Katherine McQuay Lewis: Did I keep my husband alive for too long?

Katherine, Alex and Dave Lewis in 2004, three years after he was diagnosed with head and neck cancer. Photo / Supplied by family

Opinion

When I finally had the talk with Dave about whether it was time to give up, he had already been away from home for 10 months - five in the hospital and five on the rehabilitation floor of the nursing home. He hadn't walked or spoken in all that time. Mentally, though, he was still with it. It was his body that had failed him.

The debate over the right to die usually focuses on an individual's right to end his life. But there is another issue: When does the struggle to stay alive no longer make sense?

When is the right time to let go?

My husband, Dave, had been diagnosed with Stage 4 head and neck cancer in 2001, when our son was just 6 weeks old. It was Dave's 55th birthday.

But we beat it. After surgery and radiation, the cancer was gone, never to return.

But the side effects of the grueling, twice-a-day radiation gradually destroyed Dave's health. First came the G-tube (a small feeding tube placed into the stomach, allowing nutrition to be delivered directly). A tracheotomy soon followed. There was a regular regimen of heavy prescription narcotics for chronic pain. There were also frequent hospitalisations, and many times we almost lost him. But Dave still drove our son, Alex, to school, ran errands, went with me to concerts and movies, and lived to be with his family.

Then came the day when Alex, who had just turned 13, found Dave unconscious. The EMTs suspected that a mucous plug had blocked his trach while he was sleeping, and he was rushed to the hospital. He never came home again.

The doctors in the intensive care unit gave us very little hope. But after two days in the ICU, Dave once again confounded all expectations and opened his eyes. As weeks turned to months, however, everything that could go wrong, did: a lung infection, a staph infection, wildly fluctuating blood pressure, and oxygen levels that would quickly drop to almost-fatal.

A pattern soon emerged: Dave would start in the ICU, improve enough to be moved to the step-down unit, then graduate to a regular room. But then there would be another crisis, and the pattern would repeat. The cycle continued for five months.

The cruelest blow was that once he entered the hospital, Dave lost his ability to talk. He had been very difficult to understand before, because of the trach. But whether it was the inability of his damaged lungs to push out oxygen or the combination of a different trach and a damaged voice box, he never spoke again.

Dave also hadn't walked since he entered the hospital. The initial efforts at physical therapy were sporadic, at best. Eventually so much time had passed, and he was so weak, that all efforts proved futile.

Then, about three months into his hospitalisation, something happened that I didn't understand the significance of at the time. One night, Dave was put on a ventilator to help him breathe. Okay, I thought, whatever it takes. Gradually, though, he was on it every night; then sometimes during the day. Before we knew it, he was on it more often than not.

Dave's poor body was falling apart, with his weak, damaged lungs being the worst of his problems. But it was hard to get a clear understanding of the ultimate prognosis. There was no "case manager" - no one to sit down and say, "Here's the deal." So we lurched from crisis to crisis, still hoping that - as had always happened before - Dave would get well enough to go back home.

After five months, the hospital social worker was practically pushing us out the door. But because Dave didn't have the strength for a true rehab facility and because we needed a place that took patients on ventilators, the only option was a nursing home with an in-house rehab.

So we moved. And call me crazy, but I actually had hope that Dave was going to be engaged in rigorous physical therapy, get back on his feet and come back home. But after just two weeks, the physical therapist said that Dave wasn't making any progress and they were stopping PT.

Of all the terrible blows over all this time, that was the toughest to take.

But on we went, with me trying to visit Dave every day before or after work, feeling guilty that I couldn't stay longer, feeling guilty that I was leaving Alex alone so much and generally feeling helpless and hopeless.

Dave was still regularly rushed back to the hospital. Sometimes it was pneumonia; other times it was plummeting oxygen levels or skyrocketing blood pressure.

Dave Lewis with his son, Alex. At age 13, Alex found his father unconscious. Lewis was rushed to the hospital but never returned home. Photo / Supplied by family

It was around this point that I started telling Dave that he didn't have to keep doing this for us, that if he was ready to quit, I understood.

