Pain vs. suffering: why they’re not the same for patients

~ Carolyn Thomas

by Carolyn Thomas    ♥   @HeartSisters

dont-forget-about-me-4225379_1280I’ve written a lot (here, here, and here, for example) about cardiac pain, because I live with cardiac pain called refractory angina due to a pesky post-heart attack diagnosis of coronary microvascular disease. This pain varies, but it hits almost every day, sometimes several episodes per day, and it can feel very much like the symptoms I experienced while busy surviving what doctors call the widow maker heart attack in 2008.

But there’s pain, and then there’s suffering. The two are not the same.

I spent many years working in the field of hospice palliative care, where we all learned the legendary Dame Cicely Saunders‘ definition of what she called “total pain”.(1)  This is the suffering that encompasses ALL of a person’s physical, psychological, social, spiritual, and practical struggles. Although addressing total pain is an accepted component of providing good end-of-life care for the dying, the concept seems to be often ignored in cardiac care for the living.

This is a significant issue, in my opinion, given what we know about the under-acknowledged psychosocial burden that so often accompanies a cardiovascular disease diagnosis.

Failure to recognize this burden means that people who are struggling become patients who can’t follow doctor’s orders, don’t take their meds, keep smoking, stop exercising, have higher rates of hospital re-admission, and face a higher risk of isolation, depression and poor longterm outcomes. See also: Living With the Burden of Treatment

As I learned during my palliative care career, many drugs and other therapies can help to effectively address physical symptoms, but if a patient is suffering because of mental, social or spiritual pain, no amount of drugs meant for physical pain can touch the deep suffering of total pain.

Yet starting in medical school, our physicians are trained to specifically focus on addressing physical symptoms, particularly those physical symptoms that can be measured, interpreted and explained using current diagnostic technology.

Other forms of a patient’s personal distress seem less important. As Mayo Clinic cardiologist Dr. Sharonne Hayes, founder of the Mayo Women’s Heart Clinic, once described her profession’s response to psychosocial symptoms:

“Cardiologists may not be comfortable with ‘touchy-feely’ stuff. They want to treat lipids and chest pain.”

In Dr. Eric Cassell’s book, The Nature of Suffering and the Goals of Medicine, he bluntly warned his colleagues:(2)

“The idea that it is medical science itself that treats the patient has failed.

“Actually, the idea that medical science treats the disease, and that the patient is subservient to the disease, is problematic.

“It is the patient that is most important, and not the disease, and it requires a person to understand and treat a person. This is illustrated by the concept of human dignity. The simple question is whether a seriously ill patient who is suffering because of a loss of dignity will have the same chance of treatment success as the person whose dignity is intact and is not suffering.

“Objectivity in the absence of subjectivity renders persons one-dimensional, and robs medicine of compassion and human relationships that define it in history and in the care of the individual person.”

In medicine, Dr. Cassell reminded us, the word “objectivity” refers to something that’s clearly able to be measured with blood tests or scans or biopsies. It’s also why objectivist medical research (such as the randomized controlled trial) attracts more funding and is more readily published than ‘softer’ qualitative research that is focused on quality of life.

After World War II, subtle changes began to affect the practice of Dr. Cassell’s chosen profession, as he wrote:

“It became accepted belief that it was medical science and science-born technology that made the diagnosis, and made patients better. The scientific knowledge was what counted.

“The ideal doctor became the doctor-scientist, the research doctor. The wise, knowledgeable and trusted clinician who took care of sick people began to lose status and disappear.”

Sadly, the disappearance of that “knowledgeable and trusted” doctor can mean fewer health care professionals who know patients well enough to understand how suffering can affect their medical outcomes.

Social scientists often talk about something called existential suffering.

