Talking about palliative care needs and death with people with diabetes

Planning for end of life care is topical: but it is not a new concept.

Ancient Greek and Roman healers and philosophers suggested people should plan for their old age and end of life while they were young. Over time, death became synonymous with failure. The ancient wisdom was lost as it became possible to prevent, even cure, many conditions.

The ancient wisdom is re-emerging as society realises we are not actually preventing or curing preventable chronic life limiting diseases. Society is rediscovering the need to proactively plan for older age and death. After all, death is an inevitable, normal part of life. For many people it is a welcome relief.

The need to normalise death is evident in the following initiatives that place dying as a central quality and safety skill and value for all health care staff:

• Queensland Australian Medical Association’s call for ‘death education’ to be delivered in schools, as discussed in Talking Aged Care article; Death and dying 101- calls made for end of life education to be included in curriculum.
• Focus on death literacy and Dying to Know Day 8th August.
• The Victorian Voluntary Assisted Dying Act passed by the Victorian Government in 2017; other states are beginning to discuss the Act and its implications,
• The Victorian Medical Treatment Planning and Decisions Act 2016, which focuses on documenting values and care goals (instructions) became law in March 2018.
• Introduction of the 2nd edition of the Australian Commission on Safety and Quality in Health Care Standards 2017 that will be fully implemented by 2019. The standards encompass communication and end of life care planning.

Diabetes and end of life care
One person with diabetes dies every six seconds somewhere in the world. Diabetes and its complications are associated with 71% of deaths globally. Diabetes follows the chronic disease/frailty trajectory to death. Optimal diabetes care and outcomes requires older people with diabetes to undertake a significant burden of self-care and have regular consultations with heath care staff. Each consultation represents an opportunity to begin discussing and proactively planning for palliative and end of life care. Sadly, most of these opportunities are missed.

The key to recognising opportunities is helping health care staff develop ‘death literacy’ and excellent communication skills, especially the art of listening. Our contribution to that process is three pieces of evidence-based information tailored for older people with diabetes, families and health care staff to help them initiate discussions about palliative and end of life care.

We worked closely with older people with diabetes to decide the language, content and design of the information. They helped analyse the findings from the stakeholder consultation and decide what would be included or not included in the final versions of the information. These older people with diabetes were surprised to learn many health care staff have difficulty discussing death generally, and to use the word death. One man said:

I feel it is important for staff to be caring and ask if there is anything you [the patient] needs to talk about – you know like life and dying- to listen and hear and respond.




Professor Trisha Dunning AM, Chair in Nursing, Centre for Quality and Patient Safety Research, Barwon Health Partnership, School of Nursing and Midwifery, Deakin University

To find advance care planning forms and requirements for your state visit the Advance Care Planning Australia website. For more resources how to start the conversation on death and dying visit CareSearch Dying2Learn pages and for information on planning for end of life care visit CareSearch's End-of-Life Care section of the website.