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, July 5, 2018

When you have no standard therapies left to try and your patients are ineligible for clinical trials, do you ever mention promising-but-unproven therapies? Gina Kolata addressed this controversial topic in the article "'Desperation Oncology'" (New York Times, April 26, 2018). Against a backdrop of President Trump signing the Right to Try Act and the media trumpeting triumphs of novel immunotherapies, Kolata quoted a few clinicians who do—and others who don't—prescribe novel immunotherapies outside trials.

I was equally interested in how clinicians presented the option to patients as in how they justified their decision. For me, this dilemma was personal. Months ago, my sister tearfully called me after her oncologist recommended a checkpoint inhibitor as her last hope. She knew I'd made difficult treatment decisions myself. Decades earlier, I'd put my hope in a phase I trial to treat a recurrence for which standard therapies were palliative. Unfortunately for my sister, she was ineligible for any trials, and palliative therapies had already failed, which dialed up her desperation.

To help her make the best treatment decision, I took a deep breath and asked myself, "What are ethical, compassionate ways to answer patients who inquire about—or demand—unproven therapies?" A return to fundamental principles of decision-making offered some guidance.

In every clinical scenario, whether we're motivated by professional compassion or familial love, the goal remains the same: to guide patients to informed treatment decisions in keeping with their values. The challenges are especially great when treatments are so new you don't yet have outcomes data to help weigh the risks and benefits, and when patients want you to do something, anything, to help them survive.

Do desperate times call for desperate measures? Is it appropriate for clinicians to "engage in a different kind of oncology than the rational guideline thought…offering unproven drugs to some terminal patients as a roll of the dice?" Is it ever okay, as Kolata reported, for oncologists to ask patients a diplomatic version of "Do you want to try an immunotherapy drug before you die?"

Kolata's provocative paraphrasing triggered some insights that might prove useful. For starters, any variation of "trying an intervention before you die" presents patients a choice between holding on to hope of recovery or letting go of that hope. Put another way, patients are being asked to choose between the uncertainty of an intervention or the certainty of death. Both choices create bias to try.

Both are false dichotomies, too. Patients with advanced disease do not have to let go of hope of recovery when they stop cancer treatments (Oncology Times 2011;33(13):37). Patients can accept they'll very likely die within 6 months while hoping to live long enough to benefit from new treatments. They can hope to be the rare patient who inexplicably recovers.

Other hopes are linked to each option, too, and talking about them helps minimize bias. Unproven therapies tap into patients' hope of being a pioneer or a cancer warrior, fighting to the last breath. Hospice offers hope of maximizing quality of life in whatever time they have and hope of living longer than had they continued with treatment.

Then there's the issue of the uncertainty associated with unproven therapies. Patients are intimately familiar with the uncertainty of standard therapies. Since their diagnosis, they have proceeded with treatments they knew only "might" work well for them.

Anyone can tell your patient, "the promising new immunotherapy might work for you." I have no problem with that. It might. The problem is you are not "anyone." Patients presume your recommendations are based on evidence of efficacy, and not on an anecdote, a gut feeling, or your hope of getting a lucky roll of the dice.

Patients can make wise decisions only if they understand that your past recommendations of standard therapies weighed in the certainty that those therapies demonstrate benefit in groups of patients like them. In contrast, with unproven therapies you don't yet know if the treatment helps patients like them, makes no difference, or makes things worse.

Of note, five of the oncologists interviewed by Kolata added comments like, "If I was a patient, I want my doc to do everything"—meaning "do everything that might increase the chance of surviving." The million-dollar question is: Are you increasing patients' chance of survival with an unproven therapy?

There is an answer. Trials will soon uncover that answer. Until then, we don't know whether you are helping—a notion that jars all our sensibilities because we feel hopeful about promising therapies.

Feeling hopeful can lead clinicians astray. To that point, Kolata highlights "the pitfalls of treating patients before all the evidence is in." She references the cautionary tale of compassionate, hopeful oncologists who in the 1980s and 1990s gave high-dose chemo to women with breast cancer outside clinical trials. That is, until trials demonstrated worse outcomes.

Desperate situations call for equanimity. Help patients process difficult information and make the best decision by first…

  • acknowledging the difficulty of the situation
  • emphasizing the value of weighing all the pros and cons
  • affirming your desire to provide whichever interventions might help
  • expressing confidence in their ability to make the best decision for them

During the discussion, clarify how unproven therapies differ from standard ones: Nobody today knows if a new treatment might help or harm, no matter how promising the theories behind it or exciting the anecdotes of recoveries.

Review the pros and cons—and the hopes—associated with pursuing an unproven therapy and with enrolling in hospice. Explain the best and worst possible outcomes for each option. By painting a picture of patients' chances and their quality of life with each option, you equip them to choose a treatment path in keeping with their values—and minimize regret if things don't go well.

