Global Perspectives on Compassionate End of Life Care
This project arose from work I have been doing as part of my PhD exploring the foundations of compassionate end of life care. I had also been exploring the potential for telemedicine and other technologies at facilitating person-centred care and enabling people to stay in their preferred place of care at the end of life (see http://spcare.bmj.com/content/early/2016/02/05/bmjspcare-2015-001016.abstract )
The motivation for the travel scholarship was to find out more about what constitutes compassionate care. I was curious to know the role of advancing technologies in end of life care, but I was also aware that there are many concerns about the use of technologies in nursing as being substitutes for direct patient contact. I therefore decided to visit two very contrasting settings in which end of life care is provided – one in an area that I perceived as being “high-tech” (United States) and one that I perceived as being “low-tech” (Cambodia).
The first phase of my journey was in San Francisco, where I visited a range of generalist and specialist palliative care establishments, focusing particularly on the needs of “hard to reach” populations such as the homeless and those with mental health problems. San Francisco’s population experience disproportionately high rates of homelessness, drug and alcohol addiction and mental health problems. Perhaps partially as a result, there have been a wave of charitable and governmental initiatives there to accommodate caring for people at the end of life who experience many barriers to accessing care. I identified a range of policy initiatives that enabled the provision of compassionate care in a variety of settings, from mattresses delivered to people in doorways to free provision of hospice care. Of course, since the visit there are about to be seismic shifts in health policy in the United States and I remain concerned that those most affected by these changes will be those most vulnerable to experiencing poor end of life care.
Next, I visited Cambodia. As one of the poorest countries in South East Asia, without an integrated healthcare system, I was curious to find out what nurses do to provide compassionate care. In the country’s main hospitals there was a complete absence of end of life care and a shocking level of corruption, and the nurses as a rule tended to simply implement the doctors’ orders relating to treatment. All personal care, including provision of food and washing, was provided by family and friends. When I asked a nurse what would happen if someone were to be admitted without family, she looked surprised and told me this had never happened. I realised that the demographic in Cambodia, a largely agragian society, means that families rarely move away from one another. However even where there are no family members as is still sometimes the case, neighbours and friends are expected, culturally, to support a person in hospital. When I discovered that there is no defined provision of end of life care in the hospitals, I sought out those organisations that are working to change this. I spent time with a number of Non-Governmental Organisations and was able to explore how the staff in these teams were able to navigate the systems and provide compassionate care.
In both locations, it appears that the role of telemedicine is limited, and its’ potential benefit outweighed by costs at this time. The focus of the study therefore shifted during my time there to examine more closely what constituted compassionate care according to staff, patients and family members.
Synthesising my learning from both settings, there are two main implications for practice here. From San Francisco, I learned of the value of volunteerism in end of life care, in a resource-competitive healthcare system. This is perhaps best encapsulated in the “No One Dies Alone” policy at the Laguna Centre. The San Francisco experience is that there is no shortage of volunteers to offer this kind of work, that they find it rewarding and fulfilling for all sorts of reasons. There is no such scheme in UK hospitals, where the majority of people die. Even where patients have family present, the idea of a volunteer being allocated to support them on the busy hospital wards may make a monumental difference to their experience of care in the last days of their loved ones’ life.
From Cambodia, I learned that in our risk-averse culture, where we tend to side-line the opinions and perspectives of family members out of respect to patient autonomy, we risk both alienating them from the experience of being part of the process, and we foster dependence on a system that does not always require expensive specialist expertise. If we were to trust the perspectives of families more, then support and symptom management could be offered on an outpatient basis that moribund patients would not be expected to attend. The issue at the core of this is trust – as a healthcare culture we are averse to acting on proxy measures of wellbeing in order to manage a person’s symptoms at the end of life. However this is a culture shift that could be beneficial both for promoting family involvement and enabling people to remain in their preferred place of care (usually home) at the end of life.
I intend to continue this work by undertaking a literature review on family involvement at the end of life, and aim to now include this in my doctoral work which is due for submission in April 2017. Future work is to consider implementation of outpatient family clinics and development of a holistic volunteer network around hospital end of life care, particularly focusing on the Care of the Elderly ward where my current research is based.
This report is written as a series of blogs which were published on e-Hospice news during my travel scholarship, and they covered a range of topics from waste management to compassionate care (for example http://www.ehospice.com/ArticleView/tabid/10686/ArticleId/20577/language/en-GB/View.aspx) . I also published these on my personal blog (see https://lmiddletongreen.wordpress.com/ )
I am very grateful to the Florence Nightingale Foundation and to the Royal College of Nursing Foundation for the opportunity this has afforded me. This has been a life-changing experience for me and has motivated me to continue to work towards improving the care of people at the end of life in all settings.