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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.

Monday, January 7, 2019

What's the best response to patients who express hope for a miracle? When I was in practice, I usually said nothing. My tongue was tied with fear of saying something that might foster false hope or come across as demeaning. Besides, my training made clear that faith was beyond the scope of medicine.

In retrospect, I wish I'd found a way to acknowledge patients' references to miracles, especially in cases where patients had bumped into the limits of modern medicine. Surely I missed opportunities to guide patients toward healing hope—realistic hope that helps patients live their best life. That leaves me with the challenge of finding a response that can help and not harm the patients who now reach out to me as a co-survivor (and not as their physician).

My search for healing words begins, as usual, by typing "definition miracle" in the Google search bar. The various definitions only create more questions. Do patients who talk of miracles mean they believe in outcomes contravening natural laws and the order of nature? If so, are those patients telling me they believe in magic or supernatural beings? Or are they taking a more biblical stance, sharing their faith that miracles have a clear explanation: God swoops in with acts that supersede natural law, His divine intervention shaping human affairs.

Then again, people often use "miracles" in more earth-bound terms, such as when someone says, "The traffic was so awful, it's a miracle I arrived on time." Patients who mention hope for a miracle may intend nothing more than hope of achieving an unlikely—but possible—good outcome.

Lastly, patients may simply be referring to the wonder of life. Everyday "miracles" surround us, from sunrises and sunsets to icicles adorning tree branches in the winter and crocuses popping through hard earth in the spring.

To complicate matters in tough situations, a variety of reasons (often subconscious) may prompt patients to tell you they're hoping for a miracle. For some, "I'm hoping for a miracle" is a way to ask for validation they heard you right...that the likelihood of the unwanted outcome is as they feared. They're pitching you a chance to clarify any misunderstanding: "No, no, we don't need a miracle. Many patients recover with the recommended therapies."

Other patients know they heard you right. They're just not yet ready to believe the unwanted news. For them, the language of miracles may serve as a stepping stone through the transition to acceptance. It's emotionally easier to say, "I'm hoping for a miracle" than to say, "Cancer treatments can't help anymore" or "I need treatment that will likely cost me my fertility."

Still other patients accept their new reality but may be struggling with "What can I hope for now?" Talking about hope for a miracle helps them hold on to their overall hopefulness while grieving the loss of specific hopes and working their way to new hopes, such as hope to become a parent through adoption or, at the end of life, hope to make the best of each day.

The good news for clinicians is that whatever patients mean by "miracle" and whatever the impetus for their comment, they generally need the same three things from you: 1) sound information about their condition and options, 2) your assessment of both the prognosis and the best possible outcome, and 3) guidance in their efforts to find healing hope. At times (not always), patients' reference to miracles may offer an opening to fulfill all three needs.

If magically I were back in practice and patients mentioned their hope for a miracle, I'd consider responding by...

  • Acknowledging their comment. I'd try to find some way to let them know, "I hear you."
  • Sharing my wishes for them. I might follow up with, "I wish I could write a prescription for a miracle" or "I wish I had a magic wand to speed up today's research." The image of fantasy wishes provides a gentler way to clarify and reinforce upsetting facts, and to do so with compassion. Wishing reflects disappointment, an emotion that shows I care. And the focus of the wishes on the limits of available therapies may help prevent patients' regret about past decisions.
  • Highlighting the uncertainty. I'd open the door to realistic hope by saying, "On occasion, things happen in medicine that we don't expect and can't explain." To minimize the risk of fostering false hope, I'd spell out the difference between expectation and hope, and then remind patients "You can accept the likely outcome while hoping for the best possible outcome."
  • Reassuring patients of my commitment. I'd offer a variation of "prepare for the worst and hope for the best." Here's an option that avoids the directive while sending the same message: "I'm prepared to care for you, whatever happens. While expecting the likely outcome, I'm hoping for the best possible outcome for you." If appropriate, I'd add that I'd be thrilled if their cancer proves my prognosis wrong.

