Amid concerns that patient demand could outstrip NHS supply in the fight against COVID-19, there is trepidation the elderly and vulnerable will not be prioritised in receiving treatment. On the 31st March, there was outcry when letters sent out on the 27th March from a Welsh GP surgery issued to high risk patients went viral on social media. The letters urged patients to complete a DNAR (do not attempt to resuscitate) form were they to contract coronavirus. It bluntly read “you are unlikely to receive hospital admission… and you certainly will not be offered a ventilator bed.” One local seventy year old-recipient suffering from cancer likened it to being sent a “death warrant from the Grim Reaper”.
Last Thursday, Mrs Smith (not her real name) who lives in the Folkestone & Hythe district informed us her mother had received a phone call from her GP where she had updated her medical records to state that if she contracted coronavirus she would not go to hospital or receive medical treatment.
“Are we trying to guilt trip the elderly and vulnerable into sacrificing themselves for those deemed more worthy?
That can’t be morally right and should not be allowed to happen!”
Mrs Smith asked us. Some healthcare professionals we have spoken to have described this as the “unethical grooming of the elderly and vulnerable” and “legal eugenics made to sound like euthanasia”.
“I haven’t had a wink of sleep ,” Mrs Smith tells our public face over a video call. “I’m just so shocked, I can’t believe this really happened.” Her 74-year-old mother called Jean (not her real name), has COPD and heart disease – she was among the 1.5 million in the “extremely vulnerable” category to be told by the government to stay home for 12 weeks. Mrs Smith’s mother is a “tough old bird”, our public face was told. She’s managed with these conditions for twenty two years, hasn’t required home oxygen to date and lives independently. So a call to discuss end of life care when she was in good health seemed out of the blue and unnecessary.
Her mother’s decision to update her medical records did not sit well with Mrs Smith. While she stresses that the GP in question was not to blame, she says: “Essentially, they’re asking her, ‘would you rather die alone untreated at home or die alone in a hospital?’” Then come the tears followed by more questions:
“Why wasn’t this call planned? Why wasn’t she given a chance to discuss it with her family? She wouldn’t have answered the same if we were there, I’m sure of that! Would she get home care or have a nurse sent? Or are they signed off to die alone?My mum is totally selfless, if it had been put to her if she wanted to give the ventilator to a healthy young person, she probably would have said yes.”
One thing seemed clear in the conversation with Mrs Smith: the injustice of the situation.
“These are the most vulnerable people in our society. There are just too many unanswered questions.”
The Shepwayvox Team started receiving similar stories from various sources. One email, sent by a woman in Folkestone who agreed to have her experience shared anonymously, read:
‘I’ve been contacted to request my agreement to refuse his mother hospital treatment and DNAR should she fall ill with covid-19. He was totally stunned and has been upset all day that he is being asked to allow his mother to die at home without medical assistance. She lives in a care home and does have significant mobility and mental health issues so would not be alone in the event something terrible happens. I’m devastated that I may never see her alive again.’
A fellow Shepwayvox Team member, calls to tell our public face he just discovered a relative of his, who has an ongoing heart condition, asthma and poor liver function had also signed a DNAR form. When he followed up with hospital staff, he felt a distinct sense of being pressured or guilt tripped into believing this was the best option.
The National Institute for Health and Care Excellence (NICE) is an advisory body to the healthcare sector. On the 20th March it released guidelines including a clinical frailty scale, which doctors are advised to use alongside underlying health conditions in assessing whether critical care would be appropriate for frailer patients with covid-19.
Our public face, recently wrote to the Healthcare Secretary Matt Hancock, suggesting the development of “ethical guidelines about medical resource allocation”, as they have the potential to lead to discrimination “against people who are older, disabled, have underlying health conditions or learning disabilities”, is a consequence of the government’s failure to procure ventilators and properly resource the NHS since the days of Operation Cygnus in Oct 2016.
Organisations including Age UK and Independent Age wrote in an open letter saying pensioners were being made to feel that “their lives and wishes do not matter” by being pressured into signing DNAR forms. “This is shameful and unacceptable,” it read. Others have said guidelines are promoting the “survival of the fittest”.
The British Medical Association and the Royal College of GP’s in their responses made it clear they were not making blanket decisions on a particular group, but were committed to work on a case by case basis.
A GP from a surgery in the Folkestone & Hythe District agreed to set the record straight. “Crucial to all this,” they tell our public face “we need to understand that discussions around DNAR are only one part of the new ReSPECT process – which seeks to understand the patients needs holistically.“
They confirm that GPs are calling their patients who are more vulnerable to Covid-19, to go through the newly introduced ReSPECT form. These calls are to check on people’s wellbeing, making sure people have access to support, food and medication. Resuscitation and hospital admission are only one part of that form and the conversation is only broached where appropriate – with the people who are very frail and old, or with underlying serious health conditions, which is a routine part of a GP’s work anyway.
