On the ledge with suffering

A clinical psychology doctoral student notes on working in palliative care

I feel anxious every time I step out of the elevator onto the progressive care unit. My heart rate skyrockets (~115 bpm), I start to perspire, and I want to sprint down the stairs as quickly as possible. With each step I take closer to my patient's rooms, I feel the air thinning, my breath becoming shallow, and I wonder if I should be the one on oxygen.

The palms of my hands are always first to punch the lip of the free-hanging hand sanitizer outside my patient's door. As I rub my hands together, I look down at my notepad.

Pt information (all identifiable information has been changed to protect the patient) :

• Initials: MP

• Demographic: mid 70s, male, married, 3 kids, heterosexual

• Medical diagnosis: Lots of extensive medical jargon - overview - terminal cancer

• Prognosis: No longer treatable - days to weeks

• Psychology referral: Assess mood and goals of care

Before I entered the room, I opened the pink metal cart and untangled the yellow gowns. Already sweating, I locked myself into my gown, tightened the crown of my face mask, and looked into the cart for XL gloves. In a single motion, I knocked on the door, entered the room, and pulled open the mesh curtain. The bed was empty. I continue to pull the curtain to reveal the other side of the room. Across the way, MP was sitting in his wheelchair, gazing out on the beautiful fall day. I walked over and sat on the window ledge to face him.

I imagine he was daydreaming about feeling the sun's warmth on his pale skin, to smell burning oak wood again, or to hear the crackle and pop sound of dried kindling when added to a fire on a frosty fall night. He couldn't be further from that fantasy, as he's restricted to stale hospital air, headache inducing fluorescent lights, and a cacophony of violent beeps and alarms whenever he shifts in his bed.

Like so many times before, I sat there while he enjoyed his sun. As our eyes met, I smiled (forgetting my mask covers it). Looking back at me was a watery-eyed, frail, gaunt man with sunken cheeks, wrapped in blankets and wearing a bright red wool hat acting as his new hair. His IV pole accompanied us by the window. For months, his pole hung bags of chemotherapy, and other life-saving pouches of medicine with hopes of remission, maybe even a cure, and dreams that he'll be free of this nightmare. Sadly, the chemo and all other bags were now gone. Dr. J, the oncologist, was here earlier, informing him that there would be no more treatment. After years of chemotherapy, radiation, and surgeries, the medical capabilities hit their limit.

As we made eye contact, I could see the tornado of emotions growing within him. Before I could get a word in, he slumped deeper into his chair, sinking towards the ground, almost wishing he was in there already. As he tried to get comfortable my mind was racing. Knowing I had more patients to see, that MP's family would be visiting soon, and that the nurses would be changing shifts in 10 minutes guaranteed to interrupt our session. I knew I had to "do therapy" ASAP. My preoccupation with how I could be helpful, provide a therapeutic intervention, and later write a smart-sounding progress note to show the doctors I was useful was taking me further away from MP.

Currently, I am a fourth-year PhD student in clinical psychology completing training at a large safety net hospital. Specifically, I rotate in the medical hematology/ oncology division and the palliative care department. The oncology and hematology division treats adults with cancer or blood-related illnesses. While the Palliative Care department is dedicated to alleviating the suffering of patients experiencing a terminal or life-limiting illness. My hospital badge reads Psychology Intern, but I find that to be misleading as internship is still a year away. In reality, I am just a student with persistent imposture syndrome. I currently run between these services' inpatient and outpatient units, providing psychology care to referred patients. Psychology services in a hospital setting can be complicated. Unless you work in the emergency psychology services (EPS) or the psychiatric inpatient ward, most patients are in the hospital for medical reasons first. Meaning that psychology is secondary to patients' medical needs, as it should be. Our goal is to provide emotional support to patients while they undergo physical and medical treatment. When working with patients like Mr. MP, knowing "what to do" is incredibly hard. As students, especially on the West Coast, we are taught formalized treatment such as cognitive behavioral therapy. Therapies that have set structures, handouts, week to week goals to follow, and the goal of increasing hope. However, some of these treatments don't really work well in the hospital, especially when your patients are dying. 

