their own needs, who apologize to ambulance paramedics and Emergency Department staff for needing help, and who stay quiet instead of speaking up. We know that, as the Heart and Stroke Foundation spelled it out bluntly: women’s heart disease is still being under-researched, under-diagnosed and under-treated compared to men.
After the final Saturday night fundraising gala event, local headlines announced this: 
This event happened in 2017. Since that experience, I’ve abandoned those required Top Grateful Patients scripts, and this is what I wish I’d said back then:
“It simply does not matter how much your hospital spends on state-of-the-art cardiac care if women cannot get past your Emergency Department gatekeepers to access it.”
And then I’d add: “Don’t ask patients to lie for you ever again.”
♥
1. 1. “Grateful Patient Fundraising: Ethically Problematic or Altruistic?” The Hastings Center, Bioethics Forum, December 22, 2022.
2. Burack, Michelle. “Targeting Patients for Donations: Opening a Door, or Pushing Them through It?” Narrative Inquiry in Bioethics, Johns Hopkins University Project MUSE, vol. 12 no. 1, 2022, p. 18-20.
DONATE image: DigitalArtist, Pixabay
Q: How would you have handled that invitation?
♥
NOTE FROM CAROLYN: I wrote much more about why women’s heart disease is still significantly more likely to be misdiagnosed compared to our male counterparts in my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 30% off the list price when you order).
Heart Sisters 
Hi Carolyn from Salt Spring Island,
I was so excited to discover and subscribe to Heart Sisters a few months ago! Since beginning my heart health journey over 2 years ago, you are the first woman I know of with my suspected diagnosis, Microvascular Heart Disease. Suddenly I don’t feel alone in this!
Fortunately for me and unlike you, I have never had a major heart attack. My symptoms began in the Spring of 2022 as mild pain in my chest, moving down both arms, as I half-jogged the 8 minute walk to work or walked briskly two blocks uphill for groceries. I’d done these exact activities for years with no symptoms. Even though I knew these to be classic angina symptoms, I hesitated to seek answers. I was 57, lean, young-looking, a nonsmoker and non drinker. How could I have heart disease?
Then I got the letter. My young female GP was leaving private practice, effective immediately. She was unable to secure a replacement GP, but a locum would provide service through September 2022 before we would be set adrift.
I immediately went to the local Emergency (the GP locum was already booked for the next 2 weeks) and explained my symptoms, which I had just experienced simply walking uphill to the hospital. They did BP, an EKG (normal), and suggested I follow up with the locum. I used to be a physiotherapist, so my knowledge of the human body and medical terms has been a great asset in advocating for myself. I advocated for an exercise stress test, which I had in July. The test was low intensity and didn’t elicit strong symptoms. The doctor administering the test thought I might have asthma. I used inhalers with exercise for months, with no change in symptoms.
At this point, I had officially joined the thousands of medical orphans in Canada, so I turned to telehealth services. I found a female GP who listened and took my symptoms seriously. She prescribed Nitroglycerin patches (no change in symptoms) and put me on the shortest waitlist for a Victoria area cardiologist. In retrospect, perhaps I should have requested a cardiologist with one of the longest waitlists.
In January 2023, I had my first and only visit with a cardiologist. By the time he burst into the exam room, he was 2.5 hours late, saying he’d had a crazy morning dealing with patients with complex issues. He took one look at me and seemed to decide right then and there that I was wasting his precious time. He “listened” to me describe my classic exercise-induced angina symptoms, glanced at the EKG and stress test results from 6 months ago, and dismissed me after less than 3 minutes! At the open door, I turned and asked, ”But if my symptoms aren’t angina, what could they possibly be”‘ He responded, “I don’t know, but it’s not your heart.”
In the car park, I got into my car and cried in frustration. I was so upset. On February 13th, I actually emailed him, reminding him it was Wear Red Canada Day, Women’s heart health awareness day. I said I was shocked to learn that heart disease is the leading cause of premature death in women in Canada. I also sent him a link to the story of an Alberta woman who fought ten years to get a diagnosis.
On the bright side, I got a GP! A wonderful doctor actually came out of retirement to take on some of the 55 year+ Salt Spring residents without primary care. He did what he could, having me wear a Holter Monitor and sending me for an echocardiogram, but neither shed any light on my symptoms.
