Love and Compassion

I just finished reading Paul Kalanithi's masterpiece, When Breath Becomes Air. The writing is exquisite.

A neurosurgical residency graduate who is struck by advanced cancer in his mid-thirties, he writes about his life, his studies, his work, his family and how all of these aspects tie together.

I have to take the book back to the library, but need to keep this one passage:

"As a resident, my highest ideal was not saving lives -- everyone dies eventually -- but guiding a patient or family to an understanding of death or illness. When a patient comes in with a fatal head bleed, that first conversation with a neurosurgeon may forever color how the family remembers the death, from a peaceful letting go ('Maybe it was his time') to an open sore of regret ('Those doctors didn't listen! They didn't even try to save him!') When there's no place for the scalpel, words are the surgeon's only tool.

For amid that unique suffering invoked by severe brain damage, the suffering often felt more by families than by patients, it is not merely the physicians who do not see the full significance. The families who gather around their beloved -- their beloved whose sheared heads contained battered brains -- do not usually recognize the full significance, either. They see the past, the accumulation of memories, the freshly felt love,* all represented by the body before them. I see the possible futures, the breathing machines connected through a surgical opening in the neck, the pasty liquid dripping in through a hole in the belly, the possible long, painful, and only partial recovery -- or sometimes more likely, no return at all of the person they remember. In these moments I acted not, as I most often did, as death's enemy, but as its ambassador. I had to help those families understand that the person they knew -- the full, vital independent human -- now lived only in the past and that I needed their input to understand what sort of future he or she would want: an easy death or to be strung between bags of fluids going in, others coming out, to persist despite being unable to struggle."

*I would add "their hopes for the future."

A little more than five months ago, I was part of what is a hospital chaplain's worst fear: A Pediatric Level One Trauma. A child the same age as my granddaughter had suffered a febrile seizure while taking a bath. By the time her father found her, her face was under the water and her brain had been deprived of oxygen for several minutes.

"Andrea" was put on a ventilator and the parents were told that she needed to be in a pediatric intensive care unit, so she was choppered to the children's hospital to undergo what my supervisor told me was a last hope procedure: her body temperature was deliberately lowered in the hope of reversing some of the damage to the brain.

This patient has stayed with me like few others. There is a Facebook page where 8-year-old Andrea's parents post daily updates and photographs. They report progress. Daily, they say that she is "working hard." God forgive me, I am skeptical. I so admire their hope, their determination. But sometimes we see what we need to see and these parents need to believe that the girl who went upstairs for a bath will be back with them. I see a vacant look in her eyes, but I so want to be wrong, for them to be right. One of my colleagues said, "It would have been better to have let her go." The words sound heartless; I waiver between condemning her and agreeing.

The community in which the family lives has been astonishing in their support. Fund-raisers of every possible kind have been and will be held. Dozens of meals have been prepared and shared, the neighborhood men have come together to build the first-floor home addition that is now needed. I've never been prouder to be part of this town.

Years ago I spent a weekend at a Quaker retreat center attending a program on medical ethics. One doctor spoke at length about a phenomenon that strikes the children of the Amish community not terribly far away. These children progress normally for a few years and then, without warning, begin to regress until they are once again infants, but in growing bodies. They are kept with their families, brought to all gatherings, groomed, dressed, and cared for. The doctor said, "These children are not the objects of our love and compassion. They are the source."

The Smell of Evil

Sunday's Gospel was the story of when Jesus went to visit his friend Mary and she massaged his feet with expensive, fragrant ointment. The pastor did a fine job with his sermon, getting us all to think about distinctive, beautiful aromas. He talked of what Mary had done as "the smell of love and kindness." It was a good sermon, and I smiled to myself as I remembered my experience of Friday night.

I could smell something the minute I set foot in the trauma bay. It was a terrible smell -- kind of a strange combination of the dirtiest feet in the world and, erm, poop. I expected the patient to be filthy dirty. Sometimes we'll get a homeless patient who hasn't had a bath or a change of clothes in a long time, and he'll smell pretty ripe. And that is pretty much what I expected.

