Author: mary.lahaj

     According to hospital protocol, a chaplain is considered “following” a patient, once the chaplain signs the chart and summarizes a report of each visit. If a family meeting is called, the medical team will invite the chaplain to participate.

         I was following, Kamel, a thirty-eight-year-old Iraqi with leukemia. He had suffered for many years before being admitted to the hospital for a bone marrow transplant. After the transplant, however, he contracted the deadly graft-versus-host disease.  It is relatively rare, but it is a condition that occurs when the donor’s bone marrow or stem cells attack the recipient. As a result, Kamel showed no signs of recovery from this treatment.  After many months of suffering, his condition had worsened and weakened his heart.

         Since I didn’t speak Arabic, I never had a conversation with Kamel on my visits. I recited the prayers I knew in Arabic, and we connected with eye contact. Kemal would often grace me with a smile of appreciation.  However, after his heart attack, he slipped into a coma. I felt so bad for him, I continued to visit, despite his being unconscious. I would sit for a short time at his bedside and play tapes of Qur’anic recitation.

         The nurses on the floor initiated a family meeting out of concern for Kamel’s severe bedsores that added to his misery due to his long hospital stay. They specifically asked the hospital’s Ethics Committee to attend and confided to them that Kamel’s quality of life was so poor they were tempted to lift the covers and show his family the bedsores, with the hope of convincing them to stop the ineffective treatment. The medical team agreed to bring the family up to date on Kamel’s suffering and rather hopeless condition.

         After one of my visits, Kamel’s social worker invited me to the family meeting.  She also asked me to call Kamel’s wife and health proxy, Fatima. The social worker had been trying to contact Fatima, who had not returned the calls or visited for several weeks. I agreed to call Fatima, hoping she would respond to a call from the “Muslim” chaplain. And she did.

         Fatima spoke to me in strident tones. “I am extremely disturbed by this whole situation. Every day, every single day, my mother-in-law calls me from Iraq, asking about Kamel. ‘How is Kamel? What is happening? Is he getting good care?’”                  

         I listened as Fatima was unraveling at the seams. She worked every day and could not take time off to visit Kamel.  She was “under a lot of pressure” from his mother.  She said, “What can I know about her son’s condition that I can report every day? Honestly, I have to tell you; I don’t want to make any decisions about his care. And I don’t want to be his, whatever it is, his health proxy.”

         I mentioned the importance for her to attend the meeting and stressed that Kamel was suffering. Fatima said, “I trust the doctors to do whatever they can to save Kamel’s life. I don’t see why I have to come to these meetings when whatever happens to Kamel is in God’s hands.” 

         That ended our first conversation, which I shared with the social worker. Meanwhile, Kamel’s condition worsened. At this juncture, no further treatment could cure him, but the medical team needed permission from his health proxy (Fatima) to either perform a minor medical procedure on his lungs or stop treatment altogether. The head nurse asked me to call Fatima again. Thinking of poor Kamel, wasting away in his bed with no end in sight, I said I would.

         “Salaams, Fatima. I wanted to let you know that Kamel’s condition has worsened. The doctors and nurses want to help him but can’t do anything without your permission.”

         “What? Oh, no, no. I do not want to be responsible for his life.  His mother keeps calling me every day. Really, I don’t know what to tell her. What can I do?”

         “Fatima, I want to help. Can you tell me a little more about you and Kamel?”

She was patient enough to stay on the phone with me. She told me that Kamel was from northern Iraq and had arrived in America in the early 1990s. They were living in Quincy, in an Iraqi enclave.

I knew that during the early 1990s, the Iraqi dictator, Saddam Hussain (a Sunni Muslim), had tried to exterminate the Shi’a Muslims in that northern region – his own people.  

         Understanding the importance of her ethnic community, I asked Fatima if someone in her Iraqi community could accompany her to the meeting. After a brief pause, she said, “Okay. I will ask Kamel’s cousin to come with me, but I don’t want to be Kamel’s health proxy any longer.”

         After giving her the scheduled date and time, I hung up with only a shred of hope that she would attend.

         The meeting took place in one of the large patient-family rooms on Kamel’s floor. Gathered at the long table were various medical specialists, the head of the Ethics Committee, Kamel’s case worker, the social worker, the nurse manager, the nurse educator, the head nurse of the oncology floor, and my chaplaincy supervisor.

