Irene Hirschberg
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View article: Coping and end-of-life decision-making in ALS: A qualitative interview study
Coping and end-of-life decision-making in ALS: A qualitative interview study Open
How do people with amyotrophic lateral sclerosis (PALS) deal with their diagnosis and engage in end-of-life decision-making? What informational or supportive needs do they have for counselling about life-sustaining treatment and end-of-lif…
View article: Talking about the end of life: communication patterns in amyotrophic lateral sclerosis – a scoping review
Talking about the end of life: communication patterns in amyotrophic lateral sclerosis – a scoping review Open
Amyotrophic lateral sclerosis (ALS) leads to death on average 2–4 years after the onset of symptoms. Although many people with the disease decide in favour of life-sustaining measures, some consider hastening death. The objectives of this …
View article: The wish to die and hastening death in amyotrophic lateral sclerosis: A scoping review
The wish to die and hastening death in amyotrophic lateral sclerosis: A scoping review Open
Background Amyotrophic lateral sclerosis (ALS) develops into a life-threatening condition 2 to 4 years after the onset of symptoms. Although many people with the disease decide in favour of life-sustaining measures, thoughts about hastenin…
View article: Supplementary Material for: Do Public Involvement Activities in Biomedical Research and Innovation Recruit Representatively? A Systematic Qualitative Review
Supplementary Material for: Do Public Involvement Activities in Biomedical Research and Innovation Recruit Representatively? A Systematic Qualitative Review Open
Background: Public involvement activities (PIAs) may contribute to the governance of ethically challenging biomedical research and innovation by informing, consulting with and engaging the public in developments and decision-making process…
View article: Ethics Literacy and “Ethics University”: Two Intertwined Models for Public Involvement and Empowerment in Bioethics
Ethics Literacy and “Ethics University”: Two Intertwined Models for Public Involvement and Empowerment in Bioethics Open
The Ethics University is an innovative model for public involvement and empowerment activities on ELSA theoretically underpinned by a concept for "ethics literacy." This model deserves further refinement, testing in other ELSA topics and e…