**4. Diagnostic uncertainty and prognostic challenges: Challenges to discussing palliative and end-of-life care**

It is certain that everybody will die eventually. The uncertainty lies in when and how an individual will die. The trajectory to death for people with diabetes can be a long and healthy one but is often a long process of physical and social decline followed by recovery until the final stages of life: the so-called chronic disease trajectory [2, 43, 44]. People can die, seemingly suddenly, during a disease exacerbation. However, most of these people have one or more indicators of limited life expectancy. Thus, their death was *possibly* predictable: the time of death might not have been. Episodes of deterioration become increasingly frequent over time and reduce the remaining physiological reserve and the person's ability to recover from subsequent exacerbations.

The chronic disease trajectory to end of life is unpredictable and includes many periods of deterioration and recovery before death occurs [38, 43, 44], which creates a degree of diagnostic uncertainty for many health professionals, people with diabetes and families. The uncertainty is compounded by challenges associated with prognostication and, sometimes, from misinterpreting individual's questions such as 'how long have I got Doc?' Mostly the individual wants an idea about how long they have left 'to put their house in order' and 'say my goodbyes'. Such questions could be a cue to health professionals to begin advance care planning to document the individual's values and care goals and preferences. Some strategies to enhance such conversations are shown in **Table 2**.

Diagnostic uncertainty encompasses cognitive, emotional and ethical reactions, which are affected by the need to discuss care options with the individual


Understand and accept that not everybody is capable of making informed decisions during a crisis and some people prefer certainty, i.e. to be 'told what to do'

#### **Table 2.**

*Palliative Care*

Life-limiting illness

**Term Explanation Considerations**

Diabetes experts recommend normalizing blood glucose, lipids and blood pressure to reduce the risk of complications that can

Palliative care experts and many geriatricians recommend people to document their values and end-of-life preferences while they are able to make informed, autonomous

Fewer than 50% of people with life-limiting illnesses actually have documented goals of care, and < 24% has documented care

Many older people with diabetes could benefit from combining palliative care into their usual diabetes care as function changes and the burden of medicines and complications

They also benefit from the support to document advance care directives much earlier

Good communication is essential to support older people to make informed decisions and to document their values and care preferences

Many people want to die at home, but most older people with multiple comorbidities die in

Identify whether unstable disease is likely to be remediable or likely to continue to deteriorate

than it currently occurs [36, 37]

reduce life expectancy

decisions

goals [36]

increase

and goals

hospital [39]

relatively constant

Recognize/diagnose dying

and progress to the terminal stage Treat or implement end-of-life care

Important information for older people with diabetes to document in their ACD are the things they value and give meaning and purpose to their life (values directive), the care they *want* to receive and the care they *do not want* to receive [40]. Generally the ACD does not have to be completed all at once. Older people need time to think about the issue and discuss them with relevant people. So, start the conversation and follow up at a later time It is important to check the persons' care preferences as part of ongoing care because they can change over time. Values remain

The term life-limiting illness (LLI) describes people at high risk of dying in the subsequent 12 months. Many people admitted to hospitals and ICUs have a life-limiting illness. The Gold Standards Framework Proactive Indicator [33] outlines indicators of life-limiting illnesses for cancer, chronic obstructive pulmonary disease, heart failure, renal disease, neurological

diseases, frailty, dementia and stroke Diabetes is not specifically mentioned in the GSF. It does mention organ failure, kidney disease, dementia and multimorbidity. Diabetes is the main underlying cause of renal disease, cardiovascular disease and some forms of cancer, frailty and dementia. Therefore, it is often unclear what 'initial' disease commenced the underlying pathological changes, which could be an inflammatory process related to

obesity

care [34]

End-of-life care

Advance care directive (ACD)

Palliative care The aim of palliative care is to improve the

deteriorating, terminal [38]

used to develop and ACD

care preference [40]

distressing symptoms

quality of life, relieve suffering and manage

Palliative care involves symptom management, prognostication, advance care planning and transition to the dying/terminal stage [36] Palliative care can be used at any time and can complement usual diabetes care. Palliative care should be commenced early for maximum benefit to archive these aims [3, 31]. Early palliative care also increases satisfaction with

