View From the Other Side of the Stethoscope
As an internist and cancer survivor, Wendy S. Harpham, MD, FACP, offers a unique perspective on oncology practices.

Thursday, May 25, 2017

​Does a patient's hope matter? Yes, of course. A more interesting question is, "What should a patient hope for?"

As a practicing internist, I knew patients' hope mattered. What I didn't realize until a few years into my own survivorship was the importance of investing only in healing hopes—specific hopes that help patients get good care and live as fully as possible. My understanding of which hopes are healing began with a definition of hope and an exploration of mechanisms by which hope might help patients.

Hope is a pleasant feeling linked to a belief that the desired outcome could happen. As a cancer patient, I assure you the pleasantness counts for something. Like honey added to a bitter mix, hope takes the edge off fear, sadness, and other unpleasant emotions of survivorship.

Hope helps patients feel better. Does it help them get better? It's likely that hope, along with expectation, contributes to the placebo effect, self-healing significant enough to require placebo controls in clinical trials.

For the sake of argument, let's assume a patient's hope has no direct effect on healing. Still, I believe it plays a vital role in physical well-being. Here's how: Hope motivates patients to action. I can't imagine undergoing chemo without hope that the treatment can help. Hope also helps patients wait when the outcome is totally beyond their control. Hope stirs the needed fortitude and patience, and it reins in the desire to do something when the doctor's prescription is tincture of time.

The power of hope to help me act and wait earns it a respected place in my therapeutic regimen. Like conventional therapies, hope can help me or harm me, depending on what I am hoping for. How can I determine if a hope is healing? Without a hope-o-meter and in search of a proxy gauge, I found a clue in the fact that hope arises only in settings of uncertainty about outcomes that matter.

Think about what you hope for each day. You don't hope the sun will rise tomorrow, because that's the most certain prediction in your universe. You don't hope my grandson will sleep through the night, because the outcome doesn't affect your life. In contrast, if you're driving to an appointment and running late, you hope the traffic is moving well. With every patient encounter, you hope to say the right things and hope your prescriptions will yield the best possible outcome.

Because hope arises only in settings of uncertainty, it follows that hope is healing if, in times of uncertainty, it helps in health-promoting ways. My hope-o-meter took the form of a question: "Is this hope motivating me to proper action and/or helping me wait?"

As a scientist, it's second nature for me to ensure my facts are correct. Doing so protects me from false hope—hope based on misinformation or misguided beliefs—that can steer me away from proper action (see False Hope, Dec. 25, 2012, Oncology Times).

My surprise discovery was that many realistic hopes are not healing. Consider hope for good news, a common hope of patients undergoing diagnostic tests. For years, I'd hoped for good news, a hope reinforced by everyone who told me they, too, were hoping for good news. Over time, I realized how little that hope helped me through the uncertainty. If anything, it exacerbated my sense of impotence and vulnerability while lying in the CT scanner and while waiting for results. After all, my hope wasn't going to change what the tests showed. And hope for good news stirred fear of future disappointment, an unpleasant feeling that offset the pleasantness of my hope.

If hope for good news doesn't help with the uncertainty, what should I hope for? Logic tells me I should hope for the news that can best help me, which is, of course, accurate news. My evaluations have been remarkably less stressful since adopting "hope for accurate news" as my go-to hope. That hope works by giving me a sense of purpose as I hold still during scans; by fostering patience, as I envision my physicians carefully reviewing the results; by stirring confidence that the news, whatever it is, will help me; and by preparing me for any news.

My life changed for the better once I began assessing my hopes, investing only in healing hopes, and letting realistic hopes drift into the background if they weren't helping.

Over the years, I've developed a repertoire of hopes tailored for specific circumstances. Most of my healing hopes narrow the time frame of uncertainty. This increases the frequency of realized hopes, which generates an uplifting feeling that nurtures hopefulness. And all other things being equal, the disappointment of a dashed short-term hope is less than if I'd been hoping for a long time.

