When my 82-year-old uncle had a heart attack in the kitchen of his home, I was on the next plane to the East Coast. No one knew how long his brain had been deprived of oxygen before he’d been resuscitated. As I stood next to his bed in the hospital’s ICU, I feared that my uncle would not make it. I learned that he’d suffered a second heart attack shortly after his admission. Robert was on full life support and dialysis, had congestive heart failure and renal failure.

Before my mother’s funeral in 2001, I had no idea I had an uncle. She’d been adopted at birth and two years before her death she divulged that she’d sought out her biological parents 25 years earlier. Her search turned up a biological brother, the only sibling she had, and the only other family of origin of mine. I met Robert for the first time at her funeral. We developed a caring relationship over the next ten years and discovered we had common interests, even a similar temperament. I enjoyed him immensely.

In the hospital, I waited for Tom, who was like a son to Robert. They had been best friends for 30 years and were every bit as close as anyone who shared DNA. When he arrived, I could see the worry in his eyes, concern over whether Robert would survive. My uncle had no other family except for the two of us. We met with his physicians and nurses and discussed the planned treatment.

After I returned home, Tom and I developed a kinship through daily texts and phone calls about my uncle’s status. Repeatedly, I heard Tom’s anguish over Robert’s lack of improvement, the unsuccessful attempts to wean him off the ventilator, and the onslaught of antibiotics and medical treatments. Tom was particularly upset about the staff’s refusal to give Robert stronger pain medication than Tylenol and the occasional tramadol. The reason, they explained, was because of his fragile lung condition. With two torn rotator cuffs, I couldn’t bear the thought of my uncle in that kind of pain. I called his internist. He never returned my call.

A few weeks into his ICU stay, Robert developed sepsis, pneumonia, and stage 3-4 pressure ulcers. His lungs collapsed on two separate occasions. He remained on the ventilator and now had the feeding tube inserted directly into his intestines. Acting on my uncle’s behalf, Tom urged the doctors and nurses to give Robert stronger pain medication. They explained that anything stronger could compromise his already frail lungs, threatening his life.

After 30 days in the ICU, Robert was transferred to a long-term care hospital (LTCH). Robert’s doctor insisted “they had the expertise to wean him off the ventilator.” This began an inconceivable nightmare. The repeated efforts to withdraw the ventilator were unsuccessful. He developed an additional lung infection and still had active pneumonia and sepsis. Robert remained on full life support.

One afternoon, I received a call from Tom. He had just visited Robert who had been a little more awake than what had become the norm. After seeing him wince repeatedly, Tom asked him if he was in pain. Robert nodded and mouthed the word, “morphine.” For my uncle to convey, “morphine,” the pain must have been excruciating. He was a strong, determined man who was adverse to any kind of medication.

That scenario drew my tears because I then understood that Robert had crossed his pain threshold. That kind of suffering is just unacceptable under any circumstances. I directed Tom to the LTCH’s website and we both looked up patients’ rights.

Climbing the chain of command at the LTCH, including the physicians, Tom cited the hospital’s list of patients’ rights, indicating which were being denied. He pleaded for stronger pain medication for Robert. His request was refused.

Seven weeks into his stay at the LTCH, Robert was unable to move, his body ravaged by disease, organ failure and extreme pain. He was now only able to blink and occasionally turn his head a couple of inches. Tom was beside himself with worry over Robert’s critically ill status and persistent pain. Conversations with his doctors revealed that they all believed there was no hope for my uncle’s recovery and that he would never progress beyond where he was now.

Tom and I agonized about Robert’s medical treatment and where it was headed. His advance directive stated that if he had an incurable illness and was put on full life support, that it was only to be withdrawn if he were in a persistent vegetative state. When he wrote that living will, I suspected he’d known about Nancy Cruzan and Terri Schiavo and wanted to direct his own care in the end of life. Both Tom and I knew that prolonged, aggressive medical treatment with no cure in sight was not what Robert had actually intended.

Unfortunately, Robert had not appointed a formal health care proxy or surrogate decision-maker in his advance directive. Even with the doctors’ consensus that Robert had no quality of life and no hope of recovery, the LTCH insisted that he remain on the ventilator because technically he was not in a persistent vegetative state. He could still blink and move his eyes.

In a phone conversation a few days later, Tom’s desperation was palpable. “I can’t stand to see him suffering like this,” he said. “It’s just awful. He looks like a torture victim.”

I felt sick inside, wishing I could help my uncle. “I’ll fly out again tomorrow morning,” I said, determined to help.

Tom insisted that I wait. He said that he’d spoken to Robert’s attorney and had discussed the possibility of an emergency court hearing to have himself appointed as Robert’s guardian so he could override his living will. “If it comes to that, fly out then. I’ll need you in court.”

I agreed.

Requests for meetings with the LTCH’s bioethics committee were ignored and Tom continued his discussions with the hospital administrator. She denied his plea for stronger pain medication for my uncle because she said it could force Robert’s lungs into collapse again and the hospital could not take that risk. She then directed Tom to the LTCH’s legal team.

The legal team?

It had come to this? What is wrong with our system? I called the hospital administrator the next morning. She claimed she was legally bound by Robert’s living will because it was so specific about the legal term, “persistent vegetative state.” I then asked her about the possibility of transferring my uncle to hospice. She said that any hospice would interpret his living will in the same way.

“But he’s suffering,” I said. “This isn’t right. Keeping his body alive on machines is just cruel if he’s not going to recover. He’s in pain.”

She said, “I know.”

I called Tom and recounted my conversation with the administrator. We both exhaled in frustration. Tom had visited Robert that afternoon and encountered one of the nurses cleaning his pressure ulcer wounds. He’d asked her if Robert had been given pain medication, as this procedure can be quite painful. The nurse told Tom she’d given him Tylenol.

The next day, Tom met with the attorney for an emergency hearing so he could be appointed guardian. It never came to that. Shortly after a heated altercation between Tom and the LTCH administrator, my uncle was transferred to hospice. Neither of us understood why that transfer occurred then. Robert died immediately. I was deeply saddened but grateful that he was finally out of pain.

I suppose we’ll never fully understand why the LTCH refused to act humanely, putting defensive medicine before a patient’s right to die with dignity and the right to comprehensive pain management. I also realize that how my uncle stated his end-of-life wishes greatly affected the outcome of his care. But what is the answer? To craft living wills that encompass every conceivable scenario? To dispense with living wills altogether?

Martine Ehrenclou is a patient advocate.  She is the author of Critical Conditions: The Essential Hospital Guide to Get Your Loved One Out Alive and The Take-Charge Patient.

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