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by Matt Tyler (@PalliDad)

In the survival game Subnautica, you play the role of a space voyager who has crash landed on an aquatic alien planet. You must find a way to escape while navigating the planet’s beautiful but dangerous flora and fauna. Exploration makes the core of Subnautica, and because I am a palliative care doctor, I couldn’t help but draw a parallel to serious illness conversations. Whether exploring shipwrecks and underwater caverns or the emotions and stories of patients, both require curiosity, methodical skill development, and respect for boundaries.

Any explorer must first and foremost be curious, even in the face of danger. You won’t make progress in Subnautica if you don’t get close to some scary sea monsters. The same is true for serious illness conversations, maintaining curiosity is essential even when encountering a strong emotion like anger. Rather than presuming an angry patient misunderstands the situation, a curious mind wonders about the origins of that anger and the suffering that may be beneath the surface. The empathy that flows from this curiosity can lead to new levels of understanding.

And yet, curiosity alone can only take you so far. At the beginning of Subnautica, your basic equipment will only let you explore a short distance below sea level. To discover the planet’s deepest secrets, you must gradually accumulate the resources necessary to upgrade your diving gear. Likewise, we need more than curiosity to explore the complexities of a patient’s physical, emotional, spiritual, social, and cultural needs in the face of serious illness. It takes time to develop the skillset needed to facilitate these conversations, ideally with observation and feedback from experts.

Even with the most advanced exploration equipment, there are depths in Subnautica that remain out of reach. There are no physical barriers to show that you’ve reached the world’s edge - that understanding only comes with your fully realized abilities. Similarly, seasoned communicators appreciate that although there are parts of a patient’s story that can be explored with advanced skills, there are always boundaries that must be respected. Though it requires a certain level of expertise to see these invisible walls, noticing their presence is vital for creating a patient-centered care plan.

Ultimately, survival in Subnautica depends not on rebuilding the world to suit your specific needs, but on learning how to work with the world on which you’ve crash landed. Building a relationship with our patients requires the same approach. If we are willing to dive into our patient’s world to understand and support what matters most to them, who knows what beauty can be discovered?

Subnautica is available to play on PC (Steam), macOS, PlayStation 5, Xbox and Nintendo Switch systems.

This post has a companion piece video hosted by Digital Doc Games (embedded below). Check out the Digital Doc Games YouTube channel hosted by Dr. Amiad Fredman for videos on how video games have a huge power to have a positive impact on people's lives.





For more Pallimed posts about games.
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For more Pallimed posts by Dr. Tyler click here.



Matt Tyler is a palliative care doctor in Chicago. If he's not watching Cocomelon with his daughters, he is probably playing video games.

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by Matthew Tyler (@pallidad)

Consider the last time you said “Yes” to something when you would have preferred to have said “No.” Maybe you worried saying “No” would damage a relationship. Or maybe you didn’t want to put your job at risk. In Studio Fizbin’s Say No! More you assume the role of a corporate intern on a quest to reclaim their lunch stolen by upper management. You go to battle with your manager, the C-suite, and beyond, wielding the power of a word never-before spoken within the walls of your office. Say No! More demonstrates in an over-the-top fashion how being able to say “No” can be a positive.

Although silly on the surface, Say No! More addresses the matter of social conditioning. From the moment we are born, we are taught to associate the word “Yes” with being agreeable and “No” with being disagreeable. As we age, our desire to be perceived as agreeable leads us to answer “Yes” to almost any question, even when it works against our best interests. As a facilitator of serious illness discussions, I am always looking for a way to frame questions so that the person feels comfortable answering in a way that honors their genuine selves. I realize people will often reflexively answer “Yes” and so I will rework questions to remove the onus of answering “No.”

Sharing serious news with a patient requires an environment conducive to discussion, and a big part of that is getting the timing right. A mindful clinician might first ask the patient “Is this a good time to talk?” but this phrasing risks receiving that reflexive “Yes” whether it’s actually a good time or not. We can work around this dynamic by instead asking “Is this a bad time to talk?” That way, the patient can give a “Yes” and will follow up with when it would be a better time, or they reply with a “No” that allows them to feel ownership of the conversation that follows. Timing is equally important when calling a family on the phone (where many serious conversations have been taking place these days). I often find clinicians diving in with difficult news the moment they hear “Hello” on the other end of the line. The obvious problem is that the person receiving the call could be in the middle of an important meeting or stuck driving in traffic. Asking “Is this a bad time?” disrupts the autopilot responses so common on distracted phone calls and creates the opportunity to either say “Yes” in a way that protects their needs in the moment or say “No” in a way that helps shift their focus to the conversation at hand.

Clinicians wishing to address questions of life prolonging therapy will often ask their patients questions like, “Do you still want us to do everything?” or “Would you like to go home?” Both questions can be problematic as they bias towards an affirmative response. Experts in serious illness communication recommend asking patients about what matters most to them before jumping into choices. Once the patient’s values are made explicit, we can pose a question that necessitates introspection and a prioritization of values regardless of whether the answer is “Yes” or “No.” That may sound something like this: “I am hearing that spending as much time at home with your family is very important to you, but that you are also interested in this clinical trial. Would you be willing to risk that time at home for the chance to extend your life?” In this case, “No” allows the patient to establish clear boundaries on treatment to preserve what they value most, whereas “Yes” makes explicit the hierarchy of their priorities to help the clinician offer their best advice on next steps.

Palliative care aims to help patients take control of their lives in the context of a serious illness. Creating space for patients to say “No” when needed is one way to foster that sense of control. Next time you need to have an important conversation with someone, consider how that discussion may be enriched by giving them the opportunity to Say No! More.

This post has a companion piece video hosted by Digital Doc Games (embedded below). Check out the Digital Doc Games YouTube channel hosted by Dr. Amiad Fredman for videos on how video games have a huge power to have a positive impact on people's lives.



Say No! More is available to play on PC (Steam), iOS and Nintendo Switch systems.



For more Pallimed posts about games.
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For more Pallimed posts by Dr. Tyler click here.



Matt Tyler is a palliative care doctor in Chicago. If he's not watching Cocomelon with his daughters, he is probably playing video games.

References

1 Voss, C., Raz, T. (2017). Never split the difference: Negotiating as if your life depended on it. Random House Business Books

2 Ury, W. (2007). The power of a positive No: How to say No and still get to Yes. New York: Bantam Books.

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by Matthew Tyler (@PalliDad)

During what can only be described as a challenging year, I found Thunderlotus’s game Spiritfarer just in the nick of time. In this “cozy management game about dying,” you assume the role of a young woman named Stella who is charged with shuttling spirits to the gates of the afterlife. Unexpectedly, Spiritfarer served as both an escape from and means of processing my experience as a healthcare worker during the pandemic.

