Diabetes, palliative and end of life care: Information to support shared decision-making

By Trisha Dunning AM FACN, P. Martin, N. Orford and L. Orellana.

Diabetes reduces life expectancy. One person with diabetes dies every 6 seconds somewhere in the world.¹  Diabetes is linked to 3.7 million deaths per year, globally ² and it is the underlying or associated cause of deaths due to cardiovascular disease, cancer, stroke and renal disease in Australia.³ Life expectancy for people with type 1 diabetes is 12 years less than the general population and eight years less for people diagnosed with type 2 diabetes before age 40.⁴

 

Although some people with diabetes die suddenly, the trajectory to death is usually slow and unpredictable and is characterised by many periods of deterioration and recovery.^{5, 6} Over time, the focus of care needs to change from “tight blood glucose control” to prevent complications, to managing complications to promote comfort and quality of life: that is, palliative care. Palliative care can be implemented at any time to improve function and comfort⁷ and can be combined with usual diabetes care; yet it is often overlooked until the late stages of life.

 

People with diabetes require regular assessment and complication screening. These clinical encounters could include proactively assessing whether the individual could benefit from palliative care, helping them decide their values, preferences and care goals and documenting an Advance Care Directive (ACD). In fact, the Victorian Medical Treatment Planning and Decisions Act ⁸ and encompass patients’ values and needs to and engage them in shared decision-making.

 

Clinicians often miss opportunities to discuss Advance Care Planning.⁹ Yet it is important to start a conversation while the individual is capable of making informed, autonomous decisions. Clear ACDs that state the individual’s values and care preferences also benefit clinicians and family members by helping them make decisions consistent with the individual’s wishes, when the individual cannot decide care for themselves. Thus, ACDs can reduce decisional stress in times of crisis. Sadly, research shows such conversations often occur during Medical Emergency Team (MET) interventions.¹⁰ A clear ACD can guide the MET team’s decisions, including the decision to commence palliative and end of life care.

 

Our research suggests people with diabetes want to discuss palliative and end of life care but are reluctant to initiate conversations because they do not want to upset their clinicians and because clinicians generally do not initiate such conversations.^{11, 12} They want to have reasonable control over their death, to die free from pain, have time to complete unfinished business and say good bye to people important to them.¹³

 

There is a significant body of literature about palliative and end of life care that is applicable to older people with diabetes; however, the information does not include important diabetes-specific information. We worked closely with an advisory group of older people with diabetes and an interdisciplinary clinician advisory group to:

• Develop and formatively evaluate an evidence-based suite of information to help older people with diabetes, their family members and clinicians recognise the ‘right time’ to begin discussing palliative and end of life care. The three versions essentially contain the same basic information but are tailored to the each group.
• Evaluate the suite of information in focus groups, individual interviews and written feedback from clinicians from a range of disciplines, older people with diabetes and families.
• Subject the information to review by four independent international experts in diabetes, palliative care, geriatrics and communication who use the Well Written Information for Consumers Guide¹⁴ and the AGREE II Instrument¹⁵ to determine the content relevance, acceptability, usability, and appropriateness of the design and the likelihood the information would be used in practice.
• Undertake a targeted literature review to identify diabetes-related factors associated with reduced life expectancy that are not included in commonly used tools such as the Gold Standards Prognostic Indicator (GSF),¹⁶ which describes general and some disease-specific indicators that an individual is entering the terminal stage of their life. The GSF does not include diabetes, although diabetes complications such as renal and cardiovascular disease are included.
• Map the information to key standards, guidelines and policies to ensure they are consistent with current care.

 

The stringent evaluation suggests the suite of information could reduce the number of missed opportunities for timely discussion about palliative and end of life care in routine consultations. It could help clinicians discuss palliative and end of life care with older people with diabetes, their families and help them make informed decisions and document an ACD.

 

The suite of information is available in various formats to cater for a range of information preferences: printed hard copies, downloadable interactive and static PDF files available from: https://www.dropbox.com/sh/pgc0pnpmlyzc0pi/AAC0SR6qG7mnHnYx8-Fys2jsa?dl=0

and iBooks from the iTunes store for people with iPhones and Macs from: http://itunes.apple.com/us/book/id1370224743

 

The way people die remains in the memory of those who live on.

(Dame Cicely Saunders).

 

References

1. World Health Day (April 7 2016) www.ibtimes.co.uk/world-health-day-2016-facts-figures-statistics-about-diabetes-1553515
2. Centre for Disease Control and Prevention (2016) cdc.gov/CD/
3. Australian Institute of Health and Welfare. 2017 Deaths among people with diabetes in Australia 2009-2014 Cat no CVD 79. Canberra.
4. Roper N, Bilous R, Kelley W, et al. 2001. Excess mortality in a population with diabetes and the impact of material deprivation: longitudinal, population based study. British Medical Journal 322:1389–93.
5. Lynn, J, Adamson, DM & Rand Corporation. 2003. Living well at the end of life adapting health care to serious chronic illness in old age, RAND, Santa Monica, CA, <http://www.rand.org/publications/WP/WP137//>.
6. Dunning T. (2018) The common disease trajectories: are they relevant to guide care as older people with diabetes progress towards their end of life. SM Gerontology and Geriatric Research. 2 (1):1011.
7. Worldwide Palliative Care Alliance and World Health Organisation 2014. Global Atlas of Palliative Care at the End of Life, THEWPCA.org.
8. Victoria State government (2016) Medical Treatment Planning and Decisions Act
9. Claessen, SJ, Francke, AL, Engels, Y & Deliens, L 2013. How do GPs identify a need for palliative care in their patients? An interview study’, BMC Family Practice, vol. 14, p. 42.
10. Jaderling G, Bell M, Martling C-R, et al. 2017 Limitations of medical treatment among patients attended by the rapid response team. Acta Anaesthesiologica Scandinavica doi:10.111/ aas.12202
11. Savage S, Dunning T, Duggan N, Martin P. 2012 The experiences and care preferences of people with diabetes at the end of life Journal Hospice and Palliative Care Nursing DOI: 10.1097/NJH.0601e3184bdb39
12. Dikkers M, Savage S, Dunning T. (2013) Information needs of family carers of people with diabetes at the end of life: a literature review. Journal of Palliative Medicine 16 (12):1617–1623.
13. Swerissen H, Duckett S. 2014. Dying Well. Grattan Institute. ISBN:1 -925015-61-4.
14. Currie K, Spink J, Rajendrum M. Communicating with consumers series, volume 1, well-written health information guide. 2000 https://www2.health.vic.gov.au/…/Communicating-with-Consumers-Series-Volume-1-WellWritten-Health-Information-Guide–July-2000
15. AGREE II Instrument – AGREE Enterprise website

https://www.agreetrust.org/agree-ii/

16        Gold Standards Framework Proactive Identification Guidance (PIG) 2016 www.goldstandardsframework.org.uk/PIG