A 52-year-old woman came into our hospital in New York bleeding to death.
She had advanced stage throat cancer. Her tumor, on the left side of her neck, was both pushing into her airway and a major artery. As the tumor grew, the woman could no longer breathe, and when her artery ruptured, blood started pouring into her lungs.
She would die by drowning in her own blood.
Her husband was understandably overwhelmed and distraught. He instructed us to take any measures possible to keep her alive. She was too weak to contradict her impassioned and dedicated husband.
This was, in my view, the wrong choice from an ethical and clinical perspective. How could I uphold my oath to do no harm when I knew she would die a particularly gruesome death, and I was instructed by her husband to keep her alive and in this state? I would have to crack her ribs during chest compressions and electrocute her to attempt to restart her heart. Regardless of whether we could keep her heart beating, the rest of her body would still be irreparably consumed by cancer. It was anguishing to be forced to inflict this sort of violence on this dying woman.
Recently in the UK, a patient’s family took doctors to court claiming that doctors at the Addenbrookes Hospital ‘badgered’ Janet Tracey, a 63-year-old woman into agreeing to a Do-Not-Resuscitate (DNR) order and ultimately instituted it without the family’s permission. She had fractured her neck in a car accident shortly after she was diagnosed with terminal lung cancer. The controversy surrounding the incident spotlights questions of whether there is a legal duty to inform and consult patients on DNR decisions, and whether patients should have the right to demand resuscitation.
The courts decided the case should not go forward to judicial review, thus reaffirming that the decision to pursue CPR should be based on the doctor’s clinical assessment of what is in the best interest of the patient. I believe that it was the right decision. CPR is not always the life saving procedure that one typically sees on television. Outcomes in patients who are in the last stages of a terminal illness are extremely poor and prolonged oxygen deprivation during CPR frequently results in irreversible neurological damage.
The debates surrounding this case reflect a rightful demand for greater control in personal health care decisions and enhanced communication between the provider and the patient. But, as was the case with the woman in New York, I have seen countless situations in America where physicians are put in the ethically uncomfortable position of having to aggressively intervene upon a patient they believe have no chance of survival.
In the US, any decision to institute a DNR order must come from the patient, his family, or appointed surrogate. While this gives families a sense of control and decision making capacity over their loved one’s care, it also places a significant burden of guilt onto them. They are forced to make decisions that aren’t actually choices. I found it cruel to have to ask families already suffering emotional trauma to ‘refuse’ this useless procedure. Not only does it create false hope, but it also makes families feel as if they’re having to decide whether to give up on their loved one. When the end of life is inevitable, it is God or nature who decides, not doctors or families.
An essay by Ken Murray, an American physician, entitled ‘How Doctors Die’, resonated deeply amongst the American medical profession. He recognized that when it comes to themselves, most doctors do not want to be subjected to “futile” care. They know modern medicine’s limits and its ability to subject our loved ones to “misery we would not inflict on a terrorist.” Medical decisions to withhold CPR do not occur because doctors have given up, but instead from efforts to prevent unnecessary suffering at the end of life.
Unlike the US, here in the UK the ultimate decision regarding resuscitation lies with the doctor. The UK General Medical Council stipulates that doctors are not obligated to provide treatments at the end of life, including resuscitation, that would not be clinically appropriate or of overall benefit. This guidance reflects the position that these are clinical decisions; patients may not demand treatments that physicians believe would be futile or would not result in a meaningful prolongation of life.
The recent focus on autonomy over decisions at the end of life in the UK, through Tracey’s court case as well as controversy over the Liverpool Care Pathway, highlight the need for continued dialogue and clarity on these issues. The lawyers involved in the Tracey case have rightly affirmed that these decisions should not be made in the courts – a process that encourages suspicion and public anxiety.
Instead, we should work together to foster trust and confidence in the health care system, by encouraging conversations about resuscitation decisions at all levels. The NHS’s Dying Matters initiative has already pioneered efforts to change public perceptions of dying and counter unrealistic expectations. Future guidelines should be established through public consensus between practitioners who have professional expertise in this area and key stakeholders.
I feel that the UK is at a crossroads in much the same way that the US was several decades ago. High profile court cases surrounding patient rights at the end of life catalyzed a set of changes, which led to America’s current system of aggressive treatments at all costs regardless of futility or clinical common sense. I encourage my British colleagues to looking across the pond to the US as a cautionary tale of how these decisions impact our ability to serve in the best interest of our patients.
Published in the Huffington Post on January 18, 2013