Our public face say that people have found these calls deeply distressing. That has not been their experience or that of their colleagues, their patients have felt well supported and grateful for the check in. “I don’t know whether that’s because GPs are stressed and not as sympathetic as they would usually be,” they say. “Or whether it’s because it’s hard to get the tone right over the phone.”
What about the accusations of pressurising? Are GPs encouraging this group to sacrifice themselves for the NHS? The response was an emphatic No.
“If a eighty year-old, who’s frail and has lots of comorbidity issues says I want full treatment, resuscitation and I want to go to ICU’ – that’s what goes on the form,”
“We’ve NOT been given orders to refuse certain people treatment. We are doing the best we can by each patient by clarifying that if they do fall ill and lose the capacity to make a decision, we know how to act in accordance with their wishes. I nor any of my colleagues would ever force someone who wanted to be resuscitated to have a DNAR form.”
A spokesperson for the Kent & Medway Clinical Commissioning Group said the ReSPECT process was being used “to steer informed discussion about people’s choices and preferences in the event of a medical emergency”. They added that ReSPECT discussions should take place in a compassionate and sensitive way, and that it is not a binding document, but a record of someone’s feelings at one time.
“We’re sorry that some patients may have had a poor experience of this process and we’re discussing this with practices and providing additional support to ensure this process is completed in an effective manner.”
Media coverage around DNAR is often out of context and misinformed, so our public face spoke to a lecturer, from the Centre for the History of Medicine, Ethics and Medical Humanities’ from Kent Univeristy, to clear up the confusion and ask why end of life care discussions are important.
A DNAR form, they explain, may be put in place when attempts to resuscitate wouldn’t work, would not lead to meaningful recovery, or when a patient decides the benefits of attempted resuscitation outweigh its harms.
“It is absolutely right that GPs should be contacting patients to talk about this as it’s an aggressive medical treatment, which, for some people, may have a limited chance of success – but it is equally important that this is done sensitively and appropriately.”
Contrary to misconceptions portrayed in the media, they stress that the DNAR form is always about the individual; blanket orders on a particular group would certainly be unethical and discriminatory, and pressurising a patient to waive their rights to receive hospital treatment is also unacceptable.
“Remember that doctors have to make decisions daily about when it is appropriate to intervene aggressively and risk the harm and indignity that treatment might cause or make someone as comfortable as they can and allow them to die.”
The only difference now is, “When there are insufficient resources, these decisions may also have to consider who has the best chance of benefitting.” But with that in mind, the lecturer says, knowing the patient’s wishes can be very useful to the people who may have to make the decisions. “It should also be reassuring – to you to know that your voice is being heard – even when you cannot speak.”
But here’s where health care decisions become entangled with questions of morality.
Medical triage – prioritising who to treat first in a crisis – remains one of the most charged ethical issues in healthcare. Countries like Italy and the USA, both stretched to breaking point by the covid-19 pandemic, are now having to make these kind of decisions on a daily basis. We have not reached this stage yet in the UK, but this is what we are pre-empting when we make decisions about resource allocation.
The lecturer at the Centre for the History of Medicine, Ethics and Medical Humanities’ from Kent Univeristy explains the ethical complexity of such decisions.
“The guiding principle of medical ethics and law makes it clear all people are equal and equally deserving of treatment. The blunt truth is that not all people can be treated, and not all people can be saved – but this has always been true. All we can do is make sure people are treated with equal respect, and given equal consideration – that is central and essential.”
When doctors are faced with a choice of how to use limited healthcare resources, they face a drastic choice: save the people who can most likely be saved (a clinical judgement) or save the people who we deem to be most worthy of saving (social value). My personal view is that it is better to make these decisions based on a clinical judgment about a person’s likelihood of benefiting from treatment, than to pick and choose who survives based on how valuable we think their lives are. This is still very much a matter of having to choose the lesser of two evils.”
The GP our public face spoke with raised an intriguing point:
“It’s a touchy subject partly because we are NOT very good at discussing death as a culture and a country.”
Whose life to save? It’s an impossible human business. A question as onerous for the decider and the subject. Bear in mind, there are two sides to this story – and we should hear both before turning on the very people who shoulder the burden of getting us through this crisis.
Of course, there are instances where GP’s or hospital staff may come across heavy handed, but we also mustn’t shoot the messenger – discussions of death and illness are difficult. And the shortage of resources was not a situation GP’s created. The more pertinent question now seems to be, will our NHS workers be forced to make more difficult decisions in the months to come? Only time will tell.
The Shepwayvox Team
Stay At Home – Protect The NHS – Save Lives