End-of-life care: Qualitative research
Summary of findings
Key Findings 1. The hypothesis that HCPs need to have completed their own EoLC plan in order to have effective EoLC conversations with patients is only partly true. The more confident and experienced HCPs claim to be relatively comfortable discussing EoLC and are able to maintain professional distance. They can separate their personal and professional lives and do not feel disadvantaged in their dealings with patients on this issue. Some of the less confident and less experienced HCPs however (junior doctors especially) may gain in confidence as a result of making their own EoLC plans. Personal EoLC planning is, however, only one step along the path to improved EoLC conversations with patients. 2. Currently, both HCPs and the general public (as experienced by HCPs) lack the motivation to make EoLC plans. Most feel that their family will ‘instinctively’ know what they want at the end of their life. Moreover, they can see no spontaneous benefit to professional life through personal EoLC planning. Motivation levels (for both general public and HCPs) can, therefore, be increased by communicating the end benefits of EoLC planning - that the family will not be compromised financially, or emotionally, and that all loose ends will be tied up. Prompting HCPs to consider the lack of major disadvantages (especially when compared to the number of distinct advantages to planning) may also encourage HCPs to take some action in this area. 3. Prompting HCPs to consider EoLC planning as something that can be started irrespective of one’s stage in life, or personal circumstances, would also reduce opt out and help make the issue relevant to all. Utilising some of the ways that HCPs have already considered EoL (i.e. in terms of unofficial planning of where they would like to die, how they would like their funeral, etc) could potentially be a good way to frame any EoLC planning communication. 4. Any EoLC interventions will require HCPs and patients to make official some of the issues they may have already informally considered and provide more guidance as to the range of decisions and plans they can make. Communicating a comprehensive and wide-ranging ‘tick-list’ of EoLC considerations would help expand HCPs’ understanding of where they are and allow them to more easily assess other aspects of this journey, both for themselves and for their patients. 5. Communicating the importance of de-stigmatising EoLC for themselves, as well as for patients, would also help encourage EoL conversations and potentially action. Interventions such as awareness raising stands, posters and leaflets in public places may help to break down the taboo that surrounds EoL conversations amongst some HCPs and the general public. Awareness raising campaigns such as these may give patients the confidence to initiate conversations with their families and HCPs. It will certainly provide information about what should be included in EoLC plans and may even provide the motivation to actually go ahead and make one. 6. Any intervention to encourage EoLC planning amongst health professionals will need to affect a shift towards a more proactive attitude by making the issue more of a priority. Utilising their professional EoL experiences could be an effective way of framing the intervention to remind them that this is about them and that by being more self-aware they will be more able to interact and improve EoLC conversations with their patients. 7. Indications are that the best intervention to achieve the goal of improved EoLC conversations for all HCPs will be specific EoLC planning training. Training will give even the most junior and inexperienced HCP the confidence to initiate EoLC discussions and the skills to know when/how/what to say. Education and training of HCPs is likely to broaden the topic range within EoLC conversations from the medical to the more general and holistic. 8. The best partners to deliver this education and training are perceived to be the palliative care specialists working with the PCT - using a workshop approach to encourage cross-discipline interaction and understanding. HCPs see the production of a personal EoLC plan as the culmination of an EoLC training programme – i.e. they would be putting the training into action. (They do not perceive it to be an end in itself, only a means to an end). 9. The education programme itself could focus on communications training (recognising cues/hooks and knowing what to say, how and when), the practicalities of what is actually involved in EoLC planning (and how to access support and advice) and the legal issues surrounding EoL. Role-play exercises could be included to increase understanding and patient empathy. The development of one’s own EoLC plan would cement all of these features into a highly practical document – one that has both personal and professional relevance.
The overall aim of the research was to: Help the NCL EoLC CCI achieve its aims by informing the development of a specifically targeted social marketing campaign to encourage healthcare professionals to make their own EoLC plans, with the ultimate aim of improving EoLC conversations with patients and service users.
North Central London is a collection of 5 PCT’s (Enfield, Islington, Haringey, Barnet and Camden). These PCTs are working together to promote greater understanding and awareness of end of life care and associated choices. End of life care is one of the eight principal pathways for care reported on in the NHS Next Stage Review. The End of Life Care Strategy was developed in parallel with the review: it outlines the stages of good care for those approaching the end of life, their family and carers, from identifying people who are approaching the end of life right through to care for the bereaved. The North Central London End of Life Care Collaborative Commissioning Initiative (NCL EoLC CCI) are thus developing a social marketing campaign to help stakeholders plan their own end of life care.
Qualitative research was commissioned in order to inform the development of the interventions for the End of Life Care (EoLC) social marketing campaign. The research Indicated that the best intervention to achieve the goal of improved EoLC conversations for all healthcare professionals (HCPs) would be specific EoLC planning training.
Working age adults
A rolling programme of cross-disciplinary depths, pairs and trios was conducted in all five North London PCTs. GPs and hospital-based doctors were recruited for the one hour depth interviews. The remaining health professionals were mixed into cross-disciplinary trios and pairs, which lasted one and a half hours.
Data collection methodology
Barnet, Islington, Camden, Haringey, and Enfield PCTs