Atul Gawande, who teaches surgery at Harvard Medical school and writes for the New Yorker, walked his father through the last chapter of his life.
His father was also a surgeon and a few years ago he had some tingling in his hands, didn’t think much about it until it got worse and he started having neck pain and couldn’t sleep easily at night, and he started having trouble finding the loop in his sutures.
He went for an MRI. The image, which they could download on their laptops, showed a tumor growing inside his spine from the base of the brain down to the base of the shoulder blades. It had obliterated enough of the chord that it was surprising that he wasn’t numb and paralyzed.
It was a very rare occurrence. As they sat there, neither father or son could actually figure out how something like that could be operated on. So they did the next best thing and called a neurosurgeon at Harvard and another at the Cleveland Clinic. Less that a dozen cases like this had been treated.
They go to the first neurosurgeon in Boston, who tells them that he would operate right away, that left untreated he could become quadriplegic in a matter of weeks. There were risks to the surgery, and he wouldn’t actually be able to eradicate the tumor, just shrink it or decompress it. It had the immediate effect of filling the room with fear.
They fly to Cleveland, where they get a more ambiguous picture. Tumors like these, says the doctor, can grow quickly but they can also stay the same for a very long time and that he should experience this list of symptoms in this order if it starts growing again. The physician thought that the chances of becoming quadrapelegic were about 1 in 4. He told them that he could operate now or wait until the symptoms increased.
These are the two best options from the two top experts. What do you do?
It is interesting that even these two doctors, who are pretty expert in their own fields of medicine, couldn’t really understand how such a surgery would exactly work and how they would address complications. They were only degrees better informed than any of us would be.
An informed answer to this question, as it turns out, is not simply medical. It is also emotional and spiritual. It is a question that you answer in light of your values and your immediate goals, your fears and trying to sort out what you can live with and what you want to avoid at all costs.
Atul remembered the way that he has seen this change in his patients over the year as their perspective has changed. And that perspective was the consequence of how long they perceived they had to live. All of us when we are young, spend time networking, building a career and a reputation, searching for a mate and friends.
But as one of them put it, remembering her encounter with a life threatening illness, “When I looked at what was important to me, very different things mattered.”
Ambition and vanity quickly recede to the backdrop. People matter. Comfort and companionship matter.
And the other thing that Atul learned through watching his father go through this ordeal was that people in terminal situations have modest goals that can be achieved. Up until recently, we hadn’t really bothered to stop and ask people about those. Simple things that can be achieved.
If we are lucky enough to live a full complement of years and most of us will, we face an ever shrinking range of options that are under our control but we can achieve them.
Atul’s father decided against immediate surgery. He waited until the symptoms progressed. And that doctor turned out to be right. Did he pick that option because it was the more optimistic one? Less fear inducing? It is hard to know.
It made him more intentionally reflective. He decided to stop practicing medicine, visited his grandchildren more often, planned an extra trip back to India to see his family, and he got more involved in making sure that the college he started outside his home village would carry on for the future.
In short, he started to subconsciously solidify his loyalties. Who is important to you that you want to spend time with? What is it that you want to outlive you that you are investing your energy in?
That is a good window in to your values, what you stand for, what you are about.
Months went by. Eventually his symptoms worsened. He called his son, the physician. Perhaps we should have that surgery now.
His son decided to have the harder talk with his Dad. After surgery, what are your goals? He asked his Dad. His dad wanted to finish his volunteer work on the college in India and he wanted to visit it if he could.
What are you willing to trade-off? He asked him. Patients will surprise you with their answers. For some being able to watch TV would be enough, if the surgery didn’t turn out the way they’d hoped.
His Dad said that would not be enough for him. He needed to interact with people. More than anything, he just didn’t want to become quadrapalegic and have other people have to take total care of him. He needed to be in charge of his world and his live. Imagine a Surgeon, the quarterback of the team, saying something like that?
He didn’t want to be intubated. He didn’t want feeding tubes. Dr. Gawande said he posed those questions to his father in great fear, perhaps that they would cause anger in his Father or his Mother, perhaps depression. What they actually produced when he asked them, was clarity and relief…
They decided to do the surgery and went to the Cleveland Clinic. They are in the waiting area, about an hour into the surgery, and the chief surgeon came out. His dad was having heart issues. The doctor could stop or proceed.
What should he do? Atul remembered what his father had told him that he was more worried about becoming a quadrapalegic than dying, so he asked the Doctor, ‘What will decrease his chances of becoming quadrapalegic, stopping the surgery or proceeding with it?’ It was a good question. It reflected the fact that his father was less concerned with dying than with being a burden on others and it was a question that the Doctor could answer.
The Doctor went back into surgery, higher chance of death but less chance of being paralyzed.
He made it through the surgery, no loss of sensation, no damage to his heart which was a big relief. The tumor was a relatively slow growing cancer. It could be treated with chemotherapy and radiation. The Doctors recommended it. These treatments could not stop the cancer but they could slow it down.
He reflected on these options and decided to forgo chemotherapy as making him too weak for the benefits that it would provide and he opted to go have radiation treatments because they were limited to six treatments over six weeks.
