Caring for someone with diabetes at the end of life

Please be aware - this information is for healthcare professionals

Diabetes is a serious life-long health condition. It occurs when the amount of glucose (sugar) in the blood is too high because the body can’t use it properly. If left untreated, high blood glucose levels can cause serious health complications.

There are two main types of diabetes: Type 1 and Type 2. They’re different conditions and need to be treated and managed differently.

Type 1 diabetes is an autoimmune condition where the beta cells (insulin-producing cells) in the pancreas are destroyed. The cause is partly genetic, and Type 1 diabetes is not preventable or related to lifestyle factors.

Type 2 diabetes is a condition where glucose levels rise due to the body’s insulin not working properly (insulin resistance), or because the body produces less insulin, or a combination of both. Type 2 diabetes is associated with lifestyle factors such as obesity and physical inactivity, as well as genetic factors such as family history and ethnicity.

What are the treatments for diabetes?

Type 1 diabetes is treated with insulin via injections or an insulin pump.

Type 2 diabetes treatment can include changes to diet, physical activity, weight loss (if indicated), oral medications, as well as insulin and non-insulin injectable medications.

If a person has Type 2 diabetes and goes on to require insulin this does not mean they now have Type 1 diabetes. 

The general aim of treatment of both Type 1 and Type 2 diabetes is to maintain blood glucose levels as close to the non-diabetes range as possible. This reduces the risk of the person developing diabetes-related complications. Diabetes UK   has more information about target blood glucose levels. At the end of life, it becomes less important to keep to the target levels.

People with diabetes are cared for by their GP, and members of a specialist diabetes team. The team may include a diabetes specialist nurse (DSN), dietitian, diabetologist, community/district nurse and podiatrist, among others. This team can provide integrated care and give advice on decisions related to medications, changes to diet, prevention and treatment of diabetes complications, and overall care.

How is diabetes managed towards the end of life?

If left untreated, or if glucose levels are elevated for a long period of time, all types of diabetes can lead to serious complications. Towards the end of life, however, keeping blood glucose levels in target range becomes less of a priority. The management of diabetes will change to focus on avoiding the uncomfortable symptoms of hyperglycaemia (high blood glucose levels). Symptoms include thirst, frequent urination, tiredness and infections such as thrush.

Diabetes management also aims to avoid the symptoms of hypoglycaemia (low blood glucose levels) which may occur if the person is eating less. Common symptoms include trembling, sweating, feeling anxious or irritable, looking pale, palpitations and a fast pulse, feeling hungry and blurred sight. Diabetes UK   has more information about symptoms of hypoglycaemia.

Dietary restrictions are unlikely to be appropriate for people at the end of life.

Type 1 diabetes

People with Type 1 diabetes will continue to need insulin and blood glucose testing in order to stop high blood glucose levels causing discomfort. As their appetite reduces, a person with Type 1 diabetes will need less insulin, usually less mealtime insulin.

For someone with type 1 diabetes, withholding their insulin is likely to cause a serious condition called diabetic ketoacidosis (DKA). This is likely to be very distressing for the patient and their family. Speak to the patient’s specialist diabetes team if this is a concern. Diabetes UK   has more information about diabetic ketoacidosis (DKA).

Type 2 diabetes

For people with Type 2 diabetes at the end of life, the management will be different. The need for diabetes medications and/or blood glucose testing may be reviewed. Stopping the diabetes medication, and reducing the frequency of blood glucose tests may not cause an issue.

Allowing blood glucose levels to be elevated at this time will not cause complications. However, very high blood glucose levels can make someone very uncomfortable and that should be avoided as mentioned above.

In people with Type 2 diabetes, very high blood glucose levels (usually over 40mmol/L) can lead to a condition known as hyperosmolar hyperglycaemic state (HHS). This occurs over a course of many weeks often through a combination of infection, and dehydration. The diabetes specialist team will monitor for it. Diabetes UK   has more information about hyperosmolar hyperglycaemic state (HHS).

Explaining to the patient and their family the reasons behind the changes in treatment is important. This may help them to understand why any changes are being made. If the patient has had diabetes for a long time, they or their family may be apprehensive about the effects of altering treatment, or the idea of relaxing blood glucose targets.

Medication and diabetes at the end of life

The person you’re caring for may be taking medications, some of which may have an effect on blood glucose levels. Their diabetes specialist team can advise on how to manage medications to keep blood glucose levels in a comfortable range.

High dose steroids and diabetes

Often, high dose corticosteroids such as dexamethasone are prescribed to relieve pain or pressure from tumours in people towards the end stages of life. Some corticosteroids can cause blood glucose levels to rise because they don’t allow the body to use insulin properly.

When steroids are used short term, the need for treatment is less likely because as the dose of steroids reduce, so too will their effect on insulin resistance. If steroids are used in high doses or for a long period of time, it is important to monitor blood glucose levels. If an anomaly is detected, it should be reported to the GP and a corrective dose of insulin may be given if necessary. It is important to keep monitoring the levels over a short period of time as a random ‘high’ can occur. The patient’s specialist diabetes team will supervise and check for this.

For people who require long-term steroids, an appropriate diabetes medication may be beneficial. The regime will depend on the person’s needs and the dose of steroids being taken. If the steroid dose reduces, it may be necessary to review the insulin dose too. Remember that aiming for normal blood glucose levels can be unrealistic in people receiving end of life care as dietary intake varies or reduces.

As a health and social care professional, what special considerations should I make in my approach to providing care for someone with diabetes?

Don’t worry about getting perfect blood glucose levels. Blood glucose levels that are in the target range reduce the risk of complications later in life – this is not a priority for someone in a palliative/end of life setting.

Recognising the symptoms of high blood glucose (hyperglycaemia) will be helpful. They include:

  • thirst
  • needing to go to the toilet a lot
  • increased tiredness
  • infections such as thrush.

If you notice these, you should speak to the patient’s diabetes specialist team. They will be able to provide advice on how hyperglycaemia is best managed to keep the person comfortable.

You should also be aware of the symptoms of low blood glucose (hypoglycaemia). People have different symptoms but common ones include:

  • trembling
  • sweating
  • feeling anxious or irritable
  • looking pale
  • palpitations and a fast pulse
  • feeling hungry
  • blurred sight.

If you notice these, speak to the patient’s diabetes specialist team.

This content has been provided by Diabetes UK  .

Diabetes UK logo

Points to remember

  • Always involve the patient and family in decision-making and changes to treatment
  • Blood glucose levels above target range will not cause diabetes complications in someone at the end of their life
  • Treatment focuses on reducing the uncomfortable symptoms of hyperglycaemia (high blood glucose levels), rather than attaining target levels
  • People taking insulin may need to reduce their doses, especially around mealtimes if their appetite and food intake changes
  • Dietary restrictions are not appropriate at the end of life
  • Do not withhold insulin without advice. 

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