I’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.”
Chi-Keong Ong, “Embracing Cicely Saunders’s concept of total pain,” BMJ, 2005 Sep 10; 331(7516): 576–577.
E. Cassels, “The Nature of Suffering and the Goals of Medicine”, (London, Oxford University Press, 2004).
P. Boston et al, “Existential suffering in the palliative care setting: An integrated literature review,” J Pain Symptom Management 2011;41:604-618.
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?