In addition, most of my healing hopes offer me a role in bringing them to fruition. This focuses my attention on changing the things I can change. Serenity replaces anxiety as each action I take to increase the chance of the desired outcome gives me another reason to hope for the best.

As one last example, one of my greatest hopes is that my current remission lasts. Yet, this hope is rarely on my mind. I'm too preoccupied with other hopes, such as my hope of giving my body the best chance to stay healthy, a hope that motivates me to eat healthful foods when I have no appetite and to exercise when I feel fatigued. Because I can realize this hope often, this hope helps me feel better as it helps me get better. It's a healing hope that helps me manage the uncertainty about my future health.

Patients need hope. Guide them to realistic hopes that help them take proper action and help them wait. Encourage them to focus on specific hopes that help them through the uncertainty. Then support whatever hopes help your patients get good care and live as fully as possible.​

Want to share this information with your patients? Download the handout.​

Monday, March 27, 2017

​​My ongoing search for insights about improving patient care and holding on to the joy of medicine just hit pay dirt. Here's the scoop in one word: attending. I mean both the verb—being fully present with your patient—and the book, Attending, by Ronald Epstein, MD, a must-read about mindful medicine.

Before you roll your eyes, the book is not new-agey nonsense. Epstein, a Clinical Professor at the University of Rochester School of Medicine & Dentistry, grounds his work in the respected literatures of neurobiology, sociology, and psychology. With the discipline of a scientist and the artistry of a journalist, Epstein blends engaging patient stories with provocative insights and practical advice that just might fulfill the flap jacket's promise to inoculate you against burnout.

Epstein offers a fresh view of high-profile topics, such as compassion, suffering, medical errors, and the wounded healer. Without whining, he addresses the challenges to providing comprehensive care. Without patronizing, he suggests ways to overcome them. For a taste of what Attending offers, let's look at the link between certainty and curiosity.

As clinicians, you strive for certainty about patients' diagnoses and best treatment options. That desire is adaptive, motivating you to keep learning and honing your skills. A rewarding sense of certainty breeds confidence. It's a pleasurable feeling that offsets the frustrations and sadness of patient care and helps you let go of tough cases to focus on your next patient. Clinicians' desire for certainty is a good thing.

Except when it's not. In clinics where the clock is ticking and patients are waiting, the desire for certainty can grease the wheels for over-testing and cognitive errors. Academics who address medical errors often recommend adding checks in the system and training clinicians to self-monitor for biases, anchoring, and such. Epstein suggests you manage the desire for certainty by fostering another desire: curiosity—a deep desire to understand something.

To illustrate with an anecdote, Epstein describes his frustration with a patient who didn't take her meds. His annoyance grows when she refuses an exam. He doesn't care why she's acting this way and just wants the visit to be over. In a mindful moment, he becomes aware of his negative emotions and responds by engaging curiosity about what's going on with this difficult patient. As you already guessed, his next questions quickly uncover the problem. I can almost hear the violins crescendo in the background as the curtain comes down on a satisfied patient committed to following medical advice and a satisfied physician enjoying a triumph. Conclusion: curiosity leads to good care.

So, what's the story with clinicians' curiosity these days? Sometimes curiosity is squelched by the fear of asking patients, "What else can you tell me?"—an open-ended question that risks opening a Pandora's box of complaints. Epstein reassures you the added minutes will likely be fewer than you expect and investing upfront will save hours in the long run. Nothing new here.

The heart of Epstein's discussion begins with his belief that "Curiosity is sidelined by what Jerome Kassirer, former editor of the New England Journal of Medicine, called a 'stubborn quest for certainty.'" To explain how this happens, Epstein builds on material presented earlier in the chapter, such as how the brain responds to interruptions and information overload by ignoring novel, unpleasant, or unexpected data. (If not convinced, check out the "Monkey Business Illusion" on YouTube, a classic illustration of selective attention.)

