Key Points
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Describe a consistent high quality approach towards end of life diabetes care
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Provide a series of quality standards
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Inform the wider healthcare workforce about the key issues in end of life diabetes care that provides a platform for sensitive, appropriate, and supportive care
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Abbreviations
Introduction
This guideline is primarily aimed at all those within the health and social care workforce who care for people living with diabetes and their families during the last year of life.
Early identification of people who are likely to be in their last year(s) of life is important. This allows the opportunity for important conversations to take place between the person and those important to them. It also allows open and honest conversations about what matters to the person, and opportunity for them to express their views and priorities about future care. These conversations may be initiated by the person, those important to them or their clinicians in any care setting.
The management of diabetes at the end of life
The care of the dying person with diabetes is challenging, encompassing changes to:
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Glycaemic targets
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Individual and carer expectation
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Reducing risk of hyperglycaemia and hypoglycaemia
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Managing the effects of other medications such as Corticosteroids, Octreotide
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Tailoring of diabetes medications
This will depend on the phase of illness. Planning for end-of-life care in people with diabetes is often seen as a direct choice between treating or withdrawal of treatment for diabetes; in practice caring for the dying individual is more complex.
Principles of care at the end of life
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Ensure that effective symptom control is provided during the end of life
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Tailor glucose-lowering therapy and monitoring, minimise diabetes-related adverse treatment effects
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Avoid metabolic de-compensation and diabetes related emergencies:
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Frequent and unnecessary hypoglycaemia
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Diabetic ketoacidosis
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Hyperosmolar hyperglycaemic state
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Persistent symptomatic hyperglycaemia
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Avoid foot complications and pressure sores in frail, bed-bound individuals with diabetes
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Avoid symptomatic clinical dehydration towards end of life
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There can be flexibility in allowing patients to eat and drink calorie dense or sugary foods they may have previously avoided.
Glucose targets
There is no specific evidence about glucose targets or HbA1c to aim for at the end of life and these are more of a guidance alongside symptom control.
If the patient is taking glucose lowering therapies and/or insulin there may be risk of hypoglycaemia. People on no pharmacological therapy or Metformin alone should not be at risk of hypoglycaemia. Those on DPP4 inhibitors are at low risk of hypoglycaemia.
This should be discussed with the patient and family, where possible, to provide reassurance and explanation, as previous targets may have been much tighter in the past.
De-Intensification of Therapies
The process of de-intensifying therapy should be proactive and based on the likely benefits of continuing with the specific treatment versus the risk of harm from adverse drug effects and their consequences, such as hypoglycaemia. It is important that agreement is sought between clinicians involved and the person at end of life and his/her family. This should come only after a full explanation is provided by the clinician and the reasoning involved.
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Insulin should be maintained in those with type 1 diabetes, as withdrawing insulin treatment before the person has died could lead to diabetic ketoacidosis (DKA). A shift to a simpler regimen, such as once daily basal insulin, may be preferential especially when oral intake is poor.
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In those on insulin with type 2 diabetes, efforts should be made to withdraw insulin completely whilst again ensuring there is no significant deterioration in glucose control.
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For those on other glucose-lowering therapy, there should be a monitored but active process of reducing or withdrawing treatments such as Glucagon-like peptide-1 receptor agonists (GLP-1 RAs) because of their adverse effects on appetite and associated weight loss and/or Sodium-glucose co-transporter-2 (SGLT2) inhibitors because of their adverse effects on fluid balance and the risk of urogenital infections.