In a review published in the Journal of Pain & Symptom Management,(3) researchers reviewed 64 papers and found 56 different definitions! Even the experts can’t seem to agree on precisely what this kind of suffering is, but commonly discussed themes of existential suffering mentioned by those who study (and suffer from) it include:

– lack of meaning or purpose

–loss of connectedness to others

-thoughts about dying

-difficulty in finding a sense of self

-loss of hope

-loss of autonomy

-disruption in one’s spiritual beliefs or value system

-loss of temporality (the state of existing within time, or having some relationship with the past, present and future)

When I worked in end-of-life care, I saw firsthand how sometimes simply being willing to talk (and far more importantly, to listen) to our patients and family members about death and dying, for example, could actually help them cope with anxiety over it, somehow making death less frightening or unpredictable.

I’d bet my next squirt of nitro spray that if you’re a freshly-diagnosed heart patient, you’ve already had an intense immersion in many if not all of those profound experiences of existential suffering during the early days or weeks since hospital discharge while trying to make sense of a health crisis that makes no sense.

And it can also be tough to round up family or friends who are willing to just sit and listen to what you’re going through. Any sincere expression of fear around the possibility of dying is typically met with swift denial and changing the subject from well-meaning listeners; such conversations can be seen as risky, depressing and not helpful – even when simply listening may turn out to be the most helpful therapy available.

Here’s one very typical example of how existential suffering might look, from Alaska cardiac psychologist Dr. Stephen Parker (who, more importantly to me, is a heart attack survivor himself). He describes a phenomenon common among his clients that’s called “a sense of a foreshortened future“.

In other words, after a traumatic event – in his case, a heart attack – the patient suddenly, often for the first time ever, “does not expect to have a normal life span” or anything that goes along with that expectation (like watching your children grow up, getting that promotion at work, or going to Paris some day).  As Dr. Steve tells his own story:

“Three months after the heart attack, I went to Home Depot to buy something for the house. I walked inside, saw the plethora of nice things to make a nice house, and started feeling extremely depressed.

“What was the point? I knew I was going to die within a short time.  

“I walked out without buying anything. I could hear a critical voice in my head repeating: ‘Get over it!’ But I could no more get over it at that point than I could fly to the moon (which is about where my mind and soul were hanging out).

“There is nothing like the sense of a foreshortened future to un-motivate behavior.”

Yet at the time of this distressing Home Depot episode, Dr. Steve wasn’t experiencing cardiac symptoms, nothing that you could call your cardiologist to report, nothing you’d even want to admit to your loved ones. Dr. Steve’s profound pain that day was an example of that “loss of temporality” in existential suffering.

I really like how U.K. physician Dr. Iona Heath(4) called on her clinician colleagues to focus on their patients’ humanity as a way of addressing this kind of suffering, as she wrote in the British Medical Journal (BMJ):

“Evidence-based medicine tempts us to try to describe people in terms of data from biomedical science: these are not, and will never be, enough. Such evidence is essential but always insufficient for the care of patients. It gives us an alphabet – but, as clinicians, we remain unsure of the language.

“Most clinicians are not scientists.

“They have a different responsibility—to attempt to relieve distress and suffering and, to this end, to enable sick people to benefit from biomedical science while protecting them from its harms.

“Clinicians must see and hear each patient in the fullness of his or her humanity in order to minimise fear, to locate hope (however limited), to explain symptoms and diagnoses in language that makes sense to the particular patient, to witness courage and endurance, and to accompany suffering.”

I once read a journal article written by the famous McGill University palliative care physician, Dr. Balfour Mount, who explained that sometimes, patients may suffer terribly even in the absence of any physical symptoms. Conversely, severe physical pain may be present without any suffering at all.
.
The two are not necessarily interchangeable realities, and it would ease the suffering of many if all healthcare providers felt more willing to simply acknowledge the suffering of patients.
.
 

♥

  1. Chi-Keong Ong, “Embracing Cicely Saunders’s concept of total pain,” BMJ,  2005 Sep 10; 331(7516): 576–577.
  2. E. Cassels, “The Nature of Suffering and the Goals of Medicine”, (London, Oxford University Press, 2004).
  3. P. Boston et al, “Existential suffering in the palliative care setting: An integrated literature review,” J Pain Symptom Management 2011;41:604-618.
  4. I. Heath, “How medicine has exploited rationality at the expense of humanity: an essay by Iona Heath,” BMJ 2016; 355, 01 November 2016

♥

NOTE FROM CAROLYN:  I wrote much more on the differences between pain and suffering in my book, “A Woman’s Guide to Living with Heart Disease“ (Johns Hopkins University Press, 2017). You can ask for this book at your local library or bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from Johns Hopkins University Press (use their code HTWN to save 30% off the list price when you order).

