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.

Tuesday, October 10, 2017

Remember the last time you returned to work after a nice holiday and learned a longtime patient had died? What did you do? Years ago, physicians routinely sent condolence cards. Times have changed. Handwritten notes of sympathy are going the way of the complete exam. Is that okay? Or should we resurrect the practice as the standard of care, especially for physicians off-call at the time of the patient's death? To consider the pros and cons, let's begin with a case.

A couple's only child, a son, was diagnosed with a serious disease at 4 years old. For 2 decades, the mother calmed her anxieties with realistic hope he'd survive long enough to be rescued by the cure allegedly just around the corner. Then, that mother was nearly blinded by a sparkling new hope on the left ring finger of the young woman soon to join the family. A few months later, her son developed another routine infection, which triggered another routine hospitalization. He died. A cross-covering doctor pronounced him. And that was that.

Day after day, with little letup for weeks, hundreds of cards and notes crowded out the flowers, food, and gifts delivered by people whose lives were touched in some way by her son. The resilient mom began to accept her boy would be 24 years old forever, his hugs replaced with photographs, videos, and pictures painted in words. Each image blew breath into her son's spirit that lived on in her world where medical advances had not come soon enough.

It's now 4 months since her son's death. She told me how walking to her mailbox or pushing the button of her answering machine still triggered a wave of emotion. Except the yearning for a message from her son's physicians has given way to despair of finding that comfort.

The bereaved mother asked me, "How could it be not one of the specialists who cared for my son for over 20 years offered any condolence?" I learned her son joked with his doctors at many of the hundreds of office visits and hospitalizations, and he trusted them with his life. "It can mean only one thing…," she sputtered, her lips tightening. "He was just another patient, a disease needing treatment. Our son never mattered to them."

I took her hands in mine. Sympathizing with her hurt and anger, I wanted her to understand, "It's not that simple." The urge to defend doctors was subdued by my uncertainty about the place of condolence notes in modern medicine. Before rattling off legitimate explanations, I had to ask myself: Do any explanations justify not sending a note of condolence?

Let's look. Given the pace of oncology practice and how often cancer patients die, the time and energy required for even brief notes may feel burdensome. Unlike with charting or coding, clinicians have the option of not starting their day earlier-than-early or ending it later-than-late in an emotional space defined by death.

It takes guts to enter that space where prescription pads sit untouched, reminding clinicians of the uselessness of the expertise that differentiates them from other clinicians, let alone from ordinary folks. It takes discipline to take pen in hand, a posture that awakens memories of past medical decisions and interpersonal interactions. Even if they did everything right, some memories may trigger second-guessing or regret. Not surprisingly, instincts may push clinicians to avoid that place where feelings of loss, failure, and powerlessness can eat away at confidence and hope, like water dripping on limestone.

Of all the notes you write at work, those of condolence can be the thorniest. Some oncologists get hamstrung trying to find proper phrases, especially if harboring a twinge of concern about others misconstruing their meaning. It's rational, not paranoid, to fear saying something that unwittingly causes pain or, worse, ricochets back to hurt you. Just ask any clinician who reached out with heartfelt condolences—such as, "I'm so sorry for your loss" or "I wish we could have done more"—and was rewarded months or years later with a malpractice suit.

My conviction that clinicians need to send condolence notes to the families of longtime patients is based on the ancient adages to "comfort always" and "first, do no harm." Those notes comfort bereaved family members and prevent them from the pain of thinking their loved ones didn't matter to their longtime physicians.

Writing condolence notes can be healing for clinicians, too. Performing that last act of kindness for longtime patients can provide a sense of closure that helps clinicians process the loss and move on. Knowing they can help the bereaved in a uniquely meaningful way reminds them of the healing power of their words. Taking a moment to reflect on their relationship from beginning to end can renew the sense of honor and privilege of caring for patients.

To make the task a bit easier, here are a few tips for writing a brief note of condolence. (I've suggested language that may avoid the risk of family members misreading your note as evidence of fault.)

