Haemato-oncology (HO) patients comprise 8.5% of the overall adult cancers within the UK. Despite advances in treatment, eventually the majority will enter into a palliative care phase. Evidence suggests palliative care is late or non-existent for HO patients, resulting in suboptimal care with many dying in hospital. Various reasons have been cited as affecting integration of palliative care services. However, to-date there has been no studies from the patient’s perspective of the process of palliative care in last year of life.
Using the design of Constructivist grounded theory, 21 semi-structured patient interviews were conducted from two different NHS trusts between 2016-2017. Constant comparison technique was used to collect and analyse data.
The substantive theory of ‘Suspended and silent status passage: The incurable haemato-oncology illness trajectory’ emerged from the two core categories ‘facing death’ and ‘talking about death’. It describes the length of time, which is suspended, that HO patients face death; where overtime discussions around dying and future care needs are silenced. This is a new conceptualisation that has emerged from haemato-oncology participants experience in the last year of life.
This study reconceptualises the incurable pathway as a ‘Suspended and silent status passage’ with the inevitable outcome of death rather than a possibility of cure. The two core categories ‘facing death’ and ‘talking about death’ describes the length of time, which is suspended, that the patients face death; where overtime discussions around dying and future care needs are silenced. The findings also illustrate that palliative care service provision should be based upon episodic critical episodes of care allowing responsive process of care.
Clinical trial identification
Legal entity responsible for the study
University of Stirling.
Has not received any funding.
The author has declared no conflicts of interest.