The campaign group ‘In My Own Bed Please’ arose at the outset of the coronavirus pandemic in response to a perceived unmet need for urgent palliative care at home for those suffering life-threatening Covid-19 infection who would prefer to stay at home. We wrote blogs on the Centre for Evidence-Based Medicine (CEBM) website to interpret the findings of the CEBM Palliative Care Rapid Review group for a wider audience. The termination of the group coincided with the advent of the vaccines. Since then we have been identifying areas of best practice around the country and visiting them, as well as developing an ACP template for people without a life-limiting illness.

The template developed from our joint attempts to write our own ACPs and now forms the basis of our support programme. The programme is accessible through our website ( Home - In My Own Bed Please ) and we are promoting it initially by making presentations to groups in the Chiltern area such as U3A and Abbeyfield homes, as well as using the commercial outlets of the local hospice - The Hospice of St Francis.

Although it became apparent that in a pandemic, an ACP is a means of increasing the likelihood of achieving EOL care at home, it may seem unnecessary under normal circumstances. Around 90% of deaths have a diagnosis in advance and around 75% of people will have sufficient time to write an ACP during their last illness.

However, we have identified other benefits to writing an ACP in the absence of a life-limiting condition. Making the effort to consider one’s mortality, discussing the plan with others involved and registering a generic plan provides peace of mind, ensures a plan is in place come what may , and if it needs to be modified in the light of a specific diagnosis, makes that a simpler task at a difficult time. If enough people do it, it may even act as a lever for improving access to community palliative care.

There is compelling evidence that having a plan makes it more likely that you will die in the place you would prefer, reduces complicated grief for those you leave behind and reduces health costs in the last year of life. In addition, those with a plan have been shown to have a better quality of life.

So what are the obstacles?

Firstly, humans appear to be hard-wired to deny their own mortality and for many, considering one’s own death is anathema.

Secondly, the process can uncover unprocessed grief from previous bereavements and trigger anticipatory grief about loss of future and the painful feelings of loved-ones in bereavement.

Thirdly, producing an effective plan benefits from support from a health professional and they are currently in short supply and under workload pressure. 

That is why we are convinced that a simple template combined with a presentation and access to one-to-one support is needed to overcome these. We hope that starting locally will allow the initiative to take hold and grow organically. Approaching groups nearing the end of life should make it more likely to take root and start the ball rolling. Identifying and training volunteer supporters from the retired health care community will be our next step if this should occur.

I see writing an ACP as an act of love towards four groups – 

Those I love personally - because it will reduce their grief when I die and remove the burden of making difficult decisions on my behalf should I lose capacity towards the end (I have chosen to use the version of Lasting Power of Attorney for Health and Welfare that excludes life-extending treatments).

Myself - as I will be more likely to die how and where I prefer and will be less likely to have to make difficult decisions towards the end of my life, having made them already.

To the health care professionals looking after me - as they will benefit from having my guidance in making decisions about EOL treatment and care.

To the community on general - as by reducing my health costs in the last year of my life I am making those resources available to other people.

What’s not to like!

Lyn Jenkins (retired GP, bereavement support volunteer for Cruse and coordinator of IMOBP)

20.1.2023