by Georgia Clarke

“I felt as if I’d been sent a death warrant by the Grim Reaper”
- Elizabeth John, patient at Llynfi Surgery, Maesteg

In recent weeks, alarming reports have emerged about how groups of vulnerable patients have been asked, via a letter or a phone call by their GP, to sign a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) notice/order. This has resulted in justified outrage, with family members distraught at the idea their loved one is being asked to ‘sacrifice themselves’ for someone deemed more worthy of treatment[1], and others claiming it’s ‘legal eugenics made to sound like euthanasia’[2].  Unfortunately, there has been much confusion as to the nature and purpose of DNACPR notices and whether the kind of request made by these GP surgeries is acceptable practice. This piece will discuss the law and clinical guidance with respect to DNACPR decisions and will hopefully provide some clarification between the facts and the myths from these cases. It will ‘debunk’ 5 myths about the DNACPR controversy, in a bid to expel the fears that are circulating, for as Rachel Clarke wrote, ‘fear is as contagious as coronavirus itself’[3]. We must work hard to protect and care for our most vulnerable and certainly blanket requests such as these are not the answer. May we use this controversy as an opportunity to implement better care plans and initiate more dignifying conversations about everyone’s end of life care. 

 

What’s the coronavirus DNAR controversy about?

 

In light of the recent coronavirus pandemic, healthcare providers have been acutely aware of the strain the NHS is under to continue to provide high quality care to all who require it. In Wales, a GP surgery in Maesteg sent a letter to their patients with known life-limiting illnesses, such as incurable cancer and untreatable heart and lung conditions, that they would like to complete a DNACPR form for them. The letter stated that by filling out this DNACPR form, their friends and family will know ‘not to call 999’ and that ‘scarce ambulance resources can be targeted to the young and fit’[4]. Another surgery in Somerset has been reported to have sent a similar letter to Voyage Care, a group that cares for adults with autism, instructing them that those they support should also be under DNACPR instructions. Again, one care home manager in Hove was told by their GP that none of their residents over the age of 75 would be admitted to hospital[5], which left staff feeling “shocked and numb”. Numerous other reports of the same nature have been exposed.

 The actions and words of these healthcare providers in sending out requests for DNACPR notices to be completed has caused a public outcry, revealing both our (the public’s) convictions about how the elderly and otherwise vulnerable should be treated (thankfully continuing to reject any utilitarian mindset), but also many deep-seated misconceptions about medical treatment provision at the end of life. It is important for us to separate that which should rightfully be a cause for concern, from that which is simply untrue. 

 

Myth No. 1: DNACPR Orders are Made by the Patient and are Legally Binding 

DNACPR decisions are made by the clinician, either at the request of the patient or as a shared decision, that CPR would not work or would not be in the best interests of the patient. The patient must be involved in this decision unless to do so would cause significant harm, though distress at the prospect of the conversation is not enough to warrant ‘significant harm’ (see R (Tracey) v Cambridge University Hospitals NHS Foundation Trust & Ors [2014] EWCA Civ 822). If a decision has been made that CPR would be futile, the patient must be informed of this, so they may seek a second opinion if they wish. If a multi-disciplinary team all agree that CPR would be futile, then no second opinion is necessary. If the patient lacks capacity[6] with regards to this decision, the healthcare team can decide to impose a DNACPR order, but they must involve family/close carers/anyone interested in the patient’s welfare wherever possible (see Winspear v City Hospitals Sunderland NHS Foundation Trust [2015] EWHC 3250 (QB)). Completed DNACPR forms are not legally binding but are taken into consideration in any future care given to the patient. 

 

What is important to note is that these decisions are arrived at after consultation on an individual basis, where the relevant information can be said to be sufficiently understood (retained, weighed, and communicated[7]) by the patient/close family member wherever possible. Sending out forms en masse to be completed by individuals who clearly have not had their individual capacity assessed, nor their family members consulted, is totally contrary to good practice. The Department for Health and Social Care, in responding to the recent reports, have said[8] that it is ‘unacceptable’ for these DNACPR orders to be applied ‘in a blanket fashion to any group of people’ and that the CQC have been responding urgently whenever they have been alerted to this happening. 

