What to Do, When There is Nothing to Do

It was nearly midnight when the call came. Spencer was in pain and the hospice nurse was over an hour away. Could I come and give him a dose of morphine? They knew the answer before the question was asked. Of course I would come. I had made that promise the moment Spencer enrolled in hospice with incurable brain cancer. I could not save him, but I knew I could keep him from suffering.

I rolled out of bed, threw on some clothes and headed out the door. My heart was heavy as I drove the few miles to Spencer’s house. It was a rainy night, which seemed strangely appropriate. I pulled into the driveway, exited my car and walked, slowly, to the door. I was somberly welcomed into the home, the wave of a hand directing me to where Spencer lay in bed.

I had not seem him in a while, and was shaken by his appearance. It had been a year since the day the neurosurgeon had called me with the diagnosis of inoperable brain cancer. They were going to do all they could to prolong his life, but another year was all they could hope for. “All they could do” included high dose steroids, which caused Spencer to gain considerable weight. His face was so puffy he was nearly unrecognizable. He was no longer able to speak and I could not tell from his eyes if he was even able to recognize me.

Quietly I reached for the vial of morphine on the table to his side. I drew up the dose into a syringe, rolled down the top of his pants to access his muscle, and gave him the injection. I set the empty syringe down on the table and sat, looking at him, wondering what to do or say. I fought back tears. I lost that battle and teary-eyed, took his hand. I asked if I could say a prayer. I asked God for comfort and peace, said, “amen”, then leaned over and kissed him on the forehead. “I love you Spencer,” I said, and quietly left. That was the last I saw him. He died a few days later.

He was 5 years old.

I thought of Spencer yesterday as I was driving away from the home of another hospice patient, a woman just 2 weeks older than my wife who was dying from uterine cancer. Although the original diagnosis was made years ago, until February of this year she had considered herself cured, attending to her life with no thought of the cancer growing within. It was then that she came into the office for two red lumps that had appeared on her abdomen. They had grown rapidly and were quite tender. She thought they were skin abscesses. They weren’t. A CT scan brought the worst possible news. They were metastases. The cancer was back, and it was every where. In addition to the lumps on her skin it filled 90% of the space where her liver should have been. The hope the initial oncologist gave, of perhaps another year of life, proved to be false and a second opinion from the City of Hope quickly took it away. There was nothing anyone could do. We enrolled her in hospice, committed to making sure her few remaining days would not be days of suffering. That was just a few weeks ago.

Her husband called me late Saturday morning to tell me she was emotionally done, too tired to fight any longer. She wanted to go to sleep and not wake up. He wondered if there was anything I could do. I was at my son’s house only 5 minutes away from her home when I got the call. Something in the tone of his voice told me I needed to be there. I left my son’s and went straight to her home.

Her husband met at the door, his gesture toward his wife similar to the one Spencer’s mom had given me so many years ago. She was in a hospital bed near the door. An empty chair was pulled close to her, near enough to hold her hand or caress her face. It was her husband’s chair. I sat down and looked at her.

She was clearly uncomfortable. Her speech was clear but slow, every few words followed by a long pause, as if she was gathering the strength to continue each sentence. Her eyes were tinged with yellow, a sign that her liver had succumbed to the cancer and begun to fail. I knew she did not have much time left, days at the most.

With her husband listening on I developed a plan. I put in a call to the hospice nurse instructing her to begin giving morphine around the clock, a dose every few hours. I added a sedative to help her rest. She was not going to suffer, not if I could help it. I finished my explanation, took her hand and asked if I could pray for her.

She and her husband responded in unison, “Please!” Unsure what to say, I prayed as I did with Spencer, asking God to give her comfort and peace. I asked God to welcome her into the home which He had prepared for her. There were six wet eyes as I said, “Amen.” I let myself out, wondering if I would ever see her again.

I won’t. The hospice agency called me just 5 hours later. She was gone.

Both patients remind me of a lesson I learned a long time ago. Even when there is “nothing” more I can do, there is often still something I can do. I can love, I can give comfort, and I can pray. I can shed some tears, hug my wife, and thank God for the gift of life with which I am still blessed. And I can press on, willing to accept the pain and sorrow, committed to sit at the next bedside, take the next hand, and say the next prayer, knowing that as a Family Doctor this is my calling.

Bart

A Dying Patient, Deceitful Doctors

He was dying. There was no cure for his pancreatic cancer, no way to halt the inevitable, so he lay in his hospital bed and waited, day after day after day. Every three days or so he received a blood transfusion. His initial surgery for the cancer, performed two years earlier, included the removal of a section of his small intestine. This was followed by radiation treatments that damaged the area where the intestines were sewn back together, causing a large, bleeding ulcer.

