When a person with diabetes is near the end of life, care will focus on managing symptoms. It's important to keep them comfortable and to look out for signs of high blood glucose (hyperglycaemia) and low blood glucose (hypoglycaemia).
Get support from the person's GP or specialist diabetes team, especially if the person needs medicines, like high dose corticosteroids, that may affect glucose levels.
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Key points
- Involve the person with diabetes and the people important to them in decisions and any changes to treatment.
- Treatment focuses on reducing the uncomfortable symptoms of hyperglycaemia (high blood glucose levels), rather than getting to target levels.
- Blood glucose levels above target range will not cause diabetes complications in someone at the end of their life. But be alert for possible diabetic ketoacidosis (DKA).
- Do not withhold insulin without advice from a member of the person's specialist diabetes team.
- People taking insulin may need to reduce their doses. This is particularly true at mealtimes if their appetite and food intake changes.
- It is usually not appropriate to restrict someone's diet at the end of life.
What is diabetes?
Diabetes is a serious condition. It occurs when the amount of glucose (sugar) in a person's blood is too high. This could be because:
- their body does not produce enough insulin or
- the insulin it produces is not effective or
- their body does not produce any insulin at all.
Is diabetes a terminal illness?
While diabetes is a serious condition, it is not a terminal illness. People with diabetes have a greater risk of dying earlier than people without diabetes. But only a small number of deaths of people with diabetes is directly because of their diabetes.
People with diabetes who are near the end of life, have specific care needs focused on managing symptoms.
Types of diabetes
There are two main types of diabetes: type 1 and type 2. They're different conditions and are treated and managed differently.
If you're providing end of life care, it's important to know what type of diabetes the person has.
What is type 1 diabetes?
Type 1 diabetes is a serious, autoimmune condition. It happens when a person's body cannot make the hormone insulin which controls blood glucose.
About 8% of people with diabetes in the UK have type 1 diabetes. We do not know what causes it. There is currently nothing anyone can do to prevent it.
What is type 2 diabetes?
Type 2 diabetes is the most common type of diabetes. It happens when a person's blood glucose levels are too high. This could be because:
- their body is not producing enough insulin or
- the insulin does not work properly or
- a combination of these two things.
There are risk factors for developing type 2 diabetes. Some of these are things we cannot change. These include getting older, a person's ethnicity or having a family history of diabetes. Living with obesity and limited physical activity may also mean that someone has a greater risk of developing type 2 diabetes.
The number of older people with type 2 diabetes is increasing. Worldwide, nearly half of all people with type 2 diabetes are aged 65 or older.
People with Black African, African Caribbean and South Asian ethnicity have a higher risk of developing type 2 diabetes from a younger age.
Treating diabetes
Treatment for someone living with type 1 or type 2 diabetes aims to keep their blood glucose levels as close to the non-diabetes range as possible.
Type 1 diabetes is always treated with insulin via injections or an insulin pump. Treatment for type 2 diabetes may include changes to diet, physical activity, weight loss, oral medications, as well as insulin and non-insulin injectable medications.
If a person's diabetes is not treated, or if their glucose levels are too high for a long period of time, all types of diabetes can lead to serious complications.
However, when someone is near the end of life, diabetes treatment focuses on managing symptoms rather than avoiding long term complications.
Symptoms of diabetes
People with diabetes develop symptoms if their blood glucose levels are too high (hyperglycaemia, or hypers), or too low (hypoglycaemia, or hypos).
It's important to prevent someone at the end of life from developing uncomfortable symptoms because of their diabetes. You can do this by knowing what signs to look out for that indicate high or low blood glucose levels.
Symptoms of high blood glucose levels (hyperglycaemia, or hypers)
Signs or symptoms of high blood glucose levels include:
- thirst
- frequent urination, especially at night
- weakness or tiredness
- headaches
- blurred vision
- infections, such as thrush or recurring bladder or skin infections
- weight loss
- feeling sick.
Possible causes of high blood glucose levels near end of life
There are reasons why someone with diabetes who is receiving end of life care could develop high blood glucose levels. These include:
- A missed dose of diabetes medication.
- They have had more carbohydrates than usual.
- Stress, infection and illness.
- They are on medication known to raise blood glucose levels such as corticosteroids and immune checkpoint inhibitors. See medication and diabetes at the end of life below.
- They are dehydrated.
Symptoms of low blood glucose levels (hypoglycaemia, or hypos)
Signs or symptoms of low blood glucose levels include:
- trembling or feeling shaky
- sweating
- feeling tired
- dizziness
- feeling anxious or irritable
- looking more pale − this can be harder to see on people with darker skin tones whose skin may look greyish and you might see pallor on their palms, lips, gums, tongue or nail beds
- tingling lips
- palpitations and a fast pulse
- feeling hungry
- blurred vision
- feeling tearful
- lack of concentration
- night sweats.
