"Authenticity is holy"

5 questions for palliative care chaplain Liz Powell

As promised in last week’s newsletter (yes, the one with all of your gorgeous reflections on a year of pandemic life), I wanted to bring you a Q&A with “one of us.” Liz Powell’s email jumped off my screen and broken open my heart. Many of you have been in touch with me about the fact that it did the same for you.

She is a single mom of three kids, a palliative care chaplain in Austin, and a member of this “creatively maladjusted” (ala MLK), nerdy, intergenerational little newsletter family. Here she is, in all her insightful, heart-forward glory…

This is Liz. Can’t you just tell she’s seen a lot of death and belly laughs all the harder for it? You’re truly beautiful, Liz.

Courtney Martin: What is a palliative care chaplain and how did you get into this work?

Liz Powell: Dame Cicely Saunders introduced the term “total pain” to refer to the pain of a patient at the end of life, which includes physical, emotional, spiritual, and existential pain. Her life’s work tended to the care of the whole person, and paved the way for interdisciplinary team work in the healthcare setting.

A palliative care chaplain is part of the interdisciplinary team serving patients with serious and life limiting illness. The other members of the team include physicians, advance practice nurses, nurses, and social workers.

My work now is in the support of the life of the spirit of each person I care for, while listening for spiritual and existential pain. It is not my job to “fix” anything, nor do I offer my own spirituality as an “answer.”

Each day, I listen as people tell me the stories that point to the meaning of their lives, as we wonder together about what it’s all about, or as they make peace with the reality of death.

I have been in this role for 12 years, after working for many years in Episcopal education. I am at baseline talkative and extroverted, pretty darn upbeat, and if I am not careful, I will go straight to the hopeful part of my own story while minimizing the parts that hurt.

So, how did I find my calling in a job where my role is to listen deeply, hold silence, tell the truth about what is happening, and be present? Even when I was in Seminary, there were some clues: I loved the book of Job and the post-resurrection appearances of Jesus. While those interests pointed to an interest in asking questions about God’s relationship to our suffering, I always imagined that my ministry would remain focused on the care of children. When I transitioned to work in the hospital setting, I was surprised to find that Palliative Care is my “home base,” and yet it feels like exactly the job that I went to Seminary to learn how to do.

Authenticity is holy to me, and when facing chronic, progressive, or life limiting illness, people don’t have the energy to maintain the masks we all wear at times.

So in my daily work, when patients, their families, or my colleagues tell the truth about who they are and what is happening, I understand it as sacred. One of my spiritual truths is that nothing is wasted, and we take all of who we are with us into each season of our lives. I still work with children, though now my time is with children who are grieving or visiting a loved one who is critically ill. I am grateful for the gift of meaningful work.

I think it is important to add that I am a lot more fun than this makes me sound!

Can you share a little about what your pandemic year has been like on the job?

It is hard to know where to begin! I work in a Level 1 trauma hospital that serves as the safety net hospital for our community. We also are a teaching hospital, meaning there are medical residents and learners in many other disciplines as well.

I have worked with my colleagues at the bedside to help a wife in the ICU speak over walkie-talkie to her husband, who was in another ICU room in the last minutes of his life. I have gathered on Zoom with the members of a family to say goodbye to a grandmother, only to gather with the very same members of the family two weeks later to say goodbye to their grandfather. I worked with a family member who remained at home caring for all of the children in her family while her siblings and parents were all in the ICU. She also had CoVid 19, but she did not require hospitalization. How could anyone possibly manage that? I leave the hospital every day with a sense of awe and reverence for the things that people carry.

Many of our first patients were members of the same family. For me, that is one of the very hardest parts of this pandemic year. So many families have more than one hospitalized loved one at a time, and too many are bearing losses of multiple family members.

The political rhetoric somehow created an environment in which science and public health recommendations fueled partisan divides, and I felt so discouraged.

Sometimes those public discussions seem so disconnected from the reality of my daily work, I wonder how my neighbors think so differently than I do.

At the same time, fears about job losses and employment are also high valence concerns, and are at the heart of many of the questions about re-opening.

My colleagues in all disciplines worked to deliver care to all patients while also holding the pressures and stresses of their lives outside of the hospital: children engaged in remote learning, family members without work, and fear of bringing CoVid 19 home to their loved ones. The early days included uncertainty and anxiety for all of us, no matter where we live or what we do for work. In the healthcare setting, we wondered if we could keep our families safe while caring for patients.

Initially, I worried about what parts of the curriculum my children might miss while learning from home.

Now I wonder what is the unofficial curriculum of the pandemic?

Will our kids value community and being together? Did they learn something essential about the sacrifices we sometimes make for one another and the common good? I don’t know, but I think it is possible they learned some things that I celebrate.

I felt so much sadness during those early weeks. So many of our early hospitalized CoVid patients likely became ill while working in jobs that had no option for paid time off: construction workers, environmental services staff, and food service professionals. I have really struggled with the reality that there was no way for these patients to shelter in place and keep their livelihood. I still wonder if we collectively approached the pandemic in a way that presented false choices: either go to work and risk getting sick, or shelter in place with no income.

