One of life’s certainties, taxes, looms larger for me in my professional capacity than the second certainty – death. However, in my recent personal life I have thought a good deal about the latter or, more accurately, the process of dying.
For our profession’s key workers – those who ‘advise on the making of wills’ – both certainties are relevant, although death is front and centre. My purpose in writing this article is to suggest that, in this time of pandemic, whenever an appropriate opportunity arises (and will-related work is an obvious opportunity, but there are others) we solicitors should consider suggesting to our clients that they may wish to make an emergency medical care plan.
At this time of great uncertainty and risk, such plans are vitally important, not only to the client, but also to their loved ones and our wonderful NHS. Let me explain why.
The client’s perspective: take my mother as an example. She made a will and gave each of her children lasting powers of attorney (financial, and health and welfare) almost a decade ago. She is now severely demented and lives in a care home. She is very different from the busy, sociable mother of before, but she is happy and has a good quality of life.
While she still lived in her own home, her GP asked about emergency care planning. As my mother had by then lost the capacity to make this kind of decision for herself, we used the lasting power to do it on her behalf. We felt that a DNAR (Do Not Attempt Resuscitation) decision was rather a blunt instrument and we based her plan on a person-centred initiative called ReSPECT (Recommended Summary Plan for Emergency Care and Treatment). More than 60% of English counties have fully or partially adopted ReSPECT or are working towards doing so. Further information is available on the website of the Resuscitation Council.
This is what we said in our plan: ‘In choosing how to treat [our mother] in an emergency, we would expect medical staff to prioritise her comfort and to focus on symptom control, over any life sustaining treatment, if the result of the latter is likely to be a materially impaired quality of life or if she is likely to find such treatment (or the need to be in hospital to receive it) unduly distressing. In particular, we would not wish her to be given an invasive treatment (such as CPR), with little or no chance of success in maintaining her existing quality of life.’
I am sure we would have added ‘or mechanical ventilation’ after ‘CPR’, had the process been talked about as much as it is now. Mechanical ventilation is a highly invasive treatment – a tube is put down a person’s windpipe, possibly through a cut in the throat – and the person is heavily sedated. Further, as the Royal College of Physicians notes in its patient information on Covid-19: ‘Sadly, despite [ventilation] many people who are admitted to critical care will still not survive… We hope that if treatment is successful you will recover to return to a quality of life that is acceptable to you. However, after critical care treatment, you will almost certainly not be as fit as you were. This is even more likely if you are already frail or have other illnesses.’ (See criticalcarenice.org.uk/patient-information.)
Recently, the care home has asked us to consider for our mother, ‘if you were suffering from symptoms which could be Covid-19, what would you wish to happen?’. The answer we have ticked is ‘keep me comfortable, treat any pain or other symptoms, and care for me in my care home’.
Does this keep me awake at night? No. I firmly believe that my mother, if she had capacity, would make the same decision for herself.
The NHS perspective: it is in the DNA of the NHS to try and save a person’s life at (almost) any cost. Indeed, a frank editorial published in the British Medical Journal on 6 April noted (emphasis added): ‘For decades, doctors have performed CPR even when they expect it to be futile. Reasons are unclear but may include reassurance for doctors that they have “done everything possible”– the removal of uncertainty enables them to move on to their next clinical task without moral discomfort. A resuscitation attempt may also make conversations with bereaved relatives easier, especially if prognosis and treatment have not been discussed before the patient’s death.’
To help doctors, care home staff and the emergency services make difficult decisions, it is vital that a patient’s wishes are recorded and are available to them.
As noted in a recent, pandemic-driven joint statement by the British Medical Association, the Care Provider Alliance, the Care Quality Commission and the Royal College of General Practitioners, it has never been more important to have a personalised care plan in place, especially for older people and people who are frail or have other serious conditions. The BMA’s recent guidance note on Covid-19 and ethical issues (which quotes in full and with approval the government’s ethical framework on pandemic flu) says, on individual choice, ‘keep people as informed as possible; give people the chance to express their views on matters that affect them; respect people’s personal choices about care and treatment’.
The perspective of relatives and loved ones: it is clear many are faced with unexpected, relatively sudden and shocking deaths of partners, parents, children and friends. Worse still, if a person is in hospital, although one visitor is now allowed during end-of-life care, the still difficult circumstances of lockdown mean the patient may die without the hand of a loved one in theirs. If someone becomes critically ill with Covid-19, relatives or loved ones may be consulted on treatment decisions if the patient is too ill to make their wishes known. At a time of great distress, this will surely be even harder if they have no idea of the sick person’s wishes. A relative of mine once told me with regret that, when her husband had a heart attack, she had been in such a state of shock that it had not occurred to her ask the attending ambulance crew not to attempt CPR. He had a serious underlying health condition and she knew what he would have wanted. No one wants to be in her position.