From top to bottom, Spiritfarer exudes tranquility. The animations are bright and vibrant, and the music is soothing yet melancholy, invoking nostalgia for younger innocent days. With this backdrop, you spend your time in game managing the physical and emotional needs of your passengers. This entails gathering materials to upgrade your boat’s ability to reach more distant islands, constructing customized quarters to accommodate your growing roster of spirits, and cooking meals uniquely suited to each passenger’s preferences. I was especially delighted to learn I could hug passengers to boost their mood, though sometimes they will decline your offer - bonus points to the devs for promoting autonomy! Your efforts are reflected in the mood of each spirit - as it improves they share more about their lives. Ultimately, each story arc culminates in a heartfelt goodbye at the gate to the afterlife. For most of the spirits, at least.

One day, I was passing by the home of one of my favorite companions and saw the outside had been covered with flowers. My stomach lurched. Flowers only appeared after a spirit had passed through the gate, but how could this spirit already be gone? I hadn’t finished their storyline or said goodbye. What kind of closure was that?

At that moment, I was flooded with memories of conversations where I had to tell someone that their loved one was dying from COVID. Since our hospital restricted visitors I never knew the faces of these family members, just their tortured voices as I broke the terrible news by phone. I did this over and over again every day for what felt like an eternity. There were no proper goodbyes for these families. There was no closure, because how could there be? The breakneck pace someone could go from healthy to dying was impossible to wrap their heads around. It was impossible to wrap my head around it too.

In palliative care, we provide the medical knowledge necessary to help patients and families prepare for the future. We don’t talk about how that knowledge helps clinicians cope as well. Understanding how an illness progresses gives us mental schema to process the suffering to which we must bear witness. Yes, it’s awful to tell someone that the last line of cancer treatment didn’t work. But because we know the trajectory of metastatic cancer, it’s a conversation we mentally prepare to have at some point. There was no pre-existing narrative for COVID to emotionally brace ourselves for what was coming. So while I worked hard to navigate the devastation in the most optimal (or least terrible) way, I simultaneously resented the need. None of these people were supposed to be dying in the first place.

Spiritfarer was a gentle nudge to loosen my grip on how I think the future is “supposed to” look. It reminded me that, scale aside, COVID does not hold a monopoly on unanticipated loss in this world. Nor does working adjacent to death afford any control over it. Though the lesson goes deeper than that. Even if we can’t control how or when someone’s story ends, we are still encouraged to play our role in it. We keep working to discover our companion’s favorite dish. We take a moment to embrace them when they are feeling low. We hold space to listen to their stories and what is most important to them. Spiritfarer drives home that the inability to control an outcome does not mean we can’t be active participants in the process. And ultimately, taking care of our community is how we shape our future. So we chart the best course we can, and let the open water take us.

Spiritfarer is available to play on PC (Steam), Xbox, Playstation and Nintendo Switch systems.

This post has a companion piece video narrated by Dr. Matt Tyler and hosted by Digital Doc Games (embedded below). Check out the Digital Doc Games YouTube channel hosted by Dr. Amiad Fredman for videos on how video games have a huge power to have a positive impact on people's lives.





For more Pallimed posts about grief.
For more Pallimed posts about the experience with COVID-19.
For more Pallimed posts by Dr. Tyler click here.
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Matt Tyler is a palliative care doctor in Chicago. If he's not watching Cocomelon with his daughters, he is probably playing video games or making palliative care skits on TikTok.

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by Christian Sinclair (@ctsinclair)

This past few days, I came across two great opportunities that I wanted to share with a wider audience of hospice and palliative care clinicians.

First is the podcast and radio show, Radiolab. I've always appreciated the nuance and simplicity the creators can bring to complex issues. They are looking for voice memos from people who work in end-of-life care. They are also looking for patients and families who have been impacted by this work. All you have to do is record a 60-seconds or less voice memo and email it to wnycradiolab@gmail.com. Make sure to include your name, city, and your position or connection to the work. For the official ask see the graphic on this post or this link on Twitter. Share it with your teams!

Second is a project by Dr. Kayla Sheehan, who has written for Pallimed before. She is looking for hospice and palliative care physicians to share their origins stories on how they discovered this work. The answers are intended to be anonymous, so share as much as you feel comfortable. The link is here - https://dk9n3b78ef9.typeform.com/to/yCxDYZzR

For more Pallimed posts about the profession, click here.
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Christian Sinclair, MD, FAAHPM (@ctsinclair) is editor of Pallimed, a former hospice medical director and current outpatient palliative care physician at the University of Kansas Cancer Center. He has a experiential degree in Social Media and Health Care Marketing from the school of life.

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by SarahScott B. Dietz (@SDietzMD)

WARNING: THIS POST CONTAINS SIGNIFICANT SPOILERS FOR WANDAVISION.

In January, WandaVision released on Disney+, promising a weekly serial centered around two romatincally involved and familiar Marvel characters, Wanda Maximoff (aka Scarlet Witch) and Vision. The advertisements showed a black and white, vintage look to the show, and gave few clues as to exactly how it would tie in with the rest of the Marvel Cinematic Universe. Fans were intrigued for many reasons, chief among them being that the last time we saw Vision, he was dead. (CW-Superhero violence/death)

I dove into WandaVision like many fellow geeks: remote in hand, rewinding to scrutinize frames for clues as to what the "Big Story" was, and trying to solve the mystery before they revealed all. My Nick At Nite viewings of My Three Sons and Patty Duke provided ample cultural references for those first few episodes, and my Marvel lore was at least adequate. But where was it all headed?

Somewhere around the third or fourth episode, it hit me like a vibranium baseball bat. WandaVision is a study on grief, loss, and mourning, in layers and layers. I took to Twitter, as one does, noting that colleagues in palliative medicine might want to keep an eye on the show. A friend replied, asking why I would think so.

“It’s Wanda, it’s a giant grief bubble for her. She’s doing this out of grief,” I replied.

"I see it now,” he said, “It’s like superhero complicated grief.”

Complicated grief is what happens when the symptoms of loss and mourning do not begin to subside over time, instead worsening and becoming more intense. People struggling with complicated grief become caught up in their emotional turmoil, and the normal healing process is stalled. They dwell in a world colored by their loss, and may seek out items, locations, or sensations that make them feel proximity to the person they have lost.¹

Superhero complicated grief is, in other words, a perfect explanation for trapping an entire town of innocent people in order to build a perfect happy sitcom life with your deceased beloved.

While Wanda is the focus of the story, every character in this series is processing grief stemming from the events in Avengers: Infinity War and Avengers: Endgame, most specifically the “Snap” in which Thanos exterminated half of all life in the universe. Fifty percent of the population disintegrates in place, in front of their helpless loved ones, only to reappear in exactly the same place five years later. In the hospital in Episode 4, we get a window into the chaos, tension, and anxiety in the moments as people return after five years. Is the man shoving his way through the hallway desperate to call his wife because he is just returning, or is he hoping to hear her voice again for the first time in half a decade? A key character, Monica Rambeau is shown reappearing in the same room where she was with her mother 5 years earlier. Only now her mother is not there in the hosptial bed, and Monica finds out that her mother died in the 5 years she had been 'gone.'

