Exploring cancer genetics and care of the family: an evolving challenge for palliative care

Abstract

There is a growing scientific understanding and increasing public awareness of the influence of genetics on the development of cancer. This article, which is based on a review of the literature, focuses on how the awareness of genetic predisposition to cancer is affecting patients and their families. It highlights the way that risk assessment for predisposition to cancer can conflict with traditional models of informed consent and can cause concern for families. It suggests that there is need for informed discussion within palliative care about how best to support families with concerns about a family history of cancer.

Exploring Hereditary Cancer Among Dying Cancer Patients—A Cross‐Sectional Study of Hereditary Risk and Perceived Awareness of DNA Testing and Banking

“…Instead, it is the familial nature of genetics assessment that may be of value to this population. This attention to genetic legacy is an understudied phenomenon that might be of medical significance to surviving family members, and of personal psychological benefit to dying cancer patients (Lillie 2006; Quillin et al 2008a; Skirton et al 2006). …”

“…While it is unlikely that the prevalence of hereditary cancer risk differs in this population, these data are not documented elsewhere in the literature. Identifying the prevalence of hereditary cancer risk in this population, particularly if patients have not had prior genetics evaluation, is a critical step in light of the proposed need for genetic services in this population (e.g., Lillie 2006; Quillin et al 2008a). Relatedly, we anticipated awareness would be low regarding genetic testing and especially regarding DNA banking.…”

Hospice nurses and genetics: implications for end‐of‐life care

“…The increasing prominence of genetics in the media is contributing to families and patients growing in their awareness that conditions may be inherited and so asking more questions of the nurses caring for them (Lillie 2006). However, nurse education has contained somewhat limited teaching about genetics (Kirk 1999, Metcalfe & Burton 2003, Burke & Kirk 2006) and there is scant information about practitioners’ views.…”

A clinical perspective on genetic counseling and testing during end of life care for women with recurrent progressive ovarian cancer: opportunities and challenges

“…Genetic counseling and testing for women with ovarian cancer nearing the end of life provides significant information to family members, and in our experience both patients and their families appreciate and can benefit from the process. The literature regarding genetic counseling and testing during end of life oncology care is sparse, but there is general agreement that further attention and research efforts should be directed towards addressing this population's needs [23, 24]. In particular, we feel that further research is needed on best practices for identifying and referring appropriate patients and raising awareness among healthcare providers engaged in end-of-life oncology care.…”