Resuscitation and the value of a disabled person’s life: Triaging and Covid-19

Catherine Casserley

Declan O’Dempsey

Cloisters Human Rights team are considering a range of issues that arise in respect of the equal right to healthcare, in particular with respect to disability and age, during the COVID-19 crisis. Cloisters barristers have particular expertise in the crossover between the Equality Act, the Human Rights Act and international human rights law. In the first of our series, Catherine Casserley and Declan O’Dempsey consider the guidance on triaging and allocation of key equipment.

What is your life worth?  If you get Covid19, what criteria do you want clinicians to apply when triaging your case? Choices on withholding treatment have become starkly real in the Covid19 emergency.  Such choices should be made on a basis respecting the dignity of the individual patient and not based on stereotypes relating to age[1] or disability.  The emergent guidance is not clear on these issues.  Clinicians and lawyers are therefore confronted with answering the following questions:

1.Is it lawful to refuse someone potentially life-saving treatment where someone else has been deemed to have a higher priority for the available treatment?

2. If the patient lacks capacity[2] is it lawful to make a decision which is not a “best interests” decision?

Answering yes to either of these appears to be contrary to the legal basis on which treatment decisions are ordinarily made. In an emergency situation there are real concerns, about how to triage and how to allocate  key equipment such as ventilators of which there may be a shortage.  If there is no lawful basis for the decision systematically to deny life saving treatment to a person or group, the clinicians making the decisions may be subject to criminal law sanctions (murder or manslaughter), as well as civil claims for assault, clinical negligence, and discrimination amongst others.

NICE Guidance

The most recent substantive guidance  on making these decisions is from NICE (NICE guideline [NG159]Published date: 20 March 2020 Last updated: 09 April 2020) https://www.nice.org.uk/guidance/ng159.) This provides a quick flowchart for decision making on triaging intensive care allocation.  How does this guidance fare in relation to persons with disabilities?

It refers to the  guideline from the BMA,  “COVID-19 – ethical issues. A guidance note.”  “BMA guidance”,  and to that from  the Royal College of Physicians’  “Ethical dimensions of COVID-19 for front-line staff”, and the Royal College of Surgeons’  “Good Practice for Surgeons and Surgical Teams”.). It is notable that the guideline has been developed using the interim process and methods for developing rapid guidelines on COVID-19 – this process involves no consultation and no apparent equality assessment.

Following an earlier legal challenge to the guidance the BMA guidance in relation to resource allocation decisions provides a flow chart which states that the CFS should not be used on people with “stable long-term disabilities (for example cerebral palsy) learning disabilities or autism; and an individualised  assessment is recommended in all cases where the CFS is not appropriate” (para 1.1 NICE), appearing to build in safeguards for persons with disabilities from the outset . However clinicians are then told to consider comorbidities and underlying health conditions in all cases.  Of particular concern in the context of disability is that at the critical point clinicians are told to refer to consider two specific  co-morbidities:  Cardiovascular comorbidity, defined as fatigue, claudication, dyspnoea or angina at rest due to myocardial or peripheral vascular disease ; and Respiratory comorbidity, defined as permanent shortness of breath with light activity due to pulmonary disease or use of home ventilation (excluding CPAP for sleep apnoea).

Several of these are capable of constituting disabilities.  Hence, when clinicians are encouraged to take account of these co-morbidities there is a danger that they will discriminate(directly) against persons with those disabilities. The stakes could not be higher in that decision, of course.

In addition,  when the NICE guidance turns to starting, reviewing and stopping critical care treatment  it refers back to the BMA guidance.  At this point the carefully worded guidance relating to decision making takes something of a knock.

The BMA Guidance

The guidance aims to help with decision making by setting out the government’s 2017 ethical framework for dealing with pandemics. It is based on principles of equal respect (although this does not mean everyone will be treated the same), keeping people as informed as possible, with the opportunity to express their views on matters affecting them. Personal choices about care and treatment are to be respected. The guidance also is based on the following principles

“Minimise the harm of the pandemic: reduce spread, minimise disruption, learn what works – Fairness: everyone matters equally. People with an equal chance of benefiting from are source should have an equal chance of receiving it – although it is not unfair to ask people to wait if they could get the same benefit later” and

“Keeping things in proportion: information communicated must be proportionate to the risks; restrictions on rights must be proportionate to the goals – “

“Open and transparent decision-making: good decisions will be as inclusive, transparent and reasonable as possible. They should be rational, evidence-based, the result of a reasonable process and practical in the circumstances.”

Triage

The most controversial aspect of the BMA guidance is under Triage (p.4). This is a form of rationing or allocation of scarce resources under critical or emergency circumstances where decisions about who should receive treatment must be made immediately because more individuals have life-threatening conditions than can be treated at once.