Turned out there were a lot of side effects from the radiation treatments. He got stabbing back spasms, a real pain in his throat, low level nausea and he lost his sense of taste, so he had no desire to eat. He lost 23 pounds, had a ringing in his ears, and was subject to vertigo, and numbness in parts of his body. And the drugs that they put him on to treat some symptoms caused him to hallucinate, not pleasant.
To boot, the tumor kept on growing anyway. Atul’s Mother was angry that the treatments did not bring the promised results. His father was just silent, almost resigned. And he changed the subject. He wanted to know about his grandchildren. His horizons were narrowing, his loyalties more focused.
The oncologist was suggesting that he do a round of chemotherapy and she laid out options with statistics next to each of them that were dizzying enough that even two Dr.’s had a hard time understanding them.
Perhaps because he was a physician, he had the presence of mind to also ask, ‘what if I do nothing?’ And the doctor described a list of symptoms of failing health.
Atul had the presence of mind to ask, “what is the range of time that you have seen on cases like this, the shortest time you’ve seen someone live and the longest.” The doctor became squirmy. It is a question they don’t like to have to answer. “3 months on the short end and 3 years on the other end.”
And he followed up with another good question, knowing that the side effects of chemotherapy would diminish the values that his father had already described, wanting to be conversant with those he loved. He asked,” how would the chemotherapy treatments change the time span?” And the doctor said, it wouldn’t but it would push it towards the longer end towards 3 years.
“Now he was torn between living the best he could with what he had versus sacrificing the life he had left for a murky chance of time later.
“… In the old days, the decision was simpler, you just too the most aggressive treatment available and the only thing we generally feared was doing too little. Today it is not so clear, even as we have more and more options.
Then he started falling at home and the EMT’s were even called. Atul could see his father was becoming progressively more paralyzed. At one point, his mother suggested that he start the chemo. “No” was all he said. He had too many side effects now. How should they take care of him given that he was not fixable?
Atul’s mother was also a physician and he said that between the three of them, they had 120 years of medical practice, and how to proceed eluded them.
Finally, his father called in hospice. And Atul called a local agency that was much like SAGE in our area, providing services for the elderly and the infirm, only theirs did even more things than SAGE does.
A hospice social worker came over, told them what medicare would cover with hospice, a physician, medications, nursing emergency support by phone, a health aide to stop over and clean him up regularly and help organize what he needed, chaplain and he could quite it at any time.
She turned and asked him what his concerns were. And he said he wanted to stay strong while he could, to type and email and Skype with his family. And he didn’t want pain.
His range of options were decreasing again, as he was in a wheel chair more and more so he wouldn’t fall. But he was living for the best possible day instead of sacrificing time not for time later.
Atul was asked to give the graduation speech in his Father’s hometown at Ohio State University. Big honor and his father really rallied for that day. They set it all up so that his dad could be wheeled in up front so he could see the speech up close. A couple months go by and the day comes for the speech. They wheel his father into the college auditorium. His dad had them stop. He got out of the chair and walked up to his seat. I love that part because it is astonishing how people at the very end of life can rally one time for something that is worth it.
Atul says that he has realized the importance of courage to act, to shape our stories, within narrower and narrower confines. (243) He learned we need to pay attention to the priorities that people have, the values that are more important than simply being safe and living longer.
Today, we have the technical ability to inadvertently prolong people’s suffering. We can inadvertently shorten the valued part of living, when the things we value are compromised or we are not able to engage those we are loyal to. Our goal is to try to have a good life, as Jesus might say, an abundant life, as close to the very end as possible.
He notes that in the states that allow people to get a prescription for a lethal dose of drugs in extreme cases, only about half of the people that get the perscriptions actually use them. It seems to be the case that just having the control of that option is what they really want.
As we come near to the end. “People want to share memories, pass on wisdom and keepsakes. They want to settle relationships, establish their legacies, and make peace with God and ensure that thos who are left behind will be okay. They want to end their stories on their own terms.
Whenever we can, we need to facilitate that with them.
Atul’s father remained active. He had dinner parties he attended, sent a dozen emails a day, enjoyed Wimbledon as a tennis player. His daughter even brought home a boy for him to meet, a serious boy that bowled him over with happiness.
Then his email started to be scrambled. He got confused. His world was closing in. His mother called one morning. He was breathing but not waking up. The EMT’s came and they wanted to put him on a ventilator.
Awful decision for his wife to have to make. Even though she knew that he was failing, it all seemed a little too fast and she wasn’t ready to make a decision. She called her son and finally told them ‘No’.
And then, as these things go, he woke up. And when he woke up, he wanted to be discharged to go home. Despite his complications, he asked for favorite foods from his youth. He called his grandchildren. He sorted through photos.
A couple of days later, he was taking in the beauty of the afternoon, and he said to his wife. “I don’t want to prolong this process. When they asked him more about he said that he wanted to be at peace. And he drifted between being awake and sleeping deeper and deeper, his breathing stopping from time to time.
And finally he stopped.