But he wasn't ready.

By this point there was a chorus of voices (family, friends, the palliative-care doctor, the nursing home doctor, the social worker) urging a move to hospice. But here was the problem: Ventilators are considered life-prolonging, so most hospices don't allow them. The goal of hospice care is maintaining patient comfort - not prolonging life when the patient is terminal; and because of Dave's steadily deteriorating lungs, he was terminal.

So hospice meant going off the vent, and going off the vent meant Dave would die. And that wasn't an outcome either of us was ready to face.

Dave did have a living will and an advance directive. But they had been written years ago, before the feeding tube and the tracheotomy. So they were meaningless, because Dave had already elected to go beyond what he had originally wanted.

There did come a point when I bowed to pressure and talked to the head of the local hospice. He came and talked to Dave and called me that night to tell me that when he asked Dave if he was ready to quit, Dave shook his head no.

Great, I told him. That's what I've been trying to tell everyone. Case closed.

Here was the thing: It wasn't like Dave was in a vegetative state and we had to decide to turn off the vent. He was awake, he was alert and he didn't want to die.

So life (such as it was) continued.

Dave was glued to the television 24/7; it was all he had. And I knew he lived for my visits. He lit up every time I walked into the room.

People asked, "What kind of life is that?" They'd say, "I would NEVER want to live like that."

Dave didn't want to live like that, either; but for him, it beat the alternative.

By this point, my only hope was that Dave would pass away naturally - to live until his body just shut down. But the fact was, because of the vent, we had passed "naturally" a long time ago. The vent was keeping him alive.

Then there was the money.

I never wanted our decisions to be about money. And I naively assumed that because we had long-term-care insurance, we were fine.

We weren't.

I learned that our long-term care insurance had a daily limit, a limit Dave way exceeded because of the vent and a hundred other miscellaneous charges. So my out-of-pocket was going to be $20,000 a month.

I suddenly saw the very real possibility of our savings, Alex's college fund, our retirement - all gone. But still, how can you put a price on a life? Even a life that was barely a life?

After four months at the nursing home, things had grown dire. Both the trach and the feeding tube were leaking and could only be repaired surgically. But the one time they had tried to surgically repair the feeding tube a few months before, we almost lost him. He wasn't strong enough to withstand an operation. So Dave was now getting less and less nutrition absorbed into his body every day. My 6-foot-2 husband was down to 130 pounds.

Then, the next month, came the beginning of the end. Once again, Dave had been rushed to the hospital. Once again, his family gathered around, believing this was it. And once again, Dave pulled through.

But this time, Dave's brother pulled me aside to say that we couldn't keep putting Dave through this anymore. Through tears, and for the first time, I agreed.

In Dave's hospital room the next day, crying so I could barely get the words out, I asked him if he was ready for hospice. Wiping my tears away with his hand, he nodded.

Two days later, we moved Dave to hospice and removed the vent. He lived just another three days.

End-of-life issues prompt strong responses.

All I know, now, is that until you live through it, you have no idea how you will feel. And that there are no right answers - only bad choices and worse choices.

I look back sometimes and torture myself with questions: Did we keep trying for too long? Or did we give up too soon? But I remind myself that it's wrong for the person I am today to judge the decisions I made back then. It's like having someone on dry land telling the person in the middle of a tsunami how she should be feeling. I was in the midst of an emotional tsunami back then, and I have to believe I did the best I could with what I had.

There were many days throughout those 10 months when I thought, "I cannot do this one more minute. I am emotionally and physically exhausted, Alex is suffering, and I cannot possibly do this one more day."

But now all I wish for is one more day; just one more day when I could leave work early, go to the nursing home, turn on Turner Classic Movies and hold Dave's hand as we watched the good guys win, true love conquer all, and another happy ending as the music swelled and the credits rolled. Just one more day with him; that's all I wish.