The BMA guidance states that it is lawful to refuse someone potentially life-saving treatment where someone else has a higher priority for the available treatment.  According to the BMA guidance if someone lacks capacity, that decision is not a “best interests” decision.  This appears to be in contrast to the statement on advanced care planning published on 1 April 2020, by the BMA, and a number of other organisations.  That statement emphasised the importance of advance care planning.  It stated that it is unacceptable for advance care plans (ACP), whether or not a DNAR form has been completed, to be applied to groups of people of any description. It said that these decisions must continue to be made on an individual basis according to need.  ACP should only be discussed  directly with individuals. Where a person lacks the capacity for the process then it is reasonable to produce an ACP following best interest guidelines with the involvement of family members or other appropriate individuals.

In BA, R (On the Application Of) v The Secretary of State for Health and Social Care [2019] 1 WLR 2979 there was a challenge to the principle of selective allocation of NHS resources.  This was brought solely on the basis that the NICE guidance in that case was not rationally based within the legislation conferring powers to make directions in this respect. There was no challenge based on human rights or discrimination in that case.  However the BMA guidance relies on this case to argue for a very broad proposition that the legal principles underlying such allocation decisions have been fully considered.[3]  This is patently not the case.

The way in which the higher priority is to be assessed is set out in the BMA guidance (with emphasis added):

Triage sorts or grades persons according to their needs and the probable outcomes of intervention. It can also involve identifying those who are so ill or badly injured that even with aggressive treatment they are unlikely to survive and should therefore receive a lower priority for acute emergency interventions while nonetheless receiving the best available symptomatic relief.

The guidance acknowledges a correlation between long term health conditions and mortality. When considering medical utility (i.e. prospects of survival and potentially withdrawing treatment in order to provide that treatment to another who may derive more benefit from it) it deals with indirect discrimination, saying (emphasis added):

“During the peak of the pandemic, doctors are likely to be required to assess a person’s eligibility for treatment based on a ‘capacity to benefit quickly’ basis. As such, some of the most unwell patients may be denied access to treatment such as intensive care or artificial ventilation. This will inevitably be indirectly discriminatory against both the elderly and those with long-term health conditions, with the latter being denied access to life-saving treatment as a result of their pre-existing health problems. … older patients with severe respiratory failure secondary to COVID-19 may have a very high chance of dying despite intensive care, and consequently have a lower priority for admission to intensive care.

Although a ‘capacity to benefit quickly’ test would be indirect discrimination, in our view it would be lawful in the circumstances of a serious pandemic because it would amount to ‘a proportionate means of achieving a legitimate aim’, under s19 (1) of the Equalities Act – namely fulfilling the requirement to use limited NHS resources to their best effect.”

Note that the “capacity to benefit quickly” test is a different test to the “needs”, “probable outcomes ”or “unlikely to survive” criteria and allows distinctions to be drawn between 2people both of whom are likely to recover but one of whom will recover quickly and the other will not.

It is not clear that the guidance does give rise only to indirect discrimination questions.  The BMA guidance and the NICE guidance clearly envisages that certain conditions or the effects of those conditions which are plainly disabilities should be taken into account as comorbidities in the decision whether ICU treatment is to be given to the patient. If the features which are taken to be risk factors are in dissociable from the disability, then the case is not one of indirect discrimination, but of direct discrimination, contrary to section 29 of the Equality Act 2010, read with section 13.   Such discrimination is not capable of being justified.

Disabled people and organisations of and for disabled people and those who work with them have been unsurprisingly extremely concerned about the messages which have been propagated in the guidance and have had initial success in challenging it. A published letter[4] setting out  principles which should guide those involved in treatment drew a significant number of signatures and appeared to prompt a response when, on 9 April 2020, Professor Stephen Powis National Medical Director, and the Chief Nursing Officer, NHS England, published a letter addressed to all NHS institutions.  It reaffirmed the principles of the NHS Constitution to deliver care and support in a way that achieves dignity and compassion for each person served.  Organisations should be cognisant of the principle of equity of access for those who could benefit from treatment escalation, as well as the principle of support for autonomy for those who want to be involved in decisions. 

He wrote in bold:

“The key principle is that each person is an individual whose needs and preferences must be taken account of individually. By contrast blanket policies are inappropriate whether due to medical condition, disability, or age. This is particularly important in regard to ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) orders, which should only ever be made on an individual basis and in consultation with the individual or their family.”

The aim is therefore to achieve an individualised decision rather than to apply generic decision making to people on the basis of characteristics. However this process is not, it seems, amenable to such bright line thinking. There is a great deal of scope for decisions being made on the basis of heuristic or stereotypical thinking concerning the prognosis, and quality of life of a person with a disability when a triaging decision has to be made.

