A qualitative study exploring patient, family carer and healthcare professionals’ direct experiences and barriers to providing and integrating palliative care for advanced head and neck cancer

Objectives: To report on direct experiences from advanced head and neck cancer patients, family carers and healthcare professionals, and the barriers to integrating specialist palliative care.

Methods: Using a naturalistic, interpretative approach, within Northwest England, a purposive sample of adult head and neck cancer patients was selected. Their family carers were invited to participate. Healthcare professionals (representing head and neck surgery and specialist nursing; oncology; specialist palliative care; general practice and community nursing) were recruited. All participants underwent face-to-face or telephone interviews. A thematic approach, using a modified version of Colazzi’s framework, was used to analyze the data.

Results: Seventeen interviews were conducted (9 patients, 4 joint with family carers and 8 healthcare professionals). Two main barriers were identified by healthcare professionals: “lack of consensus about timing of Specialist Palliative Care engagement” and “high stake decisions with uncertainty about treatment outcome.” The main barrier identified by patients and family carers was “lack of preparedness when transitioning from curable to incurable disease.” There were 2 overlapping themes from both groups: “uncertainty about meeting psychological needs” and “misconceptions of palliative care.”

Conclusions: Head and neck cancer has a less predictable disease trajectory, where complex decisions are made and treatment outcomes are less certain. Specific focus is needed to define the optimal way to initiate Specialist Palliative Care referrals which may differ from those used for the wider cancer population. Clearer ways to effectively communicate goals of care are required potentially involving collaboration between Specialist Palliative Care and the wider head and neck cancer team.