TABLE 1

Palliative, Terminal, and End-of-Life Care and Suggestions Regarding When and How to Implement Each

DefinitionWhen to ImplementImplementation Strategies
Palliative care focuses on relieving suffering and maintaining function, independence, and quality of life and can be started at any time in the diabetes disease trajectory and at any age (15,18,19). For people with diabetes, its aims including managing pain and enhancing quality of life by assessing and treating physical and emotional suffering and preparing patients and families for eventual death (40).Early implementation reduces pain and suffering, improves function and quality of life, and may increase longevity (3). This can be achieved by diabetes clinicians, or they can refer patients to specialty palliative care services where they exist. Consider starting or referring for palliative care for people with diabetes at every consultation, with significant change in health status, during annual complication screening, and especially for people with the following conditions, which are associated with increased risk of further morbidity and mortality:• Consider holding a case conference to discuss the patient’s health status with the patient and relevant care providers and family members to introduce the benefits of palliative care. Prepare for the consultation by having all relevant information available, preparing the patient and family for the case conference, and creating a quiet, respectful, private environment. Consider any sensory deficits such as low vision or hearing issues that can affect the patient’s capacity to participate in the discussion or read written information.
• Long duration of diabetes with consistently high A1C and blood glucose (4)• Multiple comorbidities (e.g., renal, liver, cardiovascular, and gastrointestinal problems) (41,42)• Cancer associated with diabetes (43)• Polypharmacy and unnecessary medications with questionable benefits in palliative and end-of-life situations (44,45)• Low A1C or hypoglycemia (46)• Failure to thrive, with nutrition deficits, weight loss, fatigue, and mental and social consequences (5)• Sarcopenia or frailty: slow timed up-and-go test and slow gait speed (45,47)• Cognitive changes or dementia• Depression• Falls (45)• Frequent admissions to the hospital or ED• Loneliness and isolation (48,49)• Admission to an aged care home• Undertake a comprehensive assessment (8), including a medication review and reconciliation and/or referral for a comprehensive geriatric and/or palliative care assessment. Stop any unnecessary medications and those that are contraindicated or no longer confer benefit. Do not start medications or interventions unlikely to benefit the patient in his or her lifetime. Simplify the regimen for remaining medications. Avoid using sliding-scale insulin; it may be safer to establish a basal-bolus insulin regimen (5,13). Ask about the use of complementary medicines and therapies; some can interact with conventional medicines.• Comprehensive geriatric assessments and appropriate care strategies, including rehabilitation, can enable the patient to return home after a hospital admission (45). Undertake relevant risk assessments to help determine care needs (e.g., risk of falls, hypoglycemia, pain, medicine-related adverse events, or functional and self-care capacity) (5).• Decide on metabolic (i.e., blood glucose and A1C) target ranges and other care goals considering the patient’s safety, values, goals, care preferences, and life expectancy. A generally safe blood glucose ranges is 6–11 mmol/L (108–198 mg/dL) and A1C up to 8%, but A1C may not be particularly useful toward the end of life (4,5,13,23).• Develop a personalized sick day recognition and care plan and a personalized hypoglycemia recognition and management plan with the patient and family.• Undertake regular general health assessments that encompass height and weight, diet, activity, oral/dental health, mental health, smoking, alcohol intake, and vaccination status and screenings for cancer (e.g., prostate and breast cancer). Consider mental health and risk of loneliness and depression.• Encourage healthy eating and consider erratic eating and nutritional deficiencies and how they affect other care decisions, including the glucose-lowering medication regimen.• Encourage activity such as tai chi, smoking cessation, and limiting alcohol intake. Calcium and vitamins D, B12, and folate might be required.• Educate the patient’s family and other carers to recognize and act on signs of deterioration, bearing in mind that symptoms of heart attack, hypoglycemia, and infection are often atypical.• Encourage the patient to prepare an ACP, a will, power of attorney, and other relevant documents or revise current plans if necessary.• Document the discussion and communicate it to other relevant care providers and the patient and family.
End-of-life care is provided to people who are likely to die in the next 12 months (12,15,18). For these patients, preventing complications is no longer relevant, but managing the symptoms associated with existing complications is still relevant. End-of-life care can be delivered in a person’s home, a hospice, or a hospital. It often spans four related but nonsequential stages: stable, unstable, deteriorating, and terminal, when death is imminent (15,37).It is difficult to predict when a person will die. People often seem to know when they are approaching the end of life. Some signs that a person could be entering the last stage of life include answering “no” to the surprise question (i.e., “Would I be surprised if this man/woman died in the next few months?”) Answering in the negative indicates that it is time to plan for the end of life (37).• Discuss the patient’s changing health status with the patient, family, and other carers if the patient agrees.
The GSF (37) recommends three main steps:1. Identify people who need palliative/end-of-life care.2. Assess and document their needs.3. Plan and deliver their care, including deciding where the person wants to die.Regularly assess the individual for indicators of decline such as:• Declining function (e.g., Comorbidity Index, Barthel Index, Karnofsky Score, Fried Frailty Scale), which leads to difficulty undertaking activities of daily living and diabetes self-care• Increasingly complex symptom and care burden and advanced disease such as stage 3 or 4 heart disease, end-stage renal failure, metastatic cancer, or leg or foot ulcers• A sentinel event such as a serious fall, severe hypoglycemia, or hyperglycemia leading to diabetic ketoacidosis or hyperglycemic hyperosmolar state• Several unplanned admissions to the hospital or ED• Progressive weight loss >10% in the past 6 months after assessing for treatable causes such as undiagnosed cancer and thyroid disease, or weight loss >5% if the person has sarcopenia (50)• Serum albumin <25 g/L• Self-reported poor health especially when asking about future rather than current health• Develop an ACP if the patient does not have one or review the existing plan to ensure that it is still consistent with the patient’s values, goals, and preferences. Ensure that it is available in the medical record and communicated to relevant people. Values rarely change over time, but care preferences can and do.• Make sure the ACP accompanies the patient during important care transitions within and among health services. If the person elects to die at home, ensure that integrated team care is provided and the patient’s primary care provider and palliative care nurses are involved.• Proactively plan for necessary care transitions but avoid unnecessary admissions to the hospital, ED, or intensive care according to the patient’s ACP and GSF (37) status.• Consider different formulations of necessary medicines if the patient has dysphagia. Dental problems can contribute to swallowing problems, but medicines may not need to be crushed for these people (50). Extended-release medicines and some other formulations should not be crushed.• Inform relatives about the patient’s condition; even an expected death can be shocking and distressing. The death of a partner increases the risk an acute cardiovascular event and infection in the subsequent weeks in the surviving partner (51). Carer stress predicts admission to an aged care home (52).
Terminal care is provided in the last few days or hours of life and can be delivered at home, in a hospice, or in a hospital (15,18,19).When the person is actively dying• Enact the patient’s ACP. If there is no plan, consult with relatives and make decisions likely to match the patient’s values.
• Ensure that pain and distressing symptoms are managed. Withdraw diabetes treatment such as medications and blood glucose monitoring when there are more risks than benefits.
• Institute bereavement therapy where it is available and/or counsel and support family and relatives.
• After death, clinician debriefing might be indicated in some cases. Provide bereavement care for the family. Complete relevant documentation such as a death certificate and arrange for the care of the body, considering religious and cultural needs.
  • ACP, advance care plan; ED, emergency department; GSF, Gold Standard Framework. Adapted from ref. 38.