In Episode 6, Hayward, a main antagonist, growls at Monica that it was so easy for the ones who vanished, they have no idea how hard it was, how much pain those left behind suffered. Even his pain and, yes, grief, is manifest in that short outburst. (The next bit about Monica not having the stomach to sit with her dying mother, though, that’s just an inexcusable snark.)

Monica’s loss is also heightened by having been disintegrated by the "Snap", and the isolation that she feels as a result. While Monica's mother may have died surrounded by loved ones, Monica was unable to be near her mother, to hold her hand or comfort her in her last moments. Monica has to find her own closure without the benefit of those final good-byes. For too many families, that scenario may hit close to home this year, as COVID-related visitation restrictions have limited our ability to be present with each other, even in times of great need.

In the midst of all the grief processing and mourning on screen, I appreciated the reference to Vision’s advance directives. I found it satisfying that going against his stated wishes not to be re-animated or used as a weapon was presented as proof of serious transgression. It does make me wonder what the contents of an Avenger’s advance directive would look like. Do they have a standard order form? Does it include circumstances in which resurrection would be acceptable?

WandaVision’s executive producer and head writer, Jac Shaeffer, has shared that they set out to build Wanda’s story arc on the stages of grief: denial, anger, bargaining, depression, and finally acceptance. (2) In retrospect, it’s easy to see that progression. Early in the season, Wanda is perky, the problems are light, and she is cheerfully in denial. We see her sink deep into depression, her kids worried about her. Is there anyone who has gone through the grieving process who did not sympathize on some level with the exploding Wanda, energy radiating out away from her in a messy, undirected eruption of frustration and angry sadness?

In the midst of a brutal tour of Wanda’s memories and many losses, it is Vision who crystalizes the essence of our journey: “What is grief, if not love persevering?” To lose someone we have lost does not erase the love we have felt for them, it simply moves the object of our love out of reach. Grief is the space left behind, and it is the work of loving someone who is gone.



One of the most moving moments of the show for me was in the very end, when Wanda and Vision were saying goodbye to their boys, and to each other. There was a genuine sweetness to it, tenderness in a scene that could easily be overwrought. It was the superhero version of a farewell I have seen in my practice, occurring in deeply religious families. It is a mix of emotion found in someone with a deeply held belief that they will surely see their beloved again, someday — certain faith that this will happen, blended with uncertainty of what exactly it might look like, and when. Sadness for the parting, even as they trust it will not be forever.

I am grateful for WandaVision and the conversations it has sparked about grief, loss, and trauma. Marvel being Marvel, we know that even though we have said our farewells this time, we will be able to see these characters again. I can only hope that it will be in a form that is as thought-provoking and enjoyable as WandaVision has been.

For more Pallimed posts about grief.
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For more Pallimed posts by Dr. Dietz click here.

SarahScott B. Dietz, MD practices palliative medicine in western Pennsylvania. She is a life-long geek of many fandoms, and lately has been learning both gardening and how to TikTok.

Reference

1 Shear MK. “Grief and mourning gone awry: pathway and course of complicated grief.” Dialogues Clin Neurosci. 2012 Jun;14(2):119-28.

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by Matthew Tyler (@PalliDad)

Fortunately for me, the pandemic has not interfered with my life-long hobby: video games. I finally got around to playing What Remains of Edith Finch, a game that received high praise for its short but engrossing Lovecraftian-esque narrative. What I experienced was a surprisingly insightful exploration of humanity’s relationship with death.

Coincidentally, I had just read BJ Miller’s opinion piece “What is Death?” in The New York Times and was struck by the parallels between it and What Remains. This game illustrates how one may “fold death into our lives,” and what can happen when we refuse to do so. As Dr. Miller says, “We really have only two choices: to share life with death or to be robbed by death.” What Remains doubles down on this sentiment by turning tragedy on its head and daring us to find beauty in every story (or video game), no matter how short.

What Remains centers on a young woman named Edith Finch who returns to her childhood home following the death of her mother. Now the last member of her family, Edith is searching for an explanation for the infamous Finch Family Curse. For reasons unknown, the tragedy of untimely death has stalked the Finch family for countless generations.

Over the course of the game, you explore the rooms of her deceased relatives in order to make sense of her family’s misfortune. Browsing journals and photographs of Edith’s deceased relatives momentarily transports you to the moment before each person’s death, allowing you to temporarily see the world through their eyes. A warning: these scenes are brief but intense and include death by suicide. While you do gain information about the circumstances of each family member’s death, many questions are left unanswered.

What I found more captivating than the mystery of the curse was the variety of ways the family copes with terrible loss. The game places particular focus on the narratives of Edith’s mother, Dawn, and Edith’s great-grandmother, Edie. Edie, now in her 90s, has lived in the family home since she and her late husband built it 80 years prior. Over the years she has lost her husband, five children, two grandchildren, and two great-grandchildren within the home. Instead of turning away from this massive heartache, Edie preserves each room as a memorial to celebrate the person that lived inside it. She refuses to repurpose these rooms for new family members, and instead tacks on new rooms to the house whenever needed. As a result, the house takes on a haphazard, other-worldly appearance as if it were a living organism.

Dawn, on the other hand, is terrified of her family’s past and eager to conceal it from her children. Rather than discuss death with her children, she seals off the memorialized rooms and refuses to talk about their relatives. However, as Dawn finds out and as we in palliative care know, it is impossible to insulate loved ones from loss forever. When Dawn dies, Edith is left to uncover her family’s history – and navigate the pain associated with what she finds – entirely on her own.

So often in palliative and hospice care we bemoan our culture’s aversion to the topic of death and dying. Experiencing What Remains and reading its overwhelmingly positive reviews gives me hope that the aversion may not be as strong as we think. On the contrary, it would seem there is a hunger to explore the existential in more ways than we realized -- even if some are slightly unconventional.

“If we lived forever, maybe we'd have time to understand things. But as it is, I think the best we can do is try to open our eyes. And appreciate how strange and brief all of this is.” --Edith Finch



What Remains of Edith Finch? is available to play on PlayStation, Xbox, and Windows (via Steam).



For more Pallimed posts on video games, click here. For more Pallimed posts by Dr. Tyler click here.


Matt Tyler is a palliative care doctor in Chicago. If he's not watching Cocomelon with his daughters, he is probably playing video games or making palliative care skits on TikTok.

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by Ben Skoch (@skochb)

I made some interesting observations during my first ever trip to the AAHPM National Assembly in Boston, almost a year ago. It seemed to me that I was not the only one favoring my phone screen over introducing myself to hundreds of new people. My new Twitter follower to friends IRL ratio (‘In Real Life,’ for those wondering) was about 25:1. I noticed people often trying to find seats in a lecture hall at least a few spaces away from others, to a point where some rooms looked like those old science problems involving the diffusion of a gas.



I wondered to myself how many people here are introverts like me? Some months after that conference, I decided to poll the #HPM Twitter family to see if I could get a sense of how many identify as introverts. While 72 responses may not seem like an overwhelming sample size, I couldn’t help but feel at least partially validated with three-quarters identifying as introverts. Does the field of Hospice and Palliative Medicine naturally attract introverted people?

