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 Tale of Two Lives

It has been a week for remembering.

In my Wednesday morning men’s group one of the young men shared stories about his grandmother who recently died from cancer. He had been raised by her, lived with her when his father was in prison while he was a child. She taught him about right and wrong, about what it means to be a person of faith. “If it isn’t in the Bible, I probably don’t know much about it,” was one his favorite grandma quotes.

She had been a source of strength and guidance for him, a constant presence of hope and faith. He told us of going through her things and finding the book in which she wrote her prayer list. The book was thick, its pages filled with handwritten names, many of whom he did not even know. Her passing meant there was now one less person praying for him every day.

Three days later I attended a memorial service for a patient, Mr. M, who had been my patient for 8 years. At his second visit I diagnosed him with a large melanoma. Within a week a surgeon removed it and for the next five years it seemed to be gone. The cancer was seldom mentioned when he came to the office. (He had a back that went out on him a few times a year, so I saw him often.)

Our conversations frequently drifted away from the medical. We talked of golf, family and work, and developed a mutual respect and friendship. We believed the cancer was in his past and that the future would be cancer free. That belief was shattered 2 years ago when a different kind of pain appeared in his ribs. An MRI scan revealed that the melanoma had invaded the vertebrae in his upper back as well as several of his ribs. It was a battle he could not win.

I sat in his service and listened as his best friend told stories of how they had met 20 years earlier and of the close friendship that followed. He spoke of the laughter, meals and motorcycle rides they shared,  and how ultimately they came to share faith in God. Mr. M’s brother-in-law shared how Mr. M had encouraged him in life and business, how he never would have achieved what he had without his input. His daughter spoke last, reading a letter she had written to her father a few weeks before he died. Through tear-filled eyes she described a man of love, dedication, strength and integrity. It was a lovely service. My eyes did not stay dry.

My patient and the grandma never met, but as I reflect on their stories I am confident that they will. The grandma lived a life of faith, daily serving God as best as she could. She died with the assurance of an eternity with Him. The patient traveled a different road. For much of His life he did not give God much thought. It was only in the last year of his life that he turned his attention to spiritual things. Nevertheless, in  the months before he passed he came to share the same faith as the grandma and the same assurance of eternity. They died within days of one another, brother and sister, adopted by the Father they were going home to meet.

Their stories move me. They remind me of both the transience and the importance of this life. My time here on earth will be brief, and may be over before I know it. Even though my days on earth will be few, the potential for me to have an impact on others is great. Like them, I want to live my life in a way that makes a difference.

- Bart

The Unrelieved Agony of a Dying Man

I never planned on being a hospice doctor. I had almost no training in end of life care during my Family Practice Residency. I learned about ethics, about patient’s rights to refuse care and to die with dignity, but caring for patients during the dying process was not part of the program.

One of my first exposures to end of life care in practice was when my aunt died of cancer in 2002. I loved my aunt and had fond memories of her but we were not close. I had not even been told she was dying. It was not until the last few days of her life that I knew how grave her circumstances were. It was then that I received a call from my grandmother. She told me my aunt was in terrible pain and the hospice doctor did not seem to be doing anything about it.

I drove to her home in south Orange County to see first hand what was going on. She was moaning in pain, even though there was a nurse present. My aunt was not fully lucid, and I asked the nurse what medications were being prescribed for pain. I was stunned at the response. I did not consider myself an expert on the treatment of cancer pain but I knew she was on a very low dose of morphine. The IV was delivering only 1 mg an hour, a dose so low that pain relief was extremely unlikely. I did not know much about cancer pain but I knew I could do better, so I volunteered to assume the supervision of her hospice care. I instantly doubled the dose of morphine. When her pain continued, I doubled the dose again. I repeated the process every few hours until she was comfortable. She did not achieve a pain free sedated state until the next day when the dose reached 100 mg an hour.

When she died a few days later my grandparents thanked me for taking care of her. They had watched her suffer for days, and I had changed that. The experience also changed me. After caring for my aunt I made myself a promise. No patient would suffer under my watch. I would personally manage every hospice patient in my practice. I knew I couldn’t save every patient but I could darn sure make sure they did not die in pain.

For the last 16 years I have kept that promise, making house calls and responding to calls from hospice nurses anytime, any day. I have aggressively managed pain, increasing doses as needed, committed to the relief of suffering. I have been consistently able to make all my patients comfortable.

