Genetic Screening and DNA Banking at the End of Life #206

2011 ◽  
Vol 14 (5) ◽  
pp. 656-657 ◽  
Author(s):  
John M. Quillin ◽  
Joann N. Bodurtha ◽  
Thomas J. Smith
Keyword(s):  
End Of Life ◽  
Genetic Screening ◽  
Dna Banking

Exploration of hereditary cancer and feasibility of genetic services at the end of life

2009 ◽  
Vol 27 (15_suppl) ◽  
pp. 9578-9578
Author(s):  
J. M. Quillin ◽  
J. N. Bodurtha ◽  
L. A. Siminoff ◽  
T. J. Smith
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Hereditary Cancer ◽  
Genetic Risk ◽  
Genetic Services ◽  
Dna Banking ◽  
Risk Patients ◽  
Surrogate Decision Makers ◽  
Surrogate Decision ◽  
Genetic Burden

9578 Background: For families, optimal hereditary cancer assessment begins with an affected relative. End of life could be the last chance for testing or DNA banking. Many palliative care oncologists do not feel qualified to offer genetic services and are rarely doing so (NSGC, 2008). The genetic burden of cancer in palliative care is unknown. Methods: We investigated prevalence of hereditary cancer among dying cancer patients, previous genetic testing or DNA banking, and awareness and intentions regarding these services. In spring/summer 2008 we recruited and interviewed patients (or surrogate decision makers) from the VCUHS Palliative Care Unit. Genetic risk was characterized as “strong” using classification criteria developed by Scheuner et al. (1997) or other consensus diagnostic criteria. Statistics were assessed using SAS 9.1.3. Results: 43 (47%) patients (including 9 surrogates) agreed to participate. The most common diagnoses were leukemias/lymphomas (n=9), and cancers of the lung (n=8), colon (n=5), and breast (n=4). 8 of 43 (18.6%, 95% CI = 7.0% to 30.2%) patients had “strong” genetic risk. Currently available genetic tests could have addressed risk for several patients, especially for HNPCC and hereditary breast/ovarian cancer. None had previous testing or DNA banking. Of strong-risk patients (or surrogates), 7 (87.5%) had heard/read “almost nothing” or “relatively little” about testing. All had heard/read little or nothing about DNA banking. 83% would “probably get tested” if offered, and 72% would “probably” or “definitely” bank DNA. There were no significant differences by race/ethnicity, nor by genetic risk. Conclusions: The genetic burden of cancer may be at least as high in the palliative care population as in other clinical settings and is not being discovered upstream. Patient interest in genetic services is high, but awareness is low. No significant financial relationships to disclose.

Four Themes in Recent Swedish Bioethics Debates

2011 ◽  
Vol 20 (3) ◽  
pp. 409-417 ◽  
Author(s):  
GERT HELGESSON ◽  
STEFAN ERIKSSON
Keyword(s):  
End Of Life ◽  
Priority Setting ◽  
Genetic Screening ◽  
End Of Life Care ◽  
Hpv Vaccination ◽  
General Interest ◽  
Life Care ◽  
Dual Use ◽  
Scientific Fraud ◽  
Vaccination Strategies

A wide variety of bioethical themes have recently been debated and researched in Sweden, including genetic screening, HPV vaccination strategies, end-of-life care, injustices and priority setting in healthcare, dual-use research, and the never-ending story of scientific fraud. Also, there are some new events related to Swedish biobanking that might be of general interest. Here we will concentrate on four themes: end-of-life care, dual-use research, scientific fraud, and biobanking.

Much Ado About Fried Chicken: Abetting Aspiration or Respecting Autonomy?

2019 ◽  
Vol 28 (3) ◽  
pp. 1356-1362
Author(s):  
Laurence Tan Lean Chin ◽  
Yu Jun Lim ◽  
Wan Ling Choo
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Multidisciplinary Team ◽  
Biopsychosocial Model ◽  
Family Members ◽  
Clinical Decisions ◽  
Goals Of Care ◽  
Complex Needs ◽  
Aspiration Risk ◽  
Patient Centric

Purpose Palliative care is a philosophy of care that encompasses holistic, patient-centric care involving patients and their family members and loved ones. Palliative care patients often have complex needs. A common challenge in managing patients near their end of life is the complexity of navigating clinical decisions and finding achievable and realistic goals of care that are in line with the values and wishes of patients. This often results in differing opinions and conflicts within the multidisciplinary team. Conclusion This article describes a tool derived from the biopsychosocial model and the 4-quadrant ethical model. The authors describe the use of this tool in managing a patient who wishes to have fried chicken despite aspiration risk and how this tool was used to encourage discussions and reduce conflict and distress within the multidisciplinary team.

