Diabetes Metab Res Rev. 2016 Jan;32 Suppl 1:303-10. doi: 10.1002/dmrr.2758.
Integrating palliative care with usual care of diabetic foot wound
Dunning T. AM
Centre for Nursing and Allied Health Research, Deakin University and Barwon Health, Geelong, Australia.
Palliative care is a philosophy of care and a system for delivering care. It can be delivered concurrently with usual care or as the prime care focus. Palliative care aims to enhance quality of life, optimise function, manage symptoms, reduce unnecessary aggressive interventions and provide opportunities for personal growth. The World Health Organisation emphasised the importance of considering palliative care early in the course of chronic diseases. People with diabetes can die suddenly, but the usual life course includes long periods of stable disease and intermittent periods of unstable disease.
Many people with diabetes with non-healing foot pathology also have other diabetes complications such as cardiovascular and renal disease and depression, which affect medicine and other treatment choices, surgical risk and quality of life. Two broad groups of diabetic foot disease exist: those that are likely to achieve healing but who could still benefit from a palliative approach that includes managing pain; and those where healing is unlikely to occur who would benefit from palliative care that might include some minor surgery and palliative wound care that can result in wound improvement and greater functional improvement than major amputations.
Many health professionals are reluctant to discuss palliative care or to suggest people document their end of life care preferences. If such preferences are not documented the person might not achieve their care goals, desired death or place of death and health professionals and families can be confronted with difficult decisions. Having end of life preferences documented is associated with better quality of life for the patient and greater patient and family satisfaction.
KEYWORDS: diabetic foot; end-of-life care; foot ulcer; integrated care; palliative care
Foot problems are an important diabetes-related care issue. They are costly to manage and are associated with significant morbidity, reduced quality of life, and mortality. The five-year survival rate from a new foot ulcer is 40-50%; less than the survival time of many cancers (Kong & Gregory 2016). People with diabetes-related foot problems are also likely to have other diabetes complications such as cardiovascular disease and neuropathy, which are also leading causes of death. Many of these people would benefit from palliative care, but do not receive it.
Recommendations to integrate palliative and end of life care with usual foot care are not encompassed in current diabetes foot care and other diabetes guidelines, despite the fact that the value and importance of including these care options is well documented and there is an emerging global debate about the importance of planning for end of life. It is well-known that the ultimate life trajectory is death, but individual/s trajectories are difficult to predict. Many clinicians are reluctant to discuss palliative and end of life care with people with diabetes for various reasons.
We began research into the palliative and end of life care needs people with diabetes in 2006. Our early research showed diabetes clinicians had knowledge deficits about palliative care and are reluctant to discuss palliative/end of life care with people with diabetes and rarely referred to palliative care clinicians. Palliative care clinicians’ lacked knowledge about diabetes and did not consult diabetes experts about their patients with diabetes receiving palliative care (Quinn et al. 2006). A structured literature review at the time identified only six papers specific to diabetes and end of life care; none mentioned diabetes foot problems. The initial research and the literature review indicated there was a need to develop some guidance about diabetes and end of life care for clinicians
Subsequent research using in-depth personal interviews with people with diabetes receiving palliative care and their family carers showed they want to discuss palliative care and plan for their end of life. The research also showed family carers often lack the knowledge and skills to help their relative care for their diabetes (monitor blood glucose and manage insulin) when the individual is too ill to self-care, which caused them considerable worry and distress and fear about accidently hastening death. This work led to the development of information brochures about end of life care for people with diabetes and families; See Figure 1.
Figure 1: Brochures available from www.caresearch.com.au/caresearch/tabid/1082/Default.aspx
Another outcome of the research was Guidelines for Managing Diabetes at the End of Life (2010), one of the first guidelines addressing diabetes and end of life; Figure 2. One challenge we encountered when developing the guideline was the paucity of randomised control trials and other quantitative evidence on which to base care recommendations. Most of the available evidence was qualitative: interviews, case studies and expert opinion. However, these studies also contribute important evidence about people’s values, preferences and behaviours; provided they are rigorous and relevant to the intended target audience.
The Guideline content was derived from the evidence and in-depth interviews with people with diabetes receiving palliative and their families, and surveys of palliative care experts. Palliative care clinicians used iterations of the draft guideline when caring for people with diabetes at the end of life; that is, the guideline was subject to critical clinical review during the development. The final draft was subject to external peer review before it was placed into the public domain.
We used our research findings and the literature review to develop Caring for People with Diabetes at the End of Life: a Position Statement, which encompassed a Guiding Philosophy, which was is used as the conceptual framework for our subsequent research; Figure 3.
However, evidence is not static; it constantly evolves, thus guidelines need to be revised regularly. Consequently, the Guidelines for managing Diabetes at the end of Life are currently under review.
The importance of the research is three-fold:
- Palliative care can be successfully integrated into usual diabetes care and reduces the care burden, improves function and quality of life.
- Palliative care can be commenced at any stage of the diabetes disease trajectory, including at diagnosis.
- Family carers need to be assessed and cared for during their care role and after their loved one dies. They are particularly vulnerable to infections, myocardial infarction and death in the first three months after the death.
Dunning T, Savage S, Duggan N, Martin P. 2012 Developing clinical guidelines for end-of-life care: blending evidence and consensus. International Journal of palliative Nursing 18(8):397-404.
Kong M-F, Gregory R. 2016 Preventing foot complications in diabetes: the St Vincent Declaration 26 years on. Practical Diabetes http?//www.practicaldiabetes.com/article/preventing-foot-complications-diabetes-st-vincent.
Quinn K Hudson P Dunning T 2006 Diabetes management in patients receiving palliative care Journal Pain and Symptom Management 32 (3):275-286.
The Guideline for Managing Diabetes at the End of Life development study was funded by the Nurses Board of Victoria Ella Lowe Inaugural grant.
Trisha Dunning AM
Chair in Nursing and Director Centre for Nursing and Allied Health Research Deakin University and Barwon Health, Geelong Australia