Until the last few weeks. I had a patient whose pain I could not relieve.

He had aggressive lung cancer in his left upper lobe. The cancer had grown upwards into the soft tissues of his chest and shoulder, compressing the nerves that supplied his left arm. Nerve pain is the worst type of pain, and his was resistant to everything I tried. Multiple medications, from narcotics to nerve medications, failed to reduce the agony. I consulted pain specialists, palliative care doctors and radiation therapists in search of a treatment that could relieve his pain. I tried everything, hoping that the next medication, the next change in dosage, would prove to be the one that worked. After each adjustment in medication or dose I called to ask him how his pain was. The answer was almost always the same, ten out of ten. One the rare occasions when the pain went down the relief was only temporary. The pain would peak again in a matter of days.

The last week of his life, as the end was clearly approaching, I encouraged the nurse to get more aggressive with his medications. His dose of morphine reached a remarkable 400 mg every few hours, yet his pain remained. I called the best end of life doctor I know, and he recommended a change to methadone. The pain persisted. We added sedatives, hoping he could find a way to rest. He ultimately passed in his sleep. I can only hope that he did so without pain.

I was a heartbroken when he passed. I mourned the loss of man I considered a friend, of my inability to be at his side in his final days (I was out of town), and most of all, the knowledge that he had suffered so much. I was, and am, grateful in the knowledge that his suffering has ended, but find myself wishing I could have done more.

He suffered. He remained positive and kind to the end, but he suffered every day.

His passing makes me acutely aware of the limits of my profession. No matter how hard I try, there will be conditions beyond my reach, diseases I can’t cure and suffering I cannot relieve. It is the reality of life.

Even more, his pain causes me to again wonder as to the purpose of suffering. It is hard to see the good in circumstances so bad, hard to see the hand of a loving God in the midst of such agony. For this patient and I, it was our shared faith that sustained us. We both clung to the hope that his faith assured an eternity free from suffering, and reminded each other of this hope in our times together.  We also prayerfully shared the hope that God would somehow, someway, use his last days to touch the lives of those he loved, that God had a purpose.

I do not know what these purposes are or might be. The answer may not come in this life. All I can do is focus on the purpose that I know God has for me right now, which is for me to do the best I can to love his family and encourage them. I can share the story of his faith with others, of the hope that we shared, that others may find similar assurance. And I can do all I can to comfort and care for the other dying patients God brings my way.

- Bart

Thanks for reading and sharing. If you are so moved, consider saying a prayer for the man's family. There loss is profound. Comments and questions are always welcomed. I can be reached via the contact button on this website, or followed on twitter @bartbarrettmd.  

The Value of My Father's Life

How should a life be measured?

I have reflected on the question for the last few days as I ponder the passing of my father. It is easy to focus only on the end of his life and the decisions that led to his isolation and estrangement from his family but I do not think that is fair. My father was a mean and angry man who did mean and angry things, but he did not do only mean and angry things. Like all of us, he was much more complicated than that.

He was a violent man who beat my mother while they were married. When she took their three young children (we were all under 5 years old), he could have abandoned us. He could have ignored his responsibilities and refused to pay child support. He could have, but he didn’t. The checks always came.

When my mother divorced her second husband and became a single mom to three teenage boys she found herself in dire financial straits. She asked my father for more child support. He didn’t have to pay her more as there was no court order compelling him to increase the payments, but he did. As seemingly incapable as he was of giving emotional support he never wavered in his financial support.

As a father, he was often impossible to please. I have vivid memories of being a small child and him harshly criticizing me for the way I pulled on my socks, took off my shirts and even my choice of spoon when I ate my morning cereal. I was a pigeon-toed and awkward child and his biting “humor” found in me an easy target.  He called me "spastic" and when someone else was clumsy he said they had "pulled a Bart." His words were incredibly hurtful and damaging. To this day the memories of his words still bring a sense of fear and anxiety.

As mean as he was this angry man found the time to play with us. He taught us card games, played board games with us and organized football and basketball games with the kids in the neighborhood. He took us to San Diego Padres baseball games and Chargers football games and took us to the beach and taught us how to ride the waves on an inflatable raft. These moments were not idyllic, he was often impatient and critical and some initially pleasant times  degenerated into tears, but he gave us attention. He was inconsistent and unpredictable but there were times when he tried to be a dad.