For #hpm people, would you identify more as an introvert or an extrovert? RT and @ some #hpm friends so we can get more responses!

— Ben Skoch, DO, MBA (@skochb) August 30, 2018

It wasn’t until I read “Quiet: The Power of Introverts in a World That Can’t Stop Talking” by Susan Cain, that I discovered some potential explanations. At one point in the text she describes her interviews with Harvard Business School students who learn best in “learning teams” and describe socializing as “an extreme sport (47),” situations that would make any reserved person naturally uncomfortable. I recognized some of her sentiments seemed to overlap significantly with my years of medical training, and I couldn’t help but think that she was describing so much of my life. I sure did not use my first trip to AAHPM’s Annual Assembly (in Boston no less, just minutes from the entertainment enthusiasts that Cain describes) as a chance to socialize as much as physically possible.

But what really piqued my interest was later in the book when some parallels between the natural tendencies of introverts and the work required in the world of Hospice and Palliative Medicine started to become more apparent. A few examples:

Introverts might be wired to handle the emotional ups and downs of Palliative Medicine more naturally. How often have those in Hospice and Palliative Medicine heard, “That must be so hard,” or “Isn’t that so sad all of the time?” Cain describes an interview with Janice Dorn, MD PhD (Psychiatry and Neuroscience) who counsels people involved in the trade market. Dorn says “introverts…are more successful at regulating their feelings…they protect themselves better from the downside (158).” She suggests that this may be in large part due to the way we are wired, as extroverts are more excitable and are more likely to “find themselves in an emotional state we might call ‘buzz.’” So perhaps introverts are better biologically equipped to handle sad and tough conversations.

It’s an introvert’s natural tendency to let others talk. I am confident that one of the most important things I do for my patients is to listen as they tell their stories. By providing “therapeutic silence” and “active listening,” I offer them a chance to explore their emotions. This is how I build trust so that we can work together to make personalized decisions. In her book, Cain presents the findings of psychologists John Brebner and Chris Cooper, “who have shown that extroverts think less and act faster…introverts are ‘geared to inspect’ and extroverts are ‘geared to respond (166).” Many physicians find it difficult to simply sit and listen, as evidenced by a study from 2018 that showed a median time of 11 seconds before physicians interrupted their patients.1 Perhaps this is a system flaw. As students, we are continually encouraged to be more extroverted; then during residency, we are trained to ask specific questions and document succinctly to be as efficient as possible. By the time one becomes an attending physician, we unconsciously adhere to this learned sequence. Or perhaps some of us are just wired to listen longer and let others talk, and we simply need to find a niche where this is useful.

Maybe the most compelling connection between Quiet and Hospice and Palliative Medicine is when Cain describes how introverts might get the most out of life. “The secret to life is to put yourself in the right lighting…Use your natural powers – of persistence, concentration, insight, and sensitivity – to do work you love and work that matters (264).” When people who work in Hospice and Palliative Medicine are asked to describe their work, common answers are rewarding, satisfying, gratifying, etc. I think this is likely because many in Palliative Care are introverted and they have simply found the “right lighting” for their natural abilities: an unflappable personality in the face of a wide range of emotions, listening intently to their patients, and using persistence, concentration, insight, and sensitivity to help patients and families struggling with some of life’s greatest challenges.

We all have special gifts that make us unique, and it is up to us to figure out how to use those gifts to help others and make the world a better place. As Cain details well in Quiet, it may be that extroverts have an advantage in utilizing their gifts in our modern society. Maybe our culture inhibits some introverts from recognizing their strengths and talents until later in life when they discover pastimes, relationships, and work that enhance these traits. Perhaps the world needs introverts to flourish like those examples Cain highlights: Dr Seuss, Rosa Parks, JK Rowling, and many others. Once introverts find their “right lighting,” they can build a life that is fulfilling and do work that matters. Maybe they will even wind up in a field like Hospice and Palliative Medicine where there is a connection between the strengths of introverts and the nature of this sacred work. I think if you are an introvert looking for work that is abundantly rewarding and can be a natural fit for your God-given abilities, perhaps Hospice and Palliative Medicine is worth your consideration. It might be the dream job that gets you excited to start each day, even if you have a hard time showing it.

Ben Skoch, DO, MBA, is a Hospice and Palliative Medicine physician at the University of Kansas Medical Center. Outside of Family and Palliative Medicine, he enjoys most sports, black coffee, and most especially spending time with his wife and two adorable children.

(Links are Amazon Affiliate links which support Pallimed. Also, please shop at your local bookstore.)

References

1. “Quiet: The Power of Introverts in a World That Can’t Stop Talking” by Susan Cain

2. Ospina, NS et al. Eliciting the Patient’s Agenda- Secondary Analysis of Recorded Clinical Encounters. Journal of General Internal Medicine. January 2019; 34: 1: 36–40.

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by Christine Bridges

“I don’t think I could stand to be around that much death. All that sadness!” When I announced my career change and plan for a Hospice and Palliative Medicine (HPM) fellowship the reaction of most, in healthcare or not, was concern for my emotional wellbeing. Internally my initial response was: 1. Why do people think that death is reserved for HPM alone? and 2. Death and grief are all around, they are a part of life.

Perhaps it is my current vocation, but it seems that modern media agrees. Death and grief are showing up in unexpected formats. Most recently the new ‘dramedy’ on Showtime, ‘Kidding,’ starring a shockingly sedate Jim Carrey. In the pilot episode, we see our central character Mr. Pickles, a pseudo- Mr. Rogers, waiting to be interviewed on Conan Obrien’s talk show. We learn quickly that this famous man recently lost his son. The episode draws us into his life and the way his son’s death has ricocheted through his family. We see him turn to his work to cope with his grief. Mr. Pickles is planning a show where he will openly address his son’s death. Quickly the old anthems come, “People don’t want to hear about death.”



I imagine myself and my HPM colleagues nearly jumping from our chairs, arms waving, “But people do want to talk about death, they do!” We have learned this the hard way, stepping into complex family meetings and hearing that no one has talked about death or the dying process. Now at the very last inescapable moment, there it is, death on the doorstep. 10 years ago Holly Prigerson's research group published a study showing that earlier discussions around end-of-life care lead to lower rates of caregiver depression. When patients and families are surveyed about preferences regarding the outcomes they are seeking for the end of life they list ‘knowing a doctor is comfortable talking about the end of life,’ and ‘clear decision making, preparation for death.’ A decade later the average length of stay in hospice remains a minuscule 2 weeks. Fourteen days is a tiny window to get to know a patient, their family, their goals, and manage their most difficult symptoms. With that small time to prepare, families are confronted with death more suddenly than they expect.

