A mixed methods exploratory study of family experiences of anticipatory injectable medicines at home: It's a really good idea but it's just implementing it.

ObjectivesTo explore the experiences of bereaved family of anticipatory (JIC) injectable medications for symptom management and to identify ways to improve practice. MethodsA single site, mixed methods study in two phases. A postal questionnaire sent to 100 family carers (FCs) achieved a 38% response rate of whom 79% volunteered for an interview and 14 were sampled to reflect use of medication, concerns and relationship with the deceased. The descriptively analysed quantitative data and thematically analysed qualitative data were triangulated ResultsThe vast majority (89%) perceived benefits to JIC medications but 18% of these described mixed feelings and issues, related to the context of dying and the responsibility for powerful medications. Communication was a key theme and some FCs described emotional impacts, misinterpretation of the intent of the medications and many desired more information to equip and empower them. There were diverse experiences of obtaining medications and guidance on storage and disposal resulting in distressing experiences. Whilst most described good experiences of care and effectiveness of treatment 50% experienced delay in attendance of staff to administer medication. The majority of those interviewed would have been prepared to administer injections and the key driver for this was their experience of delays in resolving symptoms. ConclusionsFCs were generally positive about JIC medicines and care received but they had also been a source of distress and anxiety and people wanted more information and empowerment. Professional support had often been difficult to access at the point at which it had been needed. O_TEXTBOXKey Messages O_LIWhat was already known? O_LIAnticipatory medications for symptom management in the last days of life are promoted as good practice by NICE C_LIO_LIHealth professionals support this but have identified complexities and concerns C_LIO_LIThere is no research exploring family or patient views and experiences C_LI C_LIO_LIWhat are the new findings? O_LIFamily thought there were benefits but frequently described distressing experiences C_LIO_LIDelay in support to administer medications was common C_LIO_LIWith appropriate supervision some family care givers would consider administration C_LI C_LIO_LIWhat is their significance? O_LIJust-in-case medications are a trigger for thinking about dying. Practitioners need to anticipate that family may: O_LIRealise for the first time that their loved one is going to die C_LIO_LIThink that they are dying now, or more ill than previously suggested C_LIO_LIThink these drugs actually end life. C_LI C_LIO_LIFamily need more guidance about looking after a sick/dying person C_LIO_LIA PROM related to time to attend should be considered. C_LI C_LI C_TEXTBOX