A huge challenge in oncology is the frequency with which you care for patients in heartrending situations, from patients with options that, while curative, will likely cause permanent life-altering losses, to patients whose only option is a Hail-Mary intervention, if they have any options at all. Without a magic wand, the best you can do is prescribe the best therapies for each patient and hope for the best.

Meanwhile, those patients need hope, which may seem elusive. Patients' mention of hope for a miraculous recovery may be your cue to offer information and inspiration. What you say—and don't say—matters. A caring response may help them adjust to their new reality and move forward with hope that helps them get good care and live as fully as possible today, tomorrow, and every day.

Monday, October 22, 2018

Compared to surviving cancer, needing some sort of crutch to get through the day is no big deal. Unless it is. After completing cancer treatments, some patients balk at using any aids that could make life easier, safer and, one would assume, happier. I sympathize. Early in my survivorship, I resisted using any crutches, even though what I needed was far less conspicuous than a walker or compression sleeve. Here I'll share the experiences that transformed my perception of such aids—and of myself. Maybe my story will be useful in your care of patients who refuse to take advantage of available aids or use them reluctantly and unhappily.

The first time I needed crutches—the forked-metal-struts kind with a crossbar for the armpit—was as a medical student nursing a swollen ankle. The clock ticked away as I hobbled from one tagged display to the next for my anatomy final. I hated those crutches that slowed me down.

Decades later, I needed a different kind of crutch. My injury was not a temporarily swollen joint but post-cancer fatigue and cognitive deficits. For months, I seemed to spend more time looking for my keys than driving. While running errands, my insistence on relying on my faulty memory led to mistakes that distressed me, especially when my goofs inconvenienced other people.

I didn't need a medical degree to know life would be better if I attached my keys to my pocketbook and used checklists for errands. Yet I stubbornly resisted using any aids, setting in motion a vicious cycle of feeling and functioning worse and worse until my invisible wounds wore me down and threatened my sense of self.

The reason for my resistance can be summarized in an aphorism found in my book, Healing Hope: "Illness makes smart people do foolish things." To be fair, my jokey response to a serious problem helps patients like me save face and move on without exploring the psychological and emotional terrain of our unwise decisions.

It's worth taking a moment, though, to consider possible explanations for patients' resistance to using any sort of crutch. Patients may feel daunted by the rigmarole of acquiring and learning how to properly use it. There may be a burdensome expense.

Beyond practical matters, crutches spotlight a debility—to the patient, if not to the world. Patients' resistance to using crutches may reflect their desire to…

  • Maintain control over "something"
  • Hold on to their "non-cancer" self-image
  • Not be reminded of their loss
  • Avoid accepting another loss and experiencing grief

In addition, patients may fear using anything "as a crutch," with that pejorative connotation of leaning on an aid excessively. If struggling patients are impressed by stories of mountain-climbing survivors, they may berate themselves and wonder, "Am I trying hard enough?"

For me to function more normally, I needed ordinary memory aids. That I hesitated at all highlights one of the challenges for patients whose cancer or treatments cause significant injury: Patients may have to grieve their loss as a step toward accepting it. They may have to work their way to seeing themselves as whole.

Fortunately for me, at my first survivorship event I met a middle-aged woman with a hearty laugh who had accessorized her colorful clothes with an equally colorful, matching-fabric eye patch. After barely surviving recurrent childhood retinoblastoma and suffering failed prostheses, she'd embraced her differentness with a creative flare.

Her example helped me hear—and believe—words of encouragement, such as…

  • You are not your crutch.
  • Using a crutch when you need one is different than using something as a crutch when you don't need one.
  • Choosing to use needed crutches is the same as choosing to make life the best it can be.

Prioritizing my hopes helped, too. I asked myself which I hoped for more: avoiding crutches or avoiding problems. It was a question of values: Did I care more about how I looked or how I functioned?

My hope to live my best life prompted me to go to a hardware store and buy a pink stretchy plastic spiral coil for my keys and a purple one for my wallet. Since that day, no more looking for misplaced keys. No more worrying about leaving my wallet on a store counter. When my cellphone alarm reminds me where I'm supposed to be, I simply grab my pocketbook and my cellphone with my digital checklist, and I confidently head out the door.