Possible causes of low blood glucose levels near end of life
Someone near the end of life may develop signs or symptoms of low blood glucose levels if they are eating less and still taking their usual medications. It could also be a result of reducing or stopping medication that had raised their blood glucose levels, like steroids.
If someone is showing signs of low blood glucose levels, you will need to have their diabetes medication reviewed.
How is diabetes managed towards the end of life?
Keeping blood glucose levels in target range is less of a priority towards the end of life. Instead, the person's diabetes management will focus on avoiding the symptoms of hyperglycaemia (high blood glucose levels) and diabetic ketoacidosis (DKA).
Managing diabetes at the end of life also aims to avoid low blood glucose levels (hypoglycaemia).
Hypos need to be treated straightaway. If you notice these signs, speak to the person's diabetes specialist team. Hypos are uncomfortable and, for those receiving end of life care, they should be avoided. If someone is having hypos towards the end of life, it's important to review their medication. Speak to their GP or their diabetes specialist team.
It is usually not appropriate to restrict the diet of someone who is near to the end of life.
Type 1 diabetes end of life care
Insulin should never be stopped completely in someone with type 1 diabetes. They still need both insulin and blood glucose testing so that high blood glucose levels do not make them uncomfortable.
For someone with type 1 diabetes, going without insulin can cause a serious condition called diabetic ketoacidosis (DKA). It can be life-threatening and very distressing for the person and their family. Speak to the person's specialist diabetes team if you are concerned about this.
If the person is not eating, or they've lost a significant amount of weight, they are likely to need less insulin. Background or long-acting insulin should never be stopped, but it may be acceptable to reduce or omit the fast-acting insulin they would have had with their meal.
Speak to the person's GP or their specialist diabetes team for support with managing their insulin dosing.
Type 2 diabetes end of life care
Managing type 2 diabetes at the end of life is different to managing type 1 diabetes.
Ask the person's GP or their specialist diabetes team to review their diabetes medications and for advice on whether they still need to have blood glucose testing. It may not cause an issue if you reduce the frequency of blood glucose tests and stop their diabetes medication. Raised blood glucose levels at this time will not cause complications.
However, very high blood glucose levels can make someone very uncomfortable and must be avoided. People with type 2 diabetes can be at risk of developing DKA. But very high blood glucose levels (often above 40mmol/L) can also lead to a condition known as hyperosmolar hyperglycaemic state (HHS). This may develop over a course of many weeks, often because of a combination of infection and dehydration.
Medication and diabetes at the end of life
The person with diabetes may be taking medications which may affect their blood glucose levels. Their diabetes specialist team or GP can advise on how to manage medications to keep blood glucose levels in a comfortable range.
High dose steroids and diabetes
Near the end of life, people will often be prescribed high dose corticosteroids such as dexamethasone to reduce inflammation, to relieve pain or reduce pressure from tumours. Some corticosteroids can cause blood glucose levels to rise because they can affect how the body responds to insulin.
If steroids are used for a short time, a person is less likely to need treatment for new diabetes or have their usual diabetes treatment changed. This is because as the dose of steroids reduce, so will their effect on insulin resistance.
If steroids are used in high doses or for a long period of time, blood glucose levels should be monitored. If the person's blood glucose levels are rising, you should contact their GP to see if they may need treatment for their hyperglycaemia. If glucose levels have risen, it's important to keep monitoring the levels for the duration of the steroids.
People without a previous diagnosis of diabetes who need long-term steroids may benefit from diabetes medication if they have symptomatic hyperglycemia. This will depend on the person's needs and the dose of steroids they're taking. Their GP should review any changes made to diabetes medication if the steroid dose is reduced.
Remember that aiming for normal blood glucose levels can be unrealistic in people receiving end of life care as they may eat less, or the amount they eat can vary, from day to day.
The emotional impact of changing someone's diabetes treatment
Diabetes can be an added cause of stress for people who are nearing the end of their life, as well as for the people important to them. The issues and challenges of diabetes can make this emotional time harder to manage.
If the patient has had diabetes for a long time, they and the people important to them may worry about the effects of changing treatment, or of relaxing blood glucose targets.
It's important to discuss glucose management with them and the people close to them. You can explain the reasons behind any changes in treatment and, for as long as possible, support them in their diabetes self-management.
Getting support for diabetes end of life care
People living with diabetes get support for their diabetes from their GP and other members of a specialist diabetes team.
If you are providing end of life care for someone with diabetes, you can get support from the relevant people in this team who usually provide the person's diabetes care.
This team may include the following people:
- GP
- diabetes specialist nurse (DSN)
- practice nurse from the GP surgery
- diabetes specialist (diabetologist or endocrinologist)
- registered dietician
- registered podiatrist
- eye doctor (opthalmologist)
- pharmacist
- psychologist.