But when I got up close to him, he wasn't dirty at all. He was neatly shaven and his face was clean. The clothes piled at the foot of the gurney were relatively clean. But the smell was overpowering. It was my  job to ask who I should contact to come to the hospital. He was soft-spoken and he was a bit drifty. He nearly fell asleep while giving me his girlfriend's telephone number. He seemed pleasant enough and I found myself wondering why this young man had been assaulted.

After I contacted his friend, I went out front to update the triage desk with the patient's name. The triage nurse said, "Oh, the assault patient. How's he doing?" I said that he had gone off to CAT Scan but was moving all of his body parts appropriately. Then I added, "He's kind of stinky." Everyone in the trauma bay had been aware of it. The triage nurse said, "Oh, that's the heroin. Heroin addicts have that very distinctive smell about them."

I had no idea.

The smell of love and kindness. And the smell of evil and heroin.

A Visit with Bessie

When I got to her room, there were three visitors surrounding Bessie's bed. There were cards taped to the wall, a couple of flowering plants, and a balloon or two. One of the visitors was by her side, spooning bits of vanilla ice cream into her mouth. The little blue referral card indicated that Bessie was the mom of the hospital's compliance officer.  "Oh, I didn't know you had company," I said, and promised to return later. The visitors wouldn't hear of it. "She can really use a chaplain visit today. She's been kind of down. We'll go get a cup of coffee." I protested, but they prevailed. I settled into the visitor chair.

I don't know all of this lady's details, but we had the best visit. We started with what had brought her to the hospital and, clearly, she had been through a lot. She had had to give up many things that she enjoyed due to her failing body (if I remember correctly, she was 86), but her mind was totally intact. My patient spoke of having been responsible for the Thursday night dinners at the place where she used to live, and her eyes filled with tears as she described the pleasure of planning the menu, preparing much of the food, and shopping at the dollar store for seasonable paper plates, napkins, and table decorations. This had been a big loss amidst her many losses.

Bessie shared that she and her husband had recently moved to a retirement center and they had had a major cleaning out of 39 years' worth of accumulated "stuff" before moving. And when she got settled in her new digs, it turned out that outside the apartment's front door, in the hallway, there is a little shelf and the residents like to decorate their little shelves -- some seasonally and some just whatever. And this poor lady had nothing to decorate her shelf!

She had a bazillion stitches in her scalp and discolorations bruises in many locations, and her motor coordination (or lack thereof) was such that she had eaten her apple pie with her hands because she couldn't manage the fork. What was foremost in her mind was her undecorated shelf at home. Just what would the neighbors think.

I really, really liked Bessie, and we set a goal of her getting well enough to be discharged so she could go to the dollar store and replenish her knickknacks. And when I took her hand for prayer, she apologized that it was sticky, but she just had to have that apple pie!

Two Thoughts

Reflection Number One

It's been about a year or more, I think, since I reconnected on Facebook with someone who was in my second grade class, and in many other classes as our group progressed through from kindergarten through 12th grade. I'm going to call her "Joan" (though that isn't her name) and I re-"met" her when a zealot began a page in opposition to the tearing down of our ancient elementary school. She sent me a friend request, I accepted, and that pretty much was that. We occasionally "like" each other's posts, but never progressed to the point of "Why don't we go to lunch?"

When I look back on my elementary school years, I was happy through fifth grade. My sixth grade teacher didn't make much effort to discipline the class and a nasty classmate, Barbara, picked on me mercilessly. I was a complete outcast. The teacher allowed the students to arrange the desks in banks; there were two banks of six for the girls and Barbara didn't want me or one other girl anywhere near her group. So we were apart and alone. I was the youngest person in our grade of fewer-than-ninety students, youngest physically, emotionally, chronologically, and developmentally. That year was a horror for me and the three years of junior high weren't much better. I was lonely, insecure, and picked on until we reached high school where there were many, many more kids and I found a niche.