 

Myth No. 2: CPR Is More Likely Than Not to Save A Person’s Life 

 

In the UK, fewer than 10% of all people who suffer a cardiac arrest outside a hospital and where a resuscitation attempt is made will survive.[9] A study published in the British Medical Journal in 2015 found that during the daytime on weekdays initial resuscitation attempts were successful in 52%, but that only 26% survived to leave hospital.[10] The process has been described by clinicians as “muscular, aggressive, traumatic”[11]. The likelihood of the patient’s ribs breaking, significant bruising occurring, and damage to internal organs is not negligible. For some patients, this type of intervention is absolutely appropriate and worthwhile for it carries the possibility of restarting the heart, or ‘buys time’ for emergency services to arrive. No patient can demand CPR, but they can make their wishes known if they would like to be kept alive at all costs. Clinicians often take the decision to make a DNACPR order seriously, mindful of what is truly in the patient’s best interests (not everyone can be treated or saved) and wanting them to have as dignifying and comfortable a death as possible. It seems reasonable to be sceptical of the intentions behind these ‘blanket’ DNACPR orders, and more ought to have been done to have these conversations sensitively. Pandemic or no pandemic, there is no excuse in treating any patient with less respect or consideration. ‘Perfect love casts out all fear’, St John tells us, but all these letters seem to have done is cause vulnerable people to feel less loved and more fearful. It is our role, as Catholics, as medical professionals, to restore the fact that these lives are of equal worth to anyone else’s. That doesn’t mean they require the same medical treatment, but they do require the same level of care.

 

Myth No. 3: A Completed DNACPR Order Means A Patient Won’t Be Taken to Hospital

 

It is simply untrue to say, as the Welsh GP letter read, that those with life limiting illnesses are ‘unlikely to be offered hospital admission if they become unwell and certainly will not be offered a ventilator bed’[12] should they require admission during this pandemic. Health Secretary Matt Hancock stressed that it was ‘absolutely not a blanket rule that people shouldn’t go to hospitals from care homes. Hospital is there for people when they need it, when the doctors advise they go’[13]. If they have agreed to a DNACPR order, it is vital to note that this applies to a very specific procedure in a specific circumstance (i.e. when a patient’s heart has stopped, and they require chest compressions and shocks to the heart in an attempt to restart it). Some fear that nothing else will be done to care for the patient or that no attempt to prolong the life of the patient will be taken. This is not true, many other treatment options may be appropriate, such as oxygen, antibiotics, or admission to ICU.

 

At this point, it’s necessary to look at advance care plans and how they differ from CPR notices. Advance care plans focus on the patient themselves and what they want with regards to their care. If the person has capacity to make these decisions, or to participate in making them, there are three courses of action that can be taken: an advance decision to refuse treatment (ADRT), an advance statement of care preferences/values, and/or an appointment of an attorney. If a person lacks capacity then their wishes, feelings, values, and beliefs must be identified. With an ADRT, it must be in writing, signed, and witnessed. There must be an acknowledgement that it applies even if their life is at risk. So, even if a clinician believes that CPR is not futile, a valid advance decision to refuse CPR will be legally binding and CPR could not be given, or the clinician could face a charge of battery. Advance statements will be discussed under Myth No. 5.

 

Myth No. 4: Catholic Teaching Requires Us to Preserve Life at All Costs

 

In the 16th Century, Francisco de Vitoria, a Dominican theologian, outlined principles with regards to death and dying which are still relevant today. These include, “Human life is a great gift from God; a great good but not an absolute good, nor the ultimate good” and “If the means to prolong life are not fitting or if they impose an excessive burden, they need not be utilized”. It is said that another Dominican, Domingo Bañez, coined the famous ‘ordinary – extraordinary’ means distinction. The idea is that ordinary treatment (for this patient) is always necessary and must be provided and that extraordinary treatment is not necessary and may be withheld/withdrawn if the treatment is posing too great a burden upon the patient. Today, this distinction is decidedly less clear and there have been complex cases where there is disagreement on whether treatment is ordinary or extraordinary. Nevertheless, the words from the Vatican’s Declaration on Euthanasia in 1980 are instructive; 

“one cannot impose on anyone the obligation to have recourse to a technique which is already in use but which carries a risk or is burdensome. Such a refusal is not the equivalent of suicide; on the contrary, it should be considered as an acceptance of the human condition, or a wish to avoid the application of a medical procedure disproportionate to the results that can be expected, or a desire not to impose excessive expense on the family or the community. -When inevitable death is imminent in spite of the means used, it is permitted in conscience to take the decision to refuse forms of treatment that would only secure a precarious and burdensome prolongation of life, so long as the normal care due to the sick person in similar cases is not interrupted.[14]

 

Myth No. 5: You Only Write an Advance Care Plan if You Are Already Unwell

We are not very good as a society at talking about death and dying. This is understandable; it’s uncomfortable to contemplate not only for the patient but for their family/carers too.  What this means, however, is that two things usually happen: either it becomes too late, and decisions about your medical treatment are made in an emergency without full knowledge of what you would have wanted, or the conversation happens but when the need for end of life care is almost imminent, so the pressure to accept or refuse certain care plans is mounting and the conversation can be even more distressing. Dr. Kathryn Mannix recalls how, “The conspiracy of silence is so common, and so heart-breaking”[15]. What we all desire, for ourselves and others, is that when the time comes our beliefs and values will be respected and that we have some peace about how we will be treated. That is why Ruth May, Chief Nursing Officer, and Professor Stephen Powis, National Medical Director, emphasised that “In regard to those patients who are the most vulnerable, we should encourage them to discuss their individual wishes and concerns regarding their treatment preferences should they develop COVID-19 symptoms and record those preferences in an advance care plan.”[16] This is not to say that letters and bulk phone calls should be made, but instead “The key principle is that each person is an individual whose needs and preferences must be taken account of individually”[17]. 