The last 12 months of life and includes imminent death in a few hours or days [2, 30, 33] Four phases are described: stable, unstable,

Advance care planning (ACP) is the process

ACD is a document that clearly describes an individual's values and the type of treatment they want if they are not capable of deciding for themselves and guides their medical treatment decision-maker and clinicians to make decision on their behalf that accord with their values and

ACDs are often first documented when the individual has a rapid response team (RRT) call to assess sudden deterioration [41, 42] It is important to consider cultural and religious conventions when discussing ACDs. These differ among cultures and within cultures and influence laws and regulations and the way individual's view end of life and ACDs

*Explanation of the terms life-limiting illness, palliative care, end-of-life care and advance care directives.*

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**Table 1.**

*Strategies to enhance conversations about palliative and end-of-life care among older people with diabetes, families and clinicians [40, 49, 64, 65].*

and often their families as well as organizational culture and personal experience [31] and individual tolerance of uncertainty [45]. Some degree of uncertainty occurs in nearly every aspect of health care and influence clinician and patient outcomes. Types of uncertainty include disease, therapeutic (risk and benefit) and prognosis [46].

Informed shared decision-making requires the individual to understand their illness, their treatment options and prognosis. Clinicians may not be comfortable disclosing their uncertainty to the individual [22, 46] and may refer them for a second opinion, admit them to hospital and/or order a barrage of diagnostic investigations [47]. These actions may or may not be indicated/warranted.

Sudden, unexpected death occurs in ~ 25% of deaths [2, 20]; however, diabetes-related deaths are often multifactorial, which makes it more difficult to predict life expectancy. A number of changes and well-defined patterns accompany functional decline to the end of life. These patterns are described in a series of disease trajectories [43, 44]. Prognostic indicators, include the Gold Standards Framework Proactive Identification Guidance (PIG) [35], life expectancy and risk calculators, the Diabetes Complications Severity Index (DCSI) [47], Cardiovascular risk tools and life expectancy calculators. These tools and calculators can help health professionals tailor care with the individual and start conversations about advance care planning.

Some experts recommend using absolute risk to decide which people are most likely to benefit from treatment because it considers the whole person and their individual determinates of risk [48]. These tools do not predict death. They are a guide to self-care education and care planning.

General indicators described in the GSF that indicate palliative care could be beneficial include:


In addition, a range of diabetes-related factors associated with reduced life were identified in a targeted literature review [49–51] and include:


**115**

include:

longer life.

*Diabetes and Palliative Care: A Framework to Help Clinicians Proactively Plan...*

• Glucose variability (fluctuation between high and low blood glucose levels)

• Multimorbidity: 80% of people 80 years and older have an average of 3.6

• Severe hypoglycaemia [56–58] especially in older people and those on sulphonylureas or insulin and those with hypoglycaemic unawareness, including

• Comorbid depression [62]: it is important to recognize and explore suicide ideation; suicide is twice as common in older people, and depressive symptoms are present in 80% of people > aged 74 who commit suicide. The severity of

This information and other prognostic indicators can be used independently or together to *guide* discussions with people with diabetes about advance care planning, their ACD and when to initiate palliative care. Documenting and ACD are part

Uncertainty occurs in all areas of health care, not just palliative and end-of-life care. A number of strategies can help clinicians reduce decisional uncertainty. These

• Acknowledging their uncertainty to themselves, colleagues, the individual and their family [46]. Not acknowledging uncertainty leads to further uncertainty and other problems. Acknowledging it can help build rapport and trust with

• Accepting that death is normal and being able to recognize common disease patterns and their consequences that compromise life expectancy, signs of deterioration and signs that death is approaching. Guidance concerning these issues is described in the GSF [33], Murtagh et al. [31] and a suite of three tailored versions of information for older people with diabetes, family carers and clinicians [64].

