New Research – Some Terminally Ill Patients Don’t Understand The Medical Decisions They Can Make Or Discuss Their Choices With Family Or Doctors
Compassion in Dying and the award-winning patient information website http://www.healthtalkonline.org are holding a seminar Towards shared decision making at the end of life on Thursday 20th September. New research entitledHow do people approach decision making at end of life? will be launched at the seminar. Delegates including representatives from the Motor Neurone Disease Association and The Royal Marsden London will discuss the importance of shared decision making at the end of life, from both the patient and healthcare professional perspective.
Dr Suzanne Shale, author of How do people approach decision making at end of life said:
“While dying patients plan their financial and legal affairs as a matter of course, they are often far less aware of the sorts of medical decisions they might need to make as they die. This means they may not be thinking about, and equally importantly, are not discussing with people close to them, how they want to be cared for. Many patients interviewed had not considered their treatment preferences in detail or really explored them with family, and there was limited understanding of the purpose and legal validity of Advance Decisions. This is a great pity, because dying people also spoke a lot about wanting to spare their loved ones distress at the end. Not knowing what treatment a dying person would want can be very upsetting for people close to them. Given current and evolving medical sophistication, it is important that dying patients tackle the question of how they want to die.”
Sarah Wootton, Chief Executive of Compassion in Dying said:
“Dr Shale found that patients got their information from three main sources; health professionals, friends, and their own experiences of the deaths of loved ones. Compassion in Dying can work with health professionals to ensure that they are equipped to deal with difficult conversions about end of life, as well as ensuring our free information line is a useful resource for patients wanting more information and support.”
The seminar and research launch is invitation only, but the research will be made available directly after the seminar.
The End-of-Life Rights Information Line The End-of-Life Rights Information Line is available on freephone 0800 999 2434, or by [email protected] or writing to Information Line, Compassion in Dying, 181 Oxford Street, London W1D 2JT. The phone-line will be open between 11am and 3pm Monday to Friday. Compassion in Dying Compassion in Dying is a national charity (no. 1120203) that aims to support people at the end of life to have what they consider to be a good death by providing information and support around their rights and choices. We are a leading provider of free Advance Decisions in the UK and we also conduct and review research around patient rights and choices in end-of-life care.Compassion in Dying was set up in 2007 by the campaigning organisation Dignity in Dying to take on the charitable aspects of its activities. The two organisations now work in partnership.While Compassion in Dying aims to increase people’s understanding of and empowerment around existing end-of-life rights through information, research and education, Dignity in Dying campaigns to extend and defend individuals’ rights at the end of life. For more information on Compassion in Dying visit http://www.compassionindying.org.uk.