Another distressing example is the separation of a very elderly and long-married couple living in their own home when one of them fell critically ill with coronavirus. The sick husband was taken to hospital, despite the fact that his wife was probably infected already and it was almost certainly the last thing either of them wanted. Unfortunately, the emergency services did not have the assistance of knowing his wishes to allow them to take the most humane course of action, and the wife was probably too shocked and upset to make a fuss.
Emergency care planning options
- an advance statement (a written statement that sets down preferences, wishes, beliefs and values regarding future care). An advance statement is not legally binding, but must be taken into account by anyone who is making decisions about care; or
- an advance decision to refuse treatment (or living will), which is legally binding, provided it covers the circumstances as they turn out to be.
The Compassion in Dying website has useful booklets – Planning ahead: my treatment and care and Starting the conversation: planning ahead for your treatment and care. There is a section on its home page about making coronavirus treatment decisions. This, in turn, links to the Royal College of Physicians’ very useful patient information on Covid-19 mentioned above. The Compassion in Dying website also has specimen advance statements and advance decisions to download. (There are also online versions at mydecisions.org.uk.)
ReSPECT, meanwhile, expresses very clearly a key question to consider in thinking about future emergency treatment:
‘How would you balance the priorities for your care:
- prioritise sustaining life, even at the expense of comfort
- prioritise comfort, even at the expense of sustaining life?’
In the ReSPECT form, these two are shown on opposite sides of the page, with a sliding scale from one to the other between them, so that a person can mark, if they choose, how to balance them. A person is also given the option of saying which is more important to them; doctors are encouraged to document the patient’s own words where possible, to guide them in an emergency. Even though neither patient nor clinician can anticipate every treatment which might be considered, knowing that a patient would rather ‘go quickly than end up very dependent’ can help determine what treatments would be of benefit to that particular individual.
Clients may also think about the impact of treatment. For my mother, we suggested that she would not wish to have any treatment that would likely result in her quality of life being materially impaired (for example, anything involving anaesthetic or heavy sedation may well further impair the functioning of someone who is demented).
How solicitors can help
Dying should be part of the national conversation, just as I understand it to be in Switzerland; I believe as much as one third of the population of that country has a living will. I feel passionately that people should understand that their treatment wishes are important and have an opportunity to think ahead about what they want in the event of a life-threatening medical emergency long before any such situation arises (if it ever does).
In normal times, the process of emergency medical care planning is very often GP- or consultant-driven; today, the opportunity to discuss matters with a doctor may be limited or non-existent. This should not stop people from having the opportunity to consider what they want.
I know that raising the subject of dying is uncomfortable, but, armed with the information I have mentioned under ‘emergency care planning options’, please be brave and do your best, especially with any client you know to:
- have health risks that are so severe that the client is being shielded
- be aged 70 or over or
- have an underlying health condition listed in the government guidance Staying alert and safe (social distancing), whatever age they are.
Look at yourself and your colleagues and consider whether an emergency care plan might be sensible for you or them. Consider asking them to think about their parents’ position as well.
Suggesting an emergency care plan could be a natural step in relation to any client who instructs you to make a new will or change an existing one. It could also be something you mention when checking in with an existing client who made their will some time ago, to confirm that they believe their will is up to date and that they do not wish to change it.
For some clients a decision of this kind will be easy; for some it will be very hard indeed; and for others it may be unbearable to think about it.
For those clients who want to do something, a simple advance statement on paper would be a good first step and should be achievable relatively quickly. A copy should be in the client’s possession, so that they can take the really important practical step of ensuring that it (along with a copy of a recent repeat prescription, if relevant) is available to anyone who needs to make treatment decisions, and especially to the emergency services. While my mother still lived at home, these were kept in a distinctive pot in the fridge and her carers knew where they were.
The client could follow this up by initiating any more formal, local processes available to them which, as I have said, are generally medical practitioner-led. For example:
- for clients in Greater London, there is a user-friendly, online advance care planning process available at coordinatemycare.co.uk. This starts with a patient-led section, but to become fully operational it requires input from a GP. There is no downloadable PDF version until it is operational.
- many local health trusts and hospitals have adopted ReSPECT. A client would need to contact their GP to find out if ReSPECT has been adopted in their area or what local process is used. Whatever the process, ReSPECT is an excellent starting point (though it has not been adopted in Wales).
Now, please do not judge me, but I am off to review the wills that my life partner (also a solicitor) and I made nearly 30 years ago, well before we had children.
The author is a former partner at a magic circle law firm