• Understanding that many people choose comfort and quality of life over a

care planning with the individual older person and relevant others.

• Being able to recognize deterioration beyond the clinical parameters used in acute care. For example, using the GSF, which recommends asking the 'surprise question': 'would I be surprised if this person died soon?' The answer, yes or no, can guide treatment decisions, including whether and when to implement palliative care and aspects of usual diabetes care such as HbA1c, blood glucose monitoring and other metabolic parameters and when to initiate conversations about advance

*DOI: http://dx.doi.org/10.5772/intechopen.83534*

morbidities [54, 55].

• Polypharmacy [61].

dementia.

and rapid reduction in HbA1c [52–54].

• Lower limb and foot disease [59, 60].

of holistic, evidence-based quality care.

the individual and their family.

• Cancer contributes to increased mortality in T2DM.

depression is a determinant of suicidal ideation [63].

**4.1 Strategies that clinicians use to reduce prognostic uncertainty**

*Diabetes and Palliative Care: A Framework to Help Clinicians Proactively Plan... DOI: http://dx.doi.org/10.5772/intechopen.83534*


*Palliative Care*

and prognosis [46].

beneficial include:

sarcopenia.

home or bereavement.

• Long duration of diabetes.

to fourfold [50].

and often their families as well as organizational culture and personal experience [31] and individual tolerance of uncertainty [45]. Some degree of uncertainty occurs in nearly every aspect of health care and influence clinician and patient outcomes. Types of uncertainty include disease, therapeutic (risk and benefit)

Informed shared decision-making requires the individual to understand their illness, their treatment options and prognosis. Clinicians may not be comfortable disclosing their uncertainty to the individual [22, 46] and may refer them for a second opinion, admit them to hospital and/or order a barrage of diagnostic investiga-

Some experts recommend using absolute risk to decide which people are most likely to benefit from treatment because it considers the whole person and their individual determinates of risk [48]. These tools do not predict death. They are a

General indicators described in the GSF that indicate palliative care could be

Sudden, unexpected death occurs in ~ 25% of deaths [2, 20]; however, diabetes-related deaths are often multifactorial, which makes it more difficult to predict life expectancy. A number of changes and well-defined patterns accompany functional decline to the end of life. These patterns are described in a series of disease trajectories [43, 44]. Prognostic indicators, include the Gold Standards Framework Proactive Identification Guidance (PIG) [35], life expectancy and risk calculators, the Diabetes Complications Severity Index (DCSI) [47], Cardiovascular risk tools and life expectancy calculators. These tools and calculators can help health professionals tailor care with the individual and start

tions [47]. These actions may or may not be indicated/warranted.

conversations about advance care planning.

guide to self-care education and care planning.

• Symptoms that are difficult to manage.

• The person becomes less responsive to treatment.

• > 10 Kg progressive weight loss in the preceding 6 months.

identified in a targeted literature review [49–51] and include:

• Serum albumin <25 g/L—other guidance suggests <5% in people with

• More than 50% have a significant life event such as a fall, admission to a care

In addition, a range of diabetes-related factors associated with reduced life were

• Macro- and microvascular complications [49]. Diabetes significantly increases the risk of all-cause and cardiovascular mortality in men and women by two-

• Person chooses not to accept active treatment.

• Decline in health and function.

• Unplanned hospital admissions.

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This information and other prognostic indicators can be used independently or together to *guide* discussions with people with diabetes about advance care planning, their ACD and when to initiate palliative care. Documenting and ACD are part of holistic, evidence-based quality care.

## **4.1 Strategies that clinicians use to reduce prognostic uncertainty**

Uncertainty occurs in all areas of health care, not just palliative and end-of-life care. A number of strategies can help clinicians reduce decisional uncertainty. These include:


These strategies show that subjective information and shared decision-making is an important part of the health assessment and risk calculations. After all, death is a very personal experience. They can help clinicians can include palliative and end-of-life care in usual diabetes clinical practice guidelines, is important.