Knowing this, now think about the fact that when you're curious you open your mind to the possibility that things with your patients are not what they seem. You believe that anything you think you know is "provisional, incomplete, or evolving." You accept living with the paradox of multiple equally legitimate ways of viewing a patient's situation, such as a patient who is both stubbornly non-adherent and struggling to comply. For some clinicians, embracing all that ambiguity feels like letting go of the expertise you worked so hard to achieve. Maintaining a sense of "unfinishedness" stirs feelings of being inefficient and unproductive or out of control.

Here's where Epstein makes a strong case for the benefits of curiosity outweighing the costs. For one, curiosity is an intrinsically rewarding drive. Constantly looking for something new, unexpected, or interesting—in other words, "preparing to be unprepared"—puts you in a state of "relaxed awareness" that is energizing, in contrast to hypervigilance, which is exhausting. For another, under stressful circumstances, increasing curiosity triggers a feedback loop of decreasing anxiety, rigidity, and defensiveness, all of which help you uncover the truth of the matter.

Taking curiosity to another level, Epstein claims you have a moral responsibility to be curious. He argues that curiosity drives you to pay attention to what matters to patients. Doing so makes their concerns important, which, in and of itself, helps relieve patients' suffering.

Thus, curiosity fills your tank by tapping into your sense of purpose and serving your mission, no matter the patient's medical outcome.

Epstein inspires you to nurture curiosity by getting in the habit of asking, "What's interesting about this patient? What's not known? What's important to this patient?" At first it may take a little extra effort for curiosity to coexist with the healthy desire for certainty, a balance that depends on accepting the increased uncertainty while letting go of the associated negative emotions. With practice, the curiosity of your youth can become second nature, enriching your connections with your patients, enhancing your proficiency, and infusing your noble work with vitality and joy.

"Curiosity" is just one of a dozen equally fascinating chapters, each supported by plentiful notes in the index. Put together, Attending describes a modern approach to mindful medicine. The goal of attending—being fully present with your patients—is not efficiency, yet efficiency often arises from such presence. More important, mindful medicine is good for your patients, for our profession, and for you.

Friday, February 10, 2017

My recent risk-reducing oophorectomy amazed me, and not just because of the impossibly small scars. Compelled to understand why, I reflected on the differences from my earlier cancer surgeries. New insights led to new affirmations, some of which might be useful to clinicians caring for patients with a deleterious gene who choose surgery.

The first thing that surprised me, the observation that first got me thinking, was everyone's focus on my post-op physical comfort. As if experiencing surgery for the first time, I marveled at all the tender kindness for my predictable post-op pains. The nurses stayed on top of every twinge throughout my brief hospitalization, responding with a blend of medications, reassurance, and deftly placed pillows.

After I got home, my husband gingerly assisted me to the bathroom every couple of hours, letting me direct our every move.

While I'm sure I received the same attentive care after my decompression adenectomy decades ago, none of it registered because the activities in my head, if not around my bed, were dominated by the cancer diagnosis. Pedestrian concerns such as getting to the bathroom were snuffed out by concerns about dying. Morphine, shock, and fear created a sensory fog pierced only by existential pain.

An imperfect metaphor of a car wreck comes to mind. If an ambulance whisked me away, nobody would be talking or caring about my car on the tow truck. If I walked away unharmed, we'd be focused on fenders and axles. With my risk-reducing surgery, it has been all about the car.

The differences of risk-reducing surgery began months earlier. I called to schedule a consult with the surgeon, as opposed to my doctors calling a surgeon to the ER to see me. My choosing a convenient day and time for me stirred my sense of being in the driver's seat, a feeling reinforced a few weeks after the consult when, with my physicians' blessing, I pushed the surgery date back a few more months simply because I wanted to attend a family event.