Under normal circumstances an ulcer like his would be treated with surgery. Terminal pancreatic cancer is not a normal circumstance so the decision was made to treat him with periodic transfusions, keeping him alive until the cancer killed him. In addition to bleeding the ulcer also prevented him from eating a normal diet. He was severely malnourished and his strength had faded away. His weakened condition made it difficult for him to walk and his need for repeated blood transfusions rendered him too sick to be discharged from the hospital. He was resigned to spending his remaining days in a hospital room, occasionally moving from his bed to a chair. It wasn’t much of a life but he didn’t have long to live anyway.

He was in a VA hospital, transferred there after he reached the lifetime maximum on his private insurance plan. He went from the personal care of a private hospital to the impersonal care of the Veterans Administration. At the VA inpatients did not have a personal physician. They were cared for by a team of doctors in training. The team consisted of a third year Internal Medicine resident, two Internal Medicine interns and two medical students, all supervised by an attending physician. On the first of every month the team changed and the patient was introduced to a new group of doctors, all of whom were new to him, none of whom had ever read his chart. As he was a chronic patient his chart was several inches thick and contained over a year’s worth of his medical information. It was so thick that no one bothered to read it.

I took over his care in January 1989, my final year of medical school. After hearing his story form the other doctors on the team I expected him to be the stereotypical grumpy vet. He was anything but. He was kind, appreciative and gracious. He had accepted his fate and come to terms with his condition. He expected little from the care team and was grateful for any conversation. I genuinely liked him.

One night when I was on call I decided to be the first person to read his entire medical record. It was a slow night so I poured myself a cup of coffee and started flipping pages. I reviewed the records of blood transfusions, lab results and the portion of physician notes that were legible. As I thumbed through the pages I came across a pathology report from the Mayo clinic.  As I reviewed the report my jaw dropped and my heart skipped a beat.

He didn’t have cancer. The pathology report from the Mayo clinic was a second opinion on the specimen from his original cancer surgery. The expert review stated that the correct diagnosis was chronic pancreatitis, not pancreatic cancer. He did not have a terminal disease, he had not needed the surgery, nor the radiation. He had been completely misdiagnosed. Even more troubling was the date on the report. It was over 2 years old.

I sat back in my chair and wondered what to do. All of the treatment decisions and recommendations for the last two years had been based on a lie. He had been told he was incurable so he had never been offered curative treatment. He had wasted away from a bleeding ulcer because he was told he would soon be dead from cancer. He didn’t have cancer, which meant that if he regained his strength he could have surgery to treat the ulcer. If the ulcer could be treated, he would no longer need blood transfusions. If he no longer needed blood transfusions, he could go home.

I called my senior resident and showed him the report. “We have to tell him,” I said, “this changes everything!”

His response stunned me, “You can’t tell him,” he said firmly. He explained that the decision would be up to the attending physician as he was the one who would be held responsible and liable for the information and its consequences. The resident was concerned about malpractice liability, afraid that the patient might be angry when he learned of the misdiagnosis. He did not want anyone mad at him for informing the patient and he did not want me to inform the patient either.

I was not at all happy with his response. It seemed to me that the patient had a right to know the truth and that we had an obligation to tell it to him. In my mind there was nothing to discuss or debate. I shared these feelings with the attending physician at rounds the next morning. He was as unconvinced at my argument as the resident had been. He felt that the patient had potentially reached the point where he was not going to survive, with or without cancer, so there was nothing to be gained by telling the truth.

I refused to accept his answer. I knew they felt that it was not a medical student’s place to challenge the opinions of superiors but I felt responsible to the patient. I pushed for additional review from the hospital ethics committee. My persistence paid off. An ethics consult was requested.

Later that evening I found myself with 7 physicians crowded into a room that comfortably held 5 people. I was the least experienced person present but I was the one presenting the patient’s case to the ethics committee of the VA hospital. They listened attentively to all I had to say as I presented the patient’s case to them and as they listened to the concerns of my resident and attending. It did not take them long to reach their decision. The patient had a right to know everything about his care and diagnosis.

The next morning I told the patient his correct diagnosis. I told him that he did not have cancer and that if he regained his strength he might be a candidate for surgery to cure his ulcer. He was appreciative and gracious. I ordered a nutrition consult to see what we could do to improve his overall health.

It was too late. The patient died a few days later.

Although my efforts did not change the course of the patient’s treatment or the ultimate outcome my experience with him did have value. It changed me forever. I made myself a promise that what had happened to him would never happen to a patient under my care. I vowed to be thorough, to be complete and to be diligent. No chart would be too thick, no history too exhaustive, no patient too complicated to ignore or dismiss. I realized that there would be patients for whom quality care would require uncompensated hours of chart review and I promised myself that when those patients came to me for care I would invest those hours.

