The National Hospice and Palliative Care Organization of the United States supports National Healthcare Decisions Day. According to the organisation: “Advance care planning involves making future healthcare decisions that include much more than deciding what care you would or would not want; it starts with expressing preferences, clarifying values, identifying health care preferences and selecting an agent to express healthcare decisions if you are unable to speak for yourself.”
In many countries, there is resistance or a lack of knowledge or awareness in relation to the idea of Advance Care Planning. This may be a result of living in a ‘death-denying society’, or due to avoidance of telling the truth about illness in an attempt to protect family members.
Stephen Connor, Worldwide Hospice Palliative Care Alliance senior fellow, has noted that avoidance of the truth to protect family members is more of a psychological than a cultural issue, and points out that every country has had or will have to go through some sort of change in this attitude over time.
Japan, for instance, used to be thought of as one of the least truth telling societies, but there are now many active efforts for the public to deal with truth telling, death acceptance and Advance Care Planning as part of caring for an elderly population.
In Spain, the previously unfamiliar concept of Advance Care Planning is being introduced through a systematic project. This is being implemented in the Catalonia region by the Catalan Department of Health and the WHO Collaborating Centre for Palliative Care at the Catalan Institute of Oncology, along with the Chair of Palliative Care at the University of Vic (Barcelona).
The project forms part of the Program for the Comprehensive and Integrated Care for Persons with Advanced Chronic Conditions, and aims to identify and provide timely care to patients with advanced chronic conditions in the community. It consists of a model designed by experts in the field, the elaboration of training material, and the implementation in all settings of care, focused in primary care and nursing homes.
Even in countries where awareness days dedicated to Advance Care Planning attempt to address the denial surrounding death, change is coming slowly. However, a number of organisations and social movements are driving this much-needed shift, such as The Conversation Project in the United States and Dying Matters in the UK.
The global Death Café movement aims to open the door to these more serious discussions by providing a friendly and informal space in which to discuss and thus demystify death and dying. The Project: ‘Global Interventions at the End of Life – social, comparative and historical analysis to promote global improvement’ at the University of Glasgow recently hosted a Death Café.
David Clark, principal investigator of the project, expressed his interest in investigating the ways in which the concept of Advance Care Planning manifested in different places around the world. He said: “We are certainly interested in looking at Advance Care Planning – in its various guises around the world – in our ‘Global Interventions’ project.”
In Canada, Louise Hanvey, project director for the Advance Care Planning in Canada Initiative said: “Advance Care Planning is just another positive choice, like wearing your seatbelt or safety gear when you take part in a physical activity. When you make an advance care plan, you’re making a healthy lifestyle choice for yourself – and for those around you.
“Your health status can change at any moment,” she said. “It’s important to make your sure your voice can still be heard.”