What is fundamental care in palliative care?

A blog post written by Dr Rebecca Feo, Research Fellow, College of Nursing and Health Sciences and Caring Futures Institute, Flinders University and Dr Tiffany Conroy, Senior Research Fellow, College of Nursing and Health Sciences and Caring Futures Institute, Flinders University

Numerous reports and news stories abound, detailing people’s harmful and distressing experiences of healthcare. This is perhaps most evident in the harrowing submissions to the Royal Commission into Aged Care Quality and Safety. The Commission’s interim report concluded that the aged care system 'is designed around transactions, not relationships or care' and 'minimises the voices of people receiving care.' These scathing assessments are not unique to aged care nor are they evident only in Australia. Healthcare systems globally are grappling with similar issues and have themselves been the subject of parliamentary inquiries.

Much of the harmful and distressing care that people experience relates not to outdated technology or inadequate professional skill; it relates to poor-quality fundamental care. Fundamental care addresses the needs that we all have, and which are crucial for our survival and well-being, from birth through to death. Examples include appropriate nutrition, mobility, cognitive engagement, and hygiene. Most of us attend to these needs for ourselves every day, often without much thought. Brushing our teeth and bathing are parts of our daily routine. Yet, when we are injured or ill, often we can’t perform these activities alone and require assistance.

Within our healthcare systems, evidence illustrates that fundamental care is delivered inconsistently or not at all. Up to 50% of hospital patients are: not assisted to eat or brush their teeth, unable to reach water, left in soiled bedclothes, and unbathed for lengthy periods. [1-3] For many patients, death and dying take place in open or shared spaces, creating challenges for the achievement of privacy and respect. [4] Distressingly, studies have shown that up to 40% of nurses report being unable to talk with patients during a shift. [5,6]

Providing high-quality healthcare is undoubtedly challenging. Populations are ageing, and health needs are becoming increasingly complex. Health systems are pressured to meet numerous targets, including reducing length-of-stay, readmissions and, of course, costs, all while withstanding a shortage of qualified nurses. We must ask ourselves whether these pressures make sub-par care acceptable. Has sub-standard care become the new norm we must expect for ourselves and our loved ones? Should we tolerate poor-quality fundamental care so long as our clinical condition improves? These questions are crucially important in palliative care, where the goal is not recovery but relieving suffering through the comprehensive assessment and treatment of physical, psychosocial and spiritual symptoms. [7]

Research has shown that what matters most for people experiencing palliative and end-of-life care is that: their physical and non-physical needs are met, their wishes are fulfilled, they communicate and develop relationships with the people caring for them, and their families are involved in their care. [8] This holistic, person-centred approach is at the heart of fundamental care. In 2013, the International Learning Collaborative (ILC) – the foremost global organisation on transforming fundamental care delivery – developed a framework for fundamental care that encompasses many of these elements. The framework outlines key factors for high-quality fundamental care in any context: 1) a trusting relationship between health professionals and patients; 2) integrating and addressing, in every episode of care, a person’s physical, psychosocial and relational needs; and 3) a supportive care context. For more on the framework, watch: https://www.youtube.com/watch?v=u807yEQAtN4

Whilst the Framework alone will not change healthcare culture and systems, it is a crucial first step. It places relationships, not transactions, at the centre of healthcare and acknowledges that people have complex health needs, which are not exclusively physical in nature. Making fundamental care a reality for everyone – from birth through to palliative and end-of-life care – requires a concerted effort from everyone in health education, research, policy and practice. The ILC is a global platform for helping to make this change; we encourage all who are interested in joining the movement to reach out: https://intlearningcollab.org/

References

1. Francis R. Report of the Mid Staffordshire NHS Foundation Trust Public Enquiry. London: The Stationery Office; 2013.
2. Chapman R, Rahman A, Courtney M, et al. Impact of teamwork on missed care in four Australian hospitals. J Clin Nurs. 2017 Jan;26(1-2):170-81.
3. Kalisch B, Xie B, Dabney B. Patient-Reported Missed Nursing Care Correlated With Adverse Events. Am J Med Qual. 2014 Sep-Oct;29(5):415-22.
4. Timmins F, Parissopoulos S, Plakas S, et al. Privacy at end of life in ICU: A review of the literature. J Clin Nurs. 2018 Jun;27(11-12):2274-84.
5. Brooks-Carthon JM, Lasater KB, Sloane DM, et al. The quality of hospital work environments and missed nursing care is linked to heart failure readmissions: A cross-sectional study of US hospitals. BMJ Qual Saf. 2015 Apr;24(4):255-63.
6. Ball JE, Griffiths P, Rafferty AM, et al. A cross-sectional study of ‘care left undone’ on nursing shifts in hospitals. J Adv Nurs. 2016 Sep;72(9):2086-97.
7. Rome RB, Luminais HH, Bourgeois DA, et al. The role of palliative care at the end of life. Ochsner J. 2011 Winter;11(4):348-52.
8. Mistry B, Bainbridge D, Bryant D, et al. What matters most for end-of-life care? Perspectives from community-based palliative care providers and administrators. BMJ Open. 2015 Jun 29;5(6):e007492.

Dr Rebecca Feo, Research Fellow, College of Nursing and Health Sciences and Caring Futures Institute, Flinders University

Dr Tiffany Conroy, Senior Research Fellow, College of Nursing and Health Sciences and Caring Futures Institute, Flinders University