Almost 20 years have passed but I have not forgotten my promise. Two weeks ago a new patient came to see me for the first time. He brought with him a list diagnoses that included congested heart failure, diabetes, hypertension and chronic pain along with an extensive list of medications. In keeping with my promise, I scheduled him for an hour long appointment. During that appointment I logged into the hospital system and reviewed his lengthy history. Halfway through my review I came across an echocardiogram report. The report described a perfectly functioning heart. The diagnosis of heart failure, one that he had carried with him for 8 years, was incorrect. The diagnosis had been handed down from one doctor to the next, unquestioned, for all of that time. I did not hesitate to tell him what I had found.

I ordered additional testing and referrals so we could plan a new course of treatment. As I filled out the referral request and entered the medications into his chart I was again reminded of the patient from the VA, and I was grateful for the lessons he taught me. Good medicine takes time. Good doctors invest as much time as is needed.

-Bart

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When a Patient Wants to Die

What if he asked me to help end his life?

George was dying. I did  not expect him to last more than a few weeks. The esophageal cancer had spread to his liver and to his lymphatic system, mutated and spread beyond the reach of all known treatments. His esophagus was narrowed to the point where solid foods were impossible to swallow and he was starving. The impact of the cancer on his digestive system had resulted in intractable nausea. None of the four anti-nausea medications he was taking had made a difference. Every day was miserable. All pleasure was gone from his life and he was simply waiting to die.

He signed up for hospice care to ease his passing. He was too weak to come to the office so I went to his home to see him. He was a shell of the man he once was. He was once obese but was no longer. He had lost over 100 pounds, his clothes hung loose and his face was drawn.

During the hour I was in his home we discussed many things. He asked me many unanswerable questions-, wondering what caused the cancer, what would have happened if the specialist he had seen had made the diagnosis earlier when he first had trouble swallowing. He asked how long it would take for him to die. Having provided care to many hospice patients over the years I told him that only a foolish doctor would deign to predict a time of death. Death comes when it comes. Sometimes in comes in days, other times it comes in weeks. All I could promise was that I would be there for him, that he would not suffer.

Waiting can become the hardest part of dying. Once the inevitability of death has been accepted, when the goodbyes are said and the prayers have been made there is nothing else to do but wait, to watch each change in symptoms and wonder what it means, to wonder if the final countdown clock has started to tick or if it is just another meaningless change. 

For many patients and families the waiting is unbearable. As the suffering increases and the end approaches it is natural to ask, “Can we just do something to end it?”

Because physician assisted suicide has been illegal in California I have never had to directly answer the question. This could change at any moment, as the governor has signed a bill that would legalize the practice. When the law is implemented it will be legal for me to give patients like George a lethal dose of medication. The question of "When?" will become answerable and the agonizing days of waiting avoided. Family and friends could know the time and place and plan accordingly. Everyone would feel a sense of control.

And my role as a physician would change forever.

For patient's like George  it seems straightforward. He had at most a month or two to live, and his suffering was real. Why not provide definitive closure for such patients? What is the harm in providing a quick and easy passing?

George's case provides an answer to these questions. Under the law as written, George would have been a candidate for assisted suicide 4 months ago, when he was first diagnosed with the aggressive cancer. If he had not elected to attempt treatment his life expectancy would have been less than 6 months and he would have met the conditions of the law. Any doctor could have ended his life any time he wanted. He could have been given a large dose of morphine or other medications and the months of suffering avoided.

He also would have avoided hundreds of conversations with friends and family, including the spiritual conversations he had with me and others. A professed atheist, he specifically asked for prayer and if I would advise him spiritually as he went through the process of dealing with his disease. That 4 month process changed him. He became a different man with a different perspective. I would not have wanted to take that from him, nor should anyone.

Many will say that it should be the patient’s choice. In a godless world where man is the ultimate arbiter of his fate this makes sense. If there are no enduring consequences, if there is no ultimate meaning in life, if there is nothing good that comes from suffering, these choice advocates are right.

But we do not live in a godless world and man is not god, as much as many may wish that we were. Death reminds us of that.

As a Christian physician I will not play the role of God, I will not help a patient end his life. What I will do is relieve his suffering. I will aggressively treat his pain without reservation, even if that requires middle of the night visits. I will come to his home to pray for him, sit with him and comfort him, and do all I can to facilitate a death that is filled with dignity and comfort, knowing that each moment, even the ones filled with pain, provides an opportunity for love, reflection and faith.

- Bart

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