In desperate situations, patients look to you for hope. By helping patients accept the limits of what we know and appreciate all we do know, you nourish patients' hope of making the best decision for them.

"By painting a picture of patients' chances and their quality of life with each option, you equip them to choose a treatment path in keeping with their values."

Friday, May 4, 2018

We need to talk about survivor guilt: the emotion survivors may experience after learning someone died of cancer. While less troublesome than fear of recurrence, it unsettles enough patients to merit our attention. We'd do well to find a better label, one that serves survivors who experience it and caregivers and clinicians trying to respond with compassion.

On-and-off since my first remission, I've experienced so-called survivor guilt as a vague and fleeting feeling. Recently, while anticipating the launch of my latest book and the arrival of my first granddaughter, waves of it became more intense and frequent, which wasn't surprising since my sister in hospice was never far from my thoughts.

The waves of emotion began while packing to visit her after three and a half years of being her confidante and co-survivor, helping her navigate her medical care and her hopes. I was sliding a wrapped gift inside one of my shoes and wracking my brain for what else I could bring to her. Feeling awash in the yinyang of my sister's endings and my beginnings, my chest tightened, and a few large tears plopped into my suitcase before a constriction of my throat caused me to cough up a prayer of thanks for the joys in my life.

Reflexive gratitude was my well-practiced response. Decades earlier, a wave of emotion after the cancer death of a friend had prompted me to reflect briefly on the feeling everyone called survivor guilt. Convinced I hadn't done anything wrong and wanting to use the feeling positively, I committed to "never allow myself the luxury of feeling guilty about my good fortune, because the most powerful way for me to honor [those who died] …is to delight wholeheartedly in all that is right in my world (Guilty. Oncology Times 2008;30(2):38)."

Expressing gratitude is a logical and healing response to others' death. Yet for whatever reasons (and the possibilities are endless), survivors may experience a disquieting sense of guilt. Even a concerted focus on gratitude may not resolve the discomfort. We can help such patients by addressing survivor guilt as a common symptom needing attention.

The first order of business is to address the "guilt" part. Guilt is defined as the unpleasant emotion that arises when you've done something wrong. Clearly patients haven't done anything wrong by surviving: "Your survival can't hurt any other patient's chance." Period.

Patients may feel guilty for doing something wrong, such as making plans for next year and continuing their daily routines as if nothing in the world has changed. You can offer the notion that embracing life with heightened gratitude and gusto is a meaningful way to honor those less fortunate.

Patients may accept they're not guilty of doing anything wrong, yet they worry they're feeling something wrong, such as relief it's not them or happiness about a job promotion. Bringing that worry out in the open may help: "No thought or feeling is wrong, unless you act on it in unacceptable ways." Patients need to know it's okay to have boorish thoughts, such as, "Well, he did smoke like a chimney," and it's fine to feel glad about secondary gains, such as a new job opening.

The label, survivor guilt, does patients a disservice by focusing on guilt and, more disturbingly, by reinforcing any tendency toward self-blame and shame. The idea crossed my mind to take a page from my work on hope and call the feeling "survivor false guilt." Analogous to false hope, false guilt can be defined as a real feeling linked to a misguided belief—the belief you've done something wrong when, in fact, you haven't. Tacking on "false" may be all patients need to dismiss the unpleasant feeling and move on.

Or not. When I tried it on for size, "survivor false guilt" didn't work. The clumsy term missed the layers and layers of sadness. Many survivors feel sad for the person who died and sadness for that family, which may trigger flashbacks of their own anticipatory grief over the same losses they once feared for themselves and their own family. Empathic sadness for anyone suffering from cancer seems to be a common thread that may cause a survivor to bawl at survivorship celebrations or walk around in a daze after the cancer death of someone known only by a screen name on a blog.

Mixed with patients' sadness may be a humbling existential angst of "Why me? Why did I survive?" That mystery tends to feel bigger and more tangible after cancer. Primal issues of unworthiness, vulnerability, and powerlessness may surface. With the unfairness and seeming randomness of life center stage, a sprinkling of fear of recurrence may add zing to the emotional soup.

If not "survivor guilt," what can we call this complex emotion? Especially since it's hard to know what to feel after the death of someone from cancer, it would be nice if the sound of the label fit the feeling, whatever a survivor's unique blend of sadness, angst, humility, fear, and false guilt.

I've been trying out "saditude" with other survivors. They don't find it silly and like how it encourages them to think about their attitude toward life, inspiring them in forward-looking and empowering ways. The reason I like "saditude" is how it captures the sadness that may give rise to gratitude. If nothing else, the absence of "guilt" in the label may help minimize the burden of undeserved guilt and shame.

It's sad and unsettling for survivors when other patients die. Calling the feeling "survivor guilt" unnecessarily adds to their discomfort. For now, unless you have a better suggestion, let's try calling it "saditude" to help survivors adjust to the news and choose an attitude of gratitude and hope.