Medication
We have adopted four stages (A - D from the Gold Standards Framework 5) within the end of life scenario for considering the use of glucose-lowering therapies and other relevant drug therapies: these are colour coded in line with other nationally recognised stages of end of life care:
Continuous subcutaneous insulin infusion (Insulin Pump Treatment) and CGM
The use of insulin pumps by people with type 1 diabetes is becoming increasingly common. The majority of users are competent in managing their diabetes, relying on the use of a CGM plus capillary blood glucose tests and adjusting bolus doses according to the carbohydrate content of their food. The technology offers a flexibility to respond to the changing insulin requirements at the end of life, providing the individual or carers have the skills and support to use it. Early involvement of the Diabetes Specialist Pump Team is essential. A different approach to glucose targets may be appropriate, with an emphasis on safety and avoidance of hypoglycaemia rather than achieving tight control. A range of basal insulin profiles should be made available in anticipation of changing insulin requirements due to weight loss (dose reduction), Or if they are using a Hybrid Closed Loop (HCL) system, then the target or other individual setting may require softening. Corticosteroid treatment is likely to cause a rise in the blood glucose levels and require an increase in the basal rate. Continuous glucose monitoring will provide a low glucose alarm or low glucose insulin suspend function in conjunction with their pump (HCL). This is an additional safety feature that reduces the risk of severe hypoglycaemia in people who have hypoglycaemia unawareness. Individuals with such technology should continue to use it providing that they and their carers are prepared to support. While frequent alarms in the low normal glucose range may cause undue distress, the insulin suspend feature may provide reassurance. Even in the last days of life when the individual is eating little or nothing, and is no longer able to manage their own pump, it can be used to deliver their basal insulin requirements. If at any time the individual wishes to stop using their insulin pump, it should be removed one hour after a subcutaneous dose of basal insulin has been given (see insulin pump guidelines to look at converting to insulin pens). The pump should be stored securely and returned to the diabetes team if no longer required.
https://guidelines.fhft.nhs.uk/Diabetes_and_Endocrinology-CSII_(Insulin_Pump)_Management_in_Hospitalised_Patients
CGM will be used by the majority of patients with Type 1 diabetes and also a small number of people with type 2 diabetes. Individuals using CGM as a more convenient method to manage their diabetes. This employs a pre-calibrated sensor that measures the tissue glucose concentration repeatedly. Results, latest glucose concentration and trend direction and alarms, can be obtained from a single sensor. One indication for this technology is when a third party is managing diabetes for an individual, it need not be stopped at the end of life, providing those using it have been trained. This will help to limit the number of finger prick tests required and provide alarms to alert to hypoglycaemia.
Green
B. Green: "Benefits" unstable / advanced disease - months prognosis
At this stage the aim is to keep drug interventions to a minimum that will control symptoms.
Insulin alone is a simpler option than combinations of tablets and insulin
Insulin regimens should be simplified if possible. There may be an increased need for support from carers.
If moving from twice daily to once daily insulin, the starting dose of long-acting insulin such as Glargine or Degludec should be less than the total dose of twice daily isophane analogue long acting insulin or pre-mixed insulin and 75% of total previous dose is recommended
Once daily insulin is a simpler option if carers are involved and/or appetite is changing
Yellow
C. Yellow: "Continuing care" deteriorating weeks prognosis
Individuals may require support from the diabetes team at this time, with intensive support for dose adjustments due to changes in appetite. Managing diabetes can be an added stress at an emotional time for individuals and carers. Relaxing targets for control may seem like ‘giving up” for some while others may view managing diabetes in addition to their terminal illness as “pointless”.
Red
D. Red: "Terminal care" - days prognosis
Ideally by this stage diabetes treatment has been minimised so that few changes are needed in the last days of life. If the stage is reached where the individual is bed bound, semi-comatose, no longer able to take tablets, no longer able to eat and only able to take sips of fluid. The Flowchart for Diabetes at End of Life in this guideline, describes how to manage diabetes in the dying individual. It can be reassuring for relatives and carers to know that this additional plan of care is being followed and that the diabetes is being managed differently rather than being “ignored”. The flowchart has been devised to minimise symptoms of diabetes and keep invasive testing to the minimum needed to achieve that aim
Key Features of Care for Vulnerable Groups with Diabetes at End of Life.
