Many people approaching the end-of-life could benefit from hospice, which can be defined as a patient centered approach to care in advanced disease, focusing on quality of life and relief of symptoms . The way in which hospice is delivered depends on individual patient needs. Hospice is frequently delivered by non-specialists, for example, as advance care planning in a primary care setting or symptom management in secondary care. Specialist multidisciplinary palliate teams provides more organized care in much complex scenarios, including hospitals, palliate care centers although they can also provide more straightforward end-of-life care.
Nearly in April 2018, Barbara Bush, champion for universal literacy and former First Lady of the United States, died at the age of 92 after a prolonged illness. Two days prior, a family spokesperson announced that she had “decided not to seek additional medical treatment and instead focus on comfort care.” A national survey of 800 US adults conducted in 2011 by the Centre to Advance Palliative Care found that 70% were “not at all knowledgeable” about palliative care. After they were provided with a brief description of palliative care services, 9 of 10 felt it was important to have access to palliative care for patients and their families, including their own loved ones. Another study surveyed 800 New York State adults in 2016 regarding palliative and hospice care and found similar results.
With the average family size expected to shrink and more people being in employment there will be fewer people able to provide full time care. I am forced to wonder whether there is an association with older people who wish to die in a hospice and whether they live alone or not. As well as being prepared for increased levels of demand, hospices will need to ensure that they are providing the care and services that people most want and need. Hospices must ensure they are sensitive to the shifting needs and preferences of their users including those of people who have previously not used hospice care. As one delegate pointed out ‘we need to understand the dynamic nature of people’s wishes and the complex trade-offs they might be prepared to make.’ Another posed a question about whether the preferences of the baby boomer generation at the age of 70 years will be the same as those of a 70 year old today. Although there is a good deal of data on caregiver burden there is little to distinguish the most effective models of support. Keeping in mind todays scenario it was a clear call to establish what support is most effective, for whom and at what cost. The question arises: How do we engage in more robust research about the effectiveness of hospice care? Could we work collaboratively as hospices on this?