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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.

Wednesday, November 6, 2019

Empowering Patient Handouts

​You have my sympathy. You'd gone over the instructions carefully and provided a handout. Yet your patient suffered a complication due to misunderstanding or misremembering your instructions. Years ago, I vented to my medical assistant after such an episode, sharing my sadness about my patient's suffering, as well as my frustration: "My instructions were right there on the handout!" Before leaving the break room, sighing in resignation, I closed my eyes and shrugged my shoulders, my voice dropping on the last word of asking, "What more can I do?"

In retrospect, that conversation-ending rhetorical question should have been a rousing call to action. For reasons that I'll soon explain, handouts are more important now than ever before. Meanwhile, common issues can lead patients to unwittingly make mistakes with their instructions, a problem I've experienced firsthand as a patient. Let's take a closer look at some of those issues, with hope of finding ways to empower handouts, especially instruction sheets.

Part of the problem is handout fatigue. At the oncology clinic alone, along with instruction sheets, patients may receive informational handouts, insurance papers, and fliers for upcoming survivorship events. In non-medical settings, handouts are shoved in their hand as they enter stores and leave local events. They find handouts in their grocery bags and kids' backpacks.

Some patients, feeling burdened or just too busy, deep-six all handouts. Others consider doctors' handouts important and intend to read them—the instruction sheets, for sure—until those rascally papers get lost between the car seats or are forgotten in a pile of junk mail.

That's a problem. With health care increasingly shifting to the outpatient setting, the stakes keep rising for patients to understand how to take their therapies. Meanwhile, you have less face-to-face time for discussing increasingly complex diagnoses and therapies. Even in a fantasy world where you enjoy unhurried visits, your patients listen to you through the wax of fears, fatigue, pain, stress… (the list goes on). They can't always hear what you say, let alone process and remember the information.

A wise mentor said, "What you say matters less than what your patients hear." Handouts offer unique advantages that may help your patients hear you correctly. For one thing, you control every word used to convey facts, insights, tips, and instructions. You can edit out the ambiguous phrases or confusing metaphors that might pop up in conversation. For another, patients control the place and pace for processing your words, and they can replay your instructions whenever needed. Importantly, your handouts educate family members and caregivers, enabling them to support patients' efforts to comply. For these reasons and more, patient handouts play a vital role in modern patient care.

How can clinicians empower handouts? If you are crafting them yourself, use as few words as possible without omitting vital information. In fifth-grade reading level language…

  • Use inspiring titles, e.g., "Instructions for a Smooth Recovery."
  • Highlight medication instructions.
  • Provide a "why" for the "what," e.g., "To protect your esophagus, you need to avoid (list of foods)…."
  • Add drawings or photos to illustrate techniques, such as how to administer drops.
  • Include a boxed instruction to "Please call the office for questions or concerns."

 Engaging Your Patients

Optimizing the text is only a start. To help your instruction sheet stand out and to encourage patient engagement…

  • Use colored or bordered paper and/or add a medical logo.
  • Add the patient's name to the top.
  • Encourage patients to keep a binder at home for instructions.
  • Help patients take a cellphone photo of the sheet and send it to their own inbox.
  • Ask patients to read the instructional handouts before they leave.

I went back and forth about including the last bullet. You may feel you can't spare the office space or staff time. Before you nix the idea, consider how it opens an opportunity to verify patients' understanding by inviting their feedback, "What questions do you have?" (Note: Asking "Do you have any questions?" makes it too easy for patients to reflexively answer "No," without thinking).

To go a step further, ask patients to repeat back the instructions as a way to reinforce the information and uncover misunderstandings. If you're worried about offending patients, frame the exercise as a test of your handout, and not of their understanding: "I need your help knowing whether I should reword my instruction sheet."

Some physicians ask patients to sign an attestation of having read their instructions. You can leverage that documentation protecting your practice to empower your instruction sheets. Patients may take your handouts more seriously if told, "We consider understanding the information on these sheets essential to your healing, like a procedure." 