  • Keep a supply of blank notes, well-worded store-bought cards, or custom cards.
  • Acknowledge the death ("I was saddened by the death of…." Or "It was an honor and privilege to care for….").
  • Recall a special memory; mention a trait you admired.
  • If appropriate, applaud the family's care of the patient.
  • Avoid hurried notes and automated signatures.

Written notes offer advantages over phone calls. You benefit from being able to control the time investment and having the option of abandoning the effort mid-sentence if suddenly not in the right frame of mind. By crafting an exact message, you eliminate the risk of an unfortunate choice of words popping out. Bereaved family members benefit from a note, too. A phone call may catch them when they can't listen to, let alone process and remember, what you say. With a condolence note, they control when and where they read it. They can treasure the card as a keepsake, reading and sharing your words over and over as they heal.

In our world of high-tech medicine and instant messaging, condolence notes are not passé. They help preserve the humanity of our calling.​


Thursday, September 7, 2017

Patients with advanced disease may ask themselves, "How will I know when it's time to stop fighting?" They're thinking—or worrying—about that life-and-death decision, one they expect to make sooner or later. Some of them summon the nerve to ask you for an answer. What do you say?

If your back pocket is bulging with treatment options, you could encourage patients to stay focused on the present: We're not near that situation; you don't need to think about that now. Such reassurance may be exactly what some patients need to relieve their worry. For other patients, that non-answer shudders like a slammed door. Thereafter, they'll worry in silence, unless you follow up with an open invitation: We can talk about it anytime, even now. Just let me know when it's best for you.

If they want to talk, consider exploring the fears behind their question. What are the hardest parts for you about the idea of stopping fighting? Their answers will help you address their current concerns, as well as advocate for them in the future. You'll know if they're worried about suffering by fighting too long. Or about quitting too soon and missing a lifesaving treatment. For all you know, they're bombarded by messages to keep fighting. Or they fear disappointing you. Then again, their asking about when it's time to stop fighting may reflect nothing more than curiosity about how people know.

Reason dictates patients stop fighting when the drawbacks of continuing treatments outweigh the benefits. That practical answer risks missing the mark for patients who've adapted to life in the shadow of unfavorable odds. To keep hope alive, they've adopted a belief system based on, "While there's life, there's hope," which changes the calculation and justifies fighting to the last breath.

Unfortunately, if patients equate "fighting cancer" with choosing life, they may equate "stopping fighting" with choosing death. That misguided conclusion, even if only subconscious, must be put to rest. Patients who choose to stop treatment are not choosing to die. They are choosing the best option for living their best life under the circumstances.

Reframing "fighting" may help, too, especially if you first affirm patients' self-image as fighters—Since our first meeting, you've proven you're a fighter. Nothing can ever change that. You can model a "fighter's" perception of stopping treatment: If we ever don't have good treatment options—and I hope that never happens—our fight will become a different kind of battle. You can describe fighting tooth-and nail to help their body feel as well as possible for as long as possible, which includes resisting the urge to do interventions that only make things worse. You can talk about fighting together to make every day the best it can be.

Another approach is to take a patients' question about stopping the fighting as an opening to pivot away from battle imagery, provided you're prepared with an alternative metaphor that enables patients to save face while leaving the battlefield. I needed such a metaphor when first diagnosed, since I was never one to battle. For years, I imagined my survivorship as a sort of maze, like the labyrinth at Versailles, each recurrence a dead end. My ability to change direction and choose one of the remaining possible paths nourished my hope of finding my way out of the maze to the open space marked "long life."

Years ago, the maze metaphor stopped working after some friends died, buried mid-maze as if they'd chosen the wrong path. That notion clashed with my belief that triumph over cancer is measured by how we live, and not by how long. In search of a metaphor that worked well throughout survivorship, I adopted a more Confucian notion of life, one consistent with many religions and philosophies of life.

