Nelson Mandela in a speech in 1998 stated:
“A society that does not value its older people denies its roots and endangers its future. Let us strive to enhance their capacity to support themselves for as long as possible and when they cannot do so anymore, to care for them.”
Like many others I have been waiting with interest for sight of the ethical guidance which would be made available to our frontline clinicians who are engaged in the struggles against the Coronavirus epidemic. I read the ‘COVID-19 Guidance: Ethical Advice and Support Framework’ with considerable expectation and hope for a clear grounding for hard decision making. When I finished I was left with more questions than answers and no small sense of disappointment.
The reason for such a document is self-evident. Despite all the best efforts of planners and politicians we may get to situation where there is insufficiency of resource to be able to provide the optimum clinical care and treatment to every citizen. As the document itself states;
‘if immediate need exceeds what is required and there is no additional capacity, changes to healthcare delivery and scope may be necessary.’
It is in this context when we are clearly not in ‘normal times’ that we need to be able to give our frontline clinicians the ethical, moral and rights-based tools to allow them to do their harrowing job with dignity and authority. I am afraid this document fails to give that sense of grounding and raises fear and concern for many of us. It fails to live up to its declared self confidence that ‘This guidance is considered both clinically sound and on firm moral ground.’
Some of my concerns include:
The Guidance describes the role of Ethical and Advice Support Groups at both a national and local level. Whilst the membership is delineated as including clinical professionals, academics, lawyers, religious groups, social workers and lay persons, it does not describe for us HOW these individuals will make their decisions. What will be the moral and ethical boundaries, principles and framework which will guide them? What will be the clinical criteria to enable them to make impossibly hard recommendations? Will these be based on utilitarian views? How will we be assured that their decisions and advice will be non-discriminatory and based on a robust human rights critique? To what extent will characteristics of age, co-morbidity and frailty influence decision criteria? What indeed will be considered the interests and obligations that this decision-making has to the ‘wider population.’
Secondly, the Guidance uses a lot of ‘feel good’ language but does not illustrate how that assurance is going to be played out in reality. It states that:
Everyone matters equally…
the interests of each .. are a concern for all of us
Harm suffered by every person matters…’
All undeniably laudable aspirations and statements but how are these fulfilled in practice in an emergency, resource constrained environment?
The Guidance describes the principles of Respect, Fairness, Minimising Harm, Working Together, Flexibility and Reciprocity, but again one is left asking what it means to state that
‘Patients should be treated as individuals, and not discriminated against.’
Perhaps more challenging is the statement:
‘No active steps should be taken to shorten or end the life of an individual, however the appropriate clinical decision may be to withdraw life prolonging or life sustaining treatment or change management to deliver end of life care.’
Thirdly the use of certain phrases beg more questions than they deliver answers:
‘Where there are resource constraints, patients should receive the best care possible, while recognising that there may be a competing obligation to the wider population.’
‘Under normal circumstances, these decisions would be made of the basis of patient choice and anticipated clinical benefit to the patient. In the context of increased demand, it may also be important to consider fairness of healthcare distribution within the wider population.’
What in this context is meant by the ‘competing obligation of the wider population’? If we are to supplant patient choice and anticipated benefit for an individual what does ‘fairness of healthcare distribution’ actually mean not just at a theoretical level but in raw reality for individual citizens? Care is to be rationed- I can understand – but ethically what does the needs of the majority mean for the care of the vulnerable minority?
Fourthly, I am really concerned that issues of equality and human rights are mentioned explicitly only in two footnotes. I have stated before that Scotland should be rightly proud of its articulate defence of the human rights which have framed both our legal and parliamentary process, not least since Devolution. To present a document which articulates some of the most challenging ethical choices of our generation, perhaps of any time since the Second World War, and to have that devoid of a robust human rights articulation is wholly inadequate. How are we going to make an ethical decision which upholds the right to life and the right not to be subject to inhumane and degrading treatment? How is the State going to fulfil its duties to the Human Rights Act or the European Convention of Human Rights? I see no robust articulation of this within this document. If human rights are to be more than rhetoric in easy times they have to be real in hard times.
All this matters a great deal and it matters now.
Already we have stepped into questionable territory.
I can fully understand that for many frail and older people who develop Covid19 in a care home that the best place for them to be supported is within the care home, that transfer to an acute setting is likely to be over traumatic and result in little effective clinical outcome.
I can accept and know at first hand the astonishing professionalism around palliative and end of life care delivered in Scotland’s care homes which makes them in ordinary time hospices in the heart of our communities.
What I am deeply uncomfortable with is a blanket presumption that there will be no transfer of any individual (except in the instance of large-scale fractures) from a care home into the acute context. This leaves me disquieted because it presumes that all individuals within a care home are old and frail and it assumes a sufficiency of resource in care homes which would potentially enable some individuals who have a severe infection to respond well.
What I am equally appalled by in the last few days is the numerous instances of DNACPR being demanded as routine and automatic from care home residents by some general practitioners up and down Scotland. Quite rightly the Chief Medical Officer has robustly challenged this.
I am equally dismayed at the number of GPs who have in recent days intimated that they will not visit care homes. I fully understand that the risk of infection has to be taken into account but a presumption of non-attendance to meet the needs of individuals, even with the best use of video diagnostics, is wholly unacceptable.
If equality of access and treatment mean anything then we must not abandon our care homes, their residents and staff to an unequal level of clinical support.
The next few days and weeks must surely be those where both the clinical community and wider Scottish society needs to have a proper debate about ethical treatment and care in the face of reduced resources. It is simply too important a set of decisions to be left to a document which though it tries hard is too subjective, too generalist and lacking in a foundation of human rights and equality.
The way we respond to harrowing issues of choice will determine the society we will be as a nation after Covid-19. In Mandela’s terms decisions which are potentially based upon an over-reliance upon age and do so in a discriminatory manner endanger the rootedness and the future of the whole of our society. I trust that over the coming weeks by our actions and decisions we will all create a future we will be proud of.
Dr Donald Macaskill