This was the most commonly repeated experience in a recent spousal-loss support group that I attended. So many of the remarkable people who filled that room echoed each other’s frustrations that the medical community had not told or prepared them for death. At the end of life their own doctor seemed to indicate this outcome had been inevitable. The doctor knew Ms. Jones or Mr. Smith was dying, but the patient and family did not. The spouses mentioned the legal and practical concerns of managing shared assets, but they also mentioned the missed chance for one last vacation, or one last day at home together. Doctors can talk about death, or we can avoid the topic Death comes anyway, and it leaves grief behind as its last gift.

I have a slightly unique perspective, losing my father unexpectedly when I was 20 years old. The other day in lecture the organ and tissue donation organization shared about their work in our community. They showed a picture of the medal they give donor families. That same medal sits next to our brown leather family Bible because my father was also a tissue donor. I felt lost, for just a few breaths and it becomes clear that my work of grief may never be done. Even though we are healers, we as medical providers have all experienced loss. How does our past loss affect our future work? How do we carry our personal and professional losses with us and allow them to be transformed into healing? The opportunity exists for us to help our patients and family begin their journey with grief together, to start that difficult journey through grief hand in hand.

Mr. Pickles compares grief to losing an object that you can never find again. He sings about feelings, letting us know that there are no right or wrong emotions. He argues with producers who do not think children can handle talking about death as if children do not grieve. Perhaps parents, much like providers, can feel out of control, torn free of their moorings when the discussion turns to death. Just like a parent, we must help with the transition from death to grief. There are no shortcuts in grief. We are all grieving something, loss of freedom, or youth, or expectation, and often, missing the people we have lost. We in healthcare cannot use our work as a tool to avoid grief, but like Mr. Pickles, use our losses as a way to do better and give back to those around us. Spending a moment in the shoes of those actively grieving is humbling. It is in service to the goals of patients and their loved ones that we must talk about death.

As physicians, we fear causing harm by sharing ‘bad news.’ The idea that we could prevent grief, to keep it at bay by refusing to allow its presence in the same room as our precious patient, may be a dangerous one. If we listen to our patients, listen to the wisdom even in a TV show, we hear the truth: our patients want to know, and their families need to know that death is imminent. It is not always the patient’s death or family’s grief that we dread. We must recognize our own fear of grief, our sense of failure, our frustrations at being left with uncertainty. We as the medical community must conquer the fear of our perceived enemy: death. As my father often said, “We all leave this world sick enough to die.” It is a simple truth that we are all mortal. It is a complex challenge to acknowledge this in the practice of modern medicine.

I look forward to taking the journey with Mr. Pickles and his family. I will try to make death an old friend, and grief a teacher.

Christine Bridges, MD is a hospice and palliative medicine fellow at the University of Louisville Health Science Center. She enjoys baking and watching zombie movies with her husband.

Wright AA et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008 Oct 8; 300(14): 1665–1673.

Steinhauser KE, Christakis NA. Preparing for the End of Life: Preferences of Patients, Families, Physicians, and Other Care Providers. Journal of Pain and Symptom Management. Volume 22, Issue 3, September 2001, Pages 727-737.

Steinhauser KE, Clipp EC. In Search of a Good Death: Observations of Patients, Families, and Providers. Annals of Internal Medicine. 132(10):825-832

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By Shayna Rich and J. Maggio

The HBO show The Leftovers has a deceptively straightforward science fiction premise: What happens to people left behind after a Rapture-like event? The Rapture is an apocalyptic event prophesied in the New Testament where people chosen by God disappear into Heaven. In the show, roughly two percent of the world’s population--about 140 million people--mysteriously disappear in an instant. Unlike the popular Christian book and film series Left Behind, The Leftovers is agnostic to the cause of the sudden departure. Some characters believe it was the Christian Rapture, but other characters disagree.

The show never offers an explanation. By using the second-person narrative style, the show revels in the ambiguity of the departure. This ambiguity reflects the way the characters process the event itself.  Was it a scientific or a spiritual event? Why did their loved ones leave? Why did the remaining stay? What does it mean? Where did they go? Whereas pulpy fiction would dwell on that last question--where did they go--The Leftovers is brave enough to tackle the bigger issue: What does it mean? The series is about people trying to find meaning in their confusion, grief, and loss. It occasionally leaps into sci-fi tropes, but it never forgets its mission to examine a world filled with seemingly random and meaningless loss. Since the show is rooted in its desire to find meaning in the context of loss, the viewer is forced to grapple with the power of loss.  Given this theme, The Leftovers often struggles with the same question that we do in palliative care-- how do we help people cope with grief?

Every episode of The Leftovers focuses on one character and it shows how that person copes with loss, either past or anticipated, and struggles to find meaning. Characters ask “Why did this happen to me?” And much as it is for a dying patient, the answers vary. One character, the long-suffering Reverend Matt Jameson, compares himself to Job, a Biblical character who is continuously tested in his belief in God with numerous trials. Matt and other characters insist that God must have purpose in their suffering. Some lose faith or blame themselves. Some even join a cult. But all prefer the certainty of an explanation over the abyss of the unknown. For example, Matt Jameson talks to a man claiming--with some credibility--to be God. Matt wants answers! Yet he struggles to find meaning, even in his conversation with “God.” Likewise, in our work as palliative clinicians, we see the search for meaning every day. Patients seeking a reason for why they were diagnosed with a serious or terminal illness may struggle with their spirituality and their belief in God. Patients often blame themselves if they cannot find a definitive cause of their illness. They may ask us if this happened because of their diet, their smoking habits, or their genes. Patients want a reason, a story to determine a meaning for their suffering.  Regardless of the story, any reason is always more satisfying than not knowing why you or a loved one is dying.

Like the narratives patients often impose upon their illness, The Leftovers is about the stories people tell to make sense of loss. For most people, it is unsatisfying to view the world as a set of unconnected, random events, and evidence shows that people process the world with narrative. The show focuses on how people choose which story to tell, how they treat others’ stories, and our willingness to impose a story on our lives even if it conflicts with logic, experience, or life events. Nora, a character whose husband and two children all disappeared, struggles with the feeling that she does not want to invent a story for what happened unless it is scientifically accurate. The finale of The Leftovers ends with Nora stating “I knew that if I told you what happened that you would never believe me,” followed by another character responding “I believe you.” Her willingness to accept that others can believe her story without proof, represents her growth over the course of the show. Similarly, in palliative care, much of what we do is provide a sounding board for stories. We listen to patients and family members tell stories of how they were told about their diagnosis, what treatment has been like, and what they have been going through in hospitalization. We encourage our patients and families to do life review and make meaning from their lives by telling stories. And much of the support we provide takes the form of listening and believing their stories. The Leftovers emphasizes the value of that support, especially when the truth is unclear or ambiguous.

Cultural critics examining The Leftovers grapple with this ambiguity of truth in their reviews. The show also gives critics permission to explore their own experiences of loss.  Even normally stoic critics like Alan Sepinwall open up about their personal lives and how the show shaped their personal grief. Critic Matt Zoller Seitz’s review of a season 2 episode discussed how The Leftovers connected to his feelings of loss as a widower. Seitz's article even inspired the show’s co-creator Damon Lindelof to write a subsequent episode dealing with grief, loss, and belief in God.  Most beautifully, critic Mo Ryan's article "'The Leftovers,’ Life, Death, Einstein and Time Travel" connects The Leftovers with her complex feelings toward her dying parents, especially her mother’s death from Huntington’s Disease. It has been shared through social media, causing many tears.