         While we waited for the family to arrive, the head of the Ethics Committee asked me to explain to the team if there were any possible cultural or religious influences to consider that might affect the family’s decision to stop or keep treating the patient.       

         No single answer came to mind. I explained what I had learned about the family’s background. It was safe to say that as Shi’a Muslims, they had probably fled Saddam Hussain’s genocidal attack in the 1990s, but I couldn’t see how this would affect their decision about Kamel’s treatment.

         Fatima arrived on time with a small entourage. There were two women pushing baby carriages and several men.  Once everyone was seated at the table, the tallest man introduced himself as the “spokesperson.” He said, “The family has appointed me to speak. I am Kamel’s cousin. . . you can say. I am happy to act as his health proxy if that’s okay with you.”

         The committee nodded in agreement, and the doctors described Kamel’s condition, making it clear that further treatment would not produce any positive results. When they finished, Kamel’s cousin launched into a speech about the core principles of Islamic law and the obligation to preserve life.

          “Kamel survived the murderous intent of Saddam Hussain and left his family and his homeland, so he could practice his religion freely in America. As Muslims, we can never give up on a human being. So, I ask you to please continue to treat Kamel.” 

         I tried to hide my disappointment. Fatima remained silent throughout, showing no emotion. I asked the cousin if they had consulted with an Imam about Kamel’s condition and continuing his treatment “when there was no hope of his recovery.” The cousin bristled at my question and declared defensively, “Absolutely!”

         I had asked the question because I wanted the medical team to know that consulting an Imam was the Islamic protocol for such a critical situation. But Kamel’s cousin had taken offense, and I immediately regretted sticking my neck out and appearing like the novice in the room.

         The medical team listened respectfully to the speech and adhered to the family’s wishes without further discussion. Once the family left the room, the team held a brief post-meeting assessment. The head of the Ethics Committee commented that she had heard a holocaust survivor express a similar sentiment and stated, “They would never give up hope, even in the worst situation.”

         Eleven days later, Kamel died after more than one hundred days of suffering in the hospital bed. I was relieved for him. 

         In terms of the mindset of holocaust survivors, this experience was followed by a similar situation. A few weeks later, I was called by a nurse to comfort the adult children of a woman who was on a ventilator. They were three sisters, and they explained that their mother was completely lucid and mentally competent and, by writing a note, had asked her doctor, the head nurse, and her daughters to be taken off the ventilator and allowed to die. Her doctor was an Orthodox Jew, and his reply to the patient and family had been, “Absolutely not. No, Mrs…. You are going to walk out of here!” 

         The daughters were outraged. They wanted their mother’s wishes respected and asked the chaplain to intervene and speak with the doctor. The head nurse, who had witnessed the mother’s lucid request and read the note, was willing to support the patient and her daughters.

         When I approached the doctor, he told me that in his “tradition,” he would never give up on a patient and dismissed any further discussion. However, after a few days, the doctor requested a meeting with the family and the hospital’s Palliative Committee.

         At the meeting, the doctor agreed to “hand over” the patient to a doctor he knew on the committee. Fortunately for the family, per the protocols of the Palliative Committee, the patient was taken off the ventilator, and comfort measures were implemented.

         According to Islamic principles, as stated by Kamel’s spokesperson and in keeping with the Orthodox Jewish doctor’s traditions, saving a person’s life is paramount, no matter the cost. However, during my residency training at the hospital, I thought a lot about the cost of saving a life. In conclusion, I realized that modern medical treatment should not be the only option when its high costs are extracted in patient or family suffering, or in hospital expenses. For another option, I support Palliative care.

It was November 1963, and I was ready to get my driver’s license. Always the salesman, my father chose a brand-new 1964 Dodge Dart from his showroom for my driving test. I think this was the third-generation Dart. It was an instant market success and remained extremely popular until the end of its production run in 1976.

When the registry man at the Quincy Registry of Motor Vehicles saw the Dart, he gave it the “star” treatment. He greeted my father the way everyone in Quincy did, being familiar with the Hassan Brothers and the two automobile businesses. He and my dad walked slowly around the car, examining every feature while I stood and waited in the shadows.

Once the oos and aahs subsided, we set out with my father in the back seat and the registry man riding shotgun. I felt relaxed and confident with my dad in the back, and I suspected that passing the driving test would be a sinch no matter how badly I drove.  