Q: How have you coped with suffering that wasn’t limited to just physical pain?

See also:

Depressed? Who, me? Myths and facts about depression after a heart attack

Two big factors that can influence a patient’s loss of self

The emotional labour of living with heart disease

The new country called heart disease

Women’s heart pain is both physical and emotional

Published by Carolyn Thomas

41 thoughts on “Pain vs. suffering: why they’re not the same for patients”

  1. Actually finding a doctor/cardio who still considers the “human” side of it all, quality of live vs. just end of life situations. It ceases to amaze me that with CMVD, refractory angina and vasospasms so many clinicians put the blame ALL on STRESS- more so for females it seems- and tell you you are fine when you know there is a physical problem. Everyone has “stress” in their lives, a certain amount probably even keeps us on our toes in a way, but one of the biggest STRESSES in my heart journey has been clinicians blowing off my concerns and issues. I LOOK good – I must be fine.

    If only the medical clinicians really knew what I endure. I do not even bring up anymore.

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  2. Carolyn: I was checking to see how much you had written about pain and here I landed…

    Just wanted to let you know that I can now go to Home Depot now without tears…

    and strangely, I was listening yesterday to a good book that talked about the difference between pain and suffering, that suffering had to with the loss of the feeling of wholeness or integrity — childbirth was used as example of something that was extremely painful but did not usually involve suffering (though what would I know)…

    (The book was “Every Patient Tells a Story” by Lisa Sanders, who essentially writes about patients with mysterious illnesses… she consulted on the TV series House… and faults House badly for not letting patients tell their stories [“Everyone lies”]. A good read — or in my case, listen. Much easier 🙂

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    1. Hello Dr. Steve – that’s such good news about you and Home Depot (there are lots of nice things to check out at HD!) I will check into the book you recommend. BTW, did you catch the recent Gray’s Anatomy episode in which Dr. Bailey has a heart attack (interesting article here about the show writer who incorporated so many surprisingly accurate factoids into a one-hour TV show – except of course the part where the head of cardiology meekly allows a (superior) cardiac surgeon from another hospital to waltz in for Dr. Bailey’s procedure. As if that would ever happen…

      PS Yes, it’s generally wise for men to shut up whenever the topic moves to how much pain is involved in childbirth…

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      1. Carolyn: it’s strange — or not so strange — that I don’t like watching hospital shows on television. They remind me too much of hospitals.

        I did watch Grays’ Anatomy years ago after the heart attack while riding a stationary bicycle; it was kind of a desensitization experience and helpful for that. However, even seeing someone getting an IV, let along having one is bit anxiety provoking.

        My body has learned to associate IV’s with all sorts of subsequent events. Of course, after so many IVs, I try not to take anxiety seriously…

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        1. I suspect that reaction is very common, Dr. Steve! You’ve had enough cardiac procedures by now that you’re on high alert to ‘what is coming next?’ I read about a UK study that conducted post-op interviews with heart patients, but had to move out of the heart institute venue for the follow-ups because so many patients were traumatized by having to walk through the hospital doors!

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  3. Hi Carolyn,

    I’m back to reread this great piece. It’s so true that suffering and pain aren’t the same. I hadn’t really thought much about that. It’s also so true scientists and clinicians have very different roles. Interesting how the pendulum has swung as to how patients should be treated.

    Your words about the disappearance of that knowledgeable and trusted doctor conjured up memories for me of Doc from “Gunsmoke.” Patients crave validation and deserve nothing less, and part of this means genuine listening by doctors is required which sadly, doesn’t always happen. Oncologists are generally not “touchy, feeling” either, but rather are laser focused on treating the cancer one way or another. Of course, this is what patients want, too, but yet there’s such a broader need. Again, it comes back to treating the whole person. I also loved the Home Depot story. Many cancer patients would totally relate.

