For one family, organ donation offers a bittersweet ending

September 2, 2013

My 55-year-old brother-in-law, Vince, had arrived at Howard County General Hospital’s intensive care unit late Saturday night. Sunday morning, the police called us: Vince was in critical condition, and we needed to come to the hospital.

Before we could get there, the police called again. I asked the officer whether “critical condition” meant life support, and he said that it did.

Because I write about end-of-life issues, I thought I might have some insight into what we were likely to face. More than that, I simply wanted to be there for my husband, Erik, and his family.

By the time I got to the ICU, Erik and his younger brother were hovering near the doorway, while Vince’s girlfriend stood at his bedside, crying.

A tube ran from Vince’s mouth, held in place by heavily padded clamps on his cheeks and bits and pieces of tape. His chest moved rhythmically up and down. Other tubes snaked out from under the sheets. Monitors tracked his vital signs: blood pressure, respiration, oxygen saturation. Having read that even the most severely injured people may still hear, I set my iPhone on Vince’s pillow and played Joni Mitchell’s “Blue.”


The family of Janice Lynch Schuster’s brother-in-law, Vince, decided to donate his organs. (Family Photo/Family Photo)

Vince had a very small scrape on his forehead, covered with a butterfly bandage. We’d been told by the police that he had suffered a fall — but clearly something more serious was involved. We later learned that paramedics had restarted his heart three times en route to the hospital from the parking lot where he had collapsed.

Over the next few days, family members and friends kept a vigil at Vince’s bedside. Nurses came and went, changing bags that fed the IV lines, drawing blood, checking his vitals. It was becoming clear that we would soon be faced with decisions not about his future but about whether to end life support.

Like so many Americans, Vince had no advance directive and had not named a health-care decision-maker. In such situations, Maryland law designates decision-makers, starting with next of kin. In his case, that meant the responsibility would fall to his only child, Tory, who at the time was only 23.

Tory was among those who kept vigil as we awaited word from the neurologist about Vince’s prognosis. When he finally arrived on Monday, the doctor began what seemed a peculiar sort of ritual. He shook Vince’s sternum and shouted his name, loudly; he poked and pressed and prodded, and performed an array of tests, all designed to gauge whether his patient was brain-dead. I tried to steer Tory out of the room, but she stood with her hands in a meditative pose, eyes closed, calm.

A complicated process

At the end of the exam, the doctor explained that by all indications, Vince had probably suffered brain death. His fall had likely been precipitated by an aneurysm, which can lead to massive bleeding in the brain.

Although Vince’s condition met almost all criteria for brain death, the concentration of sodium in his blood was slightly low. To meet legal and medical standards for confirming brain death, that number needed to reach a certain level. Extreme levels can mask the signs of core neurological functions and lead doctors to conclude inaccurately that a patient is brain-dead. This process would take several more hours of IV fluids.

So we were faced with a choice: Continue the fluids or ask that he immediately be removed from the ventilator right away, an action likely to lead quickly to his death.

While we contemplated what to do, the doctor asked if we would meet with representatives from the Living Legacy Foundation, a nonprofit that arranges for the donation of organs from patients dying in Maryland hospitals. We said yes. In situations like ours, foundation staff members come to the hospital to talk to families; they are not employees of the hospital.

Within 30 minutes, two Living Legacy staff members led me, Erik and Tory to a conference room. Erik and I are both registered as organ donors through the Maryland Motor Vehicle Administration. My decision had been simple enough: What use would I have for a body no longer alive? I had never considered what would really happen or how complicated the organ donation process could be. A book I co-authored, “Handbook for Mortals: Guidance for People Facing Serious Illness,” devotes just two paragraphs to the subject, mostly about the benevolence of being a donor. As it turns out, it requires a benevolent family, too.

Now, in a windowless conference room we sat dumbstruck by the enormity of what we faced.

Although the neurologist’s tests indicated that Vince was probably brain-dead, Maryland, like most states, requires that physicians examine core neurological functions of the brain, such as breathing effort, pupil size and response to deep pain and cold, according to Jennifer Gelman, communications director at Living Legacy. To ensure the accuracy of these tests, best practices require that all metabolic and electrolyte levels in the body, such as sodium, are within normal ranges.

Administering fluids to restore certain electrolytes to a minimum level was part of this process. Once this level had been reached, imaging tests, as well as a repeat of the neurologist’s tests, would be performed to ensure that there was no blood flow to the brain. At that point, brain death could be declared.

With Tory’s decision, life support would continue while the organ donation process began. Once the safety of his organs had been verified, the Living Legacy staff would alert the University of Maryland Medical Center and Johns Hopkins University Hospital — the state’s two designated transplant centers — that organs would be available. One of these programs would send a surgeon to retrieve the organs and, in all likelihood, transplant them within hours.

Reality sets in

The horror of our situation slowly set in: We needed to agree to keep Vince on life support for another day so that his sodium concentration could be brought to the level required for brain death to be declared. This would give Living Legacy and the transplant centers time to organize surgical teams and recipients. If we opted to remove the ventilator immediately, this process might have been compromised, and successful transplants might have been less likely.

Surprisingly, choosing to donate Vince’s organs would put him among a small minority in Maryland. Only 142 Marylanders were organ donors last year. (That figure does not include living donors, who provide such organs as kidneys.) Meanwhile, roughly 2,300 people across the state wait for organs, as do more than 100,000 Americans nationwide, according to Living Legacy.

For organ donation to happen, a person must die on a ventilator in a hospital, Gelman says. And so although more than half of Maryland’s residents have offered to be organ donors, only 3 percent of all hospital deaths meet the criteria for organ donation, which includes being on ventilator support and having a severe neurological deficit. (Although tissue donation requires that certain safety standards be met, the process is somewhat less complicated than that of organ donation, and it can happen if, for instance, someone dies in a car crash. As a result, the number of people who donate tissue — corneas, skin and bones — is higher.)

The Living Legacy representatives left us to talk. Tory spoke first. “My father was a generous man,” she said. “Even when he had nothing, he gave whatever he had to others to help them. This would allow him to do that.” Erik and I nodded. Tory repeated that her father’s life had been driven by his sensitivity to the needs of others.

“You know, if we do this, if we agree to this, then some family will receive news that they have hope at last for a better life. They will wake up, after years of suffering, and have hope again, finally, for the future. That would be Vince’s gift to them,” I said.

Tory nodded. “That is how my father lived. That is what he would have wanted.”

And so, that is what she did.

Our family gathered at the hospital the next day, Tuesday, and we found a quiet table in a sunny spot. We each said goodbye to Vince in our own way. His official time of death was 3 that afternoon; the surgeries began sometime after dawn Wednesday morning. By Thursday, a 25-year-old man and a 43-year-old woman had received his liver and his kidneys. Later, a 22-year-old received a cornea. In the months ahead, dozens of other people in the region will benefit from Vince’s bone and tissue. As painful as it was to let Vince go, we continue to take solace knowing that his generous spirit, imbued in his daughter, allows others to live.

health-science@washpost.com

Lynch Schuster is the senior writer for the Altarum Institute Center for Elder Care and Advanced Illness in Washington.

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