The registry man was a good-looking Irishman. His face was a little reddish, and his brown uniform was sort of tight all over.  With some effort, he slid into the shiny new car seat and arranged himself halfway between the front and the back so he could talk to my father about the Dart. The interior was a new shade of green that closely matched the car’s two-tone green and white exterior colors.

In a lilting tone, he turned to me and quietly commanded, “Give it the gas, Mary . . .” 

He turned to my dad, “Peppy, right, Mr. Hassan?”

As he turned back to face the front, I could hear him sucking in the new car smell like it was oxygen.

Twisting to the back again, he asked, “What kind of engine is in this little beauty, did you say, Mr. Hassan?”

For quite a while, the registry man issued me driving commands and intermittently lobbed questions to my dad over the back seat.

“Take a left here, Mary.”

“Parallel park over there, Mary.”

In this attempt, however, the front two wheels went up over the curb. I sat silently behind the wheel as we perched on the sidewalk. It seemed an inordinately long time, but I knew not to interrupt the ongoing conversation. Finally, the registry man noticed and said, “Whoops! Okay, Mary. Let’s back it up slowly now, very slowly.”

Both my passengers expressed their utmost concern for the car. Turning and winking at my dad, the registry man said, “We don’t want to hurt this beautiful new car, right, Mr. Hassan?”

Right. And that was the day my driver’s license was handed to me on a silver platter, so to speak. Dart sold? Definitely.

This story is by Becky Hamlin Pine:

Part I  

In the early fall of 1962, when I was 15, my parents bought their first brand-new car, a dark blue Rambler station wagon for our family of five.  Seat belts were not yet standard equipment in cars in Massachusetts, but their value in saving lives was beginning to be recognized, and they could be purchased as aftermarket items.  On Saturday morning, Dec 22, 1962, I decided to accompany my father when he went to inquire about getting seat belts in our new car.  Several inches of wet snow had fallen early that morning, but by mid-morning, the snow was turning to slush.

Somewhere along the way we rounded a curve, perhaps a bit too fast for the conditions, and began to slide, skidding rapidly into a telephone pole.  I, in the front passenger seat, shattered the windshield with my face. 

My father’s face hit the steering wheel, leaving a small cut on his chin.  He saw the blood on my face and concluded I had a bloody nose. He gave me his handkerchief for the bleeding and helped me lie down in the back seat. Then he went to a nearby house to call our neighbors for some help.  I assessed my situation –I could see, so I knew my eyes were undamaged, but I worried about my teeth, which had been straightened by years of expensive orthodontia.  My father set about trying to dig the car out of the snowbank it was lodged in, perhaps thinking he could drive it home.

Our across-the-street neighbor and his teenage son arrived but quickly recognized that we needed more than a ride home.  They called the police, who took us to the local hospital in what we always called ‘the paddy wagon’.

At the hospital, our family doctor appeared to treat my wounds.  The fact that he happened to be in the hospital on the Saturday morning before Christmas was always seen as miraculous by my parents.  I remember lying on the table as the nurses cleaned up my face to assess the damage.  Our doctor, a family practitioner, gave me novocaine shots in my face which hurt a lot, and then carefully closed the cuts on both of my cheeks with 36 stitches. He covered them with strips of Vaseline-soaked gauze, and sent me home with a supply of replacement Vaseline gauze strips and instructions to not get my face wet.  This meant I could not wash my hair which was now caked with a mix of blood and the soapy water the nurses had used to wash my face.

I spent the rest of the day lying on the couch at home.  My parents were invited to a Christmas party that evening and there seemed no reason for them not to go.  But they were a little uneasy leaving me home with only my younger siblings, so I called my good friend Jonathan, who willingly came over and spent the evening with me, earning a lifelong place in my mother’s heart.

On Monday, Christmas Eve day, with another miracle, my mother was able to get an appointment at a beauty parlor so my hair could be washed without getting my face wet.  Only after this improvement were any photos of my face taken.

Some weeks before, I had accepted an invitation to the Demolay Ball held between Christmas and New Year’s Eve.  I called my date, Donnie, to warn him that I had stitches all across my face, but he still wanted to go to the dance with me, which gained him residence with Jonathan in my mother’s heart.