Having developed an allergy to cardiologists, I learned from a friend that a local Internal Medicine specialist had the authority to send patients for a CCTA, cardiac computed tomography angiography, a highly effective diagnostic for obstructive heart disease. After a thorough appointment in which I felt heard and respected, I eventually got the CCTA.
As I awaited those results, and continued to search for answers online, I came across a description of Coronary Microvascular Disease (CMD). A light bulb went off! It often first presents in women in their fifties, many of whom have had a period of chronic stress, and is difficult to diagnose since it lacks an obstructive component. I thought, “If I have this, the CCTA will not show it.”
I sent off my findings on CMD to my Internal Medicine specialist. By the time he phoned with the negative CCTA results, he had done his own research on CMD and decided I should begin the recommended drug treatment. Almost immediately my symptoms with exercise were greatly reduced! I couldn’t believe it.
I have been on the drug for a year now and my symptoms are stable. Perhaps that is why I have not pursued trying to get a definitive diagnosis for CMD, even though I now know which specific tests can provide this. Perhaps I am self-advocacy weary. Perhaps I fear dipping my toe in the cardiologist pool again! If I feel this way, a former medical professional who has worked in hospitals, there must be many other women out there hesitating to advocate for their heart health because of prior negative experiences.
Tamsin McKenzie
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Wow Carolyn!
This story is truly appalling. What gall!!! I would have gotten up there, said all the words they wanted me to say, and then pulled out a copy of your book, held it up, and promoted it shamelessly, adding that the true story of your experience as a heart patient at that hospital is all in there … and when people bought and read it, they would discover what really happened.
And the people who asked you to speak would have been helpless to stop you because you weren’t saying anything against the care you received!
God bless!
Meghan McComb
“The two most important days in your life are the day you are born and the day you find out why.” Mark Twain
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Hi Meghan – What I really found the most galling was not that they wanted me to publicly praise the cardiac treatments I did receive at this hospital (that’s understandable and predictable when you’re prepping somebody to endorse your work – you want them to hit the high notes!) but what is really galling to me now is that they openly told me to lie (and my agreement to not tell the truth is the same as lying, in my books). The oddest thing about this whole experience (which I didn’t mention in this post) happened during the big gala event that closed the fundraising campaign. A former cardiac nurse at our hospital (and now a heart patient herself, who also has known my story for years) was attending that dinner, and watching the video presentation that I’d filmed a week earlier for the big screen. She immediately sat up straight as soon as she realized that I was starting my heart attack story at the END, not at the beginning (the awful misdiagnosis part of my story).
She started loudly stage-whispering to her dinner companions: “That’s not how it happened! That’s not her story! Why isn’t she telling the whole story?!?!” Then she phoned me first thing the next morning to ask why I’d left out such an important part of that story. I think that’s when it really sunk in how wrong I had been to agree to lie about such an important experience.
Take care. . . ❤️
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Wow! That was a great article about the Emergency Department of many hospitals. I have been very lucky on my health journey and always seem to get the understanding doctors.
I ask questions because I want to know what’s going on and they always answer me.
I have found that they never tell you your blood pressure. I always ask. I am unique because I worked in Cardiopulmonary at Richmond Hospital for over 10 years, and I have too much knowledge which is a good and bad thing.
I talk to my doctors on their level and I am my own advocate. I wish all women had the courage to question their doctors – however most think of them like a God, but honestly they are only human like us.
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Hello Heidi – You are very lucky to “always get the understanding doctors” (where is that list please so I can share it with my readers whose symptoms are not believed?!) 😉
I suspect that your career background helps to ease your communication experiences (talking to doctors on their level) with clinicians of all types.
You’re so right: we know from academic research on “non-compliant patients” that women are significantly less likely to speak up, question their doctors, ask for a second opinion, etc. compared to our male counterparts. There’s an entire field of research in fact that explores this “fear of being perceived as a difficult patient“.
Yes, doctors are indeed very human – despite the cardiac nurses’ joke that goes:
Q: “What’s the difference between God and a cardiologist?”
A: God doesn’t believe he’s a cardiologist!”
Take care. . . ❤️
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Q: How would you have handled that invitation?
Hi Carolyn, I can understand how in 2017 you got caught up in that particular situation. Now you feel regret for your participation for the reasons you have mentioned. All one can do is learn from mistakes and make adjustments.
I have certainly made many mistakes myself.