    Thank you for this insightful post that again crosses over the “disease line.” Sorry about my rambling comment.
    N.

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    1. Thanks Nancy – oh, not “rambling” at all. You made such solid points. I’m guessing that many modern physicians would make fun of that old-fashioned Gunsmoke Doc character (or Marcus Welby, or any other kindly TV doc, given the intense time pressure most of them now feel to see more and more patients/do more and more procedures per day, thus somehow justifying their lack of “genuine listening”).

      The late Dr. Kate Granger of the U.K. (founder of the #HelloMyNameIs global movement) once described the horror of an oncologist who had to break the news to her that her Stage IV cancer had spread. He did not introduce himself, could not even force himself to make eye contact with her while dropping this bomb, and then “turned his back and left the room”! That’s hardly what anybody would describe as “treating the whole person”. I’m hopeful that there are, however, many good physicians out there already leading by example, realizing that it doesn’t actually take that much longer to communicate in a humane and caring way than it does to ignore the whole person and speak as if that person is just the barrier between the provider and lunch break.

      I agree – this topic crosses all disease lines. Suffering doesn’t discriminate between diagnoses!

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  4. Doctors are afraid that if they seem human, their clients will hang on them and make them waste lots and lots of time.

    But they want ‘informed consent.’ It’s a huge joke when you sign those forms.

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    1. Alicia, my own three docs (GP, cardiologist, pain specialist) are remarkably human! Informed consent is indeed a big issue in medicine, but not because docs don’t want to “seem human” – for heart patients, it’s more likely a result of, as heart attack survivor Jodi Jackson likes to call it, “post-heart attack STUN!” As I wrote here, when my now-cardiologist broke the news to me in the ER that I had “significant heart disease”, I could see his lips moving and I could hear sounds coming out of his mouth but I think he was speaking Swahili because I simply could not comprehend a word. I may have signed something…

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      1. I’m starting to get the nature of this whole process – STUN is where I still am, and I need to keep focusing on doing what I need to get past it.

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  5. Thank you for your meaningful story. I came across the term “heart failure” – makes it sound like the heart is no longer working at all and there’s nothing that can be done.
    Actually, heart failure means that the heart isn’t pumping as well as it should be. Congestive heart failure is a type of heart failure which requires seeking timely medical attention, although sometimes the two terms are used interchangeably.

    Your body depends on the heart’s pumping action to deliver oxygen- and nutrient-rich blood to the body’s cells. When the cells are nourished properly, the body can function normally.

    With heart failure, the weakened heart can’t supply the cells with enough blood. This results in fatigue and shortness of breath and some people have coughing. Everyday activities such as walking, climbing stairs or carrying groceries can become very difficult.

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      1. Medicine is FULL of jargon which dismisses, infantilizes, and ignores the patient and the patient’s needs.

        I remember my fury when discovering that they had listed me – a PhD research physicist at Princeton’s prestigious Plasma Physics Lab – as an ‘elderly primagravida’ – because I had taken the time to establish a career and a marriage (and an application to the astronaut program) before having my first child at 36.

        The list is long. And cardiology terms, I’m learning, are among the worst.

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  8. As a soon to be graduating Masters level Social Worker, I’m wonder if you or anyone out there knows of Cardiology practices that also employ a Social Worker on staff as part of treating the whole patient.

    I hope to use my personal heart experiences and my work as a WomenHeart Support Coordinator in my future work, most likely in a hospital setting. But ideally, I’d love to be involved with the patient on a continuum of service. I have a large practice in mind that I’d like to propose adding this to their array of services but would love to hear what you all think. Would it be helpful, do you know if it exists in your area?
    Many thanks in advance,
    Eve

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    1. Hi Eve – I love the idea of that “continuum of service” you mention! At our very busy teaching hospital, we have one cardiac social worker on staff. As much as she does extremely valuable work for patients and their families before discharge (that’s IF she has time to actually meet you before you are sent home, given how short length-of-stay preferences are these days!), once a patient goes home, she’s unable to follow up in any realistic way. Having a social worker attached to a cardiology practice (where, for example, I’d have regular follow-up appointments anyway and could plan an appointment with the staff social worker on the same day I’m booked to see my cardiologist) would have been SO helpful, especially for patients like me who had what I’d call late-onset issues after I failed my return-to-work trial period, had to apply for a disability pension, and basically started falling apart.

