The People's Cries

This  document which I am going to start by reproducing in full, was issued by the Clinical Commissioning Group in Hackney, last week.  Hackney has seen the third highest number of Covid-19 deaths of any borough:

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“City and Hackney CCG Bulletin for GPs, issued 1st May 2020, 

 Advanced Care Planning.

ACPs (Advanced Care Plans) are part of a discussion with frail groups of patients and animportant opportunity for them to decide about what and where they wishto have treatment as well as a discussion around what treatments they would want to avoid.

A recent audit showed that we have 999 (25%) CMC (Co-ordinate my Care) records where a decision has not yet been made around escalation.

A number of these are likely to be because the patient is uncomfortable or unable due to mental capacity to make the decision.

However, where possible it would be in everyone’s interest to support and encourage patients to indicate their preference, especially in light of the Covid 19 pandemic.

Building on the work you have already put into updating your CMC’s we wanted to offer support and clarification on which groups of patients should be prioritised as you continue to support your patients.

Focus should be placed on ensuring the following groups of patients have up to date care plans:

Patients in care homes and supported living facilities;

Those on the End of Life Care and Proactive Care registers;

Those that are due for review as per the review date set by the GP.

As always, it is important to ensure that patient’s preference for place of care and death are discussed and captured within the plans. During the Covid 19 pandemic, it would also be helpful for LAS and ED if you are able to include the suggested script for patients who have:

Identified preferred place of care as home and uncertain about preferred place of death or  Indicated wanting home or hospice for preferred place of death

a CFS 6 and greater but wishes to have their care escalated.

Suggested Script: In the Coronavirus Pandemic this patient would be likely to have a poor outcome with COVID 19 infection and would not be considered for escalation for ventilation in hospital, as they would be unlikely to survive if they became seriously ill hence will benefit fromsymptom control and care at home.

The priority during the COVID pandemic is to give patients the opportunity to decide, based on lack of benefit with hospital admission amongst patients with CFS6 (Clinical  Frailty Scale) or greater, whether they would prefer to have care at home.

There will be those, for whom you appreciate the lack of benefit in admission (CFS 6 and greater) but who wish to have their care escalated. For this cohort of patients please put for resuscitation and escalation and add the suggested script, which will assist the EDand LAS in these discussions and assist the decision-making in the ED.

What support is available?

If practices require help identifying patients within the groups listed above we will be distributing ‘how to’ guides and running a webinar for practice administrators. Please encourage your practice administrators to attend if this is an area of concern for you. We will also be sending out an excerpt of data that we have received from CMC listing all your published and unpublished CMC’s which may also be of help. We also havea small team of geriatricians at the Homerton who are able to support with completing a number of CMC’s if there are capacity issues within the practice.”

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This bulletin was sent to all primary care staff and institutions in City and Hackney on 1st May, 2020;  I have changed one sentence to italics, and added the meanings of  abbreviations used in brackets.

At a time when there is a continuing high death toll from Covid-19 of people in care homes, when hospital wards are relatively empty and indeed the ExCel centre facility has been mothballed for lack of use, I am concerned about the grave errors in this document.  It instructs GPs and their teams to accelerate the process of getting people in the community who have moderately impaired mobility (for example, difficulty climbing stairs) – that is, Frailty score grade 6 or above – to agree to Advanced Care Plans – a reasonable, if rather bureaucratic ambition, and not one that one would hope busy GPs should be spending time on during a pandemic.  Such care plans, the document explicitly instructs, are to be used to encourage frail people, if they are suffering from Covid-19, to agree to being looked after at home.  The case for this is argued on the basis of evidence, which I do not dispute, that such frail people will not benefit from mechanical ventilation.  However, being admitted to hospital where you can have your oxygen saturation regularly checked,  can be given oxygen if necessary,  can be nursed by trained professionals, can have physiotherapy, can have antibiotics and other drugs, and can access numerous other benefits, is not at all the same stage in the process of care as when your condition has further deteriorated, when you and the team looking after you are faced with the question of your being mechanically ventilated or not.  

Moreover, in hospital you will be looked after by staff who have relatively greater access to PPE and are trained to use it, whereas in the community you may continue to spread the disease, with any carers you have access to being ill-equipped to avoid becoming vectors of the infection, passing it to yet more frail people.  Finally, of course, assessment in the hospital setting does not necessarily mean admission to hospital, it just means that the decision as to whether hospital care would be beneficial is guided by much stronger evidence, such as a chest x-ray, arterial oxygen levels, CT scan of chest, a Covid-19 antigen test, or whatever else is deemed necessary to improve that decision.  The effect of the CCG’s instruction is to deny patients that quality of assessment, which cannot be provided in the community.  Such assessment is MORE important if you are frail, not less, because the presence of other chronic conditions – chronic lung disease, or cardiovascular disease, for example – makes the clinical assessment more difficult.

I myself, if asked to make an Advanced Care Plan, would definitely opt for dying at home rather than dying in hospital.   This has absolutely zero relevance as to decisions, if I am stricken with Covid-19, about which clinical setting will provide me with optimal care, or even which setting I would prefer.  As far as we know, anyone with even quite severe Covid-19 infections can still hope to recover fully, however bad their underlying health – it is only when they are critically ill with the infection that those with serious underlying conditions, including moderate frailty, have to resign themselves to the likelihood of death. To use a person’s Advanced Care Plan as a guide to action as to how to treat them in the middle of a pandemic, in the community, where  the severity of that person’s infection is hard to judge, being made without any tests or investigations, is a travesty which anyone would be hard pressed to deny has eugenicist connotations.

The paper’s assertion that there is a “lack of benefit with hospital admission amongst patients with CFS6 or greater” is a barefaced inaccuracy amounting to a falsehood.

This confused and possibly wilfully wrong message will have tended to make its readers hesitate to send people to hospital even when they would actually benefit from hospital care.  It seems to be aimed at inducing what might be referred to as herd behaviour on the part of doctors in the community, giving them a get-out clause from the paramount ethical obligation to consider the needs of the person whom they are treating, consideration which of course always necessarily, when it comes to taking action to meet those needs, has to take account of what resources are available.  It seems possible that this advice may already have cost the lives of many of the most vulnerable of Hackney’s citizens, particularly those whose frailty is compounded by other disadvantages – being black or brown, being poor, being socially isolated and without articulate mentors and so on.  I would very much like to know whether it is based on instructions from NHS England, or whether it is a purely local mistake.  I am gravely concerned about local GPs and other staff over which the CCG has governance being unwittingly recruited to what amounts to a eugenic practice, in the face of the difficulties of the NHS gatekeeping role and their concern to protect hospital colleagues from being overwhelmed by demand. 

I have written to the CCG to ask them to rescind this incorrect advice immediately, and to be fully transparent about any instructions from higher levels within the Inner North East London ‘footprint’, the Department of Health, or NHS England from which it will have emanated.  In view of the seriousness of the matter, and its continued relevance to the fate of those infected with Covid-19 in Hackney, I want an urgent reply.  Clearly this is a matter of acute and urgent public interest.