Each of us walks one life path that's uniquely our own. Unable to see beyond our present situation, we use our knowledge, experience, and gut feelings to choose how to take each next step. Whether we envision life as uncovering our path or creating our path, we're striving to respond to challenges in healthy ways. Poor responses cause us to lose our way. As the end draws near, it's not a matter of choosing whether to fight, but choosing the best of many possible responses, one that helps us stay on our path and not lose our way.

Asking patients about their goals of care helps them choose a path in keeping with who they are. Without getting too philosophical, you could explain to patients, A school of thought teaches that each of us walks a unique path in life. Our choices don't take us on one life path or another; our choices determine how we walk our singular path. You can build patients' confidence by explaining how, since you met, you have been striving to help them respond to each challenge in ways that help them walk their path. If someday treatment options run out, together you'll figure out the best response under the circumstances, one in keeping with their values.

If patients seem overwhelmed, remind them they've handled situations they probably couldn't imagine facing before their diagnosis. Also remind them the best response for certain situations becomes clear only when in the situation, and not before. Reassure them of your confidence they'll always do what's best for them.

In oncology, patients' discomforting questions often present opportunities for healing words. If patients ask how to know when it's time to stop fighting, you can explain…

We can talk about it any time you want.

We fight cancer many ways, not just with cancer treatments.

In some situations, it's not a matter of whether to fight, but of how best to respond.

Patients' questions about stopping fighting usually arise out of fear of suffering or dying. You help relieve their worry by transforming the question from one about dying to one about living as fully as possible each day.​


Friday, August 25, 2017

When I tell newly-diagnosed patients, "You are not your cancer," I'm trying to encourage them not to let cancer define their life. That's asking a lot of patients whose life feels hijacked by advanced disease. What can clinicians do to help such patients live as fully as possible between tests and treatments and doctor visits, namely, during their in-between days? Let me share three suggestions garnered from my phone interview with Teva (pronounced Tay-va) Harrison about her award-winning memoir, In-Between Days.

Teva was a 37-year-old happily married director of marketing when she tumbled from the top of her world, clutching her hopes and dreams. Diagnosed with stage IV breast cancer, she landed on the rocky terrain of palliative chemotherapy, her nicely planned future smashed to smithereens. The activities that defined her days were over, from her career to her running half-marathons. As for her expectation of having children and growing old with her beloved David….

Overwhelmed by her new reality and wanting to keep her diagnosis private, Teva spent the in-between days holed up at home alone with nothing but her thoughts. When not zonked on pain meds, she argued with herself about what to do, mercilessly berating herself for wallowing. She told me matter-of-factly, "I lost a few months to depression."

Stuck and not wanting to squander her now-precious time, Teva sought professional help. As she saw it, "I was lucky to have hooked up so quickly with a psychiatrist specializing in psychosocial oncology." Lucky? Quickly? My heart ached, knowing if she were bleeding or vomiting, no professional would have let that go untended for months.

Suggestion #1: For patients newly-diagnosed with advanced disease, prescribe counseling as a routine part of care. We're prescribing a session of counseling. It may help you adjust more quickly, which then helps you manage treatment and the changes in your life. After the first session, you can stop at any time.

As clinicians, you're handicapped when it comes to diagnosing the early signs of depression. You don't see patients' in-between days, and medical issues consume your time and attention when you're with them. Their risk of depression justifies routinely prescribing counseling, just as you routinely prescribe anti-emetics along with emetogenic therapies.

Why a prescription? Some patients need its gravitas to overcome objections of family members or their own concerns about being—or appearing to be—weak or crazy. Granted, not all patients with advanced disease need counseling. Some who need it refuse it, and that's their choice. Better to risk unfilled prescriptions than unfulfilling days. For patients who need a push from you, a prescription may avoid the tragedy of treatable depression poisoning their in-between days.

Like most cancer patients new to counseling, Teva expected to talk about cancer. I wasn't the least bit surprised when she told me she spent her first sessions working through issues about her childhood and the coping mechanisms she'd developed, "not all of which I'd call healthy." Teva discovered what many patients in treatment learn the hard way: Cancer changes the equation for how best to handle roles, routines, and relationships.