      To my knowledge, we don’t have any social workers as part of a cardiology practice locally, but I’d be curious to know if others have heard of this. You might have to be a trail-blazer here!

      PS: In honour of World Social Work Day coming up on March 21st this year, I’m running a blog post about cardiac social workers on the 19th – watch for it! 🙂

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      1. We have a couple of social workers on our cardiac units. I had to ask for a consult with one when I was an inpatient with congestive heart failure and my husband was in for a mitral valve repair, radio ablation and CABG. I said I didn’t know how we we were going to manage because my husband ordinarily got the groceries and did the laundry and the dishes.

        Now we were like a comedy act together. I had had to drive since his angiogram. We went to the grocery store, got out of the car and when I looked for him he had disappeared. Then I heard his voice: he had stood up, closed the car door and passed out! He was on the pavement on the other side of the car. An employee ran out of the grocery store and helped my husband get onto his feet. We went into the store. He had to walk quickly to keep from feeling faint and I could only walk slowly, with the support of the grocery cart. So he was racing around, doing loops of the store until he was exhausted. Then he went and sat in the car until I was finished and someone loaded the groceries.

        The social worker looked at me gravely and said, “Jennifer, that isn’t funny”.

        The next day another social worker came in with a list of places that would deliver groceries and more importantly, with the time and sensitivity to have a long, wide-ranging talk with me. She checked in with me periodically after that during my stay and was a real support for me.

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        1. Oh, Jenn – your story IS like a comedy act! I can just picture the two of you in the grocery store! How wonderful that you have a social worker to help with practical day-to-day things like shopping and so much more.

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  9. What a helpful article…I’ve been feeling all these things and had no idea what I was struggling with…now at least I know there is a name for what ails me…and that others struggle also.

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  10. Carolyn, thank you for addressing this seldom touched on issue.

    A year after my heart attack and CABGx4, I was in deep depression and making foolish decisions. I had dodged the bullet and had no idea as to what to do next. My husband and I divorced and I ended up moving to another area to try and start over. I made sure that I got out and had contact with people not just involved with me at work, kept to a strict regimen at night and weekends and kept busy. It took a few months, but I started feeling better and found that one day I was not in a depression any more.

    My husband and I reunited and married again and put our family together again. It is now 23 years after my heart attack and I feel grateful that I was able to get past that awful time in our lives. I certainly do not recommend trying to do it by myself again, but that was the way I chose at that time.

    No one had answers for me and I was lost. So, there is pain, physically, and suffering, mentally. They are very different issues.

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    1. Thanks for sharing that dramatic story, Sharen! What a perfect example of how a heart patient can feel utterly overwhelmed and “lost” in the early weeks and months, post-diagnosis. How lucky that both of you were still single when you emerged from your depression! You likely have two wedding anniversaries now to celebrate each year… ♥

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    1. Absolutely true for those with, generally, a 6-month survival prognosis. People who are lucky enough to have quality end-of-life services in their area should be urged to register for hospice/palliative care early on in the trajectory of their terminal illness. Yet so many mistakenly assume end-of-life care is only for the very final few days of life – WRONG! So many helpful end-of-life programs for both the terminally ill patient and family members when you’ve had that palliative consult.

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  12. I am not a fatalist by nature. I am the victim of a failed ablation that burned out my AV node and put me into Torsades where I was revived twice. I have a pacemaker now and continue to have as many as 1000pvc/day and microvascular angina.

    I have a big family and really never had the time to think about what happened and what my future will be. I think about it now because the pvc’s are increasing and the angina is increasing and my doctors are in a quandary about what to do. I haven’t responded well to medication and because of that I have had cardiologists refuse to treat me since my body didn’t do what they expected. Some want to do another ablation, which I have refused.