The stitches were removed (painfully because there was no novocaine for this) before school reopened in January, but the stitching pattern still shone bright red on my face.  One teacher commented about the neat geometry of the doctor’s work.  Many of my classmates expressed concern and asked if I’d been scratched by a cat. 

Over the years, the bright red scars faded, and life moved on.  The new Rambler was repaired and went on to a long and useful life for my family, but the accident lived on in all of our memories. Seat belts became automatic for all of us and mandatory for everyone else in the car. I became a very cautious driver in any amount of snow or ice.  My father never fully lost the guilt he felt over permanently damaging my face. But despite the accident, I felt pretty lucky about my life, and, at age 55, I wrote an essay titled My Lucky Scars which is printed below.

Part II

MY LUCKY SCARS

Becky Hamlin Pine (2002)

It’s a curious experience in our culture to have scars on your face.  Especially fading scars that sort of blend in with the natural lines of your face. They’re right there for everyone to see, but no one ever mentions them, so it’s impossible to know if anyone actually does see them.

There’s no way to casually ask a new acquaintance, “Oh, by the way, do you see the scars on my face?”  It’s sort of like asking your husband if he notices anything different about your hair. Of course, he does now.  But did he before you asked?  He may not know for sure, or he may give the answer he thinks you want to avoid hurting your feelings.

The only person who ever mentions my scars is my father, for whom they carry such a burden of guilt.  He was at the wheel that snow-slushy day forty years ago when the car skidded into a telephone pole, and my face broke the windshield.

Over the years, he’s searched my face carefully and commented about how the lines across my cheeks have faded and become barely visible as if to reassure himself that the damage he caused his oldest child wasn’t so bad after all.

At some point early on, my father took me to a plastic surgeon to see if he could make the scars disappear, but the doctor, whose talent was in camouflaging, not erasing, said he couldn’t.

I didn’t mind.  My scars have truly never bothered me.  Whatever illusions I might have had about being beautiful had long since disappeared in the hothouse climate of high school cliques and popularity contests by the time I acquired this particular distinction at fifteen and a half.  If anything, my scars gave me a brief claim to fame in those first weeks when my classmates asked if I’d been scratched by a cat and my art teacher commented on the symmetry of the thirty-six stitches my doctor had used to close my wounds.

In my work as a psychotherapist, I spend hours in face to face conversation with my clients, probing the painful invisible scars they carry from the past.  I watch emotions play across their faces, like clouds and sunshine over a landscape.  They look back at me intently, wanting validation and fearing judgement, but they almost never ask about my scars.

I brought them up once, as a metaphor for healing, with a client whose father did intentional harm to her far worse than losing control of the car in a snowstorm.  When I asked, she said yes, she had noticed my scars.  But I don’t think she believed what I said about it being possible to heal her old wounds.  In truth I know that the invisible scars left by an abusive parent never fade as well as the once-bright lines on my face have.

For awhile I worked with juvenile delinquent teenaged girls at a residential treatment facility.  Their brazenly blunt inquiries, ‘What happened to your face?”, and their usual assumptions that I’d been ‘sliced’ in a fight bespoke a level of scarring by their life circumstances that had already compromised their development into healthy adults, even if they could manage to avoid future criminal behavior.

It seems ironic to me that few of my friends know how I got these scars.  I have no problem talking about them, but other than the occasional conversation about the importance of wearing seat belts, about which I am passionate, the subject never comes up.  Commenting about an obvious ‘flaw’ on someone’s body is apparently one of our few remaining taboos.

A friend I’d known for years did ask once as we cooled off in the community swimming pool. She’d noticed, she said, that I had scars on my face, but they weren’t visible when I was dressed up at social events.  She wondered what kind of make-up I used to cover them because she had a scar of her own that made her quite self-conscious.  I’m not sure if it was a disappointment or a relief to learn that I never use any make-up and that I had never noticed the scar on her forearm. Apparently evening light and a glass of wine really do blur the lines and soften the edges of life.

As I look at my scars today, I realize how lucky I am.  Lucky, of course, that the windshield shards did not pierce my facial muscles, and that the gashes coincide with my natural smile lines. But more than that.  Lucky to have a life where smiling is my natural state, where the life-changing events have been fortuitous, not damaging.  Lucky to have been born into a family where people feel guilty about causing accidental harm to each other.  And blessed to live in the company of others who know that the surface appearance is only a tiny piece of the essence of a person.

