Written by Associate Professor Grant Davies, Health and Community Services Complaints Commissioner and Ms Catherine Whitington, Manager, Assessment Service – Office of the Health and Community Services Complaints Commissioner.
Encountering staff experiencing life limiting illnesses in the workplace will become more frequent as the workforce ages. Economic uncertainty and increasing retirement ages contributes to people working longer and we are, therefore, likely to see more ill health and comorbidities in the workplace (Australian Institute of Health and Welfare, 2018). However, there is remarkably little guidance material available in Australia.
The two perspectives to be considered are the employer’s and the employee’s. They are not necessarily incompatible. An employer needs to understand and appropriately weight the employee’s fitness to work and their capacity to fulfill the inherent requirements of the job, knowing this capacity may not remain static over time. They may need to work with the employee to make reasonable adjustment including flexible work arrangements. In making those adjustments, other staff may well consider the distribution of work inequitable so determining what and how much information to share with others is a consideration. Providing a safe workplace for the employee and other staff is important, particularly in the context of deteriorating health, physical changes or the potential for serious health events in the workplace and the overall risks and benefits to the workplace (Palliative Care – Australian Capital Territory, 2020). For the employee, work may be part of their identity, they may also experience a loss of control to their daily lives and financial instability. The introduction of modified duties and flexible work arrangements, individual desires and wants in relation to work and the availability of sick leave entitlements must also be considered (Palliative Care – Australian Capital Territory, 2020) (Department of Health, Victoria, 2017). This is sometimes seen as a zero-sum equation but, as we will argue, does not need to be. Common needs may be identified and met.
In Australia, the few materials addressing this situation, are written for the perceived benefit of either employers or employees but not both. For example, Palliative Care – Australian Capital Territory have produced two separate but related publications. Life-Limiting Illnesses in the workplace – A toolkit for managers and HR Professionals relates solely to a perceived employer’s perspective however contains statements such as “Individuals should be allowed to work as long as they wish, subject to medical advice and any health and safety factors” and “Line managers are central to the effective handling of employees…” (our emphasis) (Palliative Care – Australian Capital Territory, 2020). Whereas the report Life-Limiting Illness in the workplace – A toolkit for employees (Palliative Care – Australian Capital Territory, 2020) discusses the rights and obligations for employees. Victoria’s Better Health Channel is written for the perceived benefit of individuals, explores the advantages and disadvantages of continuing to work, how to talk about the illness at work and issues around remaining in the workplace either as a carer or as a person experiencing life limiting illness (Department of Health, Victoria, 2017). This reinforces binary approaches.
Legal and ethical frameworks
These materials sit within legal frameworks governing the way information is collected, used and disclosed (Commonwealth of Australia, 1988), prohibitions against discrimination on the basis of disability (State of South Australia, 1984) and the obligations and safeguards in employment (State of South Australia, 1994). Ethical issues include autonomy, agency and privacy concerns of an employee and any biases of the employer including considerations in relation to equity of workload either actual or perceived with both the individual and with other staff (Beauchamp & Childress, 1994) (Mitchell & Lovat, 1991). What role does compassion play and what are its boundaries in relation to other ethical principles? How and by whom is value defined and who does it apply to? There are many stakeholders involved in these situations, beyond the employee and employer.
For some, the family of the person with life limiting illness may desire as much time with their loved one as possible. Staff working with the person may have a desire to help or find it confronting to witness the progression of a colleague’s illness. Additionally, the health system may be inflexible about engagement or make increasing demands on time and resources. The way each of these interests can be fully understood is through skilled interpersonal communication rather than a reductive approach.
Much of the existing guidance material is oriented toward individual binaries and lacks integration. Co-creation, incorporating the lived experience of all stakeholders, assists with a shared understanding of the likely value, respects the employee’s autonomy and identifies shared ‘stop’ points, for example, identifying indicators for appropriate and respectful discussion about exiting the workforce or reducing the complexity of work undertaken. Is there scope for a ‘compassionate community’ in the workplace? Anecdotally, we are aware of staff donating sick leave when an employee’s is exhausted. In our view, this situation can be framed using the Ottowa Charter for Health Promotion (World Health Organisation, 1986). The Charter outlines a framework relevant to individuals and their carers (Develop personal skill, Strengthen Community Action) which assists in co-design and facilitates their health and environment, to employers (Create Supportive Environments) by generating working conditions which are safe, stimulating, satisfying and enjoyable, to health services (Reorient Health Services) by supporting the needs of individuals in supportive ways and to the system (Build Healthy Public Policy) through shifting away from a zero-sum approach to an inclusive, collaborative one. We consider this framework is adaptable and scalable to individual circumstances and reframes the discussion enabling better outcomes.
Australian Institute of Health and Welfare. (2018, September 10). Older Australia at a glance. Retrieved from https://www.aihw.gov.au/: https://www.aihw.gov.au/reports/older-people/older-australia-at-a-glance/contents/social-and-economic-engagement/employment-and-economic-participation
Beauchamp, T. L., & Childress, J. F. (1994). Principles of Biomedical Ethics (Vol. 4). Philadelphia: Saunders.
Commonwealth of Australia. (1988). Privacy Act 1988. Canberra: Commonwealth of Australia.
Department of Health, Victoria. (2017, February 23). Managing work and employment with a life-limiting condition. Retrieved from Better Health Channel: https://www.betterhealth.vic.gov.au/health/servicesandsupport/managing-work-and-employment-with-a-life-limiting-condition
Mitchell, K. R., & Lovat, T. J. (1991). Bioethics for Medical and Health Professionals. Wentworth Falls: Social Science Press.
Palliative Care – Australian Capital Territory. (2020). Life-Limiting Illnesses in the workplace – A toolkit for managers and HR Professionals. Canberra: Palliative Care – Australian Capital Territory.
Palliative Care – Australian Capital Territory. (2020). Life-Limting Illnesses in the workplace – A toolkit for employees. Canberra: Palliative Care – Australian Capital Territory.
State of South Australia. (1984). Equal Opportunity Act 1984. Adelaide: State of South Australia.
State of South Australia. (1994). Fair Work Act 1994. Adelaide: State of South Australia.
World Health Organisation. (1986, November 21). Ottowa Charter for Health Promotion. Retrieved from https://www.who.int/teams/health-promotion/enhanced-wellbeing/first-global-conference