Background Patients with advanced illness who are at risk of deteriorating and dying are ipso facto at risk of their heart stopping. The law with regards to involvement of patients and relatives in discussions about resuscitation is clear and mirrored in National Guidance. However there is very little evidence about public and user views about such discussions and decisions.
This study aimed to explore the views of public participants with a focus on those from minority ethnic backgrounds.
Method Members of the public were approached through a number of strategies including adverts in hospice shops, local radio, approach to cancer support groups and community organisations. Q methodology was used to reveal key viewpoints and to understand those viewpoints holistically.
Participants attended a workshop where resuscitation was explained together with the likely benefits and harms in advanced illness. Participants then completed a structured ranking (Q sort) of statements about resuscitation to best reflect their views. The 49 statements had been developed with reference to the literature, expert advisors, interviews with professionals and with PPI volunteers. A brief interview was conducted with each participant after their ranking of statements to further explore their views.
Results 38 people with diverse socio-cultural demographics attended 9 workshops. Some participants required one to one verbal translation of materials. Analysis of the Q sorts identified four viewpoints summarised as foregrounding: self-actualisation: ambivalent perspectives; fear of dying; and family as decision makers.
Conclusion Workshops about resuscitation decisions in advanced illness were welcomed. Q method can help describe the public viewpoints about resuscitation and the related discussions and decisions in advanced illness. In turn this information about the way a patient perceives the issues may help professionals best support patients in discussions about their end of life care.
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