The Leftovers not only echoes the concerns of our patients and their caregivers, it also actively helps viewers process their own losses. It is a profound discussion of loss and pure grief. As with much of our work in palliative care, though, it is leavened with humor. The Leftovers is the type of show where Matt Jameson, dying of cancer, argues about suffering with a character calling himself “God,” but it is also a show where he watches "God" be eaten by a lion. Like most art works asking "big" questions, The Leftovers revels in both the wonders and terrors of the mysteries of life.

Shayna Rich, MD, PhD is a doctor who just completed her palliative medicine fellowship and is starting work at Haven Hospice in Lake City, FL. J. Maggio, JD, PhD is her husband, political science professor, and a passionate aficionado of the philosophy of pop culture.

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by Lyle Fettig

When debriefing after a difficult communication encounter led by a fellow or resident, I’ll often start by asking the trainee, “how do you think it went?” There are times when I thought the encounter went very well, yet the trainee leaves the room with a worried look. Perhaps the trainee clearly explained the medical facts, demonstrated ample empathy, and carefully talked about the next steps, so I’ll be a bit surprised when the trainee says, “It went horrible.” I’ll ask why, and I’ll get a bemused look in response. “Because I made the patient cry,” the trainee might say. Usually, when this happens, the trainee knows that it was the serious news that made the patient cry: A change in condition, a revelation about prognosis, etc. Deliberate reflection on skillful communication requires some understanding that while patients may respond differently to various communication techniques, we are ultimately not responsible for the patient’s emotional response to serious information. Even if giving the information was the ethical and pragmatic way to proceed, the physician is at risk for experiencing strong emotions that mirror those of the patient’s. The response of the patient and the physician’s experience of observing the response might make some second guess whether they have approached the conversation skillfully, even when they have.

“Attending: Medicine, Mindfulness, and Humanity” by Dr. Ronald Epstein, professor of family medicine and palliative care at the University of Rochester, is all about how physicians cognitively and emotionally process not only moments like this one, but also the more routine moment to moment emotional roller coaster of the practice of medicine. It’s a practice that is rich with cognitive complexity but always mingling with emotional intensity: Anxiety over making correct diagnoses or missing something. Frustration about electronic medical record systems. Helplessness when faced with symptoms we cannot explain, or sometimes cannot alleviate adequately.

We all experience these thoughts and emotions in our own way, and all develop methods (sometimes adaptive, sometimes not so adaptive) to respond to our inner experience. Dr. Epstein blends a mix of his own experience (which he describes with vulnerable humility), the experience of colleagues, and a description of some of his own research (example here) as well as related research in neuroscience, decision-science, and resiliency. The result is a readable, thought-provoking, useful, and comforting book that I’d recommend to any physician, or for that matter, any health care professional.

The book starts with a chapter on mindfulness in the practice of medicine and then a chapter on the related concept of “Attending” which describes our human ability to attend to a limited number of stimuli at once, leading to inattentional blindness (which none of us are immune to), and why this contributes to the challenges of medical diagnosis and management as well as why it may be so hard for us to recognize the experience of the patient at times. Even for people who are highly empathic, there’s still a risk of losing sight of the other person’s perspective when you’re lost in clinical reasoning, etc. He then further expands the discussion to the topic of uncertainty, and how we in medicine are certainty junkies, which brings with it a risk for crowding out curiosity. And that has negative implications.

Palliative care clinicians will especially appreciate his reflections on the concept of “presence” or “bonded resonance” in which two people are in touch and in tune with each other. Quoting philosopher Ralph Harper, he talks about the important role of presence in “boundary situations,” times of vulnerability and uncertainty. Philosophers and scientists alike have explored this resonance, and he describes two seemingly competing, but perhaps complementary, theories for how this happens. The first is “theory of mind,” where it’s thought that we theorize what might be going on in other’s minds, and might occasionally verify in communication if we understand their thoughts and feelings. The other theory is “embodied simulation” which posits that we “relive in our own bodies and minds the actions and presumed intentions of the other. He states that the current body of research comes to an intuitive conclusion: our cognitive and emotional lives are shared psychologically and neurobiologically, and boundaries between those sharing in presence are blurred.

This is a wonderment, and it reframes the feeling of dread that often goes along with breaking bad news. Yes, it's the information that makes the patient cry. It's information that the physician shares from his or her own mind to the patient's, who reciprocates with sharing emotion back to the physician. Although the physician has not "caused" the bad news, perhaps the feeling of responsibility for the patient's emotions stems from the blurring of boundaries?

I eagerly read the chapters on “Responding to Suffering” and “The Shaky State of Compassion” and agree with his supposition that while training in empathy is important, it only goes so far and there’s a real risk of emotional contagion- taking on the patient’s distress. Describing research about compassion, he describes “exquisite empathy” or compassionate action that may relieve the patient’s suffering and in concert, release the emotional tension that the clinician experiences.  (I would include plans that come about after careful goals of care discussions as "compassionate actions", and even the process itself, that involves a lot of sitting with patients and grappling.) The good news is that there is growing data that compassion can be cultivated through practices such as loving-kindness meditation.

The book closes with chapters on resiliency in both the individual clinician and in the healthcare system with compassionate suggestions for his colleagues that don’t aim to “fix” the problems of our broken healthcare system, but do aim to help us build capacity to respond to it. Everything he writes about complements, integrates with, and bolsters important communication skills commonly taught by palliative care clinicians.

You’ll have to read the book to see some of his suggestions, but I’ll leave this review on a personal note. I personally am not immune to burnout and anxiety, as well as occasional dysthymia and rarely, depression. I remember when I was just starting, our team’s chaplain asked me to notice my breathing in the middle of a visit with a very anxious man who was in pain as well. To my surprise, I was holding my breath, perhaps an embodied simulation of what I witnessed. I think of the multitude of simulations we process each day, with patients, their families…and with colleagues, and this is a timely book for our field and for medicine in general.

I think this book offers a framework to consider how we might become more resilient, yet I recognize that someone out there might be reading this right now in the midst of a personal crisis. If that's the case, I could imagine that hope might not come as easily as you would want.

So, I have one last heartfelt note for everyone, but especially for my physician colleagues. It comes from the experience in the past couple of years of losing a physician colleague to suicide.

Recent research indicates that burnout in HPM physicians is something we should pay attention to carefully.  It's an issue in medicine more broadly. Physicians have higher rates of burnout, depressive symptoms, and suicide risk than the general population. An estimated 300–400 physicians die by suicide in the U.S. per year.  Don't wait until a crisis point, it's ok to think of it as a quality of life issue!  Seek help if you are suffering. You may feel shame, but that's part of having depression and not because of who you are.

