The Burden of Healthcare: Impact on Patients and Carers
Finally, there is a substantial risk, as care moves into the community, that more demands will be placed on patients and their carers. These demands are potentially quite diffuse and wide ranging as new technologies emerge which are suitable for use in the home. Patients will increasingly have to work collaboratively with hospital and other staff to manage and coordinate their care.
While personal responsibility for care is very important for people who are in reasonable health (Roland and Paddison 2013) it becomes increasingly unrealistic as a person becomes frail and suffering from multiple problems. The burden of organisation of care is greater for patients who are elderly, less well educated, or from less affluent communities or who also have mental health problems. New technology will not solve problems associated with health literacy, which is not likely to improve greatly in the near future. If people are going to be cared for in their homes, both patients and carers will need much more comprehensive support and instructions in the nature of the disease, the treatments they give themselves and most importantly in the detection and response to deterioration.
The phrase 'burden of treatment' refers to the considerable demands that healthcare systems place on patients and carers (Mair and May 2014). For instance patients or their caregivers often have to monitor and manage their symptoms at home, which can include collecting and inputting clinical data. Adhering to complex treatment regimens and coordinating multiple drugs can also contribute to the burden of treatment. Coping with uncoordinated health and social care systems can further add to an ever growing list of management responsibilities and tasks facing patients and their caregivers. This is real work and can be overwhelming—it is time consuming and calls for high levels of numeracy, literacy, and, sometimes, technical knowledge. People who are socially isolated, poorly educated, have low health literacy, are cognitively impaired, do not speak the local language, or who have sensory or physical challenges will simply find this impossible. Mair and May (2014) propose that a key future quality metric will be the extent to which care disrupts people's lives and that a key question for doctors to ask their patients is 'Can you really do what I am asking you to do?'.