The views of patients with brain cancer about palliative care: a qualitative study

M. Vierhout, M. Daniels, P. Mazzotta, J. Vlahos, W.P. Mason, M. Bernstein

Abstract


Background

Palliative care, a specialty aimed at providing optimal care to patients with life-limiting and chronic conditions, has several benefits. Although palliative care is appropriate for neurosurgical conditions, including brain cancer, few studies have examined the views of brain cancer patients about palliative care. We aimed to explore the thoughts of brain cancer patients about palliative care, their opinions about early palliative care, and their preferred care setting.

Methods

Semi-structured interviews and the qualitative research methodologies of grounded theory were used to explore perceptions of palliative care on the part of 39 brain cancer outpatients.

Results

Seven overarching actions emerged:

  • Patients would prefer to receive palliative care in the home.
  • Increased time with caregivers and family are the main appeals of home care.
  • Patients express dissatisfaction with brief and superficial interactions with health care providers.
  • Patients believe that palliative care can contribute to their emotional well-being.
  • Patients are open to palliative care if they believe that it will not diminish optimism.
  • There is a preconceived idea that palliative care is directly linked to active dying, and that supposed link generates fear in some patients.
  • Patients prefer to be educated about palliative care as an option early in their illness, even if they are fearful of it.

Conclusions

Overall, when educated about the true meaning of palliative care, most patients express interest in accessing palliative care services. Although the level of fear concerning palliative care varies in patients, most recognize the associated benefits.


Keywords


Brain cancer; brain tumours; palliative care, home-based; palliative care, in-facility; qualitative research; palliative care; early

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DOI: http://dx.doi.org/10.3747/co.24.3712






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ISSN: 1198-0052 (Print) ISSN: 1718-7729 (Online)