Surveys consistently indicate that the majority of people would prefer to die at home instead of in a hospital. However, a minority actually do.
Cicely Saunders International just published You Matter Because You Are You, an action plan better palliative care, in which the charity explores the key challenges faced at the end of life.
The report notes that “Too many people with life-limiting illnesses – as well as those approaching death – spend long periods of time in hospital, in part due to a lack of social or community care. Meanwhile, hospital
admissions are rising to unsustainable levels across the country, something that was made all the more apparent as parts of the NHS risked being overwhelmed during the COVID-19 pandemic.”
Most people want to die at home and most hospital workers would be in favour of much greater home care.
Some of the main obstacles to this include: the weakness of social and familial ties, lack of “coordination and information sharing between health and social care providers”, and inadequate emphasis on professional palliative home care.
Home will not suddenly become a great place to die if it is not a place of flourishing and relationship throughout life. Recognizing this, there is even an organization called the Home Renaissance Foundation that “aims to promote and develop greater recognition of the importance of the work required to create a thriving home.” No amount of funding could eliminate the need for the deep cultural renewal that leads us to spend ourselves on caring for those in our households and families who are dying.
The issue of coordination and information sharing is interesting. A person at the end of his or her life is particularly vulnerable and dependent and may rely on others to see and affirm the way in which the physical, psychological, social, spiritual, etc. dimensions are all integrated in one person. It is difficult enough for someone to do this for him or herself, so how much more complicated is it when multiple persons are providing compartmentalized care and treatments often without knowledge of the others involved.
The report also addresses the insufficient training on palliative care:
The Royal College of Nursing’s most recent End of Life Care Survey found that only 1 in 10 nurses felt equipped to deliver good end of life care, citing lack of training as a contributing factor. The latest data for medical student training shows that the average number of hours of palliative care training is around 25 hours and varies greatly between medical schools – as little as 7 hours in some cases.
If even those who are specially trained within the medical profession find themselves ill-equipped to accompany the dying, then there is certainly a poverty of this knowledge and readiness at large.
To understand why people want to die at home, we can ask ourselves what “home” means in this desire. And we can reflect on whether we are actually creating the homes in which we want to die after all.