His struggles with being a parent did not end when I reached adulthood. He struggled with my independence and career choices. He wanted more from me than I did for myself. He appropriately questioned my decision to drop out of college and forcefully encouraged me to re-enroll. When I did, he paid my tuition all the way through medical school. In spite of his financial support he did not have much faith in me. I will never forget his response when I told him of my perfect GPA at the end of my first year at the University of California, Irvine. He said, “I honestly didn’t think you had it in you.”

He was not a man of encouragement. He seldom gave praise and never gave hugs. Growing up I never thought he was proud of me or that he loved me for who I was. He seemed to see every flaw and catch every mistake while missing or minimizing every success. And yet, when I looked into the audience as I walked off the stage with my Medical Diploma in my hands I saw my father head and shoulders above the crowd, standing on his chair and proudly pumping his fist in the air.

For the three years I was in my Family Practice residency he was incredibly supportive of me and my family. Each month a check for $500 came in the mail, (almost $1000 in today's dollars.) He knew my resident’s salary was not enough to support a family and he did not want Lisa to have to work. It is because of him that she was able to stay home with our son.

His generosity had a profound impact on our lives, which made his decision to disown me shortly after graduation so difficult to process. I knew he was angry and had fits of temper, but I had always hoped there was some measure of good underneath. I had heard the horrible stories told by my step-brother and mother, of physical and verbal abuse, but thought that he had softened with age, and that love, especially for his grandson, would win out. It didn't.  His choice to cut off all contact with me and my family for the remaining 24 years of his life proved that anger ultimately won.

So how do I measure his life?

There is no question that his anger and inability to love left marks on me. My battles with anxiety, insecurity and anger are part of his cursed heritage. I struggle every day to overcome the damage he wrought. It is only by the grace of God that I have learned what it means to be a loving husband and father. Although I had no role model in my own family, God blessed me with a father-in-law who modeled goodness and kindness. 

In spite of the damage my father did it does not seem fair to ignore the support he gave me earlier in life. His gifts were tainted and had strings attached but they made a difference nonetheless. They had value. While the good he did is dwarfed by the harm, his warped generosity did help my family through difficult times. He was not a good man, but he was more than just a bad man.

I think this is the reality for all of us. None of us are totally good or totally evil. We are all broken people who fail and succeed to varying degrees. This truth of universal brokenness begs the question- How do we measure a life? Do we pull out a set of scales and divide up a man’s deeds and see where the balance lies? If so, do we give greater weight to more recent harms or blessings?  Many people have done terrible deeds believing in the moment that they were doing the right thing. How do we decide where to draw the line?

I do not believe that I am in a position to answer this question for others. It is not my place to decide. As I think about my father I realize there are pieces of his puzzle that are hidden from me. I have no knowledge of his childhood or of his relationship with his father. I do not know if he was abused or scorned, loved or hated. I do not know his mental history. As an experienced physician I see in his behavior hints of mental illness that were not visible to me when I was young. I do not know if he battled his demons or embraced them. I do not know if he was even capable of love. 

What I do know is that he paid a price for his sins in this life. I have wonderful children who fill the world with love, joy and laughter. My father never knew them. Theirs is a joy he never shared. In my relationship with my father-in-law I experienced the incredibly rich blessing of shared respect between two grown men. I received the wisdom of his years of life experience and he received the joy of seeing his wisdom shape me into a better person. My father never experienced this blessing, the joy of adult friendship with a son. My father lived the pain of loneliness.

Sadly for my father, the pain of this life pales in comparison to the pain that may await. My father rejected faith many years ago. To my knowledge he never turned to God. For the rest of eternity he will give account to His creator for his choice. It is God who will judge.

As it is God who will ultimately judge there is little to be gained expending energy judging my father. My time is better spent judging my own heart. When I turn my gaze inward I see incredible room for improvement. I have more bad in me than can be expunged in one lifetime. While true goodness eludes me I nevertheless intend to spend the rest of my life striving to be a better man.

The success of my self improvement efforts will be measured after I am gone. I often tell others that I have two goals in life, both to be fulfilled when I die. The first is that when I stand before my God I will hear Him say, “Well done.” The second is that my children will tell others on my passing that I was the greatest man they ever knew. I do not know if I will ever achieve these goals but I am certain that they will not be achieved without continuous intentional effort on my part.

