Using Augmented Reality to Prevent or Reduce PTSD Associated with Cancer Treatment
Content Warning: This article discusses the diagnosis and treatment of cancer and its effects on the psyche. It also discusses the treatment and pain management related to severe burns.
I’ve not been shy about my personal experience, my cancer diagnosis, and how it has affected my life. I feel that by being vulnerable and speaking truthfully about my experience, I can help others navigate the same or similar waters. Simply stated, you are not alone. I hope that the result of this writing will inspire folks in the digital healthcare space to consider spatial computing as a means of preventing trauma related to a cancer diagnosis or at the very least, ease the arduous journey through treatment.
Walking into the infusion center of my Oncologist’s office to get a standard blood draw is traumatic. I feel like I need to be dragged in kicking and screaming like a toddler throwing a tantrum. The feeling is visceral. I’m alone, but I wish my mother were there to pull me in or even better, carry me. No one knows this. No one can see fear on my face. It’s all inside. I gut it out. I smile through it. The sight of the beige walls and pastel splotched furniture. The smell of saline and antibacterial solution that’s used. The sound of the paper tearing that protects the bandage, or the beeping of the infusion machines. All of it triggers fear and anxiety that’s difficult to describe. I’m feeling it now as I write this. It’s a queasiness between my heart and stomach and a piercing headache behind my left eye that begins to build. A dagger in my shoulder blade. Is this PTSD? I don’t know, but it’s awful.
I’ve had 55 cycles of chemotherapy to treat and maintain Stage IV Non Small-Cell Lung Cancer. That’s for this stage. I had six cycles plus surgery to remove the upper lobe of my right lung during the Stage 1B phase. When same cancer recurs, it’s automatically Stage IV. It’s aggressive. For me, inoperable as well. My only choice was chemo. A cocktail of targeted drugs that left me feeling inflamed, exhausted, and for lack of a better word, “gross.” It’s poison, after all. Having chemo means that you also have to monitor your immune system and other bodily functions regularly. Blood draws every week, and injections of white count/bone marrow boosters (Neulasta) are part of the process. While the oncology nurses and phlebotomists are absolutely amazing, it’s the opposite of fun. I was told that this was my “new normal,” but it was anything but normal. The trauma is real.
I’m not alone. There’s a new understanding of trauma and traumatic experiences related to a cancer diagnosis and its treatment. As PTSD is typically associated with a traumatic stressor like a life-threatening occurrence, its association with a life-threatening disease diagnosis and treatment is understandable. According to a 2017 study by the National Institute of Health, “evidence suggests that a substantial proportion of people with cancer might experience their diagnosis and treatment as traumatic” based on the DSM-IV-TR PTSD diagnosis criteria. 50–60% of respondents with breast cancer endorsed a threat to their life or physical integrity and fear, helplessness, or horror; both criteria for a PTSD diagnosis. 57% of lung cancer patients endorsed the DSM-5 diagnostic criteria for PTSD. This isn’t good.
Can these numbers be reduced? So much effort is put on the treatment of PTSD and anxiety related to a cancer diagnosis and treatment. My question is, can it be prevented? Can the perception of treatment be changed? Can a reframing of your experience and environment make better memories and provide comfort?
Graphic designer Marsha Lynn Hammond developed one of my favorite examples of an effort to change the chemo experience. Marsha Lynn, a cancer survivor, created a Kickstarter and subsequent business to design and sell chemo decals that can be applied directly to the IV bag during treatment. She calls it Drhemo Therapy. These labels are designed to “reframe the experience of chemotherapy when applied to infusion IV bags.” They are classic apothecary designed labels with the words “Miracle Serum,” “Elixir for the Restoration of Hope,” ‘Vitality,” and my favorite “Love and Light.” Miracles, Hope, Vitality, Love & Light. Wonderful! Reframing the chemo experience is an incredible goal.
I encourage you to read the Dhremo testimonials. Here are some of my favorites:
“Cancer isn’t just a physical journey. It is an all-encompassing mind, body and spirit journey. Dhremo Decals empower you and all those around you in the infusion room.” — DEBBIE T., CANCER SURVIVOR
“I just want you to know that my daughter has had two chemo treatments and has used your decals both times. It was wonderful! She kept saying ‘I feel love and light moving all through my body.’ It sure was a gift to be with her using Dhremo!” — SARALA G. , CARETAKER & MOM, VICTORIA, BC
“I know that Dhremo Decals will help ease the minds and souls of the many who will undergo chemotherapy. By literally “reframing“ it in a different and empowering light, you will help with the healing of so many. In my 20 years as an Oncologist, I have not seen anything like this.” — R. DONEGAN, MD, MEDICAL ONCOLOGIST, GREATER BALTIMORE MEDICAL CENTER
This simple design change to the IV bag labels has had a positive effect. Patients see them, and it helps change their perspective about what they are enduring. A small thing can make a big difference.
The young-adult cancer non-profit Stupid Cancer also works to reframe the cancer experience. They do it by transforming the language around a cancer diagnosis through their support material, events, social media, and merchandise. They offer a “Cancer Card” that looks like a credit card that says, “If you’ve got it, play it.” Stupid Cancer’s primary message is that you are not alone. I believe reframing is critical to the mental health of cancer survivors.
Last year at the Portland Design Reality Immersed Conference, I saw a talk by Frances Ayalasomayajula about the work that HP has done with supporting VR projects related to healthcare and specifically pain management. The featured experience was called “COOL!“ by VR Healthcare developer Firsthand Technologies. It was first created by psychologist Hunter Hoffman at HITLab out of the University of Washington as “SnowWorld” and was designed to help with trauma and pain management associated with severe burns. Dressing changes can be especially traumatic to burn victims. Not only is it excruciating, but you are very likely going to see your injuries when the bandaged are undressed.