Friday, January 5, 2018

Resolutions are firm decisions to do—or not do—something from now on. I make resolutions throughout the year, often delicately expressed as, "Dang! I'll never do that again." In contrast to disaster-driven vows, my New Year's resolutions are the result of ritualized reflection that begins days before the downbeat of Auld Lang Syne.

Insights and lessons learned through academic endeavors and personal experiences give rise to new hopes for how I want live my life in the coming year. To help both my professional and personal hopes become reality, I compose a list of New Year's resolutions.

Today, looking over the spanking new list of resolutions taped to the frame of my computer, the three related to my survivorship work catch my eye:

  • Help patients build resilience
  • Help patients choose healing hopes
  • Help patients celebrate today

A year ago, those resolutions would have sounded humdrum. Not today. Exploring those topics this past year opened my eyes to their power to help patients get good care and live as fully as possible. Here's how I expect to use those resolutions to serve my life mission through writing, speaking, and one-on-one conversations. I'm convinced they would have served that same mission while I was practicing medicine.

Resolution #1: Help patients build resilience

It's ridiculous that no ICD codes or board questions address patients' resilience. Patients need resilience—the ability to recover from difficulties—to endure cancer treatments and enjoy life despite unwanted changes. I can help patients build resilience by guiding and supporting their efforts to…

  • Accept and adjust to things they cannot change. Acceptance helps them avoid wasting time and energy striving for something that's never going to happen. Adjustment makes life easier. I can encourage patients to take advantage of the services of counselors, allied health professionals, and resources that facilitate patients' acceptance and adjustment.
  • Develop realistic expectations about the pace and difficulty of recovery. Such expectations help patients avoid disappointment or despair. I can guide them to facts about how to facilitate a smooth recovery. If indicated, I can suggest they ask about rehabilitation services.
  • Address modifiable factors that deplete resilience. I can encourage patients to talk candidly with their physicians about signs and symptoms, including problems with sleep, nutrition, mobility, and mood, as well as about the various stresses in their life.
  • Take steps to build resilience. Survivorship depletes resilience. I can encourage patients to offset some of that depletion by seeking out inspiring stories and aphorisms, as well as carving out time for relationships and activities that fill their soul.

Resolution #2: Help patients choose healing hopes

Hope matters. Not just any hope, but healing hope, namely hope that motivates patients to proper action when they can do something to increase the chance of the desired outcome. Healing hope also helps patients wait while they are doing all they can—and when there's nothing they can do. I can foster patients' efforts to choose healing hope by encouraging them to…

  • Obtain information about the possible outcomes: the best, worst, and most common outcomes—and the likelihood of each.
  • Focus on their hope of outcomes under their control, such as hope to make wise decisions, comply with therapies, optimize behavior (sleep, nutrition, exercise), repair a fractured relationship, find some humor in a tough situation. Patients can maintain hope of outcomes beyond their control, too, but just let those hopes drift into the background.
  • Focus on short-term hopes, such as getting through the next round of tests or treatments, or even just getting through the day. It's fine to think about longer-term hopes such as hope for remission or cure, unless doing so exacerbates anxiety.
  • Periodically reassess their hopes. If certain hopes are no longer serving patients well (or have become impossible to fulfill), letting go of them and finding new hopes fosters healing.
  • Take steps to nourish their hopes, such as reading success stories, surrounding themselves with inspirational messages, visiting with people who lift their spirits and, when possible, avoiding people who drag them down.

Resolution #3: Help patients celebrate today

The medical aspects of cancer care often threaten to consume patients' attention, especially during doctor visits. I can encourage patients to celebrate the small victories, such as a procedure that goes well or an encouraging test result. Celebrations acknowledge patients' accomplishments, help build patients' confidence, give meaning to the hardships, and strengthen the clinician-patient bond. I can encourage patients to find simple ways to celebrate life each day. Doing so sends the messages…

  • Every day is a gift.
  • It is possible to find some joy in tough times.
  • We expect them to find some moments of joy.
  • Joy requires effort.

Finally, I can encourage patients to share with their health care team how they celebrate between office visits. Doing so helps patients feel their clinicians see them as people, not "cases." Personal stories help the health care team understand what patients value, which enables them to personalize their care. Patients' photos and stories of celebrating can be precious gifts to the health care team, too, linking all their hard work to moments of joy.

Throughout the year, my survivorship work enables me to know both the fragility and the hopes of life, and with that knowledge to live most fully. To help me practice what I preach, I added three New Year's resolutions I believe can help my own health and happiness as a healer:

  • Build my resilience every day.
  • Choose healing hopes by asking myself every morning, "What am I hoping for today? How will I nourish that hope?"
  • Find something or some way to celebrate each day, whether by wearing my favorite colors, sharing a joke, or spending time with someone or doing something that brings me joy.

With respect and gratitude for your work, I wish you a healthy and happy New Year.

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.​