By Fr. Patrick Pullicino

 

As a physician I have followed the issue of “end of life” pathways closely over the last fifteen years. Last year a new report in the UK, “When End of Life Care Goes Wrong” reviewed 600 complaints and showcased 16 cases that breached ethical and legal limits of what is acceptable as end-of-life care and cases that warranted prosecution for unlawful homicide. The report gave proof that crucial medical ethics constraints had been abandoned, with treatments withdrawn and measures initiated that resulted in an active hastening of death. Lack of consent from patient or family revealed a coercion based on a spurious determination of what was in the best interest of the patient. This report is tangible proof that end-of-life pathways have infiltrated back into the health system and are widespread throughout the NHS. They are also tainting the once good name of “Palliative Care” under whose auspices the end-of-life care teams function. How did this situation come about?

Dame Cicely Saunders was the doyenne of the modern hospice movement, she started over fifty years ago. She recognised that patients who were dying needed compassion and respect and that they should not be abandoned by their doctor but continue to receive the best medical care. She was strongly against euthanasia and said that true palliative care “regards dying as a normal process and never hastens death.”

The first clear departure from her principles was the Liverpool Care Pathway (LCP). The key component of the LCP was a mechanical syringe that continuously delivered three medications: morphine (pain killer), midazolam (sedative) and glycopyrrolate (reduces saliva). A nurse gradually increased the doses without need for a doctor’s input but based on patient’s symptoms (so-called anticipatory prescribing). The LCP was successfully used on dying cancer patients so was extended to all patients who were deemed to be “dying”. It was quickly taken up into the NHS after 2005 and by 2012, 29% of NHS patients were dying on the LCP. An increasing public outcry against inappropriate deaths from the pathway caused the government to set up an enquiry (Neuberger report) which discontinued the use of the LCP in 2013.

Although it departed so far from the principles set out by Dame Cicely, the LCP had continued to be called “palliative care” and Palliative Care teams delivered it. Hospice care was another term, if the same pathway was used in a hospice. The LCP was stopped, but palliative care consultants and teams spread and continue to work unabashedly in the NHS and we now find that there is much in what they are doing that is identical to the LCP.

Why do palliative care teams continue to deliver what is essentially lethal treatment? What appears to have happened is that a spurious ethos of a “good death” developed around the LCP. The goodness of death was inferred by how quiet and calm the patient appeared to relatives and bystanders. Feeding and intravenous tubes were also seen as disturbing a “good death”. Relatives could be shown how serene and pain-free their loved one was, (under the effects of increasing midazolam and opiates). Agitation and confusion frequently seen in elderly patients and that engenders concern in relatives and work for staff, was banished and made this ethos defensible. The knowledge that the patient would only survive an average of 29 hours on the LCP and cut costs dramatically ensured that hospital management strongly backed this new way of dying. This ethos of a good death has entrenched itself in palliative care teams and NHS end of life “care” so much so, that its proponents staunchly defend it and justify its negative components with evangelical determination.

Palliative care is now included by World Health Organization (WHO) as a human right of health. The WHO says: “Palliative care improves the quality of life of patients and that of their families who are facing challenges associated with life-threatening illness, whether physical, psychological, social or spiritual. The quality of life of caregivers improves as well.” – last year’s report, outlined above, reveals that there are at least 600 families for whom this is not true. In 2002, it was announced that “dying people will be given an explicit legal right to healthcare for the first time in NHS history, requiring every part of England to provide specialist palliative care.” So palliative care is becoming a legal right if you are “dying”. The problem is that it is impossible to diagnose with any reasonable certainty that someone actually is dying. Even a very experienced clinician cannot do this. Who then is this “right” going to be applied to? And how can we be sure that what happened to the patients in the report will not keep happening to others?

The latest development of this “right” in Europe is that palliative care is now deemed good for all chronic disease as a new EU initiative being trialed in Malta states: “Palliative care improves the quality of life of patients with chronic debilitating illnesses or conditions as well as their families’ experiences. Our target is to address palliative needs as early as possible in one’s chronic illness journey.” So now it is not only the dying, but all with chronic disability! This takes in a large proportion of the elderly population. How is it that we have just found out how wonderful palliative care is? How were we coping without it before? The problem about palliative care is that it can no longer be trusted to “care” and not to kill. It may sound reassuring to some to say that palliative care improves quality of life and ensures human dignity at all stages of an illness. However, the LCP was said to “drive up the quality of dying”. And who is going to assess variables like quality of life, dignity and what is a good death?

St. John Mary Vianney tells us that life is given to us so that we may learn to die well. The last days of our lives are the most important – the good thief’s action, at the last hour, took him to heaven. Our last few days are spiritually crucial to put ourselves at rights with the Lord. The darkest evil of end-of-life pathways is not only that they hasten death but that they may prevent us from repenting for sins undeclared, and from dying in a state of grace and reaching our heavenly goal. Those who judge a “good death” by the external appearance of serenity are all too ready to use opiates and midazolam to reach this, and in so doing may take away our last chance of confession and forgiveness. For Catholics this is the most sinister trap of end-of-life “care”.

Having had experience as a hospital chaplain, I found that often staff do not call the Catholic chaplain for Catholics because of a concern for privacy violation. They leave it up to the patient, who may be too ill to do this. Many patients experience spiritual suffering when they are ill and recent research shows that “spiritual care” is one of the most neglected aspects of palliative care.1 While it is encouraging that spiritual needs are being acknowledged, instead of facilitating appropriate chaplains’ visits or questioning the extreme negative spiritual effects of end-of-life pathways, palliative care doctors are now focusing on developing new research efforts to understand how to help spiritual suffering!

One major nagging concern about the widespread enthusiasm for palliative care for all disabled is about finances. Where is the financing for all these new palliative care teams coming from? One of the factors that greatly facilitated the LCP was that it saved NHS trusts a lot of money, since the sick elderly tend to have long expensive admissions. A recent missive from WHO/Europe states “One way to manage this rise in costs is to ensure a better balance between disease treatment and the management of symptoms at the end of life.” How is “management” of symptoms different from disease treatment and how then does it save money? Unless “management of symptoms” is just a euphemism for putting someone on an end-of-life pathway?

 

  1. Quinn, B., Connolly, C. (2023) Spirituality in palliative care. BMC Palliative Care. 22:1.