Breaking the news
Talking about end of life care can feel difficult, to the point where clinicians may even actively avoid conversations with people who are dying. But Dying Matters research tells us that most people (over 80 per cent at all ages) would want to be told if they are terminally ill.
The thought of starting such a conversation may fill you with dismay. This is human. In our Dying Matters GP Pilot, participants used words such as "trepidation, dread, sadness, helplessness", and 60% of the GPs involved rated themselves as 'not confident' or 'not very confident' in initiating conversations about end of life, although many were experienced in end of life care.
The good news is, those GPs reported relief and satisfaction after having the conversation. The work showed that nine out of ten patients continued a conversation about end of life care if the GP started it. Other research has shown that the majority of people believe that their doctor will tell them if they are dying, and expect the doctor to start the conversation. Entering into a conversation about dying will never be easy, but doctors are highly skilled in managing a range of difficult conversations, and the discussion of death draws on many of those core skills and the experience you already have.
Starting the conversation
The section How to identify patients at the end of life sets out a range of triggers to help you spot when someone is entering the last year of their life. It is likely that these will arise opportunistically, eg in a routine consultation or after an admission. You may be in a position to move into the conversation right away, or you may wish to create a follow-up opportunity so that you can plan for the conversation in advance.
Some GPs find it helpful to signal the nature of the conversation in advance, so that the patient can also reflect and prepare. The Dying Matters leaflet To Do list may be useful to give to a patient to take away to signal and prepare for the conversation.
Preparation is Key
From the GP Pilot, we know that there can be different triggers for the conversation. It may be a relative, rather than the patient, who first raises the subject of end of life. You may want to acknowledge the trigger and then organise a follow-up time to have the conversation. This gives you an opportunity to plan for the conversation and have useful material to hand. You may choose to book the patient for a double session, invite them to come back later in the week, or to see them at home. Most importantly, you can prepare yourself, so that you feel more confident and ready going into the conversation.
Patients reported that seeing a Dying Matters poster displayed in the practice, and any material which helped them think about subjects to cover, were useful. You can download or order a range of leaflets and posters.
- Plan when and where to have the conversation; allow enough time
- Get the setting right and think about non-verbal communication such as body language
- Ask open, focused questions; use active listening; maintain eye contact
- Show empathy and avoid jargon; give people time to absorb what is being said
- Family members may also want to be part of the conversation, or subsequent conversations.
- Leave patient resources such as the To Do List leaflet (PDF) and Remember When We... leaflet (PDF) in waiting rooms, as this can help prompt patients raise the topic.
There is more on the content of the conversation in How to help your patients plan.
Practice builds confidence and competence
The Dying Matters pilot showed that focused learning in communication skills, role play and scenario testing can improve GP confidence. The Resources section has information about further training and development.
Do have faith in your own experience. You are skilled and experienced in managing a consultation. There are common skills for a good consultation and a good conversation about end of life. Practice may not make perfect, but it does help. The more of these conversations you start, the more fluent and effective they will become.
After the conversation
As part of the conversation you will make and document a plan with the patient. Some common actions which follow on from this include:
- In the GP pilot, in 69 of 155 (44%) conversations with patients about end of life, the GP then went on to have a conversation with family members; this is important in building support for and involvement in the plan, and managing expectations
- Documenting the patient’s preferred place of care (30%)
- Giving further information (Dying Matter’s To Do List was often used)
- Discussing and recording patients’ wishes regarding resuscitation (in 25% of the conversations). The ACP material may be useful here.
Support and development for having the conversation
- The National End of Life Care Programme (NEoLCP) website offers excellent resources to support structuring the 'difficult conversation' in its communication skills section, as well as other relevant resources such as a Principles of Good Communication support sheet (PDF).
- The NEoLCP has also produced a workbook and DVD called 'Finding the Words'. It is aimed at health and social care professionals who are in contact with people and families at the end of life.
- The End of Life Care for All (e-ELCA) e-learning preview site has a good overview of communication skills for end of life care; the full e-ELCA site has further resources.
- Find out how others have dealt with this area by reviewing the NEoLCP pilot sites for communication skills training.
- There will be a local network of professionals who can offer avice and support in this field; you could contact a Macmillan GP in your area or your local GP with a special interest in end of life care, as well as specialist palliative care consultants. Take time to talk about it with your immediate colleagues; you can provide peer support to each other.
This five-minute video has insights from GPs who took part in Dying Matters pilot on having the conversation
- Talking and listening to patients are core elements of the Royal College of General Practitioner's (RCGP) End of Life Patient Charter (PDF).
- Dying Matters has information leaflets and resources for patients, relatives and carers to support people in talking about their end of life wishes. You can also call 08000 214466.
- The RCGP end of life care website contains much useful information on delivering high quality end of life care; RCGP's e-learning for GPs also has useful communication skills resources.
- The NEoLCP Routes to Success series all feature relevant material on communication skills, and cover some more specialist areas, eg learning disabilities.
- There are more than 150 interactive e-learning sessions within e-ELCA, which are freely accessible to clinicians
- The Gold Standards Framework in Primary Care offers training in end of life care, among other useful resources
- The General Medical Council has published excellent guidance in its publication treatment and care towards the end of life: good practice in decision making, and has produced some interactive e-learning materials.
- Cancer Research UK has a list of questions that people may ask when they are dying.
Some resources for working with specific groups
- Find out more about having end-of-life care conversations with heart failure patients.
- Difficult Conversations for People with COPD and for People with Dementia information is available from within the National Council for Palliative Care library.
- End of life plans for children covers some considerations for younger patients.
- The Social Care Institute for Excellence (SCIE) has produced a video on supporting people with dementia at the end of life.
- "Be honest and don't offer false hope" - Professor Mayur Lakhani, chair of the Dying Matters Coalition, on the need for GP openess.
- DVD set to boost GPs confidence in end of life care - Dying Matters' new training resource, 'How Long Have I Got, Doc?'