When I was sixteen, in 1963, I started working on Saturdays at my father’s Nash-Rambler dealership in Quincy, Massachusetts. Working part-time that summer was thrilling for me because I could spend more time with my workaholic father. It was also cool because all my friends had summer jobs every summer, and this was my first.

I learned how to count cash from my father’s accountant, Mr. Abraham. He taught me to intentionally turn each dollar over, alternating the green and black ones. The secretary, Louise, taught me how to enter accounts receivable and debits into a big, rectangular-shaped accounting book. The yellow pages were almost two feet long with narrow vertical columns. It looked like the original Excel spreadsheet.

The office where I worked was up a flight of stairs, overlooking the showroom. The ceilings were low, like an attic, and picture windows were on three of the walls.  Below, in the showroom, three or four shiny new cars were parked on display, and each of the three salesmen had a desk and chair.

There were three too-heavy-to-move metal desks with black fabric office chairs on wheels. Each desk was equipped with a dirty black dial telephone. Against the wall were several rows of steel file cabinets topped with stacks of yellowish-brown papers. Everything in that office, especially the fabric of our clothes and even the papers, smelt of exhaust.

One day, after I finished working, my father told me to pick up my grandmother at my aunt’s house in a nearby neighborhood. My paternal grandmother, Sitty, was getting a little eccentric in her old age. She was about seventy, and all she wanted was to be with her five adult children. But if she was at her daughter’s house, she wanted to see her eldest son (my father) and go to his house in Weymouth. When she was at our house, she wanted to see her youngest son.

I usually rode to work and back with my father, but on this particular day, my father pulled up in front of the garage in a used car. He got out, called me impatiently over to the car, opened the door for me, and said, “Get in and get going, honey. Your grandmother’s waiting to be picked up. Bring her home.” He left the car running, turned, and walked away.

I got in and inspected the interior. I can’t recall the make or model of the car, but I remember one odd thing. When I looked down, I saw that it had three pedals instead of two. I tested for my driver’s license on an automatic vehicle and had never even seen a standard shift before. Why would I need three pedals? I anxiously jumped out of the car and went to find my father.

“Dad, Dad.!” I caught him while he was still in the parking lot. “What is the third pedal for in that car you gave me?” I asked.

Not quite understanding, my father hastily walked back with me to the car. He was suddenly annoyed with me.

“Oh, for Christ’s sake. That’s the clutch, Mary.”

“But what’s it for, Dad?” I asked, clueless.

“Listen,” he said. “You just push down on it when you change gears and slowly release it.

“What gears?” I asked.

“Oh, Mary. I’ll show you.”

He got into the car and pushed the gear shift this way and that. Then he yelled,

“NOW GET GOING!”

With so few instructions, my dad had me convinced that driving a standard shift would be a sinch. I got back in the car, pushed down on the clutch, and shifted gears every which way until I finally got out of neutral. Lurching forward with a jerk and then chug, chug, chug, I somehow managed to drive the car straight off the lot, onto the main street, and all the way to my aunt’s house.

Sitty was waiting outside for me, standing beside an apple tree in the front yard. When she got into the car, she unfolded her faded, stained apron and revealed a pile of green apples that she had snagged from the tree. She offered me one, but I declined. She offered it again. I declined again. No way could I drive this stick shift and eat an apple. Besides, I was sweating profusely as I imagined all the things that could go wrong in the upcoming seven-mile drive to Weymouth.

It wasn’t so bad. I was cruising along, almost home, shifting the gears unevenly but sort of getting the hang of it. Sitty offered me an apple. “I can’t, Sitty,” I said.

Just then, I noticed heavy traffic up ahead. I shifted the car into neutral and stopped at the bottom of the steep hill on Route 18. I stuck my head outside my window and saw a policeman directing traffic up ahead at the top of the hill in the four-way intersection.  

As the traffic started to move, I clumsily shifted the gears, and suddenly, the car started rolling backward. I quickly jammed on the brakes and stalled right before hitting the car behind me. I had no idea why that happened. Meanwhile, the cars started to pile up behind me, and the policeman was blowing his whistle, rigorously waving at me to move forward.

I started the car and somehow managed to get it to move forward, again with a giant lurch. Exhaling. When just as I was cresting the hill, I saw the policeman put up his hand to stop the traffic going my way. Not knowing whether I had reached the top of the hill, I didn’t dare stop again. In slow motion, I drove right past the officer. I didn’t move fast because I heard him blowing his whistle frantically and saw him in my rearview mirror, coming after me. I decided to pull over to the side of the road where I knew it was flat.