Looking back at my experience of hobbling through the anatomy final, I didn't hate my crutches. I hated my sprained ankle. Thanks to my crutches, I finished the semester on time and my ankle healed.

Today, every time I pick up my pocketbook I smile with relief at the sight of my plastic coils in my favorite colors. I feel grateful for—even proud of—this crutch that decreases my stress and helps me live my best life, a life made possible by my treatments.

Comprehensive cancer care includes helping patients overcome practical and emotional obstacles to using aids optimally. Acknowledging patients' losses and honoring their grief can set the stage for sharing the hopeful news: from Wal-Mart canes to high-tech orthotics, aids offer a way to take ownership of their life and function as normally as possible.

Monday, August 6, 2018

Begin hospice? Or try a promising-but-unproven therapy? It's an agonizing decision for patients who have no standard options and are ineligible for trials. How you present those options plays a major role in their ability to make informed decisions in keeping with their values. The fictional soliloquy below, based on a true story, illustrates how your words may guide and support patients throughout their lonely journey of decision-making.

SETTING: Dusk. A middle-aged patient sits at his kitchen table all alone, staring at the spiral notebook with notes from his doctor visit earlier that day. A few wadded tissues are off to the side. He hears his doctor's voice in his head.

DR. ATZ (voiceover)

Power lies in choosing how we play the hand life deals us. You can choose what you do now.


How do I make this overwhelming decision? Impossible! (He sets down the notebook and looks out the window at the setting sun.)

The drug is my last hope—if it really is a hope. It's too new to know if it helps or hurts patients like me. I don't wanna be a guinea pig. But if I don't take it…we're talking hospice. I'm not ready to die; I guess I have to take the drug.

The drug is promising—not like trying some kooky cancer cure. And it won't be like taking chemo, because side effects are mild in most people. (grunt) Most people. That treatment has made some patients sick…sick enough to die.

Oh, God. (He clasps his head in his hands.)

How am I supposed to figure out what to do? More than I don't want hospice, I don't want to take the drug, get sick, and die anyway. There must be something better….

DR. ATZ (voiceover)

I wish we had something better to offer.


Dr. Atz told me to focus on making the best decision. I've made difficult decisions before. She said this is just one more decision. Nuh uh, this is not like any decision I've ever made. Before today, we never mentioned hospice. I…(sniff)…want…(sniff) to live. (sobs, briefly) I'm just not ready…to give up…to stop fighting.

She tried to say there are different ways to fight cancer. Sometimes patients fight by doing treatment. Other times patients fight by optimizing quality of life. Both sound like losing ways for me to fight my cancer. I've never felt so powerless. (He looks at his spiral notebook.)

"Power lies in choosing how we play the hand life deals us." Dr. Atz is right: I have the power to choose. I can weigh the pros and cons of each option, giving extra weight to things that matter most to me.

(He gets up to flick on the wall light switch. He sits back down, turns to a blank page, draws a vertical line down the center, and writes at the top, "drug" on one side and "hospice" on the other.)

First, the pros of taking the drug. If it works, I get my life back. (Under the "drug" column he jots down, "It may work.")

Dr. Atz wouldn't have mentioned the drug if she didn't have hope it might work. Right? The man in the magazine article went from death's door to clear scans and good health. That could be me. (He smiles weakly for a moment while adding stars next to, "It may work.")

Besides, if I go for the drug I won't have to think about the "H" word (hospice), let alone have the "H" discussion at home, with those sad faces that make me feel awful, like I let everyone down. (Under "drug," he scribbles, "No 'H' talk.")

Dr. Atz warned me talking about hospice is sad, even for patients confident it's their best choice. She emphatically insisted hospice is about living and encouraged me to make a list of things I'd do if I stopped treatments. Wow, it's hard to remember life without treatment. (faint smile) So many things I'd love to do! (Under "hospice," patient starts writing a list of activities he's postponed or abandoned because of treatment. He freezes mid-word. His smile fades.)