If none of those suggestions work for you, that's okay. I'll wrap up with a quick reminder to destroy copies of old handouts when you update them. And with two quick suggestions for physicians to help overcome handout fatigue. First, be strategic. If the patient is dealing with a medical challenge, save handouts regarding routine care for another time. Or, if giving more than one handout, make a big deal about the instruction sheets: "These pages matter most!"

Second, before concluding the visit, advocate for your handouts. Take a moment to urge your patients to read the handouts again at home. "We're in this together. I am giving you these handouts to help you achieve the best possible outcome. Please keep them in a place where you can always refer to them."

In the quest to improve patient outcomes, handouts have the power to clarify, amplify, and reinforce your messages—but only if patients read them. Like compliance with tests and follow-up visits, patients not reading or understanding instructions may impact outcomes adversely. You may overcome handout fatigue and empower all your handouts by presenting well-crafted instruction sheets in ways that show you care. It's worth trying. For both your patients and you, the rewards of improved compliance and strengthened clinician-patient bonds are great. 


Friday, October 18, 2019

Introducing "The New Normal for Now"

By Wendy S. Harpham, MD, FACP

"Don't tell me this is my new normal! I hate the new normal!" Reactions such as this sadden me. I've championed "the new normal" since the early 1990s, when few resources were available to guide me through the challenges of my first remission. Thereafter, the notion of a "new normal" has helped me live my best life through all the transitions and rough patches.

Naturally, I was pleased "new normal" became integrated into the lexicon of survivorship. Recent online rants suggest that somewhere along the way the term became dissociated from the ideas that gave rise to it. I'm hoping that by revisiting what "new normal" still means to me and exploring what it might mean to survivors who don't like it, I find a compact way for clinicians to share the healing ideas along with the term.

First let's talk about what it means for life to feel normal. The essence of this complex idea is that, for the most part, (1) our experiences match our expectations and (2) our routines help us navigate our days. Those alignments make life feel like usual.

When our reality shifts, the tension between our usual routine and what's happening now creates an odd sensation we recognize as "not normal." If the shift is sudden and distressing, life may feel surreal, which cushions the blow as we begin to process our changed reality. That's good. Unless it persists. We need normalcy to engage effectively in our life as it is.

After cancer, feeling normal can be challenging. During my first remission, my fatigue, frequent infections, and fear of recurrence kept me from resuming my usual routines or feeling like myself. A favorite lapel button showcased my yearning: "I know this sounds strange, but all I want is a normal life."

Blindsided by the physical and emotional difficulties, I joined a support group and began counseling with a social worker. Grateful for the insights, I started writing a book about recovery, subtitled Your Guide Back to Normal.

As the manuscript developed, so too did my understanding of what "normal" means: "For most survivors…to have a normal life after cancer means creating a new normal that incorporates the physical, emotional and spiritual changes catalyzed by your cancer experience." The subtitle evolved, too, to reflect that forward-looking message. (After Cancer: A Guide to Your New Life)

As I saw it, cancer had splashed ugly streaks across the canvas of my life. It was up to me to fill in the rest. What did I want my life to look like? The idea of a "new normal" motivated me to find the best ways to deal with unwanted changes, a quest dependent on sound knowledge. Information about aftereffects (including those facts that initially upset me) helped me manage my expectations. Insights about survivorship enabled me to develop more adaptive routines. Over time, my expectations matched my experiences, and my new routines helped me do the right things. My confidence rose. My anxiety lessened. My life began to feel more normal

Unexpectedly, a beautiful thing happened: The obtrusiveness of unwanted changes faded, overshadowed by the vibrancy of life lessons learned through illness. My reordered priorities and savoring of ordinary pleasures made my "new normal" better, in certain ways—even while dealing with recurrences and persistent pain.

As a physician-survivor, I'm convinced of the healing potential of "the new normal." So, why might patients react with anger, confusion, bitterness, disappointment, or fear? I suspect the crux of the problem is they mistakenly equate "the new normal" with "living with unwanted changes from now on."

If so, "the new normal" traps them in their current distress. Rejecting the term is a linguistic left hook in their ongoing fight against cancer. It's their proclamation: "I'm not giving in to cancer! I'm not giving up hope!"