### **4.2 Some key diabetes palliative care issues**

**Figure 1** depicts a framework for integrating diabetes and palliative and end-oflife care based on function and the chronic disease trajectory. The information can be used as a basis for developing a personalized care plan and with usual diabetes and palliative care guidelines.

Commencing palliative care does not mean usual diabetes care is abandoned. All care must be based on the best evidence. Care must be personalized and, ideally, developed in consultation with the older individual and often their family carers. People with diabetes do receive 'usual' palliative care, but it may not encompass important diabetes-specific issues that need to be considered. Specific information about these issues can be found in Dunning et al. [8] and Diabetes UK [26].

### **4.3 Managing glycaemia**

Preventing hyperglycaemia is important to prevent ketoacidosis and hyperosmolar states, both of which cause considerable discomfort and can be fatal. Likewise, preventing hypoglycaemia is imperative. It is often missed because of the changed

**117**

**Figure 1.**

*evaluated at this stage.*

*Diabetes and Palliative Care: A Framework to Help Clinicians Proactively Plan...*

*Proposed framework for integrating diabetes care with palliative care that supports function and proactive care planning. Reproduced from Dunning et al. [72] with permission. The framework has not been formally* 

*DOI: http://dx.doi.org/10.5772/intechopen.83534*


#### **Figure 1.**

*Palliative Care*

• Developing communication skills and the confidence to discuss palliative and end-of-life care. These skills increase following communication skills training [65] and include asking 'good/appropriate' questions, listening to the answers and using relevant probing and clarifying questions when relevant; see **Table 2**.

• Understanding that ACP is an iterative process that can be achieved using

• Consulting the individual's ACD. ACDs are an outcome of advance care planning; they inform clinicians and families about the individual's values and preferences and enable medical treatment decision-makers, family and clinicians to make decisions consistent with the person's values when they are

• Asking about subjective life expectancy such as will to live is a strong predictor

• Asking questions about self-rated *future* health, e.g. in 5 years, and adjusting

• Considering the health and care burden of informal/family carers: their subjective care burden is linked to various health outcomes for the care recipient

• Considering relevant policies, regulations and legislation that apply where the

These strategies show that subjective information and shared decision-making

**Figure 1** depicts a framework for integrating diabetes and palliative and end-oflife care based on function and the chronic disease trajectory. The information can be used as a basis for developing a personalized care plan and with usual diabetes

Commencing palliative care does not mean usual diabetes care is abandoned. All care must be based on the best evidence. Care must be personalized and, ideally, developed in consultation with the older individual and often their family carers. People with diabetes do receive 'usual' palliative care, but it may not encompass important diabetes-specific issues that need to be considered. Specific information about these issues can be found in Dunning et al. [8] and

Preventing hyperglycaemia is important to prevent ketoacidosis and hyperosmolar states, both of which cause considerable discomfort and can be fatal. Likewise, preventing hypoglycaemia is imperative. It is often missed because of the changed

is an important part of the health assessment and risk calculations. After all, death is a very personal experience. They can help clinicians can include palliative and end-of-life care in usual diabetes clinical practice guidelines, is important.

structured ACP communication tools and processes.

unable to decide for themselves [40, 64, 65].

for known mortality risk factors [67].

including mortality risk [67, 68].

**4.2 Some key diabetes palliative care issues**

clinician works [51, 66].

and palliative care guidelines.

Diabetes UK [26].

**4.3 Managing glycaemia**

of survival in all age groups and genders [66, 67].

**116**

*Proposed framework for integrating diabetes care with palliative care that supports function and proactive care planning. Reproduced from Dunning et al. [72] with permission. The framework has not been formally evaluated at this stage.*

symptomatology and can become chronic. Hypoglycaemia is a risk factor for frailty [69] and cardiovascular disease [70] and leads to short-term cognitive changes and dementia in the longer term.

T2DM is associated with brain aging and cognitive changes that affect memory and learning and contribute to depression in the longer term. Thus, blood glucose monitoring in a suitable regimen tailored to the medicine regimen and hypo-hyperglycaemia risk profile can provide important information about glucose variability, the medicine regimen and care needs.

