Covid-19: Hope for the Best, Prepare for the Worst – Advance Care Planning
October 20, 2020
Dr Lyn Jenkins, co-authored by Ruth Waterman, on behalf of In My Own Bed Please
Correspondence to: firstname.lastname@example.org
As a bereavement support volunteer, I am hearing harrowing stories from relatives of those who have died in hospital of Covid-19. Theirs is a complicated grief, exacerbated by having been separated from their loved ones at a time when human contact is imperative.
This is just one of the many points to consider when thinking about where, and how, we would wish to be cared for, should we fall seriously ill with Covid-19. As the pandemic ramps up again, time is of the essence: we need to be pro-active if we want to avoid being overtaken by events, for the sake of our loved ones as well as for ourselves.
Making a care plan is a way of ensuring that our personal preferences are known when we become ill, even if we are no longer well enough to express them.
The proportion of people dying at their usual place of residence (home, care home or religious establishment) has increased substantially over time, from 35% in 2004 to 47% in 2018. (Nuffield Trust – dying at home). In the years 2015–19, 47% of all deaths occurred in hospital, 24% occurred at home, 22% in care homes and 7% elsewhere. (The KingsFund deaths from covid-19).
These proportions have changed since the onset of the pandemic, with total deaths at home more than doubling by mid-April. The reasons for this ‘displacement’ of deaths may include the lack, or perceived lack, of hospital facilities, or an aversion towards possibly exposing oneself to Covid in hospital. But this trend has continued during the last four months (The increase in Deaths in the Home Setting: ONS Update;
Deaths registered wekly in England and Wales, provisional).
It would be interesting to know, if possible, what proportion of deaths at home reflected wishes expressed in advance.
Advance care planning is for everyone, at any stage in one’s adult life, as long as it is kept up to date as circumstances change (particularly in relation to Covid-19). A review by the Oxford Centre for Evidence-Based Medicine (Advance care planning in the community in the context of Covid-19) stresses the importance of advance care planning in community settings, and summarises the relevant evidence and clinical guidance regarding this pandemic. I strongly recommend reading it.
Briefly, there are three components to advance planning, all with slightly different purposes, and there is excellent guidance on several websites that take you through the process step by step. An Advance Decision (previously called a Living Will) states your wish to refuse specific medical treatments and under what circumstances (for example, cardio-pulmonary resuscitation, mechanical ventilation, antibiotics, admission to hospital). There is no set form. Once it is signed and witnessed, it has legal standing. Your Advance Decision is not set in stone –as long as you remain mentally competent, you can change or cancel it.
An Advance Statement expresses your preferences, beliefs and values regarding your future care, should you be unable to communicate them. These can include food and drink, music, and other aspects of daily living that can make you more comfortable towards the end of life, as well as plans for your funeral and disposal of your body after death. An Advance Statement has no legal standing, but it can be a very helpful guide for relatives and others responsible for your care.
A Lasting Power of Attorney (LPA) for Health and Welfare(as distinct from an LPA for Property and Finance) is a legal document appointing specific people to make decisions on your behalf, should you become incapable of making them yourself. Most people understand that an LPA is vital in cases of dementia and debilitating stroke, for example; but an LPA becomes important if the circumstances of your illness are not covered by your Advance Decision and you are not competent to express a view at that point. The unpredictable nature of the current pandemic illustrates this perfectly. Creating and registering an LPA costs £88 and can be done with or without a solicitor. Make, register or end a lasting power of attorney
Close relatives will need to be made aware of the existence of these documents, and your GP and other doctors should be given copies. If they can be added to your Summary Care Record, they will be accessible electronically to any health or care professional 24 hours a day.
Future blogs will delve into the questions that can arise when making Advance Decisions and Advance Statements, but two good places to start are My Decisions. and Compassion In Dying
And a very useful workbook on advance care planning is available at https://chilterncompass.org.uk/
Knowing what practical steps to take is one thing – being psychologically ready to take those steps is quite another. Most of us have a certain reluctance in confronting our mortality! Fortunately, how to start thinking about it, and opening conversations about it with elderly relatives or friends, are challenges addressed more and more frequently and openly. Sensitive advice is available on all the above websites, particularly Dying Matters; and University College Hospital and the Marie Curie Foundation have recently published a guide for relatives and friends of people with dementia to help them to decide whether to arrange admission to hospital if a person with dementia develops Covid-19.
GPs are an obvious first port of call, and they themselves are being encouraged to raise the subject with their patients. Not all GPs are comfortable in this role, and things can go badly wrong. Early in the pandemic, some Clinical Commissioning Groups instructed GPs to contact vulnerable groups of patients and ask them to sign Do Not Attempt Cardio-pulmonary Resuscitation (DNACPR) letters. This has led to understandable distress amongst those contacted. We are even aware of some care homes being covered by blanket DNACPR Advance Decisions without discussion with residents or relatives. Both these situations are clearly unacceptable. We urge the Royal College of General Practitioners to redouble their efforts in training doctors in this area.
Even when a GP is skilled in holding this conversation, it can feel unsettling to make plans for an unknown future. The information and the supportive evidence required to make a considered decision about where to be cared for in the event of contracting severe Covid-19 is only now becoming available, and it is still far from complete – Covid-19 and the role of oxygen in palliative care at home
Staying at home with severe Covid-19: risks to family and carers. In addition, the services to provide the necessary care at home are still not universally accessible (Covid-19: access to out of hours palliative and end-of-life care at home). Furthermore, as relatively few people have died from Covid-19 at home, the facilities needed in the domestic setting have not yet been adequately tested.
Advance care planning has gradually been gaining more attention from government. In 2015, the House of Commons Health and Social Care Select Committee, chaired by Sarah Wollaston, GP and MP, issued a commendable report urging the government to promote it. Helen Whately MP, Minister of State for Care, in her recent response to the letter we sent to the Prime Minister in March noted that guidelines developed during the pandemic “empower frontline staff to have the hugely important conversations with patients that support the development of a personalised care plan”. We believe that much more could be done to promote, and prepare for, the use of advance care planning, particularly now. This includes providing the resources, especially for palliative care, to match the increasing demand resulting from more people choosing to be treated at home. Any higher expenditure will be more than offset by the savings gained from fewer hospital admissions.
When deciding where and how you wish to be cared for, you need to know not only the extent to which current government guidance has been implemented in the setting you have chosen, but also what arrangements there are for those who have been admitted to hospital and who wish to be returned to their homes to die if it becomes clear that they cannot benefit from further care in hospital.
Imagine that you are a woman caring for your elderly father when he is admitted as an emergency, delirious, with a raised temperature which turns out to be due to Covid-19. Without an Advance Decision in place and accessible to the hospital doctors, his wish to die at home will not be known; and without an LPA you will not be able to insist that he comes home to die even though you know that is what he would have wanted (see contrasting scenarios).
This pandemic is an unprecedented opportunity to breach the natural human instinct to deny our mortality. As we move into the next wave of the pandemic, let’s make a supreme effort to engage with this issue and make our plans now. Prepare for the worst, hope for the best.
Dr Lyn Jenkins, co-authored by Ruth Waterman
Two contrasting imagined scenarios; advance care planning for Covid-19
Scenario 19 – An unplannd death from Covid-19
Scenario 20 – A planned death from Covid-19
Correspondence to: email@example.com
In My Own Bed Please working group
Dr Lyn Jenkins MA(Cantab), BM BCh(Oxon), MRCOphth
Former GP/ophthalmologist, bereavement support volunteer
Sir Iain Chalmers DSc, FFPM
Dr Peggy Frith MD, FRCP, FRCOphth
David Waterman PhD(Cantab)