 
Almost anybody[18] can make an advance care plan regarding their medical treatment. If you are contemplating your own end of life care, sites such as the ‘Art of Dying Well’ have helpful pages on how to talk about death and dying[19]. Also see the NHS official guidance document, which includes a template ADRT (p31) but do take note of page 10, which outlines the benefits as well as the risks of having an ADRT. I would suggest that there is no time ‘too early’ to at least make some kind of advance statement about one’s values and priorities. This does not need to be written but can instead be an audio or video document. Think about whether you would like to be kept alive at all costs, or to be made as comfortable as possible. This will be given considerable weight should a time come when you cannot communicate those wishes for yourself. This can be reviewed and updated regularly and, by frequently making mindful decisions about the end of life, the fear and lack of control can instead be replaced by a more peaceful, informed awareness that whatever will be done will be what you would have wanted. 

 

The end of life is as much a part of our life here on earth as any other moment. It is the moment we most definitely give ourselves over to God in complete trust and hope that “if we have been united with Him in a death like His, we shall certainly be united with Him in a resurrection like His"[20]. While we have undoubtedly practiced aspects of ‘dying to ourselves’ throughout our whole life, this moment is when we finally lay our whole lives, body and soul, down. It need not be entirely scary and unknown, instead, it can be a time we have prepared for both physically, mentally, and spiritually so that we can say confidently, “Though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me."[21] May we use this coronavirus controversy as an opportunity to face death and dying with a renewed confidence and hope, and fight for the right of those most vulnerable to be given the same opportunity.

[1] https://thebristolcable.org/2020/04/bristol-coronavirus-dnr-whos-life-to-save-do-not-resuscitate-forms/ <Accessed 17.04.2020>

[2] Ibid

[3] https://www.theguardian.com/commentisfree/2020/apr/08/do-not-resuscitate-orders-caused-panic-uk-truth <Accessed 16.04.2020>

[4] https://www.bbc.co.uk/news/uk-wales-52117814 <Accessed 16.04.2020>

[5] https://www.bbc.co.uk/news/uk-politics-52155359 <Accessed 17.04.2020>

[6] Patients are assumed to have capacity as per Section 1 (2) of the Mental Capacity Act 2005. If this presumption is rebutted under Section 3, then the patient can be said to lack capacity with regard to a specific decision.

[7] As per section 3 of the Mental Capacity Act 2005

[8] Department of Health and Social Care, COVID-19: Our Action Plan for Adult Social Care, Published 15th April 2020, https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/879639/covid-19-adult-social-care-action-plan.pdf <Accessed 23.04.2020>

[9] https://www.resus.org.uk/faqs/faqs-cpr/ <Accessed 23.04.2020>

[10] Robinson EJ, Smith GB, Power GS, et al, Risk-adjusted survival for adults following in-hospital cardiac arrest by day of week and time of day: observational cohort study, BMJ Quality & Safety 2016 ;25:832-841.

[11] Above, n3

[12] Above, n4

[13] Matt Hancock, Downing Street Briefing, 03.04.2020 

[14]http://www.vatican.va/roman_curia/congregations/cfaith/documents/rc_con_cfaith_doc_19800505_euthanasia_en.html <Accessed 23.04.2020>

[15] Kathryn Mannix, With the End in Mind, London (2017), p121

[16] Ruth May, Stephen Powis, Letter to Chief executives of all NHS trusts and foundation trusts, 07.04.2020 https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/04/maintaining-standards-quality-of-care-pressurised-circumstances-7-april-2020.pdf <Accessed 22.04.2020>

[17] Ibid

[18] For ADRTs, see Section 24 of the Mental Capacity Act 2005. The person must be over 18 and have the capacity to make such decisions. 

[19] https://www.artofdyingwell.org/talking-about-death/ <Accessed 23.04.2020>

[20] Romans 6:5

[21] Psalm 23:4

[With thanks and credit to Alexander Ruck Keene, who provides invaluable information and commentary regarding Mental Capacity Law on his website: www.mentalcapacitylawandpolicy.org.uk.]