Life, Death, and a Little Boy Named Alfie

Alfie Evans died today. You may have heard his story. He was in a coma for over a year. His parents wanted life support continued, but a court ruled otherwise. His story and passing illustrate the challenges all physicians face in dealing with death. Here are my thoughts-

I deal with death on a regular basis. All doctors do, but in my role of Ethics Chairman at my hospital I often have end of life discussions with dying patients and their families. All of these conversations are difficult. I am only called to assist when there is conflict between physicians and families that cannot be resolved or when families cannot agree on how to proceed.

The most common consultation requests are in cases where doctors have concluded that there is nothing more to be done and recovery is impossible, yet families believe hope remains. When they believe additional treatments and life-prolonging interventions will only prolong death and increase suffering doctors recommend stepping back and allowing natural death to occur. Families often believe that letting go is the same as actively killing someone and thus cannot accept the doctor’s recommendations. When these impasses cannot be resolved, they call me.

I have been involved in dozens of these conversations. While each situation is unique they all share common characteristics. Foremost among them are differing views on death and what it means to be alive.

Doctors, in particular critical care physicians, see death all of the time. They see the signs of its coming and recognize its inevitable progression. They know the signs of recovery and survival, and in fact search for these signs relentlessly. They long to cure and heal but learned early on in practice that there are some battles that cannot be won. When recovery and restoration are no longer possible they turn their attention to the good that remains, the ability to provide comfort and dignity as a fellow human being passes from this life.

The families of patients sometimes see things differently. They see someone they love lying in a bed, someone they cannot bear to lose. They know death happens but they cannot believe or accept that it is happening to their loved one at this time. They have heard and read of miraculous recoveries and have profound hope in the power of love and the will to live. They “know” that at any moment things could change, that their family member could return. Even if full recovery isn’t possible, the chance of one more smile, one more word, or one more touch seems worth fighting for.

This hope for a miracle can lead them to see hopeful signs where no hope exists. Reflexive responses such as grimaces, grunts, and the movement of a headare evidence that “she is still in there!” or that “he can hear us!” The grasp reflex, present after only four months of development in the uterus, is interpreted as a reassuring squeeze, instead of a primitive reflex that means nothing at all. These false signs of hope become the evidence that doctors are giving up too early, proof that the fight should continue.

Love, compassion and mercy compel physicians to speak truth in these circumstances. When this truth is not accepted people like me are often the final messenger. My suit and tie and title of Ethics Chairman provide extra gravitas to words others have spoken and communicate a level of seriousness and concern families need to hear. Referencing our shared promise to “Do no harm,” I remind families that prolonging suffering and futile care are things we cannot and will not do. There are times when there is a moral and ethical imperative for physicians to compassionately say, “No.”

These conversations are always difficult but they are times when the burden is more bearable. When the patient is a nonagenarian victim of a massive stroke, bed bound and ventilator dependent, there is a higher degree of clarity. We know that death is only a few years away for the healthiest of 95 year olds, which eases the fear of error. Conversations with multiple patients near the end of their lives give us confidence that it would be cruel to artificially force someone to a prolonged death tube-fed and non-communicative in a nursing home.

The younger the patient is the more difficult these conversations become. There is a dramatic difference between saying goodbye to an elderly grandparent and saying goodbye to one’s little boy. The natural fear and intense emotions that come with a dying child can overwhelm the coping mechanisms of any parent. Desperate desire and gargantuan grief, when combined with the false signs of hope often displayed by a vegetative patient, make it impossible for some loving parents to let go.

This appears to have been the case with the parents of Alfie Evans, the 23-month old infant who died today in a hospital in England. Alfie had a degenerative neurological condition that resulted in severe development delay (he never progressed beyond the level of a 2-month old child). His condition led to severe seizures when he was 6 months old. MRI scans and EEG tests demonstrated significant brain damage was already present at the time of his first seizures. He was placed on a ventilator and a feeding tube was inserted. In spite of aggressive medical treatment the neurologic condition and resultant epilepsy progressed and caused continued damage to his brain tissue.

Over the course of the last 17 months extensive medical testing and analysis was done on little Alfie. Although it was evident to physicians early that recovery was not possible they continued to explore every available option. Ultimately, when later MRI scans showed that brain tissue was decreasing and being replaced with fluids, the medical team reached the appropriate conclusion that continued care was futile. While they could not know with certainty whether or not Alfie could experience pain it seemed clear that if he couldn’t experience pain it was because he had no meaningful brain function remaining. Worse, if he could experience pain, he would experience it with no hope of recovery. Neither option supported continued care. It was time to let him go.

All of this was presented to the family and the doctors said it was time to withdraw life support. The court documents articulately describe his parent’s response-

“The Fathers core dilemma, from which he struggles to escape, is that whilst he recognises and understands fully that the weight of the evidence spells out the futility of Alfie’s situation he is, as a father, unable to relinquish hope.”

