The tragic consequences of Covid for end of life care
Gemma Lindfield, a barrister specialising in family law, outlines how the pandemic has added further trauma to families and patients dealing with the dying experience.
If ever there is a time in your life when you could do without external stressors, it’s when a loved one is dying. Not only is this one of life’s most upsetting events, but if it’s utterly new to you, it can also be bemusing and traumatic.
Right now, many thousands of families are barred from being with their loved ones as they face the dying process. This is bringing unbearable heartache to all concerned. The lack of access to their loved ones fosters uncertainty and different interpretations of what’s going on among family members. This, in turn, is leading to family conflicts which will make clinicians much more vulnerable to legal action.
The majority of people don’t give much thought to end of life care, unless they themselves are faced with serious illness. This is how they fail to realise what is likely to happen as a result. The probability is that clinicians with the guidance of close to them will be obliged to take decisions on their behalf, decisions with which they, themselves, might disagree. Individual desires differ greatly, with some people wanting life-saving treatment no matter what, and others opting for comfort over treatments that extend life. The failure to consider these issues before the onset of a life-threatening condition invites not only potential arguments among loved ones but also makes clinicians susceptible to lawsuits.
The rapid decline in health that Covid-19 can cause means that a patient may not have time to spell out their preferences when it comes to being ventilated or resuscitated. This is especially true for the very old or those with underlying conditions and can result in increased suffering and poor clinical outcomes. I have come across families who have sought to legally compel NHS trusts to treat a patient with ventilation when the patient is incapacitated and unable to express their wishes. Clinicians are motivated by the patient’s best interest but press coverage suggesting there are too few ventilators made family members suspicious that decisions were resource driven. If clinicians had been made aware of the patient’s feelings about ventilation beforehand, there may have been agreement between patient and clinician which would have obviated the need for family members to seek legal advice at a time of such acute personal crisis.
Stemming also from a patient’s inability to self-express is the issue of who to consult. While clinicians look to the next of kin and wider family for guidance, ultimately the decision rests with the clinician, unless an alternative legal framework is in place. It can be an emotionally complex and draining experience as family members debate what the patient’s wishes might be. Sometimes this results in the family interfering with clinical decisions and there needs to be more training for clinicians to negotiate these family conflicts in accord with the law in order to minimise disruption. A failure to handle these sensitive circumstances correctly again risks litigation for the care sector.
It would serve us well to face up to our own mortality by making provision for our wishes to be known when the end comes. It would save our loved ones from the trauma of having to make these difficult decisions at a time when they are struggling to cope with the onset of grief. I would urge those at highest risk of Covid-19-related complications to record their wishes for their end of life care. Tests that can predict how badly someone is likely to suffer from Covid are being trialled by the NHS so that they can prioritise care and decide whether that care should involve treatment or palliative care. So when a person fails to record their wishes, together with the possible conflicts of opinion between family members and maybe between families and clinicians, the scene is perfectly set for potential legal disputes.
The answer is for people to plan future care and support, such as whether they wish to receive resuscitation or other medical treatments, while they are in a fit state to do so. Often the result of conversations that GPs have with older or vulnerable patients results in a do not resuscitate (DNR) order that is filed in the patient’s medical records. In the case where you would wish to refuse specific treatment, an advance decision to refuse treatment (Advance Decisions), i.e. a living will, can be applied. Living wills are legally binding in England and Wales. This means that healthcare professionals who are aware of your Advance Decision must follow it, otherwise NHS trusts face legal action to compel them to do so.
Planning means that the person considers what they want and what circumstances, if any, might compel them to refuse treatment. These preferences can be discussed with loved ones, after which the Advance Decision Form, which can be found on the internet, can be completed, signed, dated and witnessed. If life-sustaining treatment is to be refused, then a sentence must be included to clarify that even when life might be lost or curtailed, the refusal still applies. A copy of the form must be given to the person’s GP and anyone else involved in their care. This is not set in stone and a patient can record any changes to the care plan on a new form in the future. If these decisions are being taken outside of a clinical setting. i.e. the person has not got a health condition that is being managed, then the help of a solicitor is recommended, if affordable.
Families and medical staff must learn to communicate transparently about the dying process, despite the cultural tendency to shy away from the topic. My hope would have been that Covid-19 might lead to more open discussions about how to have the best possible death, one in which suffering is minimised and wishes are granted, but I have seen no evidence of this. This is a pity because all the tools are available to provide this basic human right to die with as much ease as possible.
The general public needs to hear this message: Do you want to leave a legacy of family conflict and legal proceedings?
Clinicians need to hear this one: Encourage people to plan what a good death looks like for them.