The BMA has, on 15 April 2020,published what it said was a “statement/briefing” about the use of age/disability in its guidance. In this it stated, amongst other things:

Under our guidance, the fact that someone is above a particular age, or that they have an existing medical condition is not, in itself, a factor that should be used to determine access to intensive treatment. Similarly, someone with a disability should not have that disability used by itself as a reason to withhold treatments, unless it is associated with worse outcomes and a lower chance of survival. A decision to exclude from treatment everyone above a particular age, or with a disability, would be both unacceptable and illegal. Treatment in an intensive care unit provides no guarantee of a positive outcome. The treatment is invasive and highly burdensome. Before commencing treatment for any patient, doctors must be reasonably certain that the patient has the physiological capacity to benefit from the treatment. Where, for example, the consequences of age or a pre-existing disability or medical condition mean that the patient is significantly less likely to survive this complex and demanding treatment, then it becomes a relevant factor. Similarly, where specific co-morbidities are known to impact on the patient’s likelihood of survival or speed of recovery, it is appropriate to take those factors into account as part of the decision-making process. We believe this to be both lawful and ethical.

The legal position

The production of the above guidance, and the allocation/withdrawal of treatment engages a variety of legislative provisions: the Human Rights Act 1998 (HRA),  Equality Act 2010 (EqA) and the Mental Capacity Act (MCA)  2005.  It also engages numerous international human rights instruments, and general public law duties not to act unlawfully, irrationally or procedurally unfairly.  

To highlight a few of the issues raised (and which we will develop in later articles)–

• Is there an obligation upon the state in accordance with its rationality obligations to produce comprehensive clear guidance on the treatment of disabled people or is the guidance produced by NICE sufficient to discharge any such obligation upon the state  (judicial reviews are currently threated/underway in respect of same)

• Is the guidance produced endorsing potential direct disability discrimination (which is not justifiable) or does existing caselaw preclude a finding of direct discrimination in these circumstances, in which case would such discrimination be justifiable?

• If there has been a failure to comply with the s.149 public sector equality duty in producing any such guidance, will that be sufficient to ensure that it is quashed?

• When it comes to issues of actual treatment, or withdrawal of such, whilst there is no duty to provide futile medical treatment, including Clinically Assisted Nutrition and Hydration (CANH) (Airedale NHS Trust v Bland [1993] A.C. 789 per Lord Keith at 890)., where the treatment would not be futile, would such a withdrawal amount to a breach of Article 2 in circumstances where the state has guidance in place for withdrawal in a public health emergency and it is based on greatest prospect of survival?  And what of Articles 3 or 8? Are there any potential differences in discrimination provisions applicable?

• Where Do Not Attempt Resuscitation Notices are imposed without discussion, it leads to a potential breach of Article 8 (R(on the application of Tracey) v Cambridge University NHS Hospital Trust [2014] EWCA Civ 822  the Court of Appeal held that Article 8 was engaged and breached by the decision to place a DNR Notice on a patient’s file): but where an unsolicited letter asking a patient to sign a DNAR is sent, or a phone call made by a GP surgery, is there any recourse for a patient who feels that they have been pressured to consent?

• Given that BA, R (On the Application Of) v The Secretary of State for Health and Social Care [2019] 1 WLR 2979 did not consider the lawfulness of resource allocation from a human rights or discrimination law perspective, is the advice on whether a refusal to give lifesaving treatment to someone deemed not to have capacity (namely that it does not have to be a best interests decision) lawful?

There are a number of judicial reviews pending, so far as we are aware, in relation to the guidance that has been issued, including challenging the failure to provide clear and coherent guidance on the treatment that disabled people can expect, particularly in relation to the prioritisation of treatment. It remains to be seen what other areas set out above will be explored within these proceedings and at what point these issues will be determined by the courts. In a later article we will examine some of the work that has been done in the USA to develop triaging criteria and how these arguments can be used in a discrimination challenge. [5]

Only when disabled people are treated in accordance with principles set out in the letter  from the UK disability organisations (above) will the NHS will have succeeded in providing equal rights to healthcare for one of the most marginalised groups in society.

[1]Which will form the subject matter of a separate article

[2] 80% of critical care patients lack capacity to make important decisions about their care and management at a time when consideration is being given to withholding or withdrawing life-sustaining treatments (see Care at the End of Life: https://www.ficm.ac.uk/sites/default/files/ficm_care_end_of_life.pdf_ (September 2019))

[3]“Although doctors would likely find these decisions difficult, if there is radically reduced capacity to meet all serious health needs, it is both lawful and ethical for a doctor, following appropriate prioritisation policies, to refuse someone potentially life-saving treatment where someone else has a higher priority for the available treatment. These are grave decisions, but the legal principles were established in relation to the allocation of organs for transplantation and have been recently upheld by the Court of Appeal.6 In relation to adults lacking capacity, these prioritisation decisions are not ‘best interests’ decisions under capacity legislation.”

[4]https://www.disabilityrightsuk.org/news/2020/april/covid-19-and-rights-disabled-people

[5]See e.g. https://www.centerforpublicrep.org/wp-content/uploads/2020/04/Evaluation-framework-for-crisis-standards-of-care-plans-4.9.20-final.pdf