That said, I had an unfamiliar worry, one I hadn't had when medical urgency pushed me to the OR. Perusing my calendar for a convenient date to remove healthy organs felt a bit surreal, with an occasional flash of anxiety about being responsible for choosing surgery, with its risks. I say "flash" because it resolved with the simple reminder that I was choosing to decrease my risk of cancer for the rest of my life.

"For the rest of my life" became my operative phrase. While arranging care for my elderly mother and preparing dinners for my freezer, it was never lost on me that my doctors had recommended this surgery with the expectation of my living long enough for the risk to matter. The idea of a long life made the expected post-op downtime sound short—and worth it. As for the pain and inconveniences of the surgery, they seemed far more manageable and more predictable than the pain and inconveniences of cancer treatments.

That sense of predictability made signing the consent form a new experience, too. With my IV in place, I felt confident and ready to get the show on the road. How different from when worrisome adenopathy left me no reasonable choice other than to sign the consent form, my shaky signature reflecting the likelihood that the findings would make my whole life uncertain.

My first cancer surgery was merely a prelude to a journey laden with losses and defined by heightened uncertainty. Those losses made me terribly sad. My risk-reducing surgery has been a brief interlude defined by predictable post-op pain and a loss that is a gift for all my tomorrows.

Other patients undergoing the same procedure would never call their risk-reducing surgery "a brief interlude," especially if sudden menopause caused symptoms and/or an increased risk of future problems, or if they suffered a post-op complication. Certainly, patients whose risk-reducing intervention involves extensive, disfiguring, and/or multiple surgeries would not relate to "a brief interlude." That doesn't change the fact they pursued the best path for them.

Whatever the circumstances, patients who choose to undergo risk-reducing surgery are freely choosing to accept the risks, with hope of making their life the best it can be. Given that truth, you might see a time before or after their surgery to offer encouragement with one or more of the affirmations that helped me:

This surgery was an option because your life expectancy is long.

This surgery is preventing cancer—and not treating cancer.

This surgery is elective. You thoughtfully chose the best option for you.

Choosing surgery is choosing to decrease your risk of cancer for the rest of your life.​

Less than a month after my surgery, I feel fine. Since the beginning of the second week the toughest part has been refraining from lifting my grandson, the baby I cradled last spring in the birthing room. That heavenly moment was made possible by superb cancer care. Risk-reducing surgery strengthens my hope of my seeing him learn to walk and talk and, before I know it, grow into a man.

Monday, November 28, 2016

"She saved my life after I got cancer." Strangers overhearing that snippet might assume I was referring to my oncologist. But, actually, I was explaining the benefits of counseling with an oncology social worker. As clinicians, you regularly refer patients to those experts for the non-medical aspects of illness. So did I. In retrospect, I'd have done a better job had I known more about the sessions behind the social workers' closed doors. Here's my story and what I learned.

Throughout my first course of chemo, counseling never crossed my mind. I had every advantage, even calling myself the "princess with cancer" because of my medical knowledge, superb doctors and nurses, and endless support from family and friends. Six months later, during an overnight hospitalization, a social worker dropped by to tell me about her support group. I became a regular and then began seeing her privately, hoping to understand why I felt so off-kilter and how to get back to normal ASAP.

Had today's survivorship resources been available in 1991, my post-treatment anxiety and sadness wouldn't have blindsided me the way they did. I'd have gobbled up the print and online materials and joined ACOR listservs. Could I have skipped the counseling? No. Cancer had fractured my life. Impersonal resources couldn't address some vital pieces unique to my puzzle of recovery. Only through faceto-face meetings with an oncology social worker could I put them back together as quickly as possible.

How did she help? Sometimes by hearing the fears breathing behind my words of confidence. For example, I'd have bet my house on my husband's devotion. After mentioning a tense moment at home, I added a familiar refrain: "I know he'd never leave me…." Eyebrows raised, the social worker said, "Repeat your last sentence." In my own voice, I heard fear of abandonment. That fear was unfounded in my case. Simply bringing it to consciousness dissolved it forever. Poof. I learned to spot other irrational fears and call them purple noses: fears as easy to dismiss as someone telling me my nose was purple.

