The Role of Palliative Medicine in Assessing Hereditary Cancer Risk

Abusamaan, Mohammed S.; Quillin, John M.; Owodunni, Oluwafemi P.; Emidio, Oluwabunmi; Kang, In Guk; Yu, Brandon; Ma, Brittany; Bailey, Lauryn; Razzak, Rab; Smith, Thomas J.; Bodurtha, Joann

doi:10.1177/1049909118778865

Cited by 6 publications

(6 citation statements)

References 22 publications

(40 reference statements)

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“…Divergent opinions from providers, relatives, and patients about the suitability of cancer heritability discussions in palliative care are also reported in the literature. While some palliative care providers [5,6,[11][12][13] and participants in our study appeared reluctant to initiate discussions about cancer family history, most palliative care cancer patients in Abusamaan et al study [16] wished that cancer heritability and prevention were discussed in the end-of-life context. Interest in receiving genetic services in palliative care was also noted among patients in Quillin et al [17].…”

Section: Discussionmentioning

confidence: 85%

What do cancer patients’ relatives think about addressing cancer family history and performing genetic testing in palliative care?

et al. 2019

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Palliative care may be an opportunity to discuss cancer family history and familial cancer risks with patients' relatives. It may also represent the last opportunity to collect, from dying patients, clinical data and biospecimens that will inform cancer risk assessment and prevention in their surviving relatives. This study aims to explore the perspectives of cancer patients' relatives about cancer heritability, addressing cancer family history, and performing genetic testing in palliative care settings. Thirteen first-degree relatives of cancer patients who died in palliative care participated in the study. Two focus groups were conducted and transcribed verbatim. Two independent coders conducted a thematic content analysis. The themes included: (1) Knowledge of cancer heritability; (2) Experiences and expectations regarding cancer family history discussions, and (3) Views on genetic testing in palliative care patients and DNA biobanking. Participants seemed aware that cancer family history is a potential risk factor for developing the disease. They considered the palliative care period an inappropriate moment to discuss cancer heritability. They also did not consider palliative care providers as appropriate resources to consult for such matters as they are not specialized in this field. Participants welcomed DNA biobanking and genetic testing conducted at the palliative care patients' request. Cancer occurrence within families raises concerns among relatives about cancer heritability, but the palliative care period is not considered the most appropriate moment to address this issue. However, discussions about the risk to cancer patients' relatives might need to be considered on a case-by-case basis.

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Section: Discussionmentioning

confidence: 85%

What do cancer patients’ relatives think about addressing cancer family history and performing genetic testing in palliative care?

et al. 2019

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“…This global scoping review of policy recommendations complements the evolving dialogue about patients' [12,42], families' [43], and health professionals' [8,11,44] experiences and views of the barriers and facilitators affecting integration of genomics into palliative care by examining the policy environment. We have identified and mapped recommendations related to the integration of genomics into the care of people with palliative care needs.…”

Section: Discussionmentioning

confidence: 99%

“…In the palliative care context, heightened patient and family emotions, deteriorating patient health and cognition, and variable genomic attitudes and knowledge may influence a health professional's decision to initiate a discussion about genomic testing [10]. Although some palliative care health professionals have concerns about initiating genomic discussions with patients who have palliative care needs and their families [11], there is no evidence of psychological harm resulting from genomic discussions [12]. In fact, addressing existing concerns that patients with palliative care needs have about their relatives' future disease risk may yield positive psychological benefits [13].…”

Section: Introductionmentioning

confidence: 99%

Integrating Genomics into the Care of People with Palliative Needs: A Global Scoping Review of Policy Recommendations

White

McErlean

Virdun

et al. 2022

Public Health Genomics

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BACKGROUND: Genomics has growing relevance to palliative care, where testing largely benefits relatives. Integration of genomics into the care of patients with palliative care needs has not received the critical attention it requires, and health professionals report a lack of policy guidance to support them to overcome practice barriers. SUMMARY: To identify policy recommendations related to: (1) integrating genomics into the care of patients with palliative care needs and their families, and (2) care of the family unit, we performed a scoping review of palliative care and genomic policies. Two of 78 policies recommended integrating genomics into palliative care. Six palliative care policies mentioned genomics in background information but were without relevant recommendations. No genomics policies mentioned palliative care in the background information. Across all policies, guidance related to “Delivering Family-Centred Care” was the most frequent recommendation related to care of the family unit, (n=62/78, 79.5%). KEY MESSAGES: We identified a policy gap related to integrating genomics into palliative care. Without policy guidance, health services are less likely to commit funding towards supporting health professionals, reducing the personal and clinical benefits of genomics to patients and relatives. Framing genomic information as family-centred care enables policy makers to communicate the value of genomics to palliative care that will resonate with genomic and palliative care stakeholders. These findings increase awareness among policy makers of the benefits of genomic information to patients with palliative care needs and their families and call for incorporation of appropriate recommendations into palliative care and genomic policy.

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“…Genetic health professionals generally support new delivery models because of the rapid integration of genomics into mainstream medicine and increasing workforce pressure [ 11 , 12 ]. However, mainstreaming into palliative care appears to have received less attention, despite patients’ interest to discuss genetic testing to address existing concerns about their family members’ future disease risk [ 13 , 14 ]. Some palliative care health professionals report having the capability to discuss genetics with their patients, others have varied opinions on the relevance of genetics to palliative care and concerns about causing harm, but most desire further education and support to improve their confidence [ 15 , 16 ].…”

Section: Introductionmentioning

confidence: 99%

Approaching discussions about genetics with palliative patients and their families: a qualitative exploration with genetic health professionals

et al. 2022

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Genetic information can provide clinical benefits to families of palliative patients. However, integration of genetics into mainstream medicine has not focused on palliative populations. We explored the views and experiences of genetic health professionals in addressing genetics with palliative patients, and their families. We conducted an interpretive descriptive qualitative study with genetic counsellors and clinical geneticists using interviews and focus groups. Findings were generated using reflexive thematic analysis. Three themes were identified: (1) Focusing on the benefit to the family, (2) The discomfort of addressing genetics near end-of-life and (3) “It’s always on the back-burner”: Challenges to getting genetics on the palliative care agenda. Participants discussed the familial benefit of genetics in palliative care alongside the challenges when patients are near end-of-life. They perceived genetics as low priority for palliative care due to misunderstandings related to the value of genetic information. Acknowledging the challenges in the palliative care context, genetic health professionals want improved service leadership and awareness of the familial benefits of palliative genetic testing. Strong leadership to support genetic health professionals in addressing these barriers is needed for the benefits of genetic information to be realised.

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The Role of Palliative Medicine in Assessing Hereditary Cancer Risk

Cited by 6 publications

References 22 publications

What do cancer patients’ relatives think about addressing cancer family history and performing genetic testing in palliative care?

What do cancer patients’ relatives think about addressing cancer family history and performing genetic testing in palliative care?

Integrating Genomics into the Care of People with Palliative Needs: A Global Scoping Review of Policy Recommendations

Approaching discussions about genetics with palliative patients and their families: a qualitative exploration with genetic health professionals

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