Genetics in palliative oncology: a missing agenda? A review of the literature and future directions

Purpose In the palliative oncology setting, genetic assessment may not impact on the patient’s management but can be of vital importance to their surviving relatives. Despite care of the family being central to the ethos of palliative care, little is known about how hereditary aspects of cancer are...

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Bibliographic Details
Published in:Supportive care in cancer 2018-03, Vol.26 (3), p.721-730
Main Authors: Morrow, April, Jacobs, Chris, Best, Megan, Greening, Sian, Tucker, Kathy
Format: Article
Language:English
Subjects:
Genetic Counseling - methods
Hospice care
Humans
Literature reviews
Medical genetics
Medical Oncology - methods
Medicine
Medicine & Public Health
Neoplasms - genetics
Nursing
Nursing Research
Oncology
Pain Medicine
Palliative care
Palliative Care - psychology
Qualitative Research
Rehabilitation Medicine
Review Article
Terminal Care - methods
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Summary:Purpose In the palliative oncology setting, genetic assessment may not impact on the patient’s management but can be of vital importance to their surviving relatives. Despite care of the family being central to the ethos of palliative care, little is known about how hereditary aspects of cancer are addressed in this setting. This review aims to examine current practices, identify practice barriers and determine the genetic information and support needs of patients, family members and health providers. Methods Key databases were systematically searched to identify both quantitative and qualitative studies that addressed these aims. Data was extracted and coded using thematic analysis. Results Eight studies were included for review. Suboptimal genetic practices were identified, with lack of knowledge and poor confidence amongst providers reported as barriers in both qualitative and quantitative studies. Providers expressed concern about the emotional impact of initiating these discussions late in the disease trajectory; however, qualitative interviews amongst palliative patients suggested there may be emotional benefits. Conclusions All lines of evidence suggest that genetics is currently missing from the palliative agenda, signifying lost opportunities for mutation detection, genetic counselling and appropriate risk management for surviving relatives. There is an urgent need for interventions to improve provider knowledge and awareness of genetic referral pathways and for research into the genetic information and support needs of palliative care patients.
ISSN:0941-4355
1433-7339
DOI:10.1007/s00520-017-4017-9