Survivorship is demanding, leaving less energy for managing non-cancer life. Short-term counseling to address unhelpful, exhausting thoughts and feelings—emotional "garbage"—offers long-term rewards. Life is better after getting rid of one's garbage, whether toting only a grocery-bagful or dragging enough to fill a commercial dumpster.

Suggestion #2: Encourage patients to pay attention to all stresses, and not just cancer-related ones. You need your energy for dealing with treatment, even if everything's going well. You build resilience by addressing all the stresses in your life, and not just cancer-related ones.

For one of Teva's counseling sessions, on a whim she brought a comic she'd recently made of an incident from her childhood, explaining, "It elicits the same emotions that are worst about having cancer." The comic gave her psychiatrist insight and gave Teva a safe way to open up.

Over the subsequent months, as Teva's depression lifted, her desire for privacy yielded to a yearning for fellowship. She told me how at a cancer retreat, "listening to other patients having the same thoughts and feelings…something broke." Back home, her ink flowed. Comic after comic shined light on her life with cancer, transforming unsettling vague ideas into black and white. Thereafter, with comics in hand, she could talk about "the hard stuff," a key step to adjusting and moving on.

Teva's story from that point on makes my head spin. Girlfriends told Teva her comics could help people. She then talked with a guy at a comic book store who suggested posting her work online. A major magazine saw her blog and serialized it. An editor saw those articles and made a book offer. The book was published in record time to critical acclaim, while Teva's inbox filled with invitations to speak and write.

My point is not that she achieved extraordinary success. It's that she found healing in the ordinary acts of talking about and giving meaning to her loss and pain. Today, her terror and sense of urgency are less. Uncertainty no longer keeps her from making plans. Ever since grieving her losses, she's seen opportunities for joy.

Suggestion #3: Inquire about the ways patients are finding meaning and moments of joy. Tell me what you're doing besides treatments. Which activities matter to you…or bring you some pleasure?

As a physician-survivor, I've long believed that triumph over cancer is measured by how patients live, not how long. In the care of patients with advanced disease, you help them triumph over cancer by providing good medical care while helping them live as fully as possible during the in-between days.​


Thursday, August 10, 2017

The care of patients with metastatic breast cancer tests your skills in the art of medicine. You're expected to show compassion while expertly addressing complex medical issues. Since compassion begins with understanding what someone else is going through, I recommend you read In-Between Days, a memoir for patients. Illustrated short essays offer clinicians a fresh view of life with metastatic cancer that can open opportunities for healing words.

Author Teva Harrison was a 37-year-old graphic artist, recreational runner, and big-time director of marketing when diagnosed with breast cancer. The opening essay condenses into two pages the months-long saga between developing her first worrisome twinge and settling in to life with metastatic cancer. "I learned that my cancer was already stage IV—incurable—and that I would never be on the other side of it…."

The brevity of her medical history attests to this memoir being less about Teva than about shining light on "the hard stuff"—common issues often silenced by fears, awkwardness, or the inadequacy of words. She succeeds brilliantly, thanks to the combination of short essays and black-and-white art, mostly comics, but some clip-arty images. Page after page, as I read her eloquent prose that gave voice to so many familiar thoughts and feelings, I whispered, "Teva, you nailed it."

Even if you read only two—any two—of the 60-plus pieces, it will be worth your time and attention. To show you why, let's look at her 16-line essay, "On a Platter," in which she reflects on appropriate interventions that force patients into absurd positions, literally, if not figuratively. Teva describes her first radiation therapy session, where she's strapped into a personalized mold. After explaining why immobilization is serious business, Teva writes, "The process was so strange and new to me, I couldn't stop laughing." She asked the tech to grab her cell phone and take a picture, so her husband could see her "wrapped up like a tray of sushi."