A thread of fear may weave through such bravado, if patients' identity remains tethered to their pre-cancer life. Asking them to enter a "new normal" where they hardly recognize themselves or their life may stir an existential fear of getting lost or trigger a real-world fear of yet another loss. Indeed, to create a "new normal," patients must let go of their "old normal"—a daunting task that triggers grief. Patients who've cried buckets may resist any path that involves loss.

For those or other reasons, patients may perceive "the new normal" as an obstacle to being who they want to be or going in the direction they want to go. The irony is that "new normal" was intended as a tool for regaining control and moving forward with hope of a better tomorrow.

Maybe tacking on the implied qualifier can fix the glitch. Calling it "the new normal for now" highlights that "normal' is a moving target. From birth to death, with or without cancer, the human condition demands creating one "new normal" after another as circumstances change. Adding "for now" emphasizes the temporary nature of "the new normal" designed to empower patients now.

Life after cancer is an art: the art of living well. The comfort of "normal" can feel elusive while in transition due to a new diagnosis, aftereffects of successful treatment, or metastatic disease. Clinicians can help patients accept and adapt to their changed reality by introducing "the new normal for now," which includes good things that come out of unwanted illness, as well as all the unwanted changes thrust on them. It includes heightened gratitude for today and all the things under their control, such as new routines and new skills that help them make life the best it can be for now.

In your care of patients, you show compassion by validating patients' losses. You empower patients in transition by providing needed information. And you inspire patients by supporting their efforts to create a "new normal for now" that helps them today, while they're hoping for a better tomorrow. "Even in the worst of times, we can strive to make life the best it can be."1

1Healing Hope—Through and Beyond Cancer (WS Harpham; Curant House; Dallas, TX; 2018)

 

Monday, July 8, 2019

Comfort for Clinicians

When patients come to you, they're hoping you can fix their medical problems. They're also hoping you'll relieve their suffering, especially if their condition is either not improving or continuing to decline despite all your therapies. The key to relieving suffering is to determine the best course of action by, first, ensuring the patient (or family) understands the situation and, then, talking about goals of care. Both are difficult tasks.

A young Dr. Sunita Puri found herself tongue-tied when trying to have those conversations with patients. That is, until her palliative care fellowship. There she discovered a language that helped her address patients' suffering and discuss goals of care. Fortunately for all clinicians, she wrote her memoir to share that new language plus insights from the world of palliative care.

Reading Puri's That Good Night: Life and Medicine in the Eleventh Hour feels like doing a mini-rotation with a gifted attending. You see the ways palliative care specialists not only help patients but also help you. You are exposed to ideas and phrases that help you talk to patients about options at the end of life in honest, hopeful ways. You hear a thoughtful physician reflect on what it means to be a clinician today, caring for seriously ill people.

The book weaves Puri's personal story with clinical vignettes, a common approach by physician-authors. What sets this book apart is her fresh perspective shaped by her upbringing as an American-born child of South Asian immigrants and her expertise in palliative care. Puri was drawn to palliative care by the opportunity to be both scientist and humanist, which is no surprise given her deeply spiritual

parents. Throughout her childhood, they'd turned mundane events into teachable moments, hammering home the fact that "life is a temporary gift." They'd regularly talked about "what it means to live well with the knowledge of our transience"—useful lessons whatever your spiritual beliefs.

For clinicians, a strength of the book is the modeling of words that facilitate discussions about goals of care. Over and over, I found myself saying, "Nice! That works." For example, the mother of a patient tried to cut short the conversation by saying, "Keep doing everything." The physician responded, "Part of doing everything for him means having this talk." Another patient insisted it was too early for that discussion. Puri countered the myth that patients always know when it's time by saying tenderly, "I can hear how hard it is to reconcile your sharp mind with how much your body is struggling…."

Another strength is Puri's demonstration of how consulting the palliative care team can help you in your care of shared patients. For one thing, a consultation can off-load some of the demands on your time. It takes time to tease out what patients mean when they say they want to "fight" or that they're hoping for "a miracle."