 I sat waiting, worrying, and sweating like a farm animal. I had heard that anyone caught driving a standard shift with a license that said “limited to automatic” would get into big trouble with the law.

Scrunching my face, I looked at Sitty, sitting next to me, calmly holding her apron with the apples wrapped inside on her lap. One look and I knew I didn’t have to say we were in trouble. Her English was limited, though she had been in this country since 1910. She raised her eyebrows and smiled reassuringly at me.

The officer was young and angry as he approached the car window. In a loud voice, he said, “Didn’t you see my hand telling you to stop? Do you know what that means? That is a very dangerous intersection. . . .” He shook his head hard. “Let me see your driver’s license now.”

I handed him my license and said I was sorry.

“I wasn’t sure what to do. I’m driving my grandmother here, and I guess I wasn’t paying attention.”

The officer only glanced at my license and then handed it back to me. I could tell he was in a rush. But he started advising me to pay attention while I was driving, especially to “policemen.” I was holding my breath, waiting for the other shoe to drop about the “limitation” stamped on my license, when suddenly, Sitty got into the act.  

She leaned over me from her seat, squeezing herself between me and the steering wheel and waving a handful of the green apples taken from her apron. She smelled like cooking oil. I could hardly breathe as she reached toward the window, pushing against me and talking over the officer’s lecture. This wasn’t helpful.

“Eat Mama. Eat!” She said as she held out a handful of the apples at him, smiling like Wiley Coyote, “Here, Hadtha, Fadal.”

The officer finally stopped and turned his attention to Sitty, his face was cast in resignation. As he stared at Sitty, who was wearing a scarf on her head and missing her false teeth, he smiled graciously and made the common gesture with his hands to indicate to her that he didn’t want the apples. “No thanks,” he said. He paused for one more second, looked at me in frustration, looked back intently at the dangerous intersection, turned, and rapidly walked away.

I exhaled. Sitty had returned to her seat and looked at me with a knowing, satisfied smile. I released a choked laugh. Again, she offered me an apple from her apron. I wanted to accept it, but I needed both my hands to get us home. As I slowly pulled back onto Route 18, jerking and chugging, I kept glancing over at Sitty, loving her for coming to my defense.

I think every chaplain remembers her/his first family meeting. When I was in CPE training, I had heard of the potential family conflicts and emotional turmoil that can surround end-of-life decisions, such as what to do about “Mom?” I had even heard of brothers physically fighting in the hospital corridor.  When I was called to my first family meeting, I steeled myself to witness firsthand the suffering of a family in crisis. 

As an exercise in our CPE class, we were asked to prepare for end-of-life care by designating a health proxy, thinking about end-of-life concerns, and listing any treatment preferences on a Living Will form.

In this case, the patient had done everything required. He had chosen his wife as health proxy, and his Living Will was completed and neatly placed in his medical chart. As the chaplain on-call, I was unfamiliar with the patient’s unique family situation, which was complicating the case. The family meeting was called by the patient’s long-time physician, Dr. M. I planned to stay quiet at the meeting, listen, and learn. When I first arrived, the unit coordinator brought me up to speed.

The patient, Mr. D, was a 65-year-old Nigerian “tribal chief” who had suffered a long illness. Prior to his hospital admittance, he had been seriously ill for two years and cared for by his second wife, Jan. For the past two months, he had been on a respirator for life support in the Medical Intensive Care Unit (MICU) and was officially declared brain dead. His health proxy, Jan, held his Living Will, in which he had clearly indicated that he did not want to remain on life support under any circumstances.

Mr. D also had three adult children from his first marriage, who argued that their father would never have agreed to end his life. Despite the legal paperwork being in order, they maintained that in his tribal tradition, which they knew meant a lot to their father, a person isn’t dead until the heart stops. Causing the death of another was believed to be a great sin, and therefore, taking their father off life support would be tantamount to killing him.

The hospital staff could hardly ignore their protests, arguments, or position. Furthermore, the adult children had refused to accept Jan as the health proxy and accused her of forging their father’s signature on the document. Jan was outraged by the accusations of forgery and adamant about not betraying her husband’s trust or last wishes or being forced to.

