Care at the End of Life

October 27, 2019

Psalm 139:13-16

 

          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. He didn’t think much about it until it got worse and he started having neck pain and couldn’t sleep easily at night. Then 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 spinal cord 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 neurosurgeon at the Cleveland Clinic. Less than a dozen cases like this had been treated.

        They went to the first neurosurgeon in Boston, who told 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. That prognosis had the immediate effect of filling the room with fear.

        They flew to Cleveland, where they got a more ambiguous picture. Tumors like these, said the doctor, can grow quickly but they can also stay the same for a very long time. The neurosurgeon gave them a list of symptoms that he should experience should the tumor start growing again. The physician thought that the chances of becoming quadriplegic 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- what would you do? – 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. It is a question that forces you 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. Their perspective was largely dependent on 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, (knowing that my time was short), 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- the simple things that can be achieved. But it is an important question of compassion.

        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 there are a few and they can be achieved.

        Atul’s father decided against immediate surgery. He waited until the symptoms progressed. And the symptoms did progress slowly just as the second doctor predicted. Did he pick that option because it was the more optimistic one? Less fear inducing? It is hard to know.

        The interim time made Atul’s father 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 back in India 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?

Having to make choices in a finite time frame opens a 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 watching TV would not be enough for him. He needed to interact with people. More than anything, he just didn’t want to become quadriplegic and have other people have to take total care of him. He needed to be in charge of his world and his life.

He was a surgeon after all. These guys have spent their adult lives as the quarterback of the team. Of course, he would say 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

        This is an important observation. These discussions are likely not to be as bad as you think they are going to be.

        They decided to do the surgery and went to the Cleveland Clinic. They were in the waiting area, about an hour into the surgery, when 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 quadriplegic than dying, so he asked the Doctor, ‘What will decrease his chances of becoming quadriplegic, 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, proceeding with surgery had a 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.

        Atul’s father reflected on these options and decided to forgo chemotherapy as it would make him too weak for the benefits that it would provide. 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 experienced numbness in parts of his body. And the drugs that they put him on to treat some symptoms caused him to hallucinate. The experience was 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 suggested 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, Atul’s father had the presence of mind to also ask, ‘what if I do nothing?’ And the doctor described a list of symptoms of failing health. It is a question more of us should ask.

        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 change the overall time span 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 took the most aggressive treatment available and the only thing we generally feared was doing too little. Today it is not so clear, partly because we have more and more options. And this is what has changed so dramatically in the last 20 years. It is going to require all of us to be more intentional and involved in the process of our dying.

        The day came when Atul’s father 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? This is the new question that previous generations never really had to answer very often.

        Atul’s mother was also a physician and Atul noted that between the three of them, they had 120 years of medical practice. Yet,  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, a chaplain. Furthermore, he could quit hospice 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 today instead of sacrificing quality of life for time later.

        Atul was asked to give the graduation speech in his Father’s hometown at Ohio State University. It was a very big honor and his father really rallied for that day. Who wouldn’t want to see their son give a graduation speech?

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. Atul’s father 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 really worth it. It is an amazing, almost miraculous power.

        Atul said that what that one example taught him was the importance of the 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. (That is what the kids want usually, to have their parents safe and alive, but compassion in this context means listening and responding to what our parents tell us that they need).

        Today, we have the technical ability to prolong life in almost every circumstance. But today, sometimes what that means, is that we 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.

        Atul pointed out 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 prescriptions actually use them. By the way, New Jersey is now one of those states. Again, this is new. It seems to be the case that just having the control of that option is what most of us 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 those 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 even when he was talking. His world was closing in. His mother called one morning.

He was breathing but he would not wake up. The EMT’s came and they wanted to put him on a ventilator.

        That is an 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. She had to talk it over, partly to process her anxiety and grief. Finally, she told them ‘No’.

        And then, as these things go, Atul 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 it, he said that he wanted to be at peace.

        That sounds familiar to me. I usually am invited to come pray with people right at this stage. I always ask people how they are doing. They will say, “Rev. I’m tired.” Or, “Rev. I’m ready to go.”

        I’ve learned that they aren’t making conversation with those comments. I’ve learned that they have a lot more power over their destiny at that time than most of us realize.

And he drifted between being awake and sleeping deeper and deeper, his breathing stopping from time to time.

        And finally, he stopped breathing. Requiem aeternam dona ei, Domine, et lux perpetua luceat ei. Requiescat in pace.

        I share this story with you today because this is the new norm. Our advanced diagnostic ability in medicine means that dying is now a process that you have to manage with your family and friends.

        The good news is we can fill it with warm humanity and compassion but we have to engage our adult as we approach dying and have the conversations with our parents, our children, our spouses and our closest friends. Make it better. Know your values well enough to express them.

        And may you have the privilege of helping those around you conclude their lives with the same dignity and humane warmth that they lived their lives. “I came not that you might have mere existence, but that you might live your life in spiritual abundance” said Jesus. And so may you. Amen.

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