For another, the palliative care team can support you by…

  • Paving the way for your time-compressed conversations with patients
  • Helping patients process their conversations with you
  • Alerting you to patients' misunderstandings
  • Tipping you off if patients need to hear from you that treatment is not working
  • Enabling difficult discussions when patients find them easier with someone new

Every chapter exudes Puri's compassion for you, as much as for patients. For example, she does not criticize oncologists who unwittingly mislead a patient by talking positively about improved test results, knowing meaningful recovery is unlikely. Instead, she empathizes, "Because you care the way you do, it's natural—and beautiful—that it's difficult to say what needs to be said."

While you're striving to do your best in difficult situations, it's healing to be reminded that you can say everything perfectly, yet patients may react badly. That you can prescribe supportive therapies optimally, yet patients may suffer at the end because "a 'good death' may not be in the cards." Most important, it's healing to hear that "it isn't your job to erase…their suffering, but rather to see it, not ignore it. To ease it when you can. And to be there as they move through it…."

Some of Puri's reflections may help you manage your expectations. If you see family meetings as "procedures," you'll expect them to require preparation and concentration. If you see each meeting as part of a process, you won't be surprised or disappointed if your first conversation seems to make no difference. You won't blame yourself if there's still no apparent progress until after a few sessions. As Puri eloquently puts it, "There is no freeway between the mind and the heart." Patients will take however long they take. Ultimately, patients must decide "whether they could accept and endure the most heart-shattering information, or the greatest loss."

After all is said and done, no matter how well you accept the things you cannot control, it's difficult to be "immersed in the enormity of the final experience all human beings would share." Be prepared for some of the stories in That Good Night to unleash pent-up emotions. Surely one or more will stir memories of your own patients, especially those who never experienced peaceful resolution or redeeming growth at the end. If you cry, that's a good thing. Just as curative chemotherapy makes patients weaker before it makes them stronger, expressing your grief in a safe place helps you hold on to the humanity that makes you a better clinician.

In the care of seriously ill patients, you will see suffering. That Good Night will inspire you to recognize and respond to suffering with compassion. Whether caring for patients on your own or with the support of a palliative care team, fluency in the language of suffering will help you preserve compassion in medicine.

Friday, April 5, 2019

Checking Out God's Hotel

​Assuming your patients' physical improvement is possible, how do you see yourself facilitating that healing? Surely you don't envision realigning four humors, as did healers in premodern times. Do you believe you're nursing a life force separate from the physical body? Your answers matter, because your understanding of illness and healing guides your care of patients.

In God's Hotel: A Doctor, A Hospital, and a Pilgrimage to the Heart of Medicine, Victoria Sweet uses deftly painted patient vignettes as scaffolding for a provocative discussion of clinicians' role in healing. The book opens with Sweet's disappointment as a third-year medical student watching the conclusion of the autopsy of one of her patients. "I'd expected (we'd find) some thing that was, well, ineradicably Mr. Baker, something the pathologist's (electric) saw could not open and destroy."

It wasn't until years later that Sweet realized modern medicine had no language for a patient's "life force," and premodern medicine did. Ancient terms such as "spiritus" and "anima" referenced "something present in the living body but missing from the corpse." Rest assured, God's Hotel is not a treatise about the soul or religion. This is the story of Sweet's earnest attempt as a scientist to reconcile the mysteries of healing so she could optimize her ability to help patients.

Sweet's efforts began informally while working in a rural private practice, and they continued with a stretch as the director of a community clinic. Then Sweet took a road less traveled, working for decades as a primary care physician at Laguna Honda, America's last almshouse. On the wards, she relished the slower pace and autonomy that long-retired physicians fondly recall and young physicians can only imagine. The gifts of Laguna Honda—its unconventional floor plan, a head nurse who knitted blankets for patients, and enough time to just sit and watch a patient—highlighted elements of the healing arts now threatened by technology-rich, rushed patient care.

What separates God's Hotel from other vignette-heavy clinician memoirs is Sweet's expertise as a PhD in history and social medicine. She learned German and Medieval Latin to explore original texts on the work of Hildegard, a 12th century German practitioner of premodern medicine (as well as a nun, mystic, and theologian). Sweet's academic effort was motivated by her desire as a clinician to find insights from a time when healers believed in viriditas—"the power of humans to grow, to give birth, and to heal."