Remembering that I am doing the best that I can to make sense of this world and my own life. I give myself a lot of grace every day. I hope you will give yourself grace too. ❤️🍎
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Thanks Teri for those kind words. You’re right, I do regret agreeing to their invitation in the first place, and because the staff were all very familiar with my ENTIRE hospital experience, it’s hard to understand why they would have even approached me! They must have been shocked when I agreed!
You are so right – we are all doing the best we know how to do at the time!
Take care. . . ❤️
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I am a retired professional, major gifts fundraiser. I am also a Type 1 diabetic of 51 years, a heart attack survivor (stent recipient), and a cancer survivor with chronic heart failure from my 2011 chemo.
I have raised major and principal gifts for the University of Minnesota Medical School’s transplant teams and diabetes cure research staffs and for The Minneapolis Heart Institute’s cardiologists at Abbott Northwestern Hospital, where I receive my cardiology care by physicians with whom I raised major support for teleheart (rural telehealth sites).
I also raised major/naming support for their beautiful, new Richard M. Schulze Neurology floor, where I was later a patient after a stroke.
I want to challenge the negativity about professional fundraisers here. I had the sheer joy of working with patients whose lives were saved by dedicated experts, who shared equal joy in helping save and better those lives. Not one of these donors would say they were taken advantage of, or told what to say, as this article implies. I’ve lost donors who became very close friends; one of them became my BFF and passed in 2015 after two kidney transplants, a pancreas transplant and quad heart bypass. She came to us for surgery that nobody else would or could perform. And she wanted to pay it forward, so she did. Others memorialized loved ones, funded special procedures and research and endowed chairs for continued funding of key positions.
This article does not capture or reflect the dedication of myself and my colleagues who worked in these institutions, nor the physicians I worked with who sat and cried with their patients when things did not go well or when they did. This article does not reflect that those of us who earn the Certified Fund Raising Executive credential adhere to a strict code of ethics, which I also studied in my undergraduate and graduate education.
I salute my colleagues in the institutions where I worked, as well as all the others, who work hard to earn and respect patient trust and raise funds to help improve and save lives. It’s a worthy profession that is all too misunderstood. I am proud of the many, many millions of dollars I raised with integrity from trusting, caring grateful patients. My definition of this term is much broader after 35 years of this work. And also after experiencing diabetes, cancer and heart disease…and surviving now 13 years following a “go home and enjoy your last Christmas” cancer diagnosis.
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Hello danechick and thank you for sharing with us so eloquently your impressive fundraising career achievements and equally impressive personal healthcare experiences over many years. I can tell by your passionate reaction that this is a topic that’s clearly near and dear to your heart.
Take care. . . ❤️
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A while back I had my gallbladder out and after the surgery when dismissed to go home, was told “Don’t make any financial decisions in the next 24-48 hours while you are recovering from the effects of general anesthesia”.
Within a few hours of returning home I received a fundraiser call from the very same hospital. Well, I had to decline, restating what they had just told me a few hours previous.
I laughed, they laughed, I hung up.
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Oh my, Jennifer! I had to laugh too – at what my little 3 year old grandson would call an “oopsie!” The difference is that he already knows what an “ooopsie” is – but that full-grown fundraising person did not. Didn’t read your file? didn’t pay attention? new at this job? Who knows why they made that unfortunate phonecall!!
And sadly for that hospital, you’ll be telling that unexpectedly entertaining story for a long time.
Take care – keep laughing at those ooopsies! ❤️
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Dear Carolyn
I can definitely understand that you are wondering why you not only said “Yes” – but agreed to omit so much important information from your speech.
However, as women in what is STILL a man’s world, it’s difficult for most of us to say something like, “I am flattered/honored/delighted that you are asking for my support. Let me think it over, and I’ll get back to you.”
If there’s one thing I’ve come to learn (the hard way) in my 80 years, it’s that one almost NEVER has to give an answer on the spot.
Taking time to consider what we would be promising to do is really important, and it’s something we all deserve to do, no matter the issue. But ESPECIALLY when your “gut” is telling you to put on the brakes (or run the other way!)
After all, whomever is asking for our help has obviously put a lot of time and thought into what they want from us; it’s only fair that we be permitted take time to answer them.
A “good girl” always says “Yes,” and says it with a smile. A good girl is always helpful, regardless of how big the burden will be. Hey! That’s how we have been programmed all our lives!
