One breath from death

Imagine standing at the bedside of an 80 yr. old man who has been diagnosed with ALS (a progressive, debilitating disease that destroys nerves and weakens muscles until breathing is impossible without assistance while the mind remains clear). Despite his weakness, he makes the same repetitive movements with this hands, until one of his daughters asks, "Do you want to write something, Dad?" He nodded and his daughter held a clipboard and paper while he slowly and clearly wrote, "Let me die." This is John's story of the poverty that our medical professionals are capable of inflicting on those who need them the most and the anguish that accompanies those "professional" decisions and actions. That poverty was diminished by the love, faith, and determination of John's family.

"John" had been rushed to the hospital from a nursing home when he experienced difficulty breathing. All but the most important paperwork accompanied him. There was nothing that mentioned ALS! Soon it became essential to assist John's breathing and the physicians explained that he needed to be intubated in order to receive enough oxygen to sustain life. Despite his advance directive stating "Do NOT Resuscitate" John indicated his permission to intubate and to place him on a ventilator.



Those who were with John when he wrote his request to be allowed to die, immediately asked for a meeting with his primary ICU physician. The following morning, five of John's sons and daughters gathered with the physician and showed him the clearly written request. They inquired as to how the removal of life support would progress. "John is receiving a great deal of sedation; I can't simply remove the endotracheal tube. Just think how John had still been able to walk and push your mother in her wheelchair even the morning that his difficulty breathing began" (a paraphrase of the physician response).He indicated that he would have to ask John if removal of the tube and ventilator was what he REALLY wanted.



The physician and John's family re-grouped in John's room. Standing over John and nearly shouting his words, the physician began by asking John how he was doing; he blinked his eyes. " Do you want that breathing tube taken out? You know we have turned down the ventilator so that you are taking the breaths and the machine is providing the force to breathe out for you. It's possible that you can return to pushing your wife in her wheelchair and resume your activities at the nursing home if we give this treatment time to work. So, do you want us to remove the breathing tube?" "DO YOU WANT TO DIE?" John looked at him and shook his head "No." Back in the conference room, the physician told the family that John had made the decision that he was obliged to honor and that he would remain on the ventilator.



John developed pneumonia. The medical plan was to perform a tracheotomy and an insertion of of a feeding tube through his abdominal wall and which would remove the endotracheal tube and present feeding tube and be more comfortable for John. The morning that the procedures were scheduled, John spiked a fever which did not respond to medications. Early in the afternoon, when the family visited him, John was on a cooling pad (the length of his body). He was shivering and trying to move his legs off the pad. It was obvious that he was miserable. John's gestures were frantic; the look in his eyes was one of confusion as to what was happening to him.



Several days later, John's fever was under control, but his pneumonia had worsened. He appeared to be weaker and he slept more that he was awake. He continued to initiate breathing, with the ventilator assisting in expiration. Once again, the family asked to speak with the physician. He agreed that John might require the respirator for the rest of his life. His family asked if the nursing home would let him return on a respirator and he indicated that they would not. They inquired as to where there might be a facility nearby that would take John. There was a nursing facility that would take ventilator dependent individuals for rehab. The longest he could remain there was a month! What then?? Was there a facility for long term placement? The nearest nursing home able to care for someone on a ventilator was more than an hour's drive away. His wife would only be able to see him occasionally.



Once again the family gathered together to discuss the options for their father and husband. They approached the physician the next morning with their decision to have John gradually weaned from the ventilator and to let him die in peace. This time, as the physician spoke to John, he told them how serious his condition was and that there was a great probability that he would never be able to live without a respirator. The two possibilities that he explained to John were remaining on the respirator or keeping him comfortable while respirator assistance was gradually lessened and he died. John signaled that he understood and plans were made to begin the process within the hour.