Alfie’s family could not let go. A careful review of the case reveals the innumerable obstacles they faced as they struggled to process the tragedy and how they should respond. Alfie was their only child, and they were just 19 and 20 years old. They received an overwhelming amount of outside input from uninvolved parties, some of whom seemed more interested in personal agendas than they did in their suffering. The parents were trapped in the middle of a hurricane of opinions and emotions with no way of escape. It was ultimately the courts who determined the path that would be followed. The decision was made for them. Alfie was removed from life support and died this morning.

Much has been written about Alfie’s case, most of it focused on the issue of parental rights regarding decisions to continue care. I will leave those arguments to others. For me, Alfie and his parents demonstrate a reality that is a part of all medical care. Patients and families are often forced to make decisions they are not equipped to make.

When these circumstances arise it is up to physicians to love, serve and support the patients under their care, to do good whenever possible. When that is no longer possible, to do no harm.

Bart

If you are interested in the details of the case, I recommend you read the judge's decision. You can find it here.

Needed: More Small-Town Doctors

It was a rainy day on the island of Kauai. Sunbathing was not an option, and neither was swimming or snorkeling. The ocean water’s typical clear blue color had been replaced by an unappealing shade of brown. Stranded away from the water we resigned ourselves to wandering through the stores in the Kukuiula Village shopping center near Poipu Beach.

After meandering through stores selling beach themed home goods we wandered into an art gallery that featured photos of scenic locations from around the Hawaiian Islands. I did not recognize many of the images in the pictures and asked the proprietor, a woman who appeared to be in her seventies, where some of them were taken. She answered my questions and then asked some of her own, the standard tourist questions of “Where are you from?” and “Where are you staying?”

After hearing our answers, she volunteered that she had moved to Kauai over 20 years earlier and still felt like she was new. She told us of the small town nature of the island (there are 27,000 permanent residents, only about 2000 of whom live in the Poipu area), and how everyone knew everybody else. She mentioned that there was only one department store on the island and that everyone wore the same outfits because they all shopped at the same Macys.

As there was no one else in the store and she seemed to be in the mood for conversation, I decided to ask her what life was like living on the island. In particular I asked her about the quality of medical care. “It isn’t very good,” she replied.

She told us that the only up to date mammogram machine was on the southwest side of the island, nearly an hour’s drive away from the hospital and over 2 hours away from the village of Hanalei. The hospital on Kauai was not very advanced. It was equipped to handle common conditions and emergencies but was not staffed for more complicated cases. Her husband had been diagnosed with pancreatic cancer a year earlier and had needed to travel by plane to Honolulu for treatment. Their medical care was comparable to that one would find in rural America.

The best part of their health care was their family doctor who had provided their care since they arrived. He was kind and compassionate. She shared that she was concerned about the future of their medical care because he would soon be retiring. She then told us a story of her doctor that helped us understand her fears.

A few years earlier her brother and his best friend had gone out fishing on her brother’s boat. They were about 8 miles off the coast when they hooked a massive fish that weighed over 200 pounds. The friend worked to reel it in while her brother went to get something with which to hit it in the head so they could pull it into the boat. Metal stick in hand her brother called to his friend to pull the fish in a little closer so he could reach it.

“I don’t feel very good,” the friend said. Then he dropped dead on the deck. Her shocked brother radioed the Coast Guard and started CPR. It took a while for the Coast Guard to arrive, too late to do anything for his friend. The Coast Guard took his body away. Her brother returned to the harbor alone. Waiting for him on the dock was his family doctor. The doctor had heard of the tragedy, and concerned for her brother’s state of mind had driven to the harbor to meet his grief-stricken patient.

As the woman told the story it was clear that she had not been surprised by the kindness of their physician. His caring act was what they had come to expect from him, standard practice from their small-town doctor. While this behavior was normal for her physician she knew that it was a level of kindness that could disappear now that he was retiring. She did not know if she would ever find a physician who cared for her that much, a physician she could trust to be there when she needed him.

Her story has stayed with me. I repeatedly find myself reflecting on the power of this small-town physician, the healing and comforting power of relationship and friendship, the importance of simply being “there” when needed.

I think of the times I have been able to care like that, the patients I have known over the last 25 years who have allowed me to be a part of their lives. The house calls made, the phone calls answered, the stories told and the tears that were shared. So often what mattered most were the moments shared, not the medications prescribed.

Our society is moving away from these relationships. Medicine is now practiced according to a set schedule. Interactions with primary physicians are often limited to the hours of 9-12 and 2-5, Monday through Friday, if scheduled in advance.  After office hours and on weekends patients get the stranger in the Emergency Room or the Urgent Care Clinic. The feeling seems to be that people need a doctor, that seeing their doctor is not all that important.

The woman’s story, and my experience, suggest this is not true. There is more to good medical care than knowing medicine. Truly excellent care requires knowing the person who is receiving treatment, a truth small-town doctors know and the rest of us need to learn.

- Bart

Your Doctor Isn't a Robot

News flash- doctors are people. As such, we do people things. Please don’t punish us when we do.

