Relationships
My Patient’s Life as a Quadriplegic
He lived half of his life on a ventilator.
Posted January 12, 2022 Reviewed by Lybi Ma
Philip, a 29-year-old auto mechanic, was rendered quadriplegic from a tumor in his cervical spine almost 30 years ago. His father, Tom, devoted his entire career to saving lives as a fireman. Helen, his mother, regularly greeted patients as a receptionist in a doctor's office. Together, they, along with family members, gave up all personal pursuits to care for Philip in a newly configured ranch home, as colleagues of Tom from the fire station devoted weekends to build ramps so that Philip could easily navigate in his new motorized wheelchair, maneuvered by a sip-and-puff apparatus that he quickly mastered.
Siblings, nieces, and nephews frequently visited and shared in the caring and loving. Friends donated equipment that insurance didn't cover and the family could not afford. Multiple healthcare providers, including nurses, wound specialists, respiratory therapists, and physicians, worked as a team to provide care for Philip in the home. His loss of the ability to perform activities of daily living, coupled with the loss of dignity related to personal hygiene and a total dependence on others was emotionally painful. However, with the passage of time, he adjusted and adapted to his new existence. Although there were hard days to be sure, Philip became content with his lot in life, a life still filled with the joy of a kind and compassionate family, his ability to speak, hear, see, enjoy food, and control a motorized wheelchair.
In recent years, Philip’s primary problems were related to infection from pressure sores and deep wounds requiring abscess drainage. As a quadriplegic, despite best efforts to turn him frequently, pressure on his skin remained a major challenge. The skin is a vital organ that separates our internal structures from hostile bacteria on the surface of the skin. With skin breakdown, bacteria invade, multiply, and destroy deeper tissues. Abscess formation leads to dissemination of virulent bacteria into the bloodstream. This process may culminate in deadly septic shock. Philip had multiple bouts of septic shock related to these incurable, deep-seated bacterial collections. I worried that ultimately Philip would develop a deep wound infection with resistant bacteria leading to refractory septic shock, cardiovascular collapse, and death.
After more than 25 years as Philip’s physician, I marveled at his extreme courage as he faced the daily challenges of loss of mobility, dignity, and intimacy and was able to find meaning and purpose through close relationships with parents, siblings, nieces, nephews, healthcare providers, and friends. Philip’s parents, siblings, dedicated nursing staff, and respiratory therapists remained constantly at his side in their efforts to help him get through each day with unending love and the ultimate virtue: compassion.
Philip never talked about dying. When necessary, he reluctantly agreed to hospitalization for management of life-threatening infections. During hospitalizations, he always expressed interest in returning home as soon as possible. It was evident, though, that after a journey starting in 1992, just two years after President George H.W. Bush signed into law the milestone Americans with Disabilities Act, Philip's condition declined. The frequency of life-threatening infections increased and the risk of death became more looming. Philip's priority was to avoid suffering. He was at peace in his belief that he would one day be with God in heaven.
It was a bitter cold, but bright sunny Sunday in February. Philip's blood pressure was dropping. Certainly, he was experiencing another bout of sepsis from a deep-seated wound infection that was leaking deadly bacteria into his bloodstream. Another trip to the hospital was urgently needed for a drainage procedure by interventional radiology. Although we knew the infection would never be cured, another temporary fix could likely be accomplished. Philip had been through this type of deterioration so many times but the frequency was increasing. After another discussion with Philip regarding his goals, priorities, and what was an acceptable quality of life, he made it clear that the burden/benefit ratio for him had changed. He no longer wanted to leave his home where he was constantly surrounded by loved ones. It was during the COVID-19 pandemic of 2020. Hospitalization meant days of isolation without family members.
Philip and his parents were clearly aware of the ramifications of his decision. Without hospitalization, he would not survive very long. After living as a quadriplegic for 29 years, with awareness of his limited chance of survival, he had become content to live his remaining days at home, supported by his family and nurses. Although I speak of his years of survival, it must be said that he hadn't just survived, he thrived, he enjoyed, he loved, and was loved. He lived a life filled with meaning and purpose by showing so many how to face great adversity with courage and strength. He helped so many nurture compassion, kindness, empathy, and love.
As the next several days passed, Philip became unresponsive. Although morphine and Ativan were available to relieve pain, breathlessness, and anxiety, it never became necessary. As the bacteria continued to multiply exponentially and invade through the bloodstream, his bodily organs continued to fail. His urine flow stopped as his kidneys no longer functioned. His blood pressure continued to plummet as his heart cells could no longer work in synchrony to squeeze oxygen-carrying blood cells to his vital organs.
At 3:45 a.m., three days after Philip's blood pressure began to deteriorate, Tom was awakened by an alarm signaling Philip's last heartbeat. A heart that had contracted for 58 years no longer functioned. When EMS arrived, they confirmed that Philip had passed away. The ventilator that had pumped oxygen into Philip's lungs for 29 years was no longer able to sustain life. The mechanical sounds of his breathing apparatus could still be heard but were of no value. Without a beating, contracting heart, oxygen delivery was no longer possible. The ventilator was turned off.
I had the great honor of delivering Philip's eulogy. I recounted the life of a courageous soul who lived half of his life on a ventilator. A life many could not fathom nor accept. Yet it was because of a loving compassionate family who sacrificed so much that Philip found 29 years on a ventilator as a quadriplegic well worth the journey. And I am blessed to have known Philip and his family, to have been his doctor and friend, and to have learned so much from all of them, all these years.