Whenever diagnosing and treating patients, Sweet turned to the medical truths revealed by science and technology to inform her prescriptions. At the same time, she feared modern medicine's mechanistic approach suffered from rejecting (or ignoring) the notion of a life force. In Hildegard's writings, Sweet found ideas that opened opportunities to foster healing—and humanism—in modern medicine.

Here's an example. As the admitting physician, Sweet assessed Terry Baker, a heroin addict and prostitute with transverse myelitis and a massive inoperable decubitus. Facing "a catastrophe, and possibly the end of Ms. Terry Baker," Sweet tried a Hildegardian approach to healing by "removing all obstructions to Terry's own viriditas."

Please stay with me, here. As expected in a book like this, Terry makes a remarkable recovery, her vast wound healing by secondary intention, thanks to repeated debridement and proper dressing, healthful nutrition, rest, physical therapy, and her quitting smoking. And tincture of time: two and a half years of expert and compassionate care at Laguna Honda.

You could argue that Terry would have recovered had she received the same care from a physician who'd never heard of Hildegard but prescribed the same therapies. I agree. That argument, however, misses the point: Without a premodern concept of viriditas, Sweet likely would have been less persistent and holistic with the many little efforts she took to facilitate Terry's healing.

It's easy to get misled when you read that Sweet, despairing about Terry's prognosis, asked, "What would Hildegard do?" To put that comment in context, Sweet later emphasized how her intimate knowledge of Hildegard led her to feel "even more grateful for modern medicine...especially for its scientific method, which tests the past, rejects what is ineffective, improves on what works, and passes to the future its powerful results."

Sweet doesn't ask you to share her belief that a life force enters the body with a baby's first breath and leaves with the final expiration. Nor does she suggest that viriditas emerges from biochemical processes (analogous to the notion that consciousness emerges from brainwave activity) and disappears at death. Through stories and discussion, she encourages you to swim against the tide of mechanistic commoditized care and embrace the mysteries of life and healing. She presents her case for clinicians to continue capitalizing on the truths revealed through modern science, while integrating aspects of premodern medicine that can serve patients—and clinicians—well today.

Premodern medicine has no place in patient care. What it can do for today's clinicians is what Hildegard's writings did for Sweet at Laguna Honda: offer inspiration and timeless lessons about the value of observational skills, patience, diet, exercise, meaning, connection, community, and tending to the little things.

This complex book devotes a few pages to Sweet's 1,200-mile pilgrimage on foot to Santiago de Compostela. She began that journey with hope of better understanding "otherness" and tasting 12th-century living. Through the hardships of that pilgrimage, she learned to expect the unexpected, find peace in the waiting, and feel satisfaction with "things as they turn out to be"—invaluable lessons for clinicians.

Throughout the book, Sweet weaves the saga of the demise of the original Laguna Honda and the transition to a modern facility. Here, I found her storytelling tedious. Still, those sections helped me think about the relationship between nurses and physicians, and about the roles of architectural and administrative structures in the healing equation.

God's Hotel offers a fresh way to think about the challenges of modern patient care. You'll reaffirm or modify your understanding of what, exactly, you do to facilitate patients' healing. And you may find practical ways to improve your care.

Wednesday, February 20, 2019

Helping Patients Cope With Losing Things

​Patients with cancer-related cognitive impairment (CRCI) may never tell you about their trouble with losing things. Compared to recurrent cancer and chronic pain, misplaced keys and lost checkbooks are no big deal. As for those patients who do mention it, what can you say?

A helpful response depends on understanding not only the symptoms of CRCI and differential diagnosis, but also the darker side of constantly losing things. Here's a glimpse of my struggles and the insights that help me cope. I share them with the hope that they help you find healing words for your patients.

Before my cancer diagnosis, sunup-to-sundown multitasking defined my life as a young internist and mother of three. After various courses of cancer therapies, balancing life became almost impossible due to cognitive impairment: difficulties with attention, word and memory retrieval, working with numbers, topographical agnosia, information-processing speed, and impaired short-term memory.