The amusing vignette is a nice reminder to clinicians that routine procedures are not routine for patients, and that their jokes can go a long way in relieving tension. Teva's sushi story also reminds clinicians of something else. Nervous laughter, which the Association for Psychological Science describes as, "incongruous emotional displays like chuckling uncontrollably at a funeral….," modulates otherwise overwhelming emotions. Patients' uncontrolled laughter, whether triggered by their own calculated joke or arising spontaneously, may signal distress.

Hours after being diagnosed with my first recurrence, at the end of a serious conversation with a consultant, I cracked a joke—a terrible joke I thought was hysterical. The physician fake-smiled and then kept talking. I thought I detected a fleeting look of worry that I didn't grasp the seriousness of what was going on (or that I was losing it). Self-conscious, I justified my joking with the claim that silliness helped me regain a sense of control, even if at the price of looking silly.

Teva's sushi reference may have had to do with control, too. At the risk of projecting how I felt when tethered by a mask to a radiation table, Teva's sense of loss of control of her life may have been exacerbated by the physical sensations of immobilization. As for her uncontrolled laughter, I read it as a sign of distress. She couldn't escape the physical or psychic pain caused by her cancer. Along with the absurdity of feeling like a sushi tray was the absurdity of cancer taking away the career she loved and the future she'd imagined, one she'd planned on filling with children and growing old with her beloved husband.

"On a Platter" highlights how people whose private world has fallen apart have a different view of the high-tech miracles of modern medicine that empower us. Teva explains, "Everything about treatment would be so fascinating if it just weren't happening to me. It's as if I just wandered away from my life…into a surrealist dream sequence."

The sushi story opened my eyes to new opportunities for helping patients. If patients crack jokes, you can take their lead and applaud their humor, validating its healing power in stressful circumstances. To help patients awaiting their first radiation therapy, you can…

  • Prepare them for emotions that might arise. ("At the first session, the machines can feel intimidating and the experience surreal.")
  • Link the discomforts with the benefits. ("Holding still increases the safety and effectiveness of your treatment.")
  • Reframe the control issue. ("Immobilization gives you control by keeping you in perfect position.")
  • Encourage them to look for something humorous to help offset unpleasant thoughts. ("One patient gave everyone a laugh when she said she felt like a sushi tray.")
  • Set the stage for hope. ("Optimizing your treatment gives you reason to hope for the best.")

In addition to Teva's attention to nervous laughter, she shines light on the impact of symptoms, from vomiting to vaginismus; the challenges of pain management; the many faces of anxiety; the threat to self-image; as well as the existential issues of life, death, and love. This book answers the cry of patients with metastatic cancer who feel abandoned by a culture of cure. In-Between Days is literary manna, satisfying their hunger for understanding and companionship.

Compassion begins with understanding what your patients with metastatic cancer are experiencing. The greater your understanding, the easier it is to figure out what they need. Teva speaks for many patients—including me—when she says, "it's the unspoken that is most frightening." I urge you to recommend In-Between Days to your patients and read it yourself, savoring one essay at a time. Then you can hope tomorrow brings better treatments while you help your patient today through healing conversations about the hard stuff.


Monday, July 10, 2017

Considering how compulsively I keep my inbox empty, it's odd I've left an interview request unanswered for days. Even odder, the journalist's topic for my interview is right up my alley: dealing with cancer. He talks with experts about bouncing back from life challenges for his podcast, Bounce—a series on resilience.

What's the hang-up? Throughout the 27 years of my survivorship, I have never bounced back. All these years, I've bragged endlessly about my persistence, explaining it compensates for my lack of resilience. Resilient people don't spend hours and hours in tearful counseling sessions. They don't spend years fighting fears and feeling frustrated by post-treatment fatigue. They don't cry to friends, "I wish I were tougher." Unlike me, resilient people are tough. They bounce back.

Despite all my survivorship work, I've never really thought about resilience. Until now. The journalist's invitation intrigues me. At the very least, exploring what it means to be resilient after cancer will help me decide about the podcast, so I can empty my inbox. At best, I'll learn ways to increase my resilience, with insights and tips you might find useful in your efforts to foster patients' resilience.

