Dying with dignity – what next after the Liverpool care pathway?

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