A few weeks ago when I came to work at the hospital, as is my custom, I went through the alphabetical listing to see if anyone I knew -- either personally or as a patient previously -- was admitted. There was Joan's name. I hadn't seen her in 53 years. I had no specific memories of Joan's having been mean to me, but I was still a little uncertain as I approached her room. Immediately she said, "THERE you are! Come give me a hug! I knew you worked here but I didn't know how to have you come visit!"

We spent more than half an hour together. She was sick with an infection, but not uncomfortable, and glad of a visitor. We rehashed old times, shared snippets of our lives since graduation, remembered horrible teachers, caught up on what we knew of classmates. We had a good visit.

I left Joan and got to thinking. I found I had good memories after all, including Joan and her sidekick "Linda," and several other kids who had never been hurtful to me. They had been quiet, perhaps intimidated by Barbara the Bully, or perhaps just preoccupied with their own difficult adolescent lives. Of course Joan thanked me for coming to visit her. But she had no idea what she had done for me in return -- caused me to re-evaluate 50+ years of painful memories only to find there were good ones intertwined here and there.

Reflection Number Two

I love the work I do at the hospital. It is a real privilege to be part of people's lives when they are in the midst of crisis. A lot of my work is supporting families of trauma patients; they really need someone who can just listen to their pain and their fears, and the rest of the trauma team surely has no time to do that.

My friend Karla is my personal prayer champion. She tells me frequently that she prays for my work in the hospital, and I know she isn't just saying so. One night I left the on-call room to go to a particularly sad situation. As I waited for the elevator just outside the room, I noticed a pretty quilt hanging on the wall with appliqués related to this particular hospital. For some unknown reason, when I looked at that quilt that night, I remembered that Karla had been praying for me and that I wasn't going to the situation alone.

Almost every situation begins with my catching that particular elevator. And I've made a permanent mental link between that quilt and Karla. I go off to see the patient knowing that I'm not going alone. God goes with me, and so do Karla's prayers.

Last Rites

When my friend Sharon visited me a few months ago, we talked about pastoral care at the time of death. I told Sharon about an occasion when I'd called the priest to come for the Sacrament of the Sick and I had stayed and participated with the family; I had found it meaningful and Sharon reminded me that we Lutherans had a ready supply of rituals -- had I forgotten?

So I started carrying my old green Occasional Services book to work with me. I marked PC at time of death, Emergency Baptism, Laying on Hands. 

Today was the first time I used the book.

I was called to a room where a man is to be removed from life support — the family is in agreement that this is the right thing to do. The man and his siblings are Roman Catholic; the rest of the family is Presbyterian or unchurched. I phoned the priest on call to see if he would come over to perform the Sacrament of the Sick, but got his machine; I suspect he had already gone over to serve Mass as they have a 5 o’clock at that church. I left him a voice mail saying if he received the message and could come over by 5:30, we’d all be grateful.

I walked back to the room and shared all of that with the family. They thanked me for trying. Then I offered to read the Lutheran/Protestant version of commendation of the dying if they would want me to do that and if not, that was certainly okay. The Presbyterian wife wasn’t sure what to do; she didn’t want to do the wrong thing and offend the Catholics in the family. She asked the patient's sister to weigh in; this lovely lady listened to my offer and said, “God is God. We all believe in the same God. But this isn’t my decision to make. It’s hers.” So with the approval of the Roman Catholic side of the family and the wishes of the rest of them, I read a truncated version of the service while they all held hands and joined in the Lord’s Prayer. It was a lovely moment and I was so glad that Sharon had reminded me of these rituals and that I had been able to help this very nice family.

An hour or so later, Father called back. "I guess it is too late for your patient," he said. It was. The man had passed as soon as life support was removed. I was a little bit nervous as I told Father how I had handled it. I was afraid he would get territorial or something. But instead he said, "Thank you so much for doing that."

God IS God. We all believe in the same God.

