A Review of UK end-of-life policy and practice
By Anthony Cole and John Duddington
Blanket DNACPR (Do Not Attempt Cardio-Pulmonary Resuscitation) notices are reportedly being issued in UK hospitals and nursing and care homes. The practice has become more widespread during the Covid-19 pandemic. The Parliamentary Joint Committee on Human Rights pointed out the increased use of the practice in a September 2020 report, which particularly criticised the issuance of DNACPR notices for persons with learning disabilities or other similar impairment, solely or primarily on that basis.
‘It is discriminatory’, the authors of the September JCHR Report wrote, ‘to apply DNACPR notices in a blanket manner to groups on the basis of a particular type of impairment, such as a learning disability; or on the grounds of age alone’. The Care Quality Commission reported in December 2020 that they had been told of cases in the pandemic where people received DNACPR decisions ‘which were not based on their wishes and needs, and without their knowledge and consent’.
Meanwhile Bishop Richard Moth, on behalf of the Catholic Bishops’ Conference of England and Wales, has expressed ‘distress’ at a January 2021 report by the charity Mencap that people with learning disabilities had been told they would not be resuscitated if they were taken ill with Covid-19.
Crossing the Rubicon
The recent document from the Congregation for the Doctrine of the Faith, Samaritanus Bonus, takes up these concerns:
[I]n some healthcare settings, concerns have recently arisen about the widely reported abuse of such protocols viewed in a euthanistic perspective with the result that neither patients nor families are consulted in final decisions about care.
The courts forced the crossing of the Rubicon in the 1991 Tony Bland case, when they held that food and fluid were medical treatments and could therefore be withdrawn. As Samaritanus says:
Nutrition and hydration do not constitute medical therapy in a proper sense….They are instead forms of obligatory care of the patient, representing both a primary clinical and an unavoidable human response to the sick person.
There may come a time when food and nutrition no longer benefit the patient – and Samaritanus recognises that they can be withdrawn – but the fundamental principle remains, as St. John Paul II put it: ‘[T]o cure if possible, always to care’.
End of Life Care Plans
These are commonly used and have in effect replaced the controversial Liverpool Care Pathway (LCP). The problem remains the same though: patients are put on a pathway which determines what care will, and crucially will not, be provided, and this can simply be a route whereby food, fluids and medication are withdrawn so that death inexorably follows. It is also vital to be aware that some medications which may be administered at this time can also depress respiration especially in the presence of dehydration.
One reported instance of abuse of a pathway was of a man with dementia who died after food, water and oxygen were taken away when he was put on the LCP. His daughter described her father’s end as ‘barbaric treatment even worse than a dog’ as they watched him slowly die. Although the LCP has gone the idea of a pathway remains and this could still happen.
Lack of Consultation
Lack of consultation is common. It is also generally unlawful. The Court of Appeal held in 2014 that under Article 8 of the European Convention on Human Rights (respect for private and family life) a hospital had violated a patient’s right to be consulted before a DNACPR notice was put in her notes. The patient had in fact expressed strong views about her wish to be involved in decisions regarding her treatment. The court held that ‘a clinician has a duty’ to consult the patient in relation to DNACPR ‘unless he or she thinks that the patient will be distressed by being consulted and that that distress might cause the patient harm’.
Rendering the patient unconscious
The effect of administering sedative and other drugs is likely to make the patient unconscious. Here too, current medical practice often goes too far. Samaritanus Bonus refers to the Charter for Health Care Workers issued by the Vatican in 1980 as emphasising that ‘as they approach death people ought to be able to prepare in a fully conscious way for their definitive meeting with God’. Therefore ‘it is not right to deprive the dying person of consciousness without a serious reason’.
What to do?
Under UK law you can make a power of attorney and have it registered. Then your attorney takes your place if you are unable to make end of life decisions.
Think carefully about the section dealing with end of life decisions. You should consider the option which gives your attorney authority to give or refuse consent to life-sustaining treatment and it is vital is to make your wishes clear about end of life care. An example is:
I am a Roman Catholic and in all decisions about my health care the teachings of the Catholic Church on end-of-life decisions must be observed. I do not consider food and water to be medical treatment but instead consider them to be fundamental necessities of life. Therefore, I wish to be provided with food and water, including medically assisted nutrition and hydration.
I am absolutely opposed to euthanasia and expressly forbid any treatment or failure to treat which might constitute euthanasia. I do not wish any notice which says that I am not to be resuscitated to be placed on my bed or in any other place. Instead I wish all decisions of this kind to be made in response to specific medical situations.
Be specific: do not just say ‘I am a Roman Catholic’ and assume that this covers all your wishes. It will not, as a recent case from Plymouth UK shows.
This involved a Roman Catholic who suffered irreversible brain damage following a cardiac arrest and medical evidence was that at best there was a 10-20% chance that he might progress even to a minimally conscious state. He appeared not to have made a power of attorney. His family in Poland said his strong Catholic faith meant that he would wish to be given food and fluid but his wife in England said that from her knowledge of his wishes he would not want this. After frantic but unsuccessful legal challenges by his Polish family, the wife’s wishes, at the time of writing, have prevailed.
Do not be pushed
Before any decision, ensure that there is a proper discussion and make notes as the meeting goes along so that you have a clear record. Remember that patients, and attorneys acting on their behalf, have the legal right to access the patient’s medical records.
Interesting in this regard is a letter to the Government from the British Medical Association and other influential health care bodies, which urges that ’emergency legislation is needed to protect doctors and nurses from “inappropriate” legal action over critical Covid-19 treatment decisions made amid the pressures of the pandemic’.
That may sound like a reasonable request – and in some cases, it almost certainly is – but the effect of such legislation on our current circumstances would be more cover and more scope for euthanasia.
The reference in Samaritanus Bonus to end-of-life protocols having a euthanistic perspective is timely. If we put together the points highlighted above: withdrawal of food and fluid, misuse of end-of-life care plans, unlawful DNACPR notices and lack of consultation; then we have euthanasia on a large scale, disguised and increased in scale by the Covid-19 pandemic.
Enlightened and energetic public engagement
If clergy properly instructed their congregations in Church teaching on end-of-life care, it would make a difference. This is simply not happening broadly or consistently enough. In part, this is because not all clergy are up to date with the nuances of the Church’s teaching in this area.
On the ground, meanwhile, priests frequently know hospital authorities because of professional relationships. When that is the case, it can mean that a cleric is more likely to trust hospital authorities’ judgement when it comes to a parishioner or (or a parishioner’s family member) in hospital. This means that seeking advice from a parish priest simply because he is a parish priest a two-edged sword. Our clergy want to help, and want to get it right. We need to do more to help them be able to do so.
Catholics — and everyone who cares for the dignity of human beings — must be vigilant. Those who can, must speak out. Those who have a duty to teach and be active in the public square must acquire the knowledge that will put them in a position to discharge their duties.
Dr. Anthony Cole is a retired consultant paediatrician and Chairman of the Medical Ethics Alliance. Dr. John Duddington is editor of Law and Justice, the Christian Law Review
This page is available to subscribers. Click here to sign in or get access.