Resilience is often defined as the ability to recover quickly from difficulties. The associated idiom that troubles me—bounce back — provides a useful starting point for understanding resilience after cancer. Tutorials on bouncing rubber balls show you how simple physics equations reliably predict a ball's path. No such equations exist for calculating people's resilience. How well people bounce back depends on a complex interplay of unmeasurable factors unique to each person and involving all spheres of life (physical, emotional, social, financial, and spiritual).

Aha! Bouncing back from illness is different than bouncing off asphalt. Despite the obviousness of that truth, my excitement is boundless. Such exuberance reminds me of a Eureka moment decades ago, when I realized post-treatment fatigue is different than the fatigue that healthy people experience at the end of a long day. In the context of my fatigue, recognizing that people were using one word for two different phenomena liberated me from the burden of unfair comparisons and unrealistic expectations. Regarding my resilience, it was seeing the flaw in an idiom that freed me of the burden of unfair comparisons and unrealistic expectations.

The more I think about the differences between rubber balls and people, the more resilient I feel. Consider this: The world's most resilient ball doesn't always bounce well. Picture yourself standing on the ocean's edge and dropping a SuperBall. Thud. In life, horrendous adversity can act like wet sand, preventing resilient people from bouncing back quickly. Maybe the reason I needed all those counseling sessions was not my lack of resiliency, but that I was grappling with wet-sand challenges, such as chronic pain and fatigue, hanging up my white coat and stethoscope, and repeated recurrences.

Here's another thing to consider: The apogee of a dropped rubber ball degrades with each bounce, lower and lower until the ball stops. In contrast, after cancer, people can experience post-traumatic growth and end up better, in certain ways. Yes, I've shed buckets of tears. Yes, aftereffects have slowed me down. At the same time, I've become stronger in spirit and richer in relationships than I believe I would have had I never faced cancer.

Nietzsche's aphorism suggests, "That which does not kill us makes us stronger." Not always. Adversity—such as the loss of good health, a career, or a child—shatters some people forever. After cancer, some long-term survivors withdraw from life, because they fear recurrence, feel like damaged goods, or don't see the point of trying.

That said, most survivors do get on in their life, in some form or fashion. I did. Knowing how much work and support it took, Nietzsche's aphorism makes sense only if we tack on a qualifier: What doesn't kill us makes us stronger in the long run. Now I know that when facing cancer, my resilience was expressed as feeling weaker and more vulnerable for a time, before I began to feel stronger. It meant asking for guidance and support while I learned what I needed to do and slowly adjusted to the changes. Resilience meant grieving my losses, so I could then see all the opportunities that remained. At my lowest point, resilience meant having hope of a better tomorrow, without yet knowing how to make tomorrow better or what "better" might look like.

These reflections lead me to propose my own definition of resilience after cancer: The ability to adjust to unwanted changes, live for today and hope for tomorrow. What I like about that definition is it won't lead people astray with unhelpful time frames (e.g., quickly) or idioms (e.g., get up after being knocked down). More important, it empowers patients and clinicians, because anything that helps patients adjust and feel hopeful helps them build resilience.

In your routine care of patients, you help patients build resilience when you help them:

  • Obtain information about what's happening, what to expect, and what they can do to help their recovery.
  • Address all medical problems that drain energy (e.g., pain, fatigue, disordered sleep, inadequate nutrition, anxiety, depression).
  • Refer to resources to address all other energy-draining problems (emotional, social, financial, spiritual) and to learn coping skills.
  • Inquire about their hopes, and support their efforts to fulfill realistic hopes.

If nothing else, you help patients when you explain, "People are resilient, but they are not rubber balls." Remind them it takes time to adjust to changes and grieve losses, and they may feel weaker and more vulnerable before they feel stronger. By fostering patients' resilience, you help them live as fully as possible today, tomorrow, and every day. That's what I'll tell the interviewer, too, when I do his podcast.​