NHS – Elizabeth Dzeng, MD, PhD, MPH

Controversy and opposition over the Liverpool care pathway (LCP) has prompted the Department of Health to commission an independent review into the end-of-life system. A report released on Monday revealed “numerous examples of poor implementation and worrying standards in care,” prompting the commission to recommend phasing out the pathway over the next six to 12 months.

Used correctly, the LCP allows people to die with dignity – surrounded by loved ones rather than machines and in peace, rather than in the violent throes of CPR. But instead, examples of LCP-induced distress flooded the news over the past year.

The implementation of the LCP was so deeply flawed that rather than facilitating a good death, in some cases it worsened the emotional burden and created missed opportunities for proper goodbyes. Much of this can be attributed to a critical failure of communication between doctors and patients and their families.

Communication is integral to successful treatment in almost every aspect of medicine, but nowhere is it as evident as in care at the end of life. As such, no end-of-life intervention will be successful unless doctors fully embrace family discussions as a required component of treatment. The LCP guidelines emphasise communication as part of the pathway, but too often that falls to the wayside.

Most importantly, this is the time for the dying person to say their final farewells and get their affairs straight, but also for their family to begin coming to terms with their impending loss. A family member of a patient on the LCP lamented: “My mum didn’t even get to say goodbye to her husband of 51 years because she was too traumatised.” Beginning the process of bereavement is impossible if the family is kept in the dark about imminent death and implementation of the LCP.

This failure to communicate with both patients and the public, turned the LCP into a “‘barbaric’ end of life pathway” where people were “starved to death”.These phrases highlight fears and misunderstandings about the end of life, where cessation of eating and drinking is actually a wholly natural sign that death is approaching.

We have an innate desire to nurture and feed the weak, but hydration can potentially do more harm than good. Often the heart is too weak to pump blood, causing water to accumulate in the lungs and resulting in breathlessness and a horrible feeling of drowning. Fluid can also accumulate in the flesh causing pain and discomfort. What should never be withheld in the LCP are pain medications and other therapies such as oxygen that help relieve distressing symptoms.

Palliative care and the LCP should not be thought of as causing death. When the end of life is inevitable, it is (depending on what you believe) God or nature who decides the moment you go, not doctors or families, and it is certainly not determined by whether food or drink is given. Care at the end of life is as active and intensive as any other treatment – just with a different goal in mind. Indeed, a focus on comfort and symptom management early on has been shown to extend life, decrease depression, and improve quality of life. As doctors make the most informed patients, it should be reassuring to know that 90% of doctors would be happy to be placed on the pathway themselves if they were dying.

Many challenges inherent in the healthcare system hinder a doctor’s ability to communicate. Time pressures and heavy workloads make it difficult to have lengthy conversations, especially those that address topics the doctor may not be personally comfortable with. A recent survey by the Royal College of Physicians showed that 37% of medical registrars felt their workload was “unmanageable”. In a system described as “unsafe” and at a “crisis point,” important conversations are crowded out by the need to acutely stabilise other ill patients under the doctor’s care.

This is further exacerbated by the taboos British society holds against discussing death. According to one study, approximately 75% of the public and GPs agree that British people are uncomfortable talking about death and dying and only 30% of people have talked to their loved ones about their own wishes.

Future efforts to replace the LCP must include system-wide changes, which address these structural challenges. Medical education will need to intensify efforts to train junior doctors and medical students in end of life discussions and expose them frequently to issues of death and dying. The medical profession will need a shift in mindset to reprioritise the importance of interpersonal relationships and communication into the practice of medicine. Although logistical and budgetary constraints limit the NHS’s ability to lighten workloads, alternative programmes could be considered to bring in social workers, chaplains, nurses and community volunteers to improve patient and family empowerment regarding end-of-life issues.

The Liverpool care pathway has met its end, but the need to promote a peaceful and dignified death has never been more important.

This piece was originally published in “The Guardian” on 16 July, 2013

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

Tag: NHS

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