Dr Susan M. Block, chair of the Department of Psychosocial Oncology and Palliative Care at Dana-Farber, has written about trails of the check list. The check list is aimed at making sure the topics of hospice and palliative care are discussed with every patient before a crisis situation emerges.
Conversations about hospice and end of life are often left too late. According to a US-based study published in 2012 in the Annals of Internal Medicine, 90% of patients with cancer only have their documented end-of-life care talks with doctors less than five weeks before death. The study results suggest that this conversation occurs with a doctor other than their own oncologist.
Dr Block commented: “The average time of the first conversation about end-of-life is 33 days before death. That’s really late, when you think about how much people have to come to terms with emotionally, as well as the practical issues, the family issues, the transportation issues, all the issues about getting care set up, making decisions about next steps.”
Dr Block and her colleagues at the Dana-Farber Cancer Institute of Boston have been trialling a check list approach to make sure that critical end of life talks happen even in emotionally charged situations, and to make them into part of a routine. The trial began in June 2012. It has involved 60 oncologists and 450 patients and will last for three years.
The check list is used with patients who are estimated to have less than a year to live. In a discussion which lasts 25 – 40 minutes, they cover the topics of:
- the patient’s understanding of the prognosis
- how much information they want shared with loved ones
- their goals of care, should their health seriously worsen
- their biggest fears and what functional abilities they could not imagine living without
- how much medical intervention they are willing to undergo to gain more time
- how much they want family members to know about their priorities and wishes.
One of the reasons that end of life conversations are left late are because of patient misconceptions of hospice care. Some patients equate enrolling into hospice care as “giving up”.
Dr Block added: “Hospice is the gold standard for end-of-life care for most people. Yet for many patients, that first conversation about hospice is the first time anyone has told them that their disease wasn’t going well. It’s just too much to take that in… We want people to be prepared with the first hospice conversation before it’s a crisis.”
Full details of the conversation check list will not be available until the study is complete. For more information, the article by Dr Block is available on the American Medical News website.