There are likely resources available to you locally at your own institution or in your community. If you are in crisis, you can also call the National Suicide Prevention Lifeline at 1-800-273-8255. There is no shame at all in reaching out- we need you in this world.

I'll leave everyone with a loving-kindness meditation:
May you be filled with loving kindness...
May you be held in loving kindness...
May you feel my love now...
May you accept yourself just as you are...
May you be happy...
May you know the natural joy of being alive...

Dr. Lyle Fettig is an Assistant Professor of Clinical Medicine in the Department of Medicine/Division of General Internal Medicine and Geriatrics. Dr. Fettig directs the IUSM Palliative Medicine Fellowship and works clinically with the Eskenazi Health Palliative Care Program.

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by Vivian Lam

“Life changes fast.
Life changes in the instant.
You sit down to dinner and life as you know it ends. 
The question of self-pity.”

When does grief become “self-pity”? What is the “proper” way to grieve?

Joan Didion begins writing what would become The Year of Magical Thinking a few days after her husband, John Dunne, dies from a heart attack. Coupled with the mounting health crises of her daughter, Quintana, Didion’s world is thrown out of joint. In the ongoing aftermath of these tragedies, Didion, acclaimed novelist and literary journalist, copes by doing what she has done all her life—write. But this time, her husband is no longer the patient proofreader working beside her, but a ghostly absence she can’t stop turning back to. She tests the threshold where “normal” grief crosses into the “pathological,” picks apart medical and societal indifference towards the patient and the survivor, scrutinizes a vast scientific and literary trove on death and mourning. But in spite of her clinical self-awareness and the terse detachment of her reporting, she can’t break out of an irrational “magical thinking” that sends her down a spiral of uncertainty and regret.

What makes The Year of Magical Thinking a quintessential work in the bereavement canon is not just her analytical prowess, but the strength she finds in vulnerability. What results from her attempts to “come to terms” and “handle things” is an extended elegy to grief and change. In the waves of raw despair that belie how lost and isolated death has left her, Didion demonstrates a resilience that, though failing to triumph, offers illuminating insights on the experience of grief and the insufficiency of our traditional views towards the process of grieving.

We might even find it wrong to consider grief a process in the first place; for Didion, grief comes as a state of being.
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In an interview with New York Magazine, Didion states that one of the main reasons why she wrote this account was to “bring death close.” In direct opposition to the invisibility of death in Western society, Didion conducts a form of investigative reporting on grief—the primary case being herself. With repetitive and desperate precision, she reconstructs and deconstructs the moments leading up to her husband slumping onto the dinner table, and is frustrated by her cloudy memory of following the ambulance only to return home alone with a bag of bloodied clothes. She pores over the apartment doormen time log for the night of December 30, and wonders “Was that ever a heartbeat or was it just electricity” (81)? She jumps back and forth in time, placing all events relative to her husband’s death with an unshakable guilt and unanswerable “what if’s.”

Directly opposing her attempts to gather information and regain control of the situation, Didion is plagued by an “irrational” disengagement with reality. “Magical thinking” refers to a belief that an action or object can influence or change the outcome of an otherwise unrelated course of events. Some might call it “superstitious,” and others might call it “prayer.” For Didion, magical thinking comprises her illogical belief that her husband was “coming back,” and that she would yet be able to save him and “reverse the narrative” (35). She balks at the hospital’s request to donate his eyes and at her own reluctance to donate his shoes, for “[h]ow could he come back if they took his organs, how could he come back if he had no shoes" (41)? She links her resistance against putting her daughter on a trach by “the same fund of superstition” that “she could be fine in the morning, ready to eat, talk, go home” (125).

Compounding these frustrations is what she calls “the vortex effect” (107)—a kind of PTSD triggered by familiar details that send her time travelling back to when her daughter was three years old, to when she and her husband went to dinner at Morton’s every week. “I cannot count the days on which I found myself driving abruptly blinded by tears. The Santa Ana was back. The jacaranda was back” (107). She repeatedly berates herself for being so easily sideswiped by these memories, to not be able to even “get as far as Rite Aid” without being swept in another deluge of regret (121).

So does Didion note the difference between grief and mourning:

“Until now I had been able only to grieve…Grief was passive. Grief happened. Mourning, the act of dealing with grief, required attention. Until now there had been every urgent reason to obliterate any attention that might otherwise have been paid, banish the thought, bring fresh adrenaline to bear on the crisis of the day. I had passed an entire season during which the only words I allowed myself to truly hear were recorded: Wel-come to U-C–L-A.” (143).

She condenses grief into textual form, expressing a fragmentation of thought and experience of reality that exposes a vulnerability she struggles to come to terms with.
Facing these mounting crises, Didion falls back to what she “had been trained since childhood” to do: “read, learn, work it up, go to the literature. Information was control” (44). She references a robust range of sources on death and grief from history and sociology (e.g., Sherwin Nuland’s How We Die, Phillipe Aries’ Western Attitudes Towards Death), psychology (e.g., Freud’s “Mourning and Melancholia”), classic literature (e.g., CS Lewis’ A Grief Observed, Thomas Mann’s The Magic Mountain), poetry (e.g., Auden’s “Funeral Blues”), “professional literature” (e.g., the Harvard Child Bereavement Study, The Merck Manual), and a number of other medical papers. Emily Post’s 1922 book of etiquette, far from being outdated, resonated with her because she “wrote in a world in which mourning was still recognized, allowed and not hidden from view” (57). She was taken by its practicality, as opposed to vague prognostications of abnormality.

Of particular salience was John Murray’s Intensive Care: A Doctor’s Journal, from which she “learned much that proved useful in…[her] daily dealing with the ICU doctors…” (102). So does she know that she has “made headway when a doctor to whom you had made one or another suggested presented, a day later, the plan as his own” (103). For the duration of her daughter’s hospitalization and transfer, Didion expresses a distinct distrust and dissatisfaction with the medical professionals she dealt with. In one particular instance, she argues with a doctor on the day they decided to do a tracheostomy for her daughter. She questions their rationale (“The rule at Duke [for intubation period] was also a week,” “It’s already on schedule,” “Everyone on the neuro units got a trach”), balks at their assumption that the basis for her resistance was the scar (“They were doctors…I was not. Ergo, any concerns I had must be cosmetic, frivolous”), that she didn’t notice that her daughter was taken off the EEG (“Maybe I didn’t notice that? My only child? My unconscious child?”) (123-125). She criticizes the vaguely placating status reports of the medical personnel with a kind of incredulous, dark humor:
“...I was told by a physician's assistant that after his weekend absence he had come in that morning to find Quintana's condition 'encouraging.' I asked what exactly had encouraged him about her condition when he came in that morning. 'She was still alive,' the physician's assistant said” (66).