I'd rather feel crummy and go to the clinic every day, if treatment gave me a chance to survive. That's the kicker, eh? Nobody knows if the drug increases my chance of survival. Oh, I hate the uncertainty.

Although…uncertainty means there's hope, which means uncertainty is good. Ah, maybe now I know what to do. I'm pretty sure I'd rather live with the uncertainty of treatment than live with the certainty of hospice. The minute I start hospice, I'm dying.

DR. ATZ (voiceover)

(firmly) You are not dying now, whatever you decide about treatment.


Fine. I'm not dying today. I'm dying within 6 months. That's the official life expectancy in hospice. How can I enjoy life while expecting to die? I can't imagine living without some hope of surviving. (He flips back to his doctor-visit notes)

DR. ATZ (voiceover)

You can expect one thing and hope for another.


I always thought hospice patients were hopeless. Then she told me stories of patients in hospice who prepared their funerals down to the readings and songs yet kept hoping to recover. Expecting the likely outcome while hoping for the best, they thumbed their nose at cancer by enjoying life in ways they couldn't while in treatment.

Most of those patients ended up dying. But not all. One of her patients recovered, unexpectedly and inexplicably. A few patients stopped hospice to enter newly opened clinical trials. Many lived longer than expected, surely longer than had they continued treatment that didn't work.

DR. ATZ (voiceover)

In hospice, the only hope patients must let go is hope that treatment can help their cancer.


I get it. There's always hope. Good to know. (sigh) Now I'm back at square one.

Maybe I should try the "regret" exercise Dr. Atz mentioned. It's designed to stir emotions that might help me decide. I'm supposed to think about each option separately, imagining how I'd feel if I had the worst outcome and if I had the most likely outcome.

Which worst outcome would make me regret my choice more: Getting sick from the drug without it helping my cancer or getting sick from my cancer in hospice too quickly for any quality time? Hmmm….

Lemme try that exercise again, only this time looking at the most likely outcomes. After all, according to statistics, the most likely outcome is the most likely. In hospice, the likely outcome is dying. In treatment, the likely outcome is, ugh, dying. At the end in hospice, would I regret not trying the drug? Hmmm…. At the end in treatment, would I regret the time I'd spent at the cancer clinic or being sick from treatment? Hmmm….

(His eye catches the large refrigerator magnet with block letters that say "Triumph over cancer is measured by how I live, not how long.")

Since our first meeting, Dr. Atz kept telling me her goal was to help me live my best life every step of the way. Whatever my test results, she always reminded me clear scans were not the goal…they were only a means to our goal. Cancer made me realize that "now" is all any of us really has—sick or healthy...that every day is a gift. How do I want to use this gift of today? Clearly, there's no right answer…or easy answer.

Dr. Atz believes there is a best answer for me—and I'm the only person who can find it. The last thing she said before I left her office was to listen to my hopes, because "Where there is hope, there is life."

Maybe the key to solving my dilemma is figuring out which hopes can help me live my best life now. Will I find the most meaning and most happiness by holding on to any sliver of hope of treatment? Or by letting go of that hope and by making quality of life my number one hope?

I wish I could have both hopes. I can't. It comes down to deciding which hope takes priority, which one I hope for more. (long pause)

Given my chances with each option, and the pros and cons of each option, I think I know. As much as I want to stop thinking about this and be done, I'll wait at least a day before doing anything. Then I'll call Dr. Atz's office with my decision.

This view from the other side of the stethoscope doesn't reveal what the patient decided. Without knowing his top-priority hope, it's impossible to deduce from the soliloquy. That scripted ambiguity highlights that the best decision is not determined by statistics or medical information, but by patients' ability to weigh the pros and cons of each option in the context of their values.

The best you can do in the face of uncertainty is to facilitate your patients' efforts to choose. By sharing insights and decision-making tips along with medical information, you help them process the information and reflect on their values throughout the decision-making. Then, whatever the outcome, everyone can take comfort in knowing patients took the best path for them, a path lined with the hope that enabled them to live as well as possible.

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, if that hope helps them emotionally.

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 had demonstrated 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.