Justified fears posed a different challenge. The social worker helped me see the dangers of pooh-poohing significant fears and giving any fear too much power. I learned to size up each fear before beginning the work of managing it, using whatever blend of distraction, positive action, and cognitive reframing worked best.

Fears were low-hanging fruit. Stresses monopolized most of our sessions, from the fleeting stress of others' insensitive comments to the relentless stress of rearing children while dealing with my cancer. She understood everything, since her expertise spanned social dynamics, mental health, and the ins-and-outs of cancer care.

I learned that the puzzle of my recovery after cancer included pieces die-cut by my pre-cancer life. Regaining wholeness included talking about issues predating my diagnosis. It meant working through painful thoughts and feelings, some of which were embarrassing, shameful, petty, or selfish. With friends and family, that degree of emotional nakedness would have been painful for them and intolerable for me, and the risk of an unhelpful response too great. Behind the social worker's closed door, I could let down my guard, knowing she'd sympathize without empathizing and would leave my world once I was well.

The social worker answered many of my questions with questions, my responses to which led me to answers for my original questions—often answers I did not like, mind you, but realistic answers I could live with. When problems had no answers, she'd nod periodically as I detailed my unfixable problem. In the telling, I didn't learn a thing. After I finished, she had nothing to offer. Driving home, nothing about my situation had changed. Yet, somehow the problem no longer bothered me the same way. Her witnessing my distress had changed me in healing ways.

So, too, did her witnessing my grief. The crying I did in her office helped more than the crying I did alone or with loved ones. Why? Even more than I felt weak and vulnerable, I felt empowered by choosing to grieve without inhibition, in all its ugly messiness. I felt in charge of actively moving beyond grief as quickly as possible, while protecting my loved ones from the brunt of my pain.

In essence, at each visit I unpacked my problems du jour. We worked on them. We made progress through witnessing and problem solving. Then I dried my tears and repacked the remaining problems into a manageable load. Because of those sessions, I engaged fully in my family life and professional life between sessions, as much as physically possible. Because of those sessions, I embraced the life I had with hope and joy.

I eventually stopped seeing her, despite my ongoing illness. She'd given me all the tools I needed to deal with the challenges of survivorship. Now, more than two decades after my last visit, her wisdom continues to guide my responses to all life's challenges. My gratitude has no bounds.

Comprehensive cancer care is a shared mission. Oncology social workers play a crucial role in:

• counseling patients (including those who refuse a psychologist/psychiatrist), whether with a single visit to address a defined problem or long-term to develop coping skills;

• providing a safe place to express distress and grief;

• alerting physicians to patients' mental health crises;

• helping friends/family to support patients while caring for themselves; and

• referring patients to online and community resources.​

Every day, we give thanks for the miracles of modern medicine that save lives. Let's also express our gratitude to oncology social workers, those professionals at the nexus of body, mind, and spirit who help patients live.

Want to share this information with your patients? Download the handout.​

Wednesday, September 28, 2016

From the September 25, 2016 issue

If asked for a challenging topic in oncology, I doubt you'd answer "minor symptoms in long-term survivors"—i.e., changes or discomforts that don't interfere with patients' ability to function. Yet your skills in history taking and time management, and your clinical judgment, are tested to the max when long-term survivors in your practice develop symptoms like a mild backache, general tiredness or low-grade nausea. How can you best help them? The answer begins with an appreciation of your patients' perspective.

In contrast to severe symptoms, minor discomforts don't cry out for relief and are easier to hide or ignore. That puts long-term survivors in complete control over when to involve anyone. A mental tug-of-war often plays out between the desire to avoid sounding the alarm for something that just needs more time to resolve and the desire to have the symptom checked out, in case it signals something more serious.

