The haemato-oncology patient experience of the process of palliative care in the last year of life: A Constructivist grounded theory study

Abstract

Haemato-oncology patients comprise 8.5% of all adult cancers within the UK. Despite advances in treatment, the majority will eventually enter a palliative care phase. Evidence suggests that palliative care arrives too late or not at all for haemato-oncology patients, resulting in suboptimal care and many patients dying in hospital. Various reasons have been cited that affect the integration of palliative care services. However, to date, there have been no studies about the patient’s perspective of the process of palliative care in the last year of life.

Using Constructivist grounded theory, 21 semi-structured patient interviews were conducted from two health boards. Constant comparative analysis was used to drive the collection and analysis of data. The substantive theory of ‘Suspended and silent status passage: The incurable haemato-oncology illness trajectory’ was generated from the two core categories ‘facing death’ and ‘talking about death’. This substantive theory describes the length of time, which is suspended, that haemato-oncology patients have to face death where, overtime, there is less opportunity to discuss dying and future care needs as they are silenced. This is a new conceptualisation regarding the last year of life, for this patient group.

The findings have substantial implications for practice as they reconceptualise the incurable pathway as a ‘status passage’, with the inevitable outcome being death rather than the possibility of cure. As personalised care is central to the UK’s health and social care integration agenda, it is a timely piece of work, illustrating that individuals diagnosed with an incurable haemato-oncology disease should be offered a holistic needs assessment which incorporates elements of palliative care and long-term remission. The findings also illustrate that palliative care service provision should be based upon critical episodes of care in combination with longer term follow up, allowing more flexibility and a responsive process of palliative care.