Thank you, Doctor

I was called by a nurse from the ER. There was a cardiac arrest going on; would I come down and be with the family in the waiting room. I was there within two minutes.

The family in the waiting room was a woman in her mid-thirties, rapidly thumbing the keypad on her phone, texting. I told her who I was and asked her to tell me what was going on. She was the daughter of the patient in the cubicle, and she began to tell me a story of pain and suffering.

The patient and his wife were homeless. For the past month they have been living on the streets, occasionally spending a night with friends. The daughter had been fortunate enough to be able to live with her aunt in a small apartment, and her parents had been able to keep some of their possessions in the apartment's storage unit. The daughter also had a 9-year-old son. Autistic. The aunt had recently passed away, so she had to move out of the apartment. She had, with considerable effort, located a shelter in another town where she, her son, and her parents were scheduled to move tomorrow. "And now this."

I went back to the cubicle to check on the patient's progress. The patient's wife was slumped on a chair just outside the debacle. She looked tired. Not just "lack of sleep" tired but a deep down tired-out-by-life kind of tired. The patient had lived hard -- lots of tobacco and alcohol -- and was now possibly paying the price. He had a history of heart problems in the past. Chest compressions had been going on for about twenty minutes, pausing every now and again for administration of drugs, in an effort to gain a pulse.

I went back to the waiting area to find a man with a hoodie slumped in a chair near the daughter, and beside him an attractive, well-kept woman fingering a rosary. Turns out they were the patient's somewhat estranged son and his girlfriend. The sister and brother did not speak to each other; nor did they make eye contact.

I spent about an hour and a half with this family, back and forth between the cubicle and the waiting room, listening, reporting, supporting. The patient was critically ill; the first goal was to achieve a sustainable pulse so he could be taken to the Cath Lab for further diagnostic. This appeared unlikely, and ultimately he was transferred to the Cardiac Surgery Unit.

But the tension, the stress among the family never seemed to abate. Turns out that the son/brother -- and his 12-year-old daughter of whom he had partial custody -- had recently moved in with the girlfriend and the homeless parents were jealous and resentful that he did not invite them to move in as well.

When the patient was finally ready for transfer and the doctor came out to speak with the wife, it was the same cardiac surgeon who had saved my husband's life nearly seven years ago. I knew the patient was in very good hands. The wife thanked the resident. She thanked the cardiologist.

And as the two of us walked back down the hall to the waiting room, she stopped in her tracks, turned to me and said, "Thank you, Doctor -- that just sounds so inadequate."

Thy Will

There were already tears in his eyes, spilling down onto his cheek as I entered the room. "Thank you so much for coming," he said. He introduced himself, his wife, and his sister. Then he introduced the lady in the bed, his mom. Collectively, they had decided to institute a morphine drip -- the doctors had said that there was nothing more that could be done for Betty; her breathing was compromised due to fluid in her lungs. 

Instantly, I sort-of fell in love with this family. This was to be a brief connection, but a deep one. A man who is brave enough to let the tears come unashamedly is a man I want to be around. 

He told me that they had talked together, with the nurse, with the doctor, with Betty even, and the morphine drip was what they needed to do. I knew they were right. What was so interesting to me was Betty's active participation in the conversation, despite the struggle with each breath. It was hard to watch her, to hear the sounds of her failing lungs.

We gathered around the bed, joined hands, and spoke with God. We expressed thanks for the love of family, for the compassionate care of the medical team; we spoke of the assurance of a life with God after this one and we asked for the courage to entrust Betty to God's tender mercy. We ended with The Lord's Prayer.

Incredibly, as soon as the prayer began, Betty's breathing calmed. It wasn't as noisy. She was hearing the prayer. And when we began The Lord's Prayer, her lips moved and each word was whispered. 

Throughout my shift, I was drawn to return twice more to this special family. To put my arm around the sorrowing daughter, to hold the hand of the man who let his tears flow, to pray -- one more time for Betty -- "Thy will be done."