A number of common features emerge that reflect the major challenges of managing vulnerable special populations at end of life. Four important management areas are:
Recognition that vulnerability leads to difficulties in diabetes self-care and self-medication, poor adherence to treatment instructions, communication of an individual’s needs particularly in those with cognitive impairment, a deterioration in glucose control, and need for carer and/or nursing input. Residency in a care home exacerbates these risks dramatically.
An acceptance that the place of care may not always be at home or in agreement with the known wishes of a person entering the end-of-life phase (unless this is dealt with in an advance care plan) since the onset of severe frailty or dementia may influence the clinician’s choice of best place of care. Diabetes management requirements should not influence choice of place of care.
Glucose Management and glucose lowering medications – In general, the usual HbA1c target of 53-64 mmol/ mol (7.0-8.0%) is appropriate but a HbA1c target up to 70 mmol/mol (8.5%) may be appropriate in those who are frail or have dementia. In those at end of life, the glycaemic target is predominantly to avoid symptomatic hyperglycaemia.
Nutrition – despite the association of diabetes with obesity, each of the named vulnerable conditions/situations above can be associated with swallowing difficulties, weight loss, diminished nutritional status, vulnerability to infection, poor adherence to nutritional planning and increased needs for nutritional support
Nutrition
Changes in meal size or frequency can have a significant impact on glucose levels. In addition, individuals with diabetes may also be taking multiple tablets which can be difficult to swallow due to size or number, requiring a review of tablet doses and frequency. Metformin, in particular, can cause gastrointestinal symptoms and worsen appetite in vulnerable individuals. Insulin-treated individuals will need a review of doses and possibly regimen if timing and size of meals change. Avoidance of dietary sugars may no longer be appropriate as food choices become limited and therapy may have to be adjusted around the altered dietary choices.
Dietetic input is useful in reinforcing food choices appropriate to the individual’s overall condition rather than food choices purely relevant to their diabetes.
Metformin is available in a liquid solution for individuals not coping with tablets.
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Avoid sulphonylurea preparations (Gliclazide, Glipizide or Glimepiride) if small meals are being taken or patient is not eating
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Repaglinide can be useful for individuals managing small regular meals with dose adjusted according to intake. Repaglinide should only be taken with food
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Low dose insulin may be the only option for individuals whose glucose levels are high despite a significantly reduced oral intake
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Individuals on insulin with poor intake will need lower doses
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Strict avoidance of added sugars is not necessary when food choices are already limited and can lead to distress.
For Enteral feeding advice please see clinical guidelines.
https://guidelines.fhft.nhs.uk/Diabetes_and_Endocrinology-Enteral_Feeding_of_Patients_with_Diabetes_in_Hospital
Advance care planning
For people with diabetes at end of life it is important that all are involved in effective and focused planning with their family and carers, and multidisciplinary care team to document their wishes relating to decisions about their future treatments. Such a plan is often triggered by a marked deterioration in the individual’s functional status or the development of medical complications likely to lead to the individual entering a terminal phase.
An Advance Decision to Refuse Treatment (ADRT) represents a legally binding written decision an individual with mental capacity can make now to refuse a specific type of treatment at some time in the future. It requires both the individual and a witness to sign the document. It is helpful because it informs all those involved in the individual’s care e.g. family, carers, health professionals, that the individual has a specific wish to refuse specific treatments in the future and this becomes essential if that individual loses the ability to communicate effectively. To be valid this document must state the words” even if my life is at risk”. The treatment category must be named in the ADRT and it is wise that all relevant circumstances and situations where treatment should not be given are clearly indicated, e.g. cardiopulmonary resuscitation (CPR). A clinician should assist this process where appropriate. A charity called Compassion in Dying has an advance decision form that individuals can complete online or in ink by hand. It is available at: https://compassionindying.org.uk/choose-a-wayto-make-an-advance-decision-living-will/
ReSPECT (Recommended Summary Plan for Emergency Care and Treatment) is a process for developing personalised recommendations for a person's clinical care and treatment so that their wishes are respected when they are unable to participate in decision making.