    So I’m in a holding pattern until they decide how to convince me to have another ablation. If they try again, I will probably fire them and find new doctors and start over again.

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    1. I’m so sorry you are going through all of this. I’m not a physician so cannot comment on your specific situation, but I can tell you that it’s not uncommon for patients to have more than one ablation procedure. According to Dr. John Mandrola’s excellent site (he’s an electrophysiologist and has also been diagnosed with atrial fibrillation himself) an ablation procedure like yours works just the way it’s planned to work about 60-80% of the time, but has to be repeated in one-third of procedures. No wonder you are feeling reluctant to have another.

      Re your PVCs (Premature Ventricular Contractions, or skipped beats, just for the benefit of other readers): Dr. John writes that patients with more than 20,000 PVCs per day can be at risk for developing cardiomyopathy (weak heart) – so that’s a lot more than you’re currently experiencing. I hope you are seeing an electrophysiologist specialist at this point to discuss what’s next, because your symptoms mean this is a quality of life issue. I’ve written a lot about microvascular angina (my own diagnosis) here and here, for example. Meanwhile, instead of planning to fire your doctors, your only job right now is to become the world expert in your condition. Nobody can force you to have an ablation or any other cardiac procedure, but you can be as well-informed as possible before your next consultation or your decision to seek a second opinion. Dr. John’s site can help you with that. Best of luck to you…

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  13. This post made me weep. Existential suffering – it has a name!

    Our medical system is not designed to even acknowledge its existence, it is designed to eliminate the empathy that most medical students enter with, it is designed to force focus on technological and financial aspects of providing care.

    In my opinion, it begins with the MCATs, which are heavily weighted for science and technology and not on emotional intelligence, and continues from there. On point, Carolyn, on point. Now to design the cure…

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    1. Thanks so much, Dr. Anne – Yes, it has a name! I’m hopeful that things might change, and it starts not only during med school but, as you say, in the application process that determines the kind of applicants being recruited in the first place.

      And since we know that the concept of “total pain” to address existential suffering is already very well-entrenched in at least one area of medicine (end-of-life care), I’m also hopeful that other specialties will soon run out of excuses not to, as well.

      I also wanted to say that the relief of existential suffering (by simply being willing to listen, for starters) is not necessarily restricted to physicians. In my hospice palliative care career, we saw this caring firsthand in Tina, who had been the day housekeeper in our hospital building for over 30 years. She was a wonderful, jolly Slavic lady who obsessively cleaned every inch of every patient room, bathroom and lounge area to within an inch of their lives! Our patients and family members loved Tina, whose smiles and hugs greeted them every morning when she’d arrive for her shift. She made sure she knew all of them by name, and every day, in every one of our 17 patient rooms, while she was sweeping or mopping or scrubbing, she’d listen to their updates and worries. Sometimes she spent some extra quiet time in the room if a patient was alone and wanted to chat, because she thought it was important to listen until the story she was hearing was done. She’d laugh with them during their grandbaby visits, and cry when she had to do a “terminal clean” after the death of a favourite patient. She had no specific training in relieving suffering, but she was a kind and open-hearted listener. I know for a fact that her loving presence was indeed a healing aide to thousands of our patients and families over the years.

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  16. How does one educate a doctor to view patients as whole people, not just a batch of lab results? How does one educate doctors to let go of out-of-date training and recognize not every patient’s body has read the textbook? How do I, specifically, get doctors to see me as a unique, suffering individual who deserves personalized treatment?

    I’m thinking about sending the link of this page to at least two of my doctors, both of whom use labs to base their treatments on – and they both only want lab results to be low in range, to boot, even though I’m sitting there in front of them with every symptom possible showing low labs aren’t good for my body…

    Holly

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    1. Hi Holly – I think, as Dr. Anne says (above), that this is a systemic problem in medicine, so one patient changing one doctor at a time will be a long slog. We may have to wait for a new generation of med students (and more importantly, a brave older generation of those who actually teach med students) to embrace the concept of Minimally Disruptive Medicine as Dr. Victor Montori and his Mayo Clinic-based team are working on!

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