End-of-Life Issues for People Who Use AAC

2005 ◽  
Vol 14 (3) ◽  
pp. 15-19 ◽  
Author(s):  
Melanie Fried-Oken ◽  
Lisa Bardach
Keyword(s):  
End Of Life ◽  
Life Issues ◽  
End Of Life Issues

Dysphagia in Hospice Care: The Roles of Social Work and Speech-Language Pathologists

2014 ◽  
Vol 23 (4) ◽  
pp. 173-186 ◽  
Author(s):  
Deborah Hinson ◽  
Aaron J. Goldsmith ◽  
Joseph Murray
Keyword(s):  
Social Work ◽  
End Of Life ◽  
Case Studies ◽  
End Of Life Care ◽  
Hospice Care ◽  
Patient Communication ◽  
Life Care ◽  
Speech Language Pathologists ◽  
Four Levels

This article addresses the unique roles of social work and speech-language pathologists (SLPs) in end-of-life and hospice care settings. The four levels of hospice care are explained. Suggested social work and SLP interventions for end-of-life nutrition and approaches to patient communication are offered. Case studies are used to illustrate the specialized roles that social work and SLP have in end-of-life care settings.

Die Entwicklung eines Instruments zur «Evaluation stationärer Hospize aus der Perspektive hinterbliebener Angehöriger» (EHPA)

Pflege ◽  
2011 ◽  
Vol 24 (3) ◽  
pp. 171-182
Author(s):  
Mandy Lohe ◽  
Manja Zimmermann ◽  
Christiane Luderer ◽  
Katharina Sadowski
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Subjektive Bewertung ◽  
Ethische Probleme

Als Einrichtungen des Gesundheitswesens sind stationäre Hospize in Deutschland zur Qualitätssicherung und internen Qualitätsentwicklung verpflichtet. Die Bedeutung der Patientenzufriedenheit als einer der indirekten Indikatoren zur Beurteilung der Pflege- und Betreuungsqualität ist mittlerweile unumstritten. Eine subjektive Bewertung des Hospizes durch den Gast selbst birgt sowohl praktische als auch ethische Probleme. Eine Befragung der Angehörigen empfiehlt sich. Der vorliegende Artikel beschreibt die Entwicklung eines Instruments zur Evaluation stationärer Hospize aus der Sicht hinterbliebener Angehöriger. Mit dessen Hilfe soll die Frage, wie Angehörige die Begleitung und Pflege beurteilen, die ihnen sowie ihrem verstorbenen Familienmitglied durch das Hospiz zuteil wurde, beantwortet werden. Die Konstruktion der Fragen erfolgte auf Basis bestehender Konzepte zum Assessment der end-of-life care und einer Analyse aller identifizierten Instrumente zur Evaluation stationärer Hospize aus der Perspektive hinterbliebener Angehöriger. Die Fragebogenentwicklung umfasste neben der umfassenden Literaturrecherche die Bildung eines Itempools, die Itemauswahl, die kritische Diskussion der Fragen im Expertenkreis sowie einen standardisierten und kognitiven Pretest. Entstanden ist ein fünfdimensionaler Fragebogen, der physische, psychologische, soziale, spirituelle und versorgungsorganisatorische Aspekte der end-of-life care integriert. Das Instrument umfasst 53 Items in Form überwiegend geschlossener Fragen.

Before I Die

GeroPsych ◽  
2018 ◽  
Vol 31 (3) ◽  
pp. 151-162 ◽  
Author(s):  
Qiao Chu ◽  
Daniel Grühn ◽  
Ashley M. Holland
Keyword(s):  
End Of Life ◽  
Psychosocial Development ◽  
Time Horizon ◽  
Development Theory ◽  
Life Stages ◽  
Socioemotional Selectivity Theory ◽  
Socioemotional Selectivity ◽  
Time Horizons

Abstract. We investigated the effects of time horizon and age on the socioemotional motives underlying individual’s bucket-list goals. Participants were randomly assigned to one of three time-horizon conditions to make a bucket list: (1) an open-ended time horizon (Study 1 & 2), (2) a 6-month horizon (i.e., “Imagine you have 6 months to live”; Study 1 & 2), and (3) a 1-week horizon (Study 2). Goal motives were coded based on socioemotional selectivity theory and psychosocial development theory. Results indicated that time horizon and age produced unique effects on bucket-list goal motives. Extending past findings on people’s motives considering the end of life, the findings suggest that different time horizons and life stages trigger different motives.

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