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Making end of life care decisions in care services

April 24, 2020

For providers, there is an urgent need to ensure everything is in place for making end of life care decisions in care services.

Claire Henry MBE writes about the best ways to make sure you’re prepared.


In these unprecedent times, making decisions feels more acute and pressured than ever. Decisions need to be made about staff, residents and their families, and then there’s our own personal situations, with decisions about ourselves, our family or others who are important to us, so where to start?

Firstly, look after yourself – whatever that looks like. Try to stay fit and healthy and remember the basics; stay hydrated, take a break make sure you eat and take a little time for yourself each day, even just 15 minutes can make all the difference.

You may already have been faced with some of the most challenging decisions in your career with the impact of COVID-19. The routine in your service has changed, you have had to make decisions about the way you work, what your staff need and where to get support.

The added dimension is that policy and guidance are changing on what feels like a daily basis, meaning there is a constant need to keep reviewing and making decisions.

These pressures may feel especially accentuated when it comes to supporting people who have life-limiting conditions. It’s important to know what is important to them, their wishes and preferences if their condition deteriorates.

Check to see what is in place. Do they have an advance care plan, have there been discussions and decisions made a about resuscitation status and, if so, has this been recorded correctly following local policy and using the right paperwork to ensure that person’s wishes are adhered to? Do the wishes expressed need to be revisited with the person and their family?

If these discussions have not been had, make sure you or a member of your team finds out what is important to people. If someone does not have a plan in place it is vital that you seek support from your local GP or palliative care team who will be able to help you with discussions around what is important to the person when they are dying, as well as the sensitive nature of having conversations about resuscitation and how to document them.

If you are running a residential care service, you will also be making decisions about visitors to your care home. You will perhaps already have taken the step to stop all visiting to protect your residents and staff. But you will also have to decide whether to allow one family member to come in and stay with a resident when you can see they are imminently dying, weighing up the risks but also thinking about any benefits.

My suggestion would be to decide on a case by case basis, and you would need to be assured that the family member who may come in has no signs or symptoms of COVID-19.

You may also have to make decisions about keeping residents in the care home or transferring them to hospital. These are possibly decisions you are used to making, but I am sure it all feels different at the moment. With this in mind, do you know how to get support if you need it from fellow professionals in health and social care?

Things to consider include:

  • Finding out how your local palliative care team is offering support. Many are providing telephone and virtual support.
  • If you do not have it already, pull together a list of emergency numbers, as you do not want you or your team to have to search for these when there is an emergency.
  • Make sure your staff have some guidance in relation to end of life care – Helix Centre has produced some very practical information.
  • Find out what the process is if one of the people you support does die. Speak to your local coroner, funeral director and crematoria.

Help is out there for you in making end of life care decisions in care services, from amazing bodies such as the National Care Forum and Care England, to advice and help from Skills for Care.


Questions to ask yourself

What do I need to help me support residents to make end of life care decisions?

Where and how can I access support from healthcare services?

What do I need to do to look after myself?


Useful resources 

Practical guidance on caring for an individual who is in the final days of life at home or in a community setting:

National guidance on Do Not Attempt Resuscitation:

ReSPECT is a process that creates personalised recommendations for a person’s clinical care in a future emergency in which they are unable to make or express choices: 

Looking after yourself:

About Claire Henry MBE

MBE RGN Postgraduate Diploma BSc (Hons)
Independent Consultant in Palliative and End of Life Care
Claire Henry is an Independent Consultant specialising in end of life care. Her previous roles have included National Director for the NHS End of Life Care Programme which supported the implementation of the National End of Life Care Strategy for England, Chief Executive of the National Council for Palliative Care and Director of Improvement and Transformation at Hospice UK.

Claire’s background is in nursing; she trained at South Lincolnshire School of Nursing. After qualifying, she worked predominately in cancer and palliative care. She was awarded an MBE for her services to improving end-of-life care in the Queen’s Birthday Honours 2013. Claire has also received a lifetime achievement award from the International Journal of Palliative Nursing Award.

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