2 April 2020

Never have I used the word “unprecedented” so many times. Each day at BIHR we’re seeing another practice, action, decision or policy as part of the fight against Covid-19 which seeks to protect life, but which in fact reveals some shocking attitudes about whose life counts and whose does not.

 

A life less worthy?

We are already hearing reports on social media and in the news of people with learning disabilities and older people  having Do Not Resuscitate (DNR) orders applied to them, with little consultation. Our evidence bank this morning includes:

  • According to a care provider, three services (in Somerset, Derbyshire and East Sussex) have been contacted by GPs to say that they have deemed the people they support, who have learning disabilities, and other complex needs, should all be DNR. There was no mention of consultation with families or best interests assessments.
  • According to the Guardian, People in care homes in Hove, East Sussex and south Wales are among those who have had “do not attempt resuscitation” (DNAR) notices applied to their care plans during the coronavirus outbreak without proper consultation with them or their families.
  • Care homes in Leeds have reported that district nurses have been asking them to “revisit do not resuscitate conversations with people who said they didn’t want them” and a care worker in Wales told the Guardian that after a visit from a GP, all 20 of their residents had DNAR notices attached to their plans.
  • A GP surgery in Wales sent a letter asking patients with life-limiting illnesses to complete a "do not resuscitate" form.
  • NICE Guidance on how doctors should decide who could get emergency care during the coronavirus crisis was rewritten after complaints that the initial guidelines suggested that disabled people could be denied treatment.

This discrimination is not new. Those of us that work with people with learning disabilities, their families, carers, and groups, see this every day, because it is people’s reality. Every, single, day. From a lack of access to basic services like appropriate education and housing, right through to shorter life expectancy and shocking avoidable deaths when in the hands of health and care agencies. Older people also expereince similar everyday discrimination issues. But the Covid-19 is throwing this into even sharper relief.

 

The preservation of life

The preservation of life is a phrase we hear often at BIHR in our work with health and care services. It has now become part of the national mantra: “Stay at home; Protect the NHS; save lives”. We must save lives. But, whose lives?

 

We know the stark reality is that resources are not infinite. The NHS, and social care (which is too frequently being forgotten at the moment) have limited resources.  This will always be the case, and is no doubt being felt even more keenly with our recent experience of austerity.  

 

Medically, very difficult decisions will need to be made, about who will get treatment and who will not. These are the toughest of the decisions. Decisions which essentially contribute to people losing their lives, with families experiencing unspeakable loss; and, in our experience, decisions which leave frontline healthcare workers carrying significant trauma.

 

When these decisions are made not on the basis of medical judgement, but rather on the basis of ingrained, discriminatory attitudes about whose life has more value, that is when we have a societal problem. That is when we need to fall back on the human rights safety net.

 

The human rights framework

I often find myself saying the beauty, and the ultimate challenge, of human rights is that they belong to us all. People like you and unlike you, people who you think deserve them, and those you don’t. But ultimately, because we are talking about legal standards, not individual moral codes you, we do not get to decide who counts and who does not. Human rights, set down internationally, and put into our domestic law through the Human Rights Act, belong to every single person in the UK. Whether they have learning disabilities or not, whether they fall into Covid-19 vulnerability or not.

 

So, what does the human rights framework offer? Importantly, we all have the right to life (Article 2, HRA). The government’s analysis of the recent coronavirus legislation flags the need for action to protect the right to life in the context of the pandemic. Clearly; this is not in dispute. But the decisions on the provision of medical treatment need to be on a case by case basis. Blanket approaches, such as those which attempt to apply DNR orders to whole groups of people are rarely human rights compliant. Such approaches signal a moral judgement about equality of life, not a medical decision about an individual’s treatment and prognosis, and as such will fall foul of the right to non-discrimination (Article 14, HRA). Plus, there are the rights to autonomy and involvement in decision making covered by our right to respect for private and family life (Article 8, HRA). This right can be restricted by public officials and frontline staff, provided their decision is lawful, legitimate and proportionate. This three-stage test must be at the heart of any decision that attempts to restrict people’s rights to make decisions about what happens to them, and to consider their wishes and feelings where they do not have capacity to make those decisions (which must be specific and assessed, not just an assumption).

 

We must be better

The examples above raise some important human rights questions. Are the rights to life, non-discrimination and involvement in decision-making being respected and protected? The legal duty (and I emphasis the LEGAL duty) to respect and protect these human rights is not abdicated in times of emergency. Rather, this is when those on the frontline, making difficult decisions, need the consistency and guidance of the human rights framework. And most importantly, when those of us whose lives may be at risk, know that the best, fairest and most dignified decisions are being made about our care and treatment.

 

Human rights, when properly understood, provide us with the framework to assist the very difficult triage that now need to happen. The focus on each person that needs medical help demands more of us than discriminatory assumptions that people with a certain disability or of a certain age will automatically be less worthy of treatment.

 

The phase “never since World War 2” is opening many sentences right now. We must remind ourselves it was the horror of World War 2 and the slippery slope of whose life has value that led the world community to set down human rights as legal standards for all people, standards which all governments must uphold. These are not lofty sentiments; human rights are about the very real, very difficult, Covid-19 decisions that are being made by staff on the frontline of health and care. We must do better in making sure that they make lawful, legitimate and proportionate decisions which are non-discriminatory; decisions which can be defended in this time of emergency, and which ensure the future post-pandemic world still values human dignity.

 

Find out more about BIHR's work during the Coronavirus situation