Throughout the year we have all heard about the healthcare heroes, to the point that the words don’t carry weight anymore, they have lost their meaning. I weep anytime I talk about the work of my colleagues in the hospital. From the medical resident interns, who graduated from medical school via Zoom right before beginning their career in our first surge in July, to the bedside nurses and respiratory therapists whose daily work brought them in proximity to such suffering, to the environmental services workers who helped all of us everyday and entered every patient room, to the physicians who learned, studied and collaborated, developing best practices to care for our patients...suffice it to say that we have to find a better way to talk about our “healthcare heroes”; they are the very embodiment of my best hopes.

Last week I participated in a dialogue with colleagues about “what it is like to be a human being” in our work. We didn’t talk about clinical decision making or treatment plans, but rather on our experiences as people. My sense is that we are entering a period of reflection, and we shared many tears. One of my colleagues said that it was like one of the multi-casualty disasters that we prepare for, but that it lasted for an entire year rather than a few days. That sounds right. There is a little bit of light on the horizon, and now begins the work of tending to our hearts.

It must be heartbreaking to witness people saying goodbye on Zoom. Are there any surprises for you in it?

The single biggest change in my daily work this year is the fact that we don’t have visitors at the bedside. I bought a camera for my laptop in March of last year, because attending meetings or met with family members via Zoom was a brand new experience. I initially thought it was clunky, and wondered if I had any skills that would translate to the new medium. I imagine that is true for so many of us!

There is nothing fair about saying goodbye to a family member via Zoom (or Facetime or WhatsApp). Yet the family members of my patients have shown me such beauty in the prayers, rituals and practices that they created. One of my patients was a beloved father and grandfather whose hospitalization was months long. When he entered the last day of his life, he had been on a ventilator in ICU for many weeks. His daughter gathered all of her siblings and all of his grandchildren for a Zoom call to say goodbye. His bedside nurse held one IPad at his bedside, I held another Ipad in the hall, and his daughter had a device at home with his gathered family. She asked his nurse to focus the camera on only his hand, so that all we could see on the video from his bedside was his outstretched hand. She then had every family member at home stand, one at a time, in front of his hand while she prayed a blessing she imagined he would give to each of them. I did not do a single thing to create it, and yet the beauty of that blessing will stay with me for the rest of my life.

Some days I just need to get quiet and stay out of the way.

You are a single mom of three children. What has your chaplaincy work taught you about parenting?

Life repeatedly sends me back to the chalkboard to practice the lessons regarding the limits of our control. Patients frequently tell me that they feel like they have lost all control. I tell myself that what we lose is the illusion that we were ever in control at all! Parenting a teenager can make me feel like I have lost all control! It is hard to remember that control is an illusion when I am in the moment with my own children sometimes.

There I am, back at the same chalkboard, learning the same lessons again.

I wish I could raise my children with a few guarantees about their safety or their future. My patients teach me to feel things deeply and hold them lightly. Parenting provides me with ample opportunity for practice. I don’t want to fall short as a parent.

As a chaplain, I feel such sadness when people have regrets about being imperfect in their most important relationships, especially because the regrets are often heavy and have been carried for many years. It is intentional work for me to put things down, which requires faith in love's ability to bear the ways we messed up without diminishing the power of our love. The long game looks good, even when we are living through a hard day together. And about those hard days...they can be about small things like chores and routine, or about big things like the choices that shape our lives...I know that every single patient I work with wishes for more of those days.

When my patients wish for more time, it is not just for the big moments like graduations or weddings. They wish for more of the everyday mundane time, full of laundry and bedtime and traffic and sight words. I hope to feel all of it deeply while holding it lightly, knowing that all of it is a gift.

At the end of the day, I hope to teach my children that who we are and what we do are not the same thing, and that they do not have to earn dignity and goodness by achieving or producing. I hope I remember the limits of my own control and watch them grow into the goodness of who they already are, and who they are becoming.

I imagine there is a lot of crying/laughing (my favorite kind) in your profession. When was the last time you belly laughed?

What a good question! I will tell you one at work, and one at home. I was recently in a small office with my Palliative Care team. We know each other well and work closely together, enough so that we anticipate one another’s questions and responses. Right now we are all wearing our masks when we are together in the office. While in the midst of conversation, I looked at one of my colleagues and was mouthing the words of a question I had for her, because I didn’t want to interrupt the speaker. She was leaning in, trying to understand by studying my facial expressions and eyes. After a few seconds, we realized that she couldn’t understand what I was saying BECAUSE I HAD MY MASK ON. Before long, we were all belly laughing. In part, because I was so ridiculous, and in part because she was truly trying to understand, leaning in to decipher my facial expressions from the nose up!

The last time I belly laughed at home was at the dinner table with my kids. The kids had a private joke, and I still don’t understand it, but it has something to do with the word “quinoa.” All three of them were belly laughing, and even though I didn’t understand the joke, I was drawn in to the joy of all three of them delighting in one another.

This is the good stuff.

I’ll be donating a portion of our subscription fees to Neighbor 2 Neighbor, an organization that puts food on people’s tables in East Austin, in honor of Liz.

And if you’re moved to learn more about palliative care and end-of-life questions, check out End Well, an amazing organization connecting folks working in and interesting in the field. They have an amazing treasure trove of short TED-style talks you can watch. I had the great honor of hosting their annual conference a few years in a row, and interviewing great humans like Frank Ostaseski, co-founder of Zen Hospice Project.