Tweet

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.
For more Pallimed posts about culture and media.
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.

Tweet

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.
For more Pallimed posts about culture and media.
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.

Tweet

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.
For more Pallimed posts on video games, 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.

Tweet

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.

Tweet

This could be my ICU, where I have spent many hours (daylight and otherwise) in front of those plate glass windows, both as a resident making frantic adjustments to drips and vent settings, and as a palliator working to be the only non-frantic entity in the room. Her description of the physical setting makes me catch my breath: what else did the game designers capture? Jenn Frank, the reviewer of the game, goes on:
This stops me in my tracks. What she describes is likely immediately familiar to all of us working in this field: the false hope of “success”, the fatigue, the fear. The creator Ryan Green (@RyanGreen8) describes the game as primarily about hope, something that seems so slippery to me in the ICU. I start thinking about the audience for this game. It has always seemed to me that the caregiver experience in the ICU must be excruciating regardless of the outcome; who would want to relive that? 

But then it occurs to me that perhaps the real value of That Dragon, Cancer is not for those who have survived the dragon, but those who have yet to face it. Or those who have just learned of the existence of the dragon in their own life. If you could prepare yourself for the hardest thing you will ever go through, if you could practice it by experiencing a fraction of it ahead of time, would you want to? Would it help?


A few weeks ago, I sat in the conference room of our ICU, across from a family whose mother was dying in the room next door. They were weighing whether to continue aggressive treatment or to withdraw life support and allow a natural death. The patient’s daughter and DPOA said tearfully “I think I know what my mother would want, but I’ve never had to make this kind of decision before. It’s not like you get to practice these things.”

In that moment, I couldn’t help but think of the video game, of the artificial ICU in the game and the emotions it was able to evoke in one who had experienced the real thing. And I couldn’t help but think, what if this family had practiced this hardest thing before? Would it have helped? I don’t know the answer, but it has shown me that perhaps interpersonal dynamics are more translatable to a virtual reality than I had supposed. What other digital tools might be out there waiting for us?



This post is part of the Arts and Humanities section of Pallimed covering all types of media.  Click on the logo above to experience great writing on the intersection of culture and medicine.