Advance care planning and end of life care

End of life care

End of life care is the treatment, care and support for people who are probably in their last year of life, although this timeframe can be difficult to predict. Depending on the illness, some people might only receive end of life care in their last weeks or days, but many people are living for a long time now with many illnesses. Living with a long term illness  can have many impacts (including social and financial ) and there is good advice about this on the NHS website.  Within the Royal Free London please contact the support hub or the Macmillan information and support centre.

Advance Care Planning

Advance Care Planning involves talking to you and your family and friends about what to expect towards the end of your life. The healthcare professionals looking after you will talk to you about your specific needs and wishes, and will ensure they consider your wishes in relation to the treatment they provide to you. They will always want to provide treatments where the benefits outweigh the risks.

The care of the dying relates specifically to care in the last days and hours of life.

When do I need to think about Advance Care Planning?

You can start Advance Care Planning (ACP) at any time, starting earlier is always better as it gives you more time to think through all the possible options.

However, you may like to consider a conversation with your health care professional (your consultant or GP), regarding ACP, if you have one or more life-limiting conditions (such as: cancer, heart disease, kidney disease, dementia, respiratory disease, liver disease and neurological disease) and one of the following indicators of poor or deteriorating health:

  • Three or more unplanned admissions to the hospital in last 90 days.
  • Staying in bed or chair for more than half a day.
  • Needing at least two carers to help out with essential daily activities of life such as washing, dressing, toileting, etc.
  • Progressive unexplained weight loss.
  • Persistent symptoms, despite optimal treatment of your underlying condition or illnesses.
  • Choosing to reduce, stop or not have treatment; or wishing to focus on quality of life

Please know that we (healthcare professional) will initiate conversations, too, if you meet these criteria.

How do I start my Advance Care Plan?

The overall aim of Advance Care Planning is to both enable people (you) to live as long and as comfortably as they can and also to enable people, when they  are in their last days of life, to die in comfort, with dignity and in the surroundings of their choice. Although most people respond well to treatment, it is important to think about what you might want, if you were to become very unwell and our best treatment cannot improve your situation. Your healthcare team is responsible for assessing your health. We need to know what is acceptable to you and what you want, so that we can make the right plan together.

It is a good idea to communicate your wishes and preferences about your treatment, such as who to involve in discussions, the types of treatment you would like to have and the place where you prefer to be cared for, so that these can be considered when we are planning your care.

At Royal Free London NHS Foundation Trust, we are committed to providing compassionate care to you and your family and friends, and to team this with your expressed wishes. We encourage all our patients who are in their last year of life to consider completing an electronic document called ‘Co-ordinate my Care’.

Coordinate My Care (CMC) is an innovative NHS service that builds medical care around the wishes of each patient. Plans are created with a healthcare professional (usually a GP) and then shared electronically with all healthcare professionals who might be involved in care and treatment.

CMC for patients if you are a patient or carer
CMC for professionals if you are a health or social care professional
myCMC: start your own plan, in your own time, in your own home, online

Also, we are committed to providing high quality care and ensuring choice for all patients, wherever possible. We will work with you or your representative:

  1. To enable you to be in your preferred place of care and
  2. To support you and your family.

We will discuss with you any decisions you may have already made regarding your care and will talk with you about the best way we can support you at the end of your life.

If you wish to be cared for at home, we will do our best to accommodate this, with help from community services. We will discuss with your relatives and carers about what is practical. For further information about what to expect, please see our leaflet for relatives and friends, Care in last days of life.

For those patients who are acutely ill with limited reversibility of medical conditions and thus, who may be approaching the end of life, Advance Care Planning will include discussions about cardiopulmonary resuscitation (CPR) (CPR is provided if your heart stops functioning), treatment and comfort care should be provide in the ward setting rather than intensive care.

CPR attempts to restart the heart or breathing when these have stopped. Unfortunately, this is not always successful and does not work in patients with advanced and irreversible illness. This is because CPR will subject the patient to a vigorous physical intervention that deprives them and those important to them of a dignified death. For some people this may prolong the process of dying and, in doing so, prolong or increase suffering.

Your doctor or the healthcare professional caring for you will ensure that decisions about CPR are discussed with you, in order to establish your wishes. The healthcare professionals will make a clinical judgement about whether to attempt CPR, based on how likely it is to succeed, as we need to ensure that an ineffective treatment is avoided and patients who are dying have a dignified and peaceful end.

If you would like information on palliative care, you can find it here.

Other support services available

Chaplaincy and spiritual care

The Chaplaincy-Spiritual Care team is here for everyone of any faith, belief or philosophy of life.  We offer spiritual, religious and pastoral care to patients, staff, visitors and volunteers.

You do not have to think of yourself as religious to make use of our service. Some people may value the opportunity to talk to someone about how they are feeling and the changes they may be facing.

Our teams include Christian (Anglican and Roman Catholic), Jewish and Muslim Chaplains. We have a range of volunteers including Buddhist, Sikh and Humanist practitioners currently.  If a representative of your faith is not listed above, we will be happy to arrange a representative for you where possible.

Bereavement services

Our bereavement team is committed to providing an effective, compassionate and sensitive service, and the bereavement officers offer practical and emotional support to the families and friends of loved ones who died within the trust's care. 

Support hub

The Support hub offers support and information to people affected by long-term health conditions and their carers. The staff provide a friendly ear to talk to about whatever is on your mind and provide information on further support in the community if needed.  The support is free of charge.

Patient advice & liaison service (PALS)

If you need advice or have concerns about the care and treatment being provided to a loved one, our PALS team will offer you help and support and liaise with relevant staff to answer your questions and resolve your concerns quickly.