Just as a sore bruise on my funny bone made me aware how often I lean on my elbow, my CRCI exposed my dependence on short-term memory to navigate the world and be "me." I burn extra calories walking into rooms and then wondering why I'm there. Sometimes I'm rude during conversations, interrupting with my thought before it slips from my mind. And I misplace and lose things every day.

This is my understanding of why I keep losing things: it's as if my brain no longer sees the whole picture, or it sees it but later can't retrieve it. Like a camera zoomed in on a subject, my brain creates easily retrievable engrams only if I'm focused on what I'm seeing and doing. Consequently, when I try recalling past events, a blank slate replaces images of what I did automatically, as well as the sights and sounds I experienced peripherally.

If it's important for me to recall some event or action, concerted effort and time may produce useful images. Or, if I'm presented with evidence (i.e., someone remembers seeing what I did with the misplaced object, or the item turns up), a memory of it might emerge. Too often, it remains amorphous.

I accept my CRCI as a cost of my survival. Had I known upfront I'd develop this aftereffect, I'd have proceeded with the same treatments. Still, painful thoughts and feelings arise when surprised by a loss, for reasons I'll illustrate with a story.

Ding Dong. Before opening the door for a photographer a few months ago, I quickly went to my jewelry box to grab my signature "Hope" necklace to wear for a magazine photo shoot. Surprise! The handcrafted piece wasn't where I usually keep it. "No big deal; I'll find it tonight," I reassured myself while grabbing another necklace.

Well, I didn't find my "Hope" piece in my jewelry box. Nor did I find it after calling the hotels I'd visited since the last Facebook proof of wearing it, searching on my hands and knees with a flashlight in my bathroom and around my dresser, or going piece by piece through every necklace and bracelet I own, twice.

To help me move on, I concluded it was gone and recited my trope "It's just a thing." Yet, thereafter, my morning accessorizing routine included briefly searching through my necklaces and bracelets for my silver "Hope."

That irrational searching was fueled by more than missing my one-of-a-kind necklace. I wanted to live in a world that made sense. Where books and wrapped gifts didn't just disappear. You see, a reliable physical world helped life feel normal after cancer. Each time I lost something, the physical world seemed uncertain, which exacerbated the rumbling anxiety of knowing (the way survivors know) that life is uncertain. I yearned for an end to the little losses that kept reminding me of the inevitable great loss.

Wow, that sounds awfully melodramatic. After all, everyone loses things now and then. This is different.

Before developing CRCI, I took losses in stride. Now they trigger exaggerated responses because they keep throwing me off balance. It's like when you go downstairs and—aaaahh!—almost fall because you thought you'd reached the landing when you had one more step. My efforts to do things and go places are repeatedly interrupted by the discovery of losses that drop me to my knees, wasting precious time on another search.

These days, I calm the unpleasant thoughts and feelings rather quickly when home alone. If with family when I lose something, it's still distressing. All heads turn toward me, even if I had nothing to do with the item gone missing. I don't blame them: I also assume it's my fault. Even though my family is extraordinarily gracious and understanding, it hurts to watch them searching, too—my loss now our loss.

Here's the good news: patients can do a lot to decrease their risk of losing things. I'll devote my next column to a patient handout filled with insights and tips, some of which might be useful during an office visit, such as...

  • Your "losing things" is real, and it's different than normal "losing things" experienced by healthy, busy people.
  • This is not your fault; it's a cost of your survival.

CRCI is an invisible wound that can make life difficult. Patients who mention that they are "losing things" open up opportunities to improve their care. After validating patients' distress, you can determine whether there's a need to evaluate for other causes of cognitive impairment. Maybe you can adjust their medications. And you can guide them to resources that help them accept and adjust in healthy ways. In doing so, your expert, compassionate response helps patients live their best life.

Months ago, I stopped looking for my "Hope" necklace. That letting go saved time and brought me peace. I also found peace by embracing the mystery of where the necklace ended up, using the loss as a reminder to embrace—not fight or fear—the mystery of life. I moved on. Unexpectedly, while getting dressed last week I lifted an old bottle of lotion and couldn't believe my eyes: a silvery glint of "Hope" on a chain.