I am also certain that the pursuit of these goals will bring peace and joy in this lifetime, and confident hope for the next.

- Bart

Great Doctors, Terrible Outcome

I stood silently by his bedside in the Intensive Care Unit listening to the rhythmic hissing sounds of the ventilator as it repeatedly pushed oxygen into what was left of his lungs. “Poosh, poosh, poosh,” the sound a constant reminder of how sick he was. On the monitor above the bed the tracing of his heart rate kept its own rhythm, an almost mocking evidence of life. Although he felt nothing, I felt a pain deep in my stomach and an ache in my heart. I asked myself, “How did we end up here?”

He seemed perfectly healthy a few weeks earlier when he came to see me in the office for his check up. His blood pressure was good, his heart was strong, his lab work was normal. He exercised regularly and was in near perfect shape for a man in his early seventies. The only blemish on his health record was a distant one. He had once been a heavy smoker but had stopped 10 years earlier.

If his visit had been scheduled a few months earlier I would not have ordered any additional tests, but he came in shortly after a study on lung cancer had been announced. Less than a month before his physical I had been a part of a team of doctors involved in drafting a new lung cancer screening protocol for the hospital. The recent study had shown for the first time that early detection of lung cancer could have a positive impact on survival. The evidence revealed a 20% decrease in lung cancer mortality when patients over the age of 50 with a heavy smoking history had annual CT scans to screen for small tumors. He was the first patient of mine who met the criteria for testing and I enthusiastically recommended the test.

I was stunned when the test revealed a cancer but was hopeful that we had found it in time. That was, after all, the purpose of the test. I referred him to the thoracic surgery team for removal of the tumor. The surgeon, one of the very best at his craft, met with the patient, did the appropriate evaluation and scheduled him for surgery. Everyone was upbeat and hopeful. The day before the operation he played basketball in the driveway with his grandchildren.

The first hint that things might not go as hoped happened in the operating room. The initial plan had been to resect the tumor and leave most of the lung intact. The plan fell to the wayside when the surgeon discovered that the tumor was larger and more invasive than the scan had suggested. The cancerous mass had wrapped itself around the bronchus, the air tube supplying a major portion of the lung. The surgeon had no choice but to remove the entire lobe, significantly more tissue than he had planned. The doctor was disappointed, but was still confident that he had removed all of the tumor and the patient had a good chance at recovery. He sewed the patient up and moved him to the ICU, where all chest surgery patients go after leaving the recovery room. The plan was to keep him on the ventilator for a day or too while the lungs healed and then allow him to breath on his own.

That never happened. The years of smoking had caused another previously unknown problem. Although he was physically active, he had undiagnosed COPD, chronic obstructive pulmonary disease. The combination of the stress of surgery and the chronic disease were too much to overcome. The remainder of his lungs were too diseased to support him breathing on his own. Lung specialists, heart specialists, and other specialists were all asked to help but there was nothing anyone could do. He was never going to get off of the ventilator. It was up to me to inform the family of the bad news.

The conversation with the wife was intense. The question was asked, “What went wrong.” The answer was both nothing and everything. Each and every doctor had done everything exactly right. I had ordered the right tests, as had the surgeon. The surgeon had made no mistakes during the operation and the correct medications and treatments had been prescribed. In spite of our combined efforts  he remained unconscious and dependent on a ventilator. It was a hard message to accept. The wife and I agreed to wait a few more days to give him a final chance to respond, praying for a miracle. It was understood that if no improvement came that we would have to let him go. A few days later we said our tearful goodbyes.

His death was a devastating loss for all who were involved in his care. I found myself wishing I had never ordered the CT scan and grieving the decision to proceed with surgery. I wrestled with the reality that while his death from lung cancer was a certainty, it need not have happened so soon. I will never forget the anguish of his wife as we stood at his bedside, nor the heartfelt tears in the eyes of the surgeon when he told me there was nothing more that he could do. He was a good and kind man and the loss was real.

I have also never forgotten the truth that excellent care does not guarantee good outcomes. Life happens, and death happens, even when doctors do everything right. I am reminded not to assume the worst when bad things happen and to avoid placing blame and pointing fingers. Sometimes our best just isn't good enough, in all areas of life.

- Bart

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