Theoretically, the patient's job is simple—i.e., report the symptom—and the burden falls on clinicians to decide about the need for evaluation. Theoretically, reporting symptoms should be easier as long-term survivors, since they know their body inside and out. In reality, deciding what to do can be complicated and stressful, as I was reminded recently when a flare-up of localized discomfort persisted unusually long. I knew my reporting it would likely trigger an evaluation, as well it should, given my cancer history and risk of late effects. Consequently, the onus was on me to determine whether my discomfort was significant.

Many long-term survivors wonder if their mind is playing tricks, having in the past experienced, say, dyspnea after learning they had a small lung nodule or resolution of a backache immediately after learning their scans were normal. That's why, with no sense of urgency and not wanting to worry my husband, I devised a little test: Ignore it for a week and see what happened. No problem there. I'd learned to dissociate from the chronic aches and periodic symptom flares due to body parts that would never again work quite right, the legacy of past tumors and treatments. Like other long-term survivors whose happiness depended on healthy denial, I got good at it.

After going about my business for a week, the discomfort was the same. Just because I could ignore it indefinitely didn't mean I should. Minor symptoms due to benign issues may be indistinguishable from those due to early recurrence or serious late effects. My little drop of anxiety became a steady trickle, because I knew long-term survivors who ignore minor symptoms risk missing an opportunity to improve the outcome. The specter of late recurrences or new late effects was more than academic. I enjoyed rich friendships with co-survivors, a handful of whom had developed recurrence, second (or more) cancers, or serious late effects decades after their last treatment. The memory of one friend in particular pushed my button: "Okay, time to act."

That decision triggered memories of false alarms, which immediately cast self-doubt. I didn't want to waste my physician's time with nothing. Picturing an exam room unleashed my primal desire to delay opening the door to pokes and prods and the possibility of unwanted news.

While weighing the option of waiting another week, I asked myself, "What should I do to get good care and help my physicians deliver that care?" A new mantra was born: If I'm unsure whether I need a symptom checked, I need it checked. Dialing my doctors' office, I repeated in my mind what they'd made clear at every visit:

  • You help us when you report symptoms, no matter how minor.
  • Evaluations end needless worry and enable you to benefit from treatment, if needed.
  • A price of survival is the hassle of undergoing evaluations sooner than if you'd never had cancer.
  • More than you want to avoid a false alarm, you want to avoid missing the chance to improve the outcome.​

Plenty of other long-term survivors also want to get good care and make it easy for their physicians. Sadly, they're using a different calculus because their circumstances are different. Maybe they're risking their job if they take time to see you, or they're choosing between paying their rent or their office visit co-pay. For them, false alarms and treatment of early disease feel like unaffordable luxuries. Maybe they've picked up signals (mistakenly or not) from overworked physicians to not report minor symptoms. Maybe they tried discussing their symptom with a PCP untrained in survivorship who responded, "After what you've been happens." Whatever the reason, the question that guides their actions isn't about good care; it runs more along the lines of "How long can I let this symptom go on without risking my life?"

For still other long-term survivors, the struggle has nothing to do with money or physician encounters. Rather, their anxiety drives them online, where they occupy themselves with reassuring, if misguided, postings until their anxiety passes. Alternatively, the weariness of ongoing medical issues makes them under-anxious about minor symptoms.

Whatever the circumstances, an undercurrent of fear can make it difficult for long-term survivors to pursue what they know to be the best course of action. That urge to increase the ibuprofen instead of calling a doctor about a new pain is no different than the urge to turn up the car radio instead of calling a car dealership about a new tapping noise under the hood. It's human nature for long-term survivors to want to avoid the medical scene, especially if a symptom isn't bothering them much.

Minor symptoms in long-term survivors are no small matter. They require the same expertise, compassion, and dedication as you bring to the problem of cancer. By talking with your staff about the challenges, you can brainstorm potential solutions that fit with your particular practice. Your efforts will serve your mission to cure as often as possible and to comfort always.

Want to share this information with your patients? Download the handout.​​