MP started to rub his eyes, and I could feel how hard he was fighting to hold everything in. In a matter of seconds, he couldn’t hold it in anymore. Like a sink faucet was turned on and left on, he began to sob. So much so that I worried he’d die first of dehydration. The weeping started as a pure expression of helplessness and utter sadness. There was nothing I could do besides sit on that window ledge. I had to fight myself not to flee the room or tell him everything would be okay to stop his crying. The nursing shift change came and went. I waited as he continued to crumble. As the sobbing storm died down, it turned to begging. Begging for his life, as if I was a barter with death, he pulled at my gown and begged me to help him find new clinical trials as if I was withholding a life-saving cure. At this point, I looked like I had been pushed into a pool, my gloves filled with sweat, and my glasses splattered with my own tears.

One of the most challenging aspects of working with this population is how helpless you feel as a clinician. When you are treating someone with, let's say, major depressive disorder, and they report experiencing the common symptoms - low mood, lack of interest in things they used to enjoy, thoughts of worthlessness or hopelessness, sleep and eating disturbances, difficulty concentrating, and thoughts of death. There are tons of ways you can intervene. Like evidence-based and manualized treatments that are clinically proven to help elevate the patient's level of distress. Similarly, if the patient's symptoms are severe enough, you can refer to psychiatry for medication or higher levels of care, such as rehab programs. If it's really bad, you can involuntarily admit them to a hospital, and they will be held for at least 72 hours and can be given medication to help them at that moment. What's most challenging with a patient like MP is that there's nothing like that we can do. He is facing his mortality. There is no pill he can take, or place he can go that can change that. He is facing a reality we all face and will all face at some point: death is inevitable. The only thing to do is to sit there with him.

An analogy I use with my patients is that we are all on boats in the open water, and for most of us, there is a fog, a haze, that interrupts our ability to see where the end is, especially when we’re healthy. This allows us to put off the big anxiety-filled existential questions of life, like our own mortality. But for patients like MP, the fog has lifted. He is face to face with the end and has no escape left. It is one of the purest forms of suffering. At times, we engage in behaviors to avoid the reality of our mortality or the severity of our suffering (almost feels too cliché and obvious to say, but drinking excessively, acting nefarious in relationships, social media, or gambling, the list of we ways we avoid is endless). The difficult part is that many of these behaviors are really good at temporarily distracting us and buffering the reality of our suffering. But how do we cope when we are put on the clock? If the fog is lifted, we are tied to the mast with nowhere to hide, and are now face to face with the end. The short-lasting, yet at times effective, dopaminergic behaviors cannot change the reality long term. For MP, the fog had fully lifted, and when Dr. J told him there was no more treatment, he had fallen into complete suffering.

(The Port of Le Havre in the Fog, Claude Monet 1872 )

One thing that I have learned that I feel helps people who are suffering is simply sitting there and being present with them. For whatever reason, most of the other clinicians who met with MP earlier that day focused on the next steps (e.g., discharge planning and home hospice) and, by doing so, avoided the grief. I can relate to this impulse as I have learned a multitude of therapeutic approaches, interventions, grounding techniques, and other technical-sounding tools to help instill hope and decrease distress. I have to continuously fight myself during sessions like this to not rely on those as while they may provide immediate relief and assurance, they can counter the true reality of the patient's situation. Here, I didn't perform any fancy or complicated therapeutic interventions; I simply sat with him and listened. Death and suffering are a part of life and something we will all face at some point, and it can be incredibly difficult, but if we can restrain ourselves from blowing our own fog into people's boats only to provide short-lasting relief from the discomfort of the truth and, by doing so, deny their reality and diminish our ability to connect. Mr. MP needed to start expressing his existential grief, and after we had more sessions like this one, he was able to reflect on his life, move through his feelings of hopelessness, and he began to think about how he wanted to spend his remaining time.

In short, I believe that sitting with someone and being present with them in the face of great suffering is one of the best ways to help, even if it feels like you aren't doing anything. Regarding mortality, greater thinkers and writers have better articulated thoughts on this than I ever will. However, from my experiences, cultivating relationships with people you want to share your boat with is one of the best ways to find meaning in life. More on meaning and finding meaning in suffering next week.

Thank you for reading. I aim to produce weekly writings on psychology, addiction, therapeutic approaches, book breakdowns, psychological theories, and much more. I plan to pull from my clinical experiences along with my own personal insight. I hope you enjoy.

Book recommendations based on this topic:

• Mans Search For Meaning - by Dr. Victor Frankel

• When Breath Becomes Air - by Dr. Paul Kalanithi

• Four Thousand Weeks: Time Management for Mortals, by Oliver Burkeman

• Being Mortal - by Dr. Atul Gawande

Best,

Bradley F.