Dignity in the NHS
One critical area for dignity is in healthcare. Whether patients are treated respectfully is of urgent concern for many medical researchers – for its own sake, and because there is strong evidence that disrespectful treatment leads to worse health outcomes (Mann & Gruskin, 1995). Healthcare is a moment when individuals are particularly vulnerable, when power imbalances are very stark, and when the most personal aspects of our lives are practiced upon by a bureaucracy. There have been important efforts to understand and improve dignity and respect in medicine in general (Jacobson, 2009), in intensive care units (Chochinov et al, 2008) and in maternal health (Bowser & Hill, 2010).
One source of data is the NHS VOICES survey of bereaved people. From 2011-2015, the UK Office for National Statistics asked those who cared for a patient in England how they were treated in their final months, including whether they were treated with dignity and respect.
In the most recent data, all the rated care settings, a majority of respondents said that their loved one was always treated with dignity and respect; there is not an epidemic of disrespect in the NHS.
However, there are wide gaps between the best and the worst. Hospice doctors and nurses take exceptional care to be respectful, while care home staff, hospital doctors and hospital nurses lagged up to 33 points behind the best performers. GPs and Community Nurses lay in the middle of the range. This ranking has remained consistent across the years the survey was taken – perhaps implying that there is something constant about the pressures and incentives staff in these settings face.
That is not to say that things have remained static. Though hospital staff have remained at the lower end of the heap, they have improved significantly over time. Dignity and respect from hospital nurses increased significantly from 48% in 2011 to 54% in 2015. Similarly, dignity and respect shown by hospital doctors increased from 57% to 60% over the five years in question. There is surely room for continued improvement in the respect with which patients are treated.
One important variance is in place. An analysis of location in the 2011 dataset shows that Cornwall and the Isles of Scilly Primary Care Trust Cluster was the top performing area across all five care settings. Of the 50 clusters examined, 26 did not meet the performance target for treating patients with dignity and respect in any of the five care settings. We are reminded of the importance of place – over other factors – in explaining variance in experiences of respectful treatment by government officials across Kenya and Africa.
Such variation across England may be driven by poverty. In an examination of the 2011 data, patients in the most deprived areas were less likely to be treated with dignity and respect, and less likely to get a choice about where they died. In particular, this gap emerged for services received in the community – community nurses and GPs. Logistic regression found the odds of always being treated with dignity and respect by district and community nurses increased by 36% in moving from the most to least deprived area (p<.01). For the same calculation for GPs, the change was 80% (p<.001). This difference did not emerge in care homes or hospitals. It may be that institutions such as these are better able to build their own independent cultures of care, while services in the community are more affected by the struggles of the surrounding area.
The final important variation in how people were treated was by the disease they were suffering from. Consistently across the years, cancer patients have been treated with significantly greater dignity and respect than patients with cardiovascular or other diseases. This may point to the role of strong societal narratives that position cancer as a particularly prominent disease. Such narratives are important in communicating and transmitting cultures within institutions (Wein, 2018).
It is possible to be more or less respectful. The role of measurement is vital in tracking our progress, and it is a great shame that the survey is no longer conducted. The Dignity Project hopes to encourage institutions to routinely measure how respectful they are being of people’s dignity, in healthcare settings and beyond.
Equally important is in developing recommendations to be more respectful. The improvement among hospital staff shows that it can be done – but the variations by care setting, place, deprivation and disease show that we must take careful account of the context before making recommendations on how to do better. Efforts like the 2016 End of Life Care Audit by the Royal College of Physicians are valuable efforts to consider cultures and practices of care.
Source: ONS Statistical Bulletins and Reference Tables, NHS VOICES, 2011-2015.