Removing the battery: can a doctor decide how a patient should die?

The pleasantries exchanged, she smooths her dress and positions herself in a more comfortable spot in the hard chair. She nudges her walking frame away and untangles the oxygen tubing so that it doesn’t strain against her nostrils. She does all this in a silent, deliberate motion.

We had met only once before. That was when she found out that her nagging "winter cough" was really a sign of the lung cancer that had permeated her whole body. She said she had always known she would develop cancer, from the day she declared to her mortified parents that nothing would unyoke a modern woman from her cigarettes. Yet, the diagnosis was not without its accompanying shock and sadness.

A former teacher, she had dissected the particulars of her diagnosis. Her husband, and fellow smoker, had succumbed to the same illness. She was intent on avoiding what she thought was his wretched experience of chemotherapy. Shakily at times but with admirable equanimity, she told me that she was going home to Bristol where her ancestors rested. So I am somewhat surprised to see her return to see me.

Taking a shallow, painful breath, she begins, "You thought I’d be gone by now."

"Gone to Bristol, yes", I reply, making a mental note of her pallid skin and further weight loss since we met. "What happened?"

"I kept my cardiology appointment."

Tears well up in her tired eyes. I slide a box of tissues along the desk. I know that a defibrillator had been inserted years ago after a cardiac arrest that she miraculously survived. I have a terrible sense of what’s coming.

"He said that the battery is due for replacement. But since I have a terminal illness, I might want to reconsider it."

She looks at me and falters. "I mean, he was lovely but what he was really saying is that since I am going to die anyway, why complicate matters by fending off a cardiac arrest?"

Lost for words, I just wait.

"Modern medicine is all about choice", she says, stifling a sob. "I can choose to die from lung cancer or a cardiac arrest."

"I am sorry", I finally say. "You could have done without the latest news."

"I was reconciled to a slow but predictable decline from cancer, barring a crisis. But if my defibrillator runs out of battery, I could literally drop dead. It’s not the dying but the awful decision in between that upsets me."

Slowly, we pick through her thoughts – ranging from highly practical matters like finalising her will, to existential questions about the nature of suffering. I become aware that I am not quite offering my patient the certainty or even solace she seeks. Her problem is so confronting that I feel hampered by doubt and fear that a misspoken word or a careless expression could lead to a cascade of distress.

Cardiac arrest or lung cancer. Should we attempt to replace the battery?

My heart sinks. I find myself unequal to the monumental task of helping my patient navigate the most difficult decision of her life. I think back wistfully to my ethics fellowship, where a team of doctors, ethicists and philosophers would have illuminated the various complexities and provided the treating clinician with guidance.

The weightiest decisions in medicine are not about which tests to order, or what drugs to prescribe; they actually take place at the sharp intersection of medicine and ethics. Many aspects of daily medical practice eventually become routine – involving pattern recognition, accumulated expertise and a healthy dose of conjecture.

Indeed, doctors must master these aspects of the job in order to treat patients efficiently. But alongside the routine run of managing diabetes, administering antibiotics and repairing fractures, momentous decisions unfold that do not follow a tidy protocol.

The wife of a somnolent, demented man insists on a feeding tube, saying it is obvious that he can still connect with his loved ones. In the absence of an advanced directive, whose decision is it to place or refuse the tube?

Who has the final say in turning off a cancer patient’s ventilator support? Who should grapple with the patient who sees nothing wrong with purchasing an illegally harvested kidney? Who ultimately decides whether to disable the pacemaker of a quadriplegic elderly man?

Anyone who has actually been involved in these charged decisions knows that simply quoting the law, if there is one, feels woefully inadequate. The process requires both head and heart. Extraordinary calls get made in hospitals because something "just feels right" to one doctor, or because the ramifications of a course of action are far from obvious. These situations can leave patients exposed to idiosyncratic, potentially unethical practice – and cause doctors enduring qualms.

The great and growing ethical dilemmas of modern medicine call for a different kind of doctor: one who can make quick decisions where required but who also possesses depth, sagacity and the ability to acknowledge when a case moves into a blurred ethical space. Unfortunately, the latter is the stuff that 10-minute, corporate medicine leaches out of us. Later, many realise they either never acquired the skill and judgment to make hard calls, or lost it along the way.

From genome sequencing to gender selection, from cost of care to withdrawal of care, our healthcare dilemmas are mounting with the advent of new technology. The role of a hospital clinical ethics committee can be invaluable for doctors and patients seeking counsel.

Yet, in many places, ethics committees are still synonymous with research ethics that serve a crucial, but limited, purpose. Approximately 20% of patients enrol in clinical trials. The figure in cancer is less than 5%. Minorities, non-English speakers and the elderly are dismally represented.

Many more patients than this encounter an ethical dilemma in the course of a long illness. We all benefit from the insights of practicing clinicians, doctors and nurses, with robust ethics training, who see real-life patients with real-life dilemmas. Sometimes they shape consensus, or help us appreciate the flaws in our thinking. Other times they help us to see that it's normal to feel conflicted or dejected, but to stay the course.

Weeks later, I received a note from my patient in Bristol. She declined a new battery. "It wasn’t easy" she wrote, in her profoundly understated way, before thanking me for listening. I cannot imagine the ordeal she went through before arriving at her decision.