Dr. M called the meeting to update Jan on the complexity of the situation. It took place in a small room on the MICU floor, with the following people present:  the patient’s wife, Jan, two nurse administrators, the caseworker, a social worker, and a nurse educator. Dr. M arrived last and introduced me as the chaplain on-call. We took our seats at the large round table.

I knew no one at the meeting. However, since the MICU was one of my assigned floors, I had passed through the pod on my daily rounds and saw the patient being treated. He wore an African dasheeki instead of a hospital Jonnie. He was a dark-skinned African with a sinewy build, though somewhat diminished, with pleasant facial features and thick, salt and pepper curly hair, tightly cropped. Through the glass doors, I had seen for myself that he was unconscious and expressionless. The nurse informed me that he was brain-dead.

Meeting Jan was a surprise in many ways. She was a petite Caucasian woman with a button-nose, slender hips, and barely 5 feet tall. I’d guess her age to be about 45. She carried a small patent leather shoulder bag, wore a Pendleton-plaid pleated skirt, and spoke with the mannerisms and refinement of a Connecticut Yankee.

In one hand, Jan was clutching her cell phone; in the other hand, a balled-up Kleenex. She had been sitting quietly at the table, but once Dr. M arrived, she released her pent-up outrage with surprising ferocity, slamming her hand on the table and crying to the doctor, “Can you believe this? They accused me of wanting to kill their father!”

She proceeded to tell us that her husband wanted to die “with dignity” and not remain on a ventilator. Frustrated, she cried, “He’s brain dead, for God’s sake. And, I have the proof of what he wanted, right here in his health proxy statement.” She laid out the proxy on the table.  “What more do they need?” 

After giving Jan her full attention and listening compassionately to her concerns, Dr. M spoke. She quietly explained that she had just met with the adult children at an earlier meeting. She’d made it clear to them that the medical team agreed that any further treatment of their father was futile.

As the novice at the table, I couldn’t imagine what Dr. M could possibly say or do to make this situation easier for anyone. But Dr. M was empathic, patient, and the model of a masterful communicator.

She allowed Jan to vent a little longer. Then, she explained that she had worked out a compromise with the adult children. But first, before telling us about the compromise, Dr. M pointedly took the time to speak directly to Jan as a trusted, reassuring family friend. She reminded Jan of her long relationship with the patient. She validated Jan’s love and dedication by reiterating that she had witnessed her caregiving throughout the long illness. Jan began to respond to Dr. M’s empathy and appreciation while thinking of the past two years and of her sacrifices.  Her rage turned into sorrow and tears.

In a more subdued self-righteous tone, Jan continued to argue her side. First, the patient’s adult children “didn’t really care about him.” She said, “I’m just so angry that they want to keep their father like this when I know he doesn’t want this. I don’t understand why we have to do this now, when I have the health proxy?”

Dr. M replied patiently, “I know that you have the right to speak for your husband and that you have his best interests in mind. You know him better than anyone. But no matter what I said … and I tried my best to get them to understand the state of his medical condition … I still had to hear what his children had to say.”
Jan said, “But do you know that they haven’t even seen him for two years? Not since we were married.  So, now they start coming around. What do they want to do this for?”

The nurse administrator spoke up, adding that she had seen families do this before. “Sometimes, people feel they have to make up for their behavior before someone dies. They may want to do something for their father as a final act of love, or maybe they are acting out of guilt.”

That got Jan riled up again, “They should feel guilty, given their behavior.” Dr. M quickly intervened, “We can’t begin to understand the complexity of your family relations at this time. But right now, we have to come to an understanding because your husband is not going to get any better. And he’s not going to like all this dissension in the family.”

After a calming lull, Dr. M described the compromise she had struck with the patient’s adult children. They wanted more time to say goodbye and gather their relatives and siblings together from around the country. They asked that their father remain on life support for as long as this would take, “about 24-48 hrs.” Dr. M avowed to Jan that her husband would die with the dignity he desired.

But Jan did not agree to the waiting compromise. This prompted Dr. M to say, “I’m actually very concerned about you, Jan. Do you have any family of your own to support you? Maybe you could take this same time to gather your family and friends to support you.”

It seemed that Dr. M’s genuine concern for Jan was the turning point of the whole meeting. Jan responded with her first smile, saying that her children from her first marriage, her sister, and her minister were on their way to Boston to support her.