It’s an automatic response, and really hard to override. Nevertheless, we DO have the power to re-program ourselves. Most of us were never taught that NO is not only a complete sentence, but is a valid reply to a question.
Simply looking in the mirror and practicing saying “No,” or “Let me think about this before I give you my answer,” provides us with some options over automatic pilot.
Much love,
Gloria
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Oh Gloria – I really appreciate your very wise words here. The irony is that in 2013 (four years BEFORE I said YES to the fundraisers when I should have said: “Thanks so much for inviting me – Let me take some time to decide if I want to lie about my own life experience for your benefit. . .” — I wrote an article here called “Why ‘NO’ is a complete sentence” !!
So it’s not like saying NO is a foreign concept to me – yet somehow in that specific case I didn’t feel I could back out once I’d said YES.
I’m thinking you’re so right – I responded quickly to their invitation as if on autopilot. Saying NO has been something I’ve worked on and written about – and the more I think and write about this issue, the more I realize I sure need that practice you recommend.
THANK YOU ❤️
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Carolyn! As a retired fundraiser, I’m appalled at the brow-beating you went through. You had every right to decline their “offer” and go on about your life; sticking to your guns if they asked again.
If they had an ounce of empathy, they wouldn’t have asked you in the first place!
I retired in 2020 and, in the 10 years leading up to my exit, we would attend professional development seminars that addressed trends in the industry. One of the Power Point slides I remember seeing was one showing a nurse and a puppy. Healthcare and animal welfare groups received – and continue to receive – the most fundraising dollars in North America and Europe. (Those of us who were working to support other charities and organizations felt like chopped liver!)
The American model of health care fundraising is, indeed, creepy. But I can understand why they’re doing it. They really, really need fundraising dollars. Canada’s somewhat universal healthcare has meant that, up until recently, we don’t have to be as aggressive about fundraising, but it’s starting to creep in here too as government funding either remains the same or is clawed back.
And you became caught up in that new wave, based on the American model. Happily, there’s a different new wave in Canadian fundraising. One that isn’t as “in your face” as the US model and things are improving.
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Hi Deborah – I know what you mean about that “puppy & healthcare” advantage – I worked for years in Hospice/Palliative care and our development staff used to look at the inspiring Cancer Agency ads that promised each year: “Help us raise $6 million and we’ll find a cure for cancer!” vs our promise: “Help us raise $6 million – and everybody dies!”
My friends who have worked in education fundraising (at UVic and Royal Roads) faced similar challenges – as you know! Education apparently just isn’t warm and fuzzy like puppies are. . . So educational institutions must by default count on their graduates for annual funding – because who else is going to step up?
This morning, an Ontario pharmacist reminded me that “Health care can’t exist without an MRI today and yet none of them are government funded.”
But this is not actually true: the “Ontario government funded $20 million for 27 new MRI machines in hospitals across Ontario.” And in BC, our provincial government has recently funded both MRI machines & CT scanners for our hospitals.
But for people who believe that “all governments are useless”, no amount of evidence matters!
Take care. . .❤️
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“No Thank You, But blessings on your endeavors to improve patient care.”
Every solicitation I get in the mail for abandoned puppies, or helping homelessness, or food for those without, I send my gratitude (not money) for their hard work in helping the less fortunate.
Then on my own, in my time, once a month I consider what causes, if any, I would like to financially support.
It’s just a fact of life that in my retirement, I have much more love than money to give.
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Hi Jill – I love that “more love than money” sentiment.
I can also appreciate the plight of professional fundraisers – pressured to beat last year’s funding goals, year after year after year – always coming up with some new tag line or catchy theme that will somehow convince us all to unlock our wallets.
I too am living on a a modest retirement budget. I recently updated my will and decided to pick 4 of my favourite non-profits that I have volunteered with over the years. In my will, I left each one the same gift amount that they’ll receive after I die (when I won’t need that money anymore – luckily nor will my grown children).
This was actually an uplifting exercise. One of my favourites, for example is a volunteer-driven charity with a small annual budget that I know requires a stressful struggle every year to attract funding grants from government or service clubs. My own bequest will fund that group for two years! I had fun imagining their faces after my will is probated!
I certainly can’t afford that kind of gift now but it’s doable after I’m gone!
Take care . . . ❤️
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