My First Family Meeting

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)