The patient puts on a VR headset and is taken to COOL!. A cold, snowy place where you can play with otters and (I think) penguins as you fly through the lush frozen landscape. You can throw snowballs at nervy flame looking artifacts. The experience is meant to distract and instill the feeling of a cold, cool, calm.
The research associated with this experience states that it reduces the need for opioid pain relievers. “Patients playing the game during wound-care sessions reported up to 50-percent less pain than those attempting other means to distract patients from pain — like music, or non-VR video game.” (Study: VR twice as effective as morphine at treating pain — The NextWeb 2017.)
The technology has been in use here in Portland, OR at Providence Health & Services to help with pain management and physical therapy. They say that their VR experiences allow the patient to concentrate on something other than their pain. It rewards them for being calm and slowing down. Howard Rose of FirstHand calls it “virtual immunotherapy.”
“We take that person to an experience for a while that they may not have had,” says Dr. Shorin Nemeth, the medical director for oncology palliative care and comprehensive pain services at Providence. “It shows them that they can focus, or their brain can focus on something other than that suffering. Sometimes just those moments are powerful enough to help that person understand that they do have the ability to get out of pain.”
“Scientific evidence that VR pain treatment works is emerging as well. A 2018 study in the International Journal of Virtual Reality indicated an average of a 66 percent reduction in pain during the VR session and a 45 percent reduction in pain immediately after the session for all 10 participants. At Providence, Nemeth’s study using the technology showed a 30 percent reduction in pain, and about a 20 percent reduction in opioid use.”
If spatial computing can be used to help reduce physical pain, can it be used to help prevent emotional pain?
When you go to get an infusion, you walk into a room that’s a shade of peach or white filled with chairs, machines, a nurses station and little else. A nurse helps you find a vacant chair. Many times it’s crowded. You’re lined up within a couple of feet of other patients in various states of illness. They are gaunt and depleted of vitality. They look like you. The room is set up for efficiency first and comfort second. The nurses are amazing. They move from one patient to the next, inserting IVs, drawing blood, changing bags of chemo. There are machines and tubes and wires all connected to you. The chairs are not too uncomfortable. They are typically beige vinyl recliners that are elevated a bit for easier access your veins or infusion port. An infusion can last hours. If you’re lucky, there’s a view or a little room between you and your neighbor. You bring a book, your iPad, your knitting. Podcasts. Most of the time, you’re alone. Sometimes it’s easier that way. It’s dreadfully dull and a little claustrophobic. You can’t help overhearing conversations — people in different stages of treatment or diagnosis. There’s a tremor of fear that vibrates through the room.
You look around. You see your feet in recline, medical carts, your infusion machine — frequently beeping. You see busy nurses moving back and forth. A counter with a plant on it or a bowl of candy. And fellow patients. The walls may have a painting or some other non-offensive piece of art. The people that design these places mean well. They know that they have to facilitate a spectrum of patients and ages. It’s not a place for entertainment or experimentation of design. Newer or larger facilities might have a lounge area with modern furniture for visitors. Or board games. You spend a lot of time here. The experience is a chore. You can’t relax. You try to make the best of it, but you endure it.
Then you get sick from the side-effects. And you have to go back. Again and again. You dread it immediately.
The concept is simple. Imagine an application that digitally augments the view of your physical environment to provide a more pleasant and calming experience while you endure cancer treatment. Take what we know about shifting people’s perspective related to pain management with VR and extend it to mixed reality to prevent PTSD and anxiety. Use the promise of augmented reality and Magic Leap to change a patients perspective. Shift it from more negative to more positive.
Perhaps we use Dhremo’s labels as an example. Maybe instead of an IV Bag label that says “Love and Light,” we make the bag itself emit light with love– a radiant light that reinforces the positivity that you are taking care of yourself. You are doing the right thing. It’s not poison; it’s love and the promise of healing. You can play with the light. It dances on your knees and flits about the room. Then perhaps you look at your feet in recline, and a butterfly suddenly lands on your toes. You wiggle them, and it flutters away. There is a babbling brook between you and your neighbor. They might see it too. You smile. You turn your head, and a ball of beautiful light appears in front of you, encouraging you to breathe deeply and possibly perform simple seated tai chi movement. You hear calming sounds come from different directions. It’s not distracting, it soothes.
Since you are primarily stationary during an infusion, the experience will need to come to you. Head movement will be limited. Arm movement might be limited depending on the IV placement. This should feel natural. It should incorporate elements from nature. This needs to be designed to reframe the experience of an infusion, not replace it.
Augmented reality is better suited for this purpose than VR. For one, you don’t want to escape. You want to keep and perhaps reinforce the close relationship you have with your caregivers. You don’t want to block out the care you are receiving; you want to enhance it or calm it. Magic Leap is the ideal platform right now. The experiences you have with mixed reality seem more real. The memory is more indelible. This is key.
A lot would have to be explored. Experiments would need to be made. But the goal is clear: bring the rate of PTSD and anxiety related to a cancer diagnosis and treatment down. Create calm. Let’s reframe the cancer treatment experience to focus the patient on positivity. I wish I had this.
A call to action. If this is of interest to you, that’s of interest to me. I think we can begin to build a prototype using Torch to explore concepts and design. We would then move to develop for the headset. We should not ignore the possibility of a fully immersive experience in the beginning, but my gut says that mixed reality would make this more successful. It could be used for a more extended period of time and not obscure the physical interaction with caregivers. Although creating prototypes for both platform types might be necessary to validate this hunch. Let’s work together to make this happen. If you’ve been touched by cancer; if you are a digital artist or animator; if you can code or are a user researcher; if you work in Palliative care and have an interest in this — reach out.