What does “encouraging” mean? Does “leaving the table” in uncertain condition imply improvement from “not sure at all she would leave the table”? The “gilded-boy story,” used as a memory and comprehension test, “seemed to represent, in its utter impenetrability and apparent disregard for the sensitivity of the patient, the entire situation with which [she] was faced” (105). The condescension and indifference she faces in her attempt to stay informed and participate in her daughter’s care, leads her to so deep an isolation that, in a symbolic assertion of her competence, “it did not immediately occur to [her] that for the mother of a patient to show up at the hospital wearing blue cotton scrubs could only be viewed as a suspicious violation of boundaries” (105).

It is not until she had read the autopsy report that she “[began] to believe what [she] had been repeatedly told: nothing [they] had done or not done had either caused or could have prevented his death” (206). This didn’t mean that she had finally “overcome” her grief, or could now walk without the chains of memory. She still continues to reverse time and get lost in a vortex of memories. But now, instead of “trying to substitute an alternate real” she was “trying to reconstruct the collision, the collapse of the dead star” (183). She, like other survivors, still continues to “look back and see omens” and continue “[l]iving by symbols” because of the nagging feeling that she has not “sufficiently appreciated” something (152). It is the tragedy of knowing that we do not have the power to confidently say “You’re safe. I’m here” (219).

What Didion comes to realize is the insufficiency of words to grant meaning to a senseless event. The safeguard of literature can never sufficiently prepare her for the experience of grief. Nor can the assurances of her doctors ever remedy the helplessness she faces with death. Writing cannot provide sufficient catharsis to erase the “look of extreme vulnerability, nakedness, [and] openness” that mark people who have lost someone, and “think themselves invisible” (74-75). She comes to realize that the words that haunt her (“And then—gone,” “You’re safe, I’m here,” “For once in your life just let it go”) form a kind of tragic poetry that cannot be analyzed. As Didion states, the difference between “grief as we imagine it and grief as it is” lies in “the unending absence that follows, the void, the very opposite of meaning, the relentless succession of moments during which we will confront the experience of meaninglessness itself” (189). Words cannot fill the void.

And yet, a year and three days after starting this account, she realizes that she does not want to finish it. “The craziness is receding but no clarity is taking its place. I look for resolution and find none” (224). We refuse to “[l]et them become the photograph on the table…the name on the trust accounts” and “keep them dead” (224). We are told to let go in hopes that the ghosts will stop haunting us, but to do this feels more like betrayal.
Didion does not come to a conclusion. She finds no positive affirmation or overarching meaning. We are left with an awareness of the “ordinary instants” that pass uneventfully in our lives as we wait for the world to suddenly shift beneath our feet. Grief shouldn’t have to become self-pity. In the isolation of the void, where we must undo old habits and swallow the mundane discoveries we save for one listening ear, we are left only with ourselves (195). But even in a world where the divide between life and death has been pushed offstage, who are we to banish grief simply because it reminds us of the finitude of our own ordinary days? We can still support each other in the face of that void—to simply “bake a ham,” “drop it by the house,” and “go to the funeral” in solidarity (61). We must open ourselves to grief, if only to remind ourselves that we are never alone.

What Didion has built is a testament to the fragility of our lives, and to our resilience to continue on. We continue to carry these ghosts with us, and we are transformed by keeping them close to our hearts. "Leis go brown, tectonic plates shift, deep currents move, islands vanish, rooms get forgotten” (227). Life changes in an instant. The world moves on.

But memory never has to fade.

For further reading:
-Blue Nights – What could be thought of as Didion’s sequel to The Year of Magical Thinking, recounting the death of her daughter, Quintana.
-The stage adaptation of The Year of Magical Thinking
-Interview with the “young writer” she refuses to talk to on page 168
-Interview with Katie Couric on the memoir and the grieving process

Vivian Lam is a student at Stanford University striving to contribute tangibly to the fields of end of life and palliative care, and the medical humanities. She enjoys running long distance and warbling the same songs in the shower all year long.

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by Amy Clarkson

(Margaret Edson, author of Wit, will be speaking at the 2016 Palliative Care in Oncology Symposium, so we are sharing this review from our Arts and Humanities site, originally published in 2009. - Ed.)

There are many movies out there with palliative themes, as we can attest to with our top 10 movie post, which garnered much comments. One of my all time favorites, also made number 1 on our top 10 palliative-themed movies list; Wit.

I first saw this movie in medical school. In fact, according to the IMDb, this movie is known for being shown at medical schools as an example of how not to practice medicine. Also, the plot deals with dying, so it's all the more relevant to those of us who care for dying patients.

The plot is this: An English lit professor, known for her high expectations and little compassion in the classroom is diagnosed with ovarian cancer. The movie shows her experiences from diagnosis to death. Her last weeks are spent in the hospital, undergoing rigorous treatment. She is alone, except for the nurses, attending and fellow who treat her. Through her reflections and memories there is a definite parallel between her heartless days teaching and the heartless medical system she is now in.

The movie is based on a play by Margaret Edson and this monologue, play-like background is the inspiration for the screenplay, making it unique. The soundtrack is simple with only 4 pieces listed. My favorite piece is "Speigel im speigel" or 'Mirror in a mirror' by Arvo Part. It is played often in the movie, the simplicity of the cello and piano is also melancholy, leaving the viewer with the feeling of being alone, just as the main character is.

I love this movie not just for it's ability to pierce me with its sad realities of the medical world, but also for it's subtle sub theme about death. All through out the movie we are bombarded with a certain text from a John Donne's Holy Sonnet 10. The main character was a John Donne expert and specifically recalls the punctuation differences pointed out at the end of this poem by her mentor.

The last line of the sonnet entitled "Death be not proud" is "And death shall be no more, Death thou shalt die." The version our main character had found was different "And Death shall be no more; Death thou shalt die!"

Here is the discussion with her mentor on the punctuation differences, talking about the version with the comma: "Nothing but a breath, a comma separates life from life everlasting. Very simple, really. With the original punctuation restored Death is no longer something to act out on a stage with exclamation marks. It is a comma. A pause. In this way, the uncompromising way one learns something from the poem, wouldn't you say? Life, death, soul, God, past present. Not insuperable barriers. Not semi-colons. Just a comma. "

If only the main character's death could have been so simple. Yet of the many ways death is portrayed in films, her portrayal is haunting. No one should have to die like this, without dignity and respect (ignoring her DNR)...alone in a hospital. Yet it is haunting, because of how real this type of death is. It is the antitheses of a palliative care death.

I've included a clip of our main character (Emma Thompson) thinking out loud. It's a lovely introspection of what's she's dealing with. Another clip has been taken down from YouTube, but when originally posted, it is a beautiful moment when our character actually gets her one and only visitor, her old hard-nosed mentor. The simplicity of human connection in the clip, with the Arvo Part soundtrack accompanying, makes me tear up every time.
I'd also suggest reading John Donne's Holy Sonnet 10 "Death be not proud" (This version uses a semi-colon and no exclamation!)

Dr. Amy Clarkson is a hospice and palliative care doctor in Pratt, KS, and former co-editor of the Pallimed: Arts and Humanities Site.

Image Credit: Still Image from Wit

If you are interested in writing reviews for old or new books and films, please check out our Pallimed Opportunities page. - Ed.