I recently had a patient come in because he had been coughing for three weeks. This year’s cold and flu season was a particularly “coughy” one, so I was not surprised he had been coughing for so long. Although his cough did not worry me, it was obviously a concern to him, so I did my best to address his fears.

Although I did not think pneumonia was likely, it was a possibility. This, combined with his concern, was enough for me to order a chest x-ray. I sent him off to get the pictures taken, making sure to mark the order “STAT” so the radiologist would send a report the same day. A few hours later I sent the patient a message telling him that the results were normal and that he had nothing to worry about. I was confident I had done a good job and that the patient was satisfied.

He wasn’t.

Several weeks later I received a report on the results of the medical group’s most recent patient satisfaction survey. My scores had declined dramatically. I searched the report for an explanation and found it in the comments section. The coughing patient had left a scathing review, saying, “I went in for a cough that has lasted several weeks. Doctor Barrett ordered an x-ray but did not give me anything for the cough. He obviously does not care at all about his patient’s feelings.” Ouch!

In typical human fashion, I had focused on one thing, making sure he did not have a pneumonia. As I was waiting for the results to determine treatment, and as the x-ray was normal, I had notified him of the good news and forgotten to send in a cough medicine. Oops! What to some would be a harmless and understandable mistake was for him a capital crime. Off with my head! (And down with my patient satisfaction scores!)

Such disproportional wrath has become a regular part of medical practice. It is not uncommon for patients to tell me how “bad” another doctor was. A recent patient complained to her insurance about her oncologist because of a side effect from chemotherapy. The fact that the doctor had picked the best medication and prescribed it appropriately did not matter. Her cancer was better, but she had gotten dehydrated and he needed to be punished.

I have heard doctors criticized for saying too much and others for being too quiet. One patient will complain about too long of a wait, the next will complain about a doctor only spending 15 minutes with him (for a 15-minute visit.)

I sometimes think patients do not understand our humanity. We work hard to avoid big mistakes such as incorrect medications and missed diagnoses, but we sometimes make little mistakes such as failing to click the “send” button after entering a medication, forgetting we had a meeting at the hospital and running late in the office, or forgetting a patient’s name.

The best patients understand this and extend us grace and a helping hand. They ask questions when communication is not clear, instead of saying we do not care. They forgive us when we have to check the chart to see what their name is. They save their complaints for serious mistakes and don’t jump to negative conclusions.

The very best patients go even further. They say, “Thank You.”

- Bart

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Ulcers, Easter, and Truth

Truth is at times unbelievable.

By the early 1980’s medical experts were certain they understood the causes of gastric ulcers. As the stomach is an acid secreting organ, and because acid can damage tissues, everyone knew that acid was the reason people got ulcers. Because ulcers were more often found in urban businessmen, doctors concluded that stress had a role. This theory was “confirmed” by studies in rats that showed ulcers developed when rats were wrapped in straight jackets and dropped in ice water, and when research showed antacids prevented these ulcers.

Enter Barry Marshall, an internal medicine doctor in Perth, Australia. Along with a pathologist colleague, Robin Warren, he gathered evidence that ulcers were the result of a bacterial infection. Further, he found evidence that the bacteria was a root cause of stomach cancer. He started treating ulcer patients with antibiotics, with remarkable results.

The medical community refused to accept his findings. They thought they knew the cause of ulcers, and could not believe that a bacterial infection could be the cause. It did not make sense. Bacterial infections were the cause of acute infections, of pneumonias and ear infections and sinusitis and cellulitis. They did not cause chronic infections, and they definitely did not cause cancer. Marshall’s theory was simply unbelievable.

It was unbelievable, but it was true. Convinced of the truth of their claims, Marshall and his colleague fought for their findings. The medical community took longer than they should have to accept their research, but the eventually did. In 2005 Marshall and Warren, were awarded the Nobel Prize for medicine. They changed the world of medicine forever.

Their story came to mind today as I thought about Good Friday and the Easter Story. The Gospel accounts tell an unbelievable tale. The Bible declares that Jesus of Nazareth, a Jewish teacher of dubious parentage, was actually the Son of God. This Son of God, instead of asserting his right to rule and demanding that all honor and worship him, allowed himself to be put to death at the hands of the Romans who governed the conquered Jewish nation. He was publicly executed in brutal fashion, nailed to a wooden cross where he hung until in agony he died.

The story did not end with Jesus’ death,  the New Testament writers report that 2 days later he appeared alive to many of his followers. He had risen from the dead, in so doing proving to the world that he was indeed who he had claimed to be, the Son of God and the savior of the world.

What an unbelievable story.

So much of the story does not make sense. Why would God decide to live as a man? Why would he choose to die? Why couldn’t he just choose to forgive everybody without going through such suffering? How could someone come back to life after two days in a tomb. There are too many “whys” and “hows”.

The story flies in the face of so much that people know. The story is unbelievable.

That does not mean it isn't true.

- 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.