As the gradual reduction in ventilator support began, a priest friend of his family had been asked to pray with them. Everyone was gathered around the bed and the image of a large group of people, each wearing white garments and gathered before God was recalled from the Revelation to St. John the Divine. When asked who these people were, an elder responded that they were the ones who had passed through the great tribulation. John was assured that he, too, would soon be one of that multitude standing before God who would say to him, "Well done, good and faithful servant." John's monitor indicated the slowing of his heart rate and the lowering of his blood pressure. Everyone present had the opportunity to hold John and tell him how they loved him. Peacefully and painlessly, John slipped into the open arms of God. As the monitor indicated cessation of life, the priest began, "Eternal Rest grant unto John O Lord....." and the prayers of the family began as John was held in their loving arms and committed to God's care.



The first question which the priest and the Levite asked was: "If I stop to help this man, what will happen to me?" But... the good Samaritan reversed the question: "If I do not stop to help this man, what will happen to him?" Martin Luther King, Jr.



John's family never asked the question of the priest and the Levite. Although it was not verbalized, I sense that this was a huge question for the physician. Had John's family not been attentive to his wishes, he would be in some nursing facility; away from family and friends. He would not be able to speak and would be totally dependent upon others and machinery to sustain "life." John has moved now from the poverty of illness, fear of lawsuits that often dictate medical decisions, and total dependence upon others to a new life in the Presence of God.

The Poor in Long Term Care

During the three months that I have served as a chaplain in long term care, I have identified more individuals who are poor for reasons other than lack of financial concerns. Most of these women and men are living on "memory care" units. (think Alzheimer's disease for many of them).

This particular facility has placed chaplaincy/spiritual care, within the Recreation department! I was aware from the first interview that this person wanted me to plan, preside and preach for three Sunday services as well as manage the music, encourage nursing staff to bring residents to the service, and have time in between to run to the next unit and repeat the process! I questioned the wisdom of this plan and asked if we might instead, spread the three services out during the week. "No, they must be on Sunday."

My second concern regarding worship services was the benefit to those on the two memory care units. I agree that worship is important to many people through all stages of life, but I questioned the formality of the service rather than a more relaxed worship where there might be both group activity as well as time for individual and personal interaction. "No, they must be as I have said."

When does the in depth human interaction happen for most of these residents? I've observed the nursing assistants pulling residents in wheelchairs backward where there is no hope of conversation between staff and resident. I have also observed staff members all sitting together at the desk while 30 residents sit in silence in the recreation area, in full view of those same staff members.

Of course, there are staff members who have grumbled because I question the decision to turn a dying woman on her side and facing the wall making it next to impossible for anyone to get near her, hold her hand, speak softly to her. They are the same staff members who don't seem to understand that one need not be left with drool and medication on their chin because they don't know it's there.

My heart and soul ache for these residents. In less than 90 days, I have shown that a resident who mostly vocalized sound and not words, spoke clearly to me when I patiently encouraged her to "use words." She now perks up in her wheelchair and breaks into a smile when she sees me; we wave and smile at each other now.

On these units especially, the sermon is in the presence of Christ visible and tangible through those of us who extend a hand, smile at, speak pleasantly, show consideration and love, to them as would Christ and St. Francis. It is so natural to me, and so confusing to those who make the "rules."

The poverty resulting from lack of individual attention and concern, screams out through the blank looks of some, the uncertainty of people who do attempt interaction, the tears of a woman who spends her day sitting on a bench outside the unit's elevators. "There but for the grace of God, go I" I think to myself. "I'm not budging on this requirement for three worship services on Sundays," the Recreation director insisted. Why can she not recognize that worship and the lessons from the Gospels are being lived through kind words, smiles, a brief time sitting on a couch with a lonely resident....and so many others.

What I have learned is that the push for Sunday worship as described here, is the fulfillment of recreational "activities" during those times. If I don't lead a group activity, "someone would have to be hired to fill those times in order to be compliant." "Yes, and........."

We share the wonder and the love of God with everyone we meet when we celebrate our connectedness and share our experiences and feelings in friendly one on one conversation, an arm around a lonely resident, a question about their day, a wave to everyone in the dining room, a "dance" with a woman in a wheelchair........ Spirituality is about connectedness and that is the starting point in reducing the poverty experienced by many human beings.