#### **4.4 Managing medicines: Pharmacovigilance**

Pharmacovigilance is important and includes regular medicine reviews, stopping medicines and using non-medicine options where possible and selecting the lowest effective dose when medicines are indicated. Insulin might be a safer option than some other glucose-lowering medicines and can be used with a palliative intent, that is, to improve comfort by managing unpleasant symptoms associated with hyperglycaemia. Some medicines are diabetogenic, and it is important to diagnose hyperglycaemia caused by medicines such as glucocorticoids and manage it appropriately.

#### **4.5 Nutrition and hydration**

Undernutrition can contribute to frailty, hypoglycaemia, slow wound healing and falls and can be present in overweight individuals. Eating disorders, depression, difficulty swallowing and other causes can be present. Likewise cancer, thyroid disease and other diseases can cause weight changes. These factors highlight the value of comprehensive geriatric assessments and collaborative interdisciplinary care.

#### **4.6 Family carers**

Family carers play a vital role in the care of children and older people with diabetes by helping with diabetes self-care and other activities of daily living. They are at risk of sleep deprivation, reduced immunity, depression and unresolved bereavement after their relative dies [68]. It is important to monitor their health and provide counseling and support.

### **5. Summary**

Long-standing diabetes and associated complications significantly increase the risk of disability and frailty and reduce life expectancy. Palliative care can be used with usual diabetes care. Proactively planning for diabetes palliative care is important. Diabetes reduces life expectancy and can cause significant suffering. Considering the indicators of reducing life expectancy and implementing palliative care early into the diabetes care plan has many benefits, including reducing the suffering and the burden on the individual and family carers. Atypical symptoms associated with older age can make it difficult to recognize deterioration and underlying causes.

People admitted to hospital near their end of life are more likely to receive burdensome treatment such as admission to intensive care, resuscitation, dialysis and blood transfusions that are often futile [45, 46] and distressing for the individual and their families. Health professionals have an important role in helping older people with diabetes to plan for predictable changes in health status and to initiate timely palliative and EOL care to prevent unnecessary admissions to hospital and/or

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**Author details**

Trisha Dunning1

Deakin University, Australia

Australia

provided the original work is properly cited.

\* and Peter Martin<sup>2</sup>

The authors have no conflicts of interest to declare.

The authors conceived and wrote the chapter.

© 2019 The Author(s). Licensee IntechOpen. This chapter is distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/ by/3.0), which permits unrestricted use, distribution, and reproduction in any medium,

1 Chair in Nursing Centre for Quality and Patient Safety Research, Barwon Health Partnership, School of Nursing and Midwifery, Deakin University, Geelong,

2 Regional Director of Palliative Care Barwon Health, Chair pEACH, Professor of Communication and End of Life Care, The Geelong Hospital, School of Medicine

\*Address all correspondence to: trisha.dunning@barwonhealth.org.au

*Diabetes and Palliative Care: A Framework to Help Clinicians Proactively Plan...*

invasive intensive care that have little benefit, even when it prolongs life, and may not accord with the individual's core values. It is difficult for health professionals and family to make care decisions when the individual's values and wishes are not

The authors acknowledge the older people with diabetes and their families and health professionals who served on research advisory groups for their research. The Diabetes Australia Research Program funded the research that enabled them to develop a suite of information to help older people with diabetes, family members and clinicians initiate discussions about palliative and end-of-life care. It is refer-

*DOI: http://dx.doi.org/10.5772/intechopen.83534*

known, documented and communicated.

**Acknowledgements**

enced in the chapter.

**Conflicts of interest**

**Author contribution**

*Diabetes and Palliative Care: A Framework to Help Clinicians Proactively Plan... DOI: http://dx.doi.org/10.5772/intechopen.83534*

invasive intensive care that have little benefit, even when it prolongs life, and may not accord with the individual's core values. It is difficult for health professionals and family to make care decisions when the individual's values and wishes are not known, documented and communicated.