https://www.resus.org.uk/respect
Hypoglycaemia
In a dying person it is important to recognise the signs and symptoms of hypoglycaemia and then to:
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Treat appropriately
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Consider reducing insulin and/ or sulphonylureas
Hypoglycaemia can be troublesome at any time in individuals with diabetes on glucose-lowering therapies but at the end of life, every effort should be made to avoid this side-effect of treatment. The following information may help to reduce hypoglycaemia:
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Agree a care plan and glucose targets
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Be cautious when anorexia develops
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Tailor insulin therapy and avoid insulin dose errors
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Other factors/steps that should be considered are:
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Rationalisation of glucose-lowering treatment for diabetes
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Involve an experienced dietitian to assess the impact of nutritional deficits
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Early identification of risk factors for hypoglycaemia
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Treat pain effectively - Assess impact of weight loss
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Assess influence of opiates/other pain killers on appetite
Individuals at greater risk of hypoglycaemia include anyone on insulin, sulphonylurea (e.g. Gliclazide, Glipizide, Glimepiride) and prandial regulator users (Nataglinide, Repaglinide). Individuals who are at particular high risk include those who also have one or more of the following:
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Poor appetite/erratic eating pattern
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Weight loss
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Renal deterioration
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Liver impairment/carcinoma
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Autonomic neuropathy (gastroparesis)
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Nausea and vomiting
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Previous gastrectomy
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Frailty
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Memory problems
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Oropharynegeal and oesophageal tumours
See flow chart below (or refer to hypo flow chart on the ward hypo boxes)
For Hypoglycaemia advice please see clinical guidelines.
https://guidelines.fhft.nhs.uk/Diabetes_and_Endocrinology-Hypoglycaemia_in_Adults_With_or_Without_Diabetes
Steroid therapy
Frequently used in palliative care for symptom control, usually as Dexamethasone or Prednisolone. Regardless of the indication, the impact of steroids on glucose control can cause additional hyperglycaemic symptoms. Steroids can also cause “steroid induced” diabetes in those not previously diagnosed with the condition. The use of Dexamethasone has become more common place in the treatment of people diagnosed with the COVID 19 virus. The impact of a new “diabetes” diagnosis in those already living with a palliative diagnosis can be very difficult to cope with. Once daily steroid therapy taken in the morning tends to cause a late afternoon or early evening rise in glucose levels which can be managed by a morning sulphonylurea (e.g. Gliclazide) or morning isophane insulin (e.g. Insulatard, Humulin I or Insuman Basal).
For further advice on the management of steroids please see clinical guidelines
https://guidelines.fhft.nhs.uk/Diabetes_and_Endocrinology-Glucocorticoid-induced_Hyperglycaemia
Key messages with blood glucose monitoring
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Keep tests to a minimum. It may be necessary to perform some tests to exclude symptomatic hyperglycaemia
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If not already monitoring blood glucose levels, test once daily to ascertain suggested targets of 6-15 mmol is achieved
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If the individual remains on insulin therapy, ensure the diabetes specialist team are involved and the management plan is agreed
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If steroids are discontinued glucose lowering treatments such as sulphonylureas or insulin will need to be reduced
Sick-Day management
Rules are for use in individuals who may be unwell as a result of the side effects of chemotherapy or have an inter-current illness. A number of common precautions are often needed to minimise the development of a number of frequently occurring acute metabolic complications during the end-of-life phase, and these are indicated below
Appendix 1: Algorithm for the last days of life
Appendix 2: Acute Hypoglycaemia management with/without Diabetes
Full version control record
This guideline has been registered with the Trust. However, clinical guidelines are guidelines only. The interpretation and application of clinical guidelines will remain the responsibility of the individual clinician. If in doubt, contact a senior colleague or expert. Caution is advised when using guidelines after the review date.
This guideline is for use in Frimley Health NHS Foundation Trust hospitals only. Any use outside this location will not be supported by the Trust and will be at the risk of the individual using it.
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