Encouraged, Dr. M decided to make one final request.  She asked Jan and her family to limit their visits to the morning. She said that the patient’s children had agreed to visit only in the afternoon. This way, she pointed out, there would be peace at the patient’s bedside. Jan agreed to the schedule. When the meeting ended, Dr. M took me aside and asked me to remain as Jan’s ongoing advocate for as long as this situation went on. I agreed.

The 24 to 48-hour time frame turned into three weeks. The first week after the meeting, Jan was no longer the patient’s legal proxy but had been replaced by the patient’s middle son. Two weeks later, I met Jan and her sister in the pod’s family room. Jan introduced me to her sister, who thanked me for supporting Jan.

I continued to visit with the sisters as often as I could on my morning rounds. Without the legal proxy, Jan was like a different person, much less stressed. I don’t know for sure why, but she seemed relieved or, perhaps, resigned to the fact that she was no longer responsible for being her husband’s health proxy. Or maybe it was just the beneficial effects that came from having her family and friends around her.

At our personal meetings, Jan expressed her continued disgust with her husband’s children and repeatedly accused them of acting selfishly and being cruel. But she had held to the agreement by coming every morning and avoiding confrontation with the children, who came every afternoon. She also told me that her son had spoken to her husband’s children but was unable to change their minds.

As the days dragged on, I watched as the nurses vibrated the patient’s bed twice a day to help the patient’s circulation. The patient shook like a ragdoll. I also observed the patient’s children at the bedside or in the family room on the floor. They seemed content to allow the vibrating and were also sticking to the agreement. It seemed like a holding pattern was in place indefinitely.

There was one exception. I was passing through the MICU on my rounds when I looked into the patient’s room through the glass doors. On this day, I was taken aback to see Jan and the adult children inside the room at the same time, arguing heatedly from opposite sides of the bed. I couldn’t hear what they were saying, but the body language told the story of passion and aggression− bodies bent at the waist, necks extended, and the patient lying unconscious and helpless between them.

In one swift move, I entered the room and stood silently, waiting for them to stop and meeting each distorted face with a forced kindness. Once I had everyone’s attention, I spoke quietly and without equivocation, “We will now join hands (reaching across the patient) and say a prayer for your beloved husband and father.” 

Everyone immediately did as they were told. With all heads bowed, I led the families in the Twenty-Third Psalm. But despite my leadership and silent disapproval, the bickering resumed as soon as I left.

One month later, after more than 100 days, the patient was taken off life support and died. In this seemingly unique case, the questions of “pulling the plug” and having the “legal paperwork” were complicated by two families with opposing views.

In my subsequent reflections, I examined other complicated questions, such as the purpose and application of technologies. When should advanced technology be utilized, and for how long? I saw its purpose in saving lives and regaining a reasonable facsimile and quality of life enjoyed by the patient prior to being on life support. For some socially conscious patients, there are economic considerations concerning the cost of keeping someone on life support indefinitely, utilizing mechanical devices that can keep nearly every organ functioning. That cost in 2008 was approximately $45,000 a day, raising the question of whether these resources could be put to better use.

The list of questions for a person to ponder in advance of being on life support is long. For example, under what circumstances would you want to be resuscitated? Under what circumstances do you want to be hooked up to a life-support machine (s); if so, for how long? What would you do if your doctors agreed that further medical treatment was futile?  Under what circumstances would you want breathing tubes, feeding tubes, morphine, antibiotics, or food and water? 

We were advised in class to discuss these questions with our physician and close family. Answering them in advance does not mean that you can’t change your mind. You might think differently once you become seriously ill. But if you wait and become incapacitated, then your loved ones will need to decide what you would want them to do. This can be a burden on your family and be divisive, which is why discussing end-of-life care with those you love and trust is the best course of action.

I also reflected upon the “god” question, the one we are often told is impossible to answer. For instance, is there a chance that Dad will recover? As a believer, I have often wondered where God can be found in the throes of emotional turmoil. But I have discovered only one answer: that God is where God always is whenever we seek answers− deep within our hearts – there to help us decide what to do.

As for those who prefer not to discuss end-of-life care, the Qur’an reminds us that every living thing has an “appointed time on earth” and “when that appointed time ends—no one can postpone or advance it. Every living thing will taste of death …” (7:34)