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. 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. NHS England has provided national guidance on this topic, and an easy read booklet.

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 viable 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:

  • Unplanned hospital admission(s)
  • Staying in bed or chair for more than half a day.
  • Depending on others for care due to increasing physical or mental health problems.
  • Progressive weight loss; remaining underweight; losing muscle mass
  • 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 professionals) 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 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 urgent care plan. This was previously known as Coordinate My Care (CMC) but now known as the London Urgent Care Plan (LUCP). If you previously held a CMC care plan this will automatically be transferred to the LUCP.

The LUCP 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.  There is a leaflet about this service that you can share with those important to you.

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

  • To enable you to be in your preferred place of care and
  • 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 the 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 a medical procedure that attempts to restart the heart or breathing when these have stopped. Unfortunately, this is not always successful. It does not work in patients with advanced and irreversible illness and as such a conversation about Do Not Attempt Cardio-Pulmonary Resuscitation will be introduced. CPR will subject the patient to a vigorous physical intervention. For some people this may be unsuccessful and for others it 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, 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. We need to ensure that ineffective treatment is avoided and patients who are dying have a dignified and peaceful end.