Dying at home of cancer: whose needs are being met? The experience of family carers and healthcare professionals (a multiperspective qualitative study)

Correspondence to Dr Marlise Poolman, North Wales Centre for Primary Care Research (Bangor University), Cambrian 2, Wrexham Technology Park, Wrexham, LL13 7YP, UK; [email protected]

Introduction

Supporting patients to have choice about where they die is an important aspect of end of life care. In the UK in recent years, the focus has often been on supporting patients to die at home, as this is where most people prefer to die.^1–3 More recently, there has been a move towards exploring the quality of death in different settings and identifying other outcomes people value at the end of life.^4–6

Although home is where many people say they would prefer to die there is limited evidence on which specific aspects of the home environment are regarded as positive, and its contribution towards a ‘good death’, necessitating further study of the meaning of home.⁷ The role of family carers to support patients to die at home is critical and a home death is extremely unlikely to be achieved without this.^8–10 There is a growing body of evidence on what dying at home means to those supporting it to happen.^{11 12}

The number of UK deaths is predicted to increase to more than 620 000 per year by 2030.¹³ Many people, especially older people living alone, might not be able to be supported to die at home. It is therefore timely and important to clearly understand which aspects of dying at home, in addition to it being the preferred place of death, are regarded as contributing to a quality experience.¹⁴ These aspects should be maintained for those that are cared for at home in their last days of life, but, equally important and where a home death cannot be achieved, other care settings should consider if they can replicate some or all of these aspects.^{6 15}

There is extensive literature on what constitutes a ‘good death’,^16–19 with the National End of life Care strategy describing a ‘good death’ as ‘being treated as an individual, with dignity and respect, being without pain and other symptoms, being in familiar surroundings and being in the company of close family and or friends.¹ Having a ‘good death’ is linked to having high quality palliative...