Addiction at end of life

Please be aware - this information is for healthcare professionals

Some people living with a terminal illness have drug and alcohol addictions. Many are smokers. If a person has been, or still is, dependent on drugs or alcohol, healthcare professionals should try to understand the impact this can have on their needs at the end of their life.

The patient and their family may be dealing with the stress and grief of a terminal illness. And they may also be dealing with the emotional distress that addiction has caused. Some patients may not want their family to know they have an addiction. You can use sensitive questioning and the care management plan to make sure confidentiality stays in place. 

The symptoms of withdrawal from some drugs and alcohol can be similar to those of other conditions, such as delirium and terminal restlessness. So it’s important to understand the patient’s medical history. It might help to speak to their carer, family or friends if it’s appropriate. Make sure you follow confidentiality guidelines.

Caring for someone living with a terminal illness and addiction can be challenging. You may need to co-ordinate care with other services and get specialist advice. This could be from a specialist substance misuse services.

What are the signs of addiction and substance misuse?

It can be hard to recognise addiction and substance misuse in patients living with a terminal illness. It’s sometimes harder because the symptoms can be similar to symptoms of other conditions.  Assessing a person for addiction and substance misuse needs to be done by someone who is properly trained.  If you have any concerns about the patient, or their friends or family, speak to their GP, district nurse or specialist nurse.

The impact of smoking and nicotine withdrawal

Stopping smoking can be extremely difficult for regular smokers. Sometimes the patient may need to stop smoking. This could be because they are in an environment where people are not able to smoke, such as a hospital or hospice. Or because the patient’s condition means they have to stop. They may find sudden withdrawal from nicotine stressful and unpleasant.

Withdrawal can make someone crave cigarettes. It can make them feel restless, irritable, frustrated and tired. They may also become agitated. Nicotine replacement therapy, such as lozenges, gum or patches, can help to reduce withdrawal symptoms in heavy smokers. The patient may need counselling support too.

Make sure the patient is aware of the danger of smoking near oxygen . This is especially important if they are using oxygen therapy in their own home. Oxygen supply companies or the local fire service should carry out a formal risk assessment. But it’s also important to make sure that you, the patient, and family members know the procedures for using oxygen safely. If you are unsure, speak to your manager or the district nurse.

The impact of alcohol dependency 

Some people you care for will be alcohol dependent. If someone who is dependent on alcohol stops drinking suddenly, they may develop alcohol withdrawal syndrome. 

If the patient is withdrawing from alcohol, symptoms usually start between 6 and 12 hours after the patient’s last drink. Symptoms can vary from mild to severe.

Mild symptoms of alcohol withdrawal include:

• tiredness
• tremors
• nausea
• anxiety
• headache.

More severe symptoms of alcohol withdrawal include:

• auditory and visual hallucinations
• agitation
• seizures
• confusion.

If the patient has any symptoms of alcohol withdrawal, speak to their doctor or GP as soon as possible.

Heavy drinkers are at risk of developing Wernicke’s encephalopathy, a neurological disorder that is caused by thiamine (vitamin B1) deficiency. This can be caused by alcohol consumption. It is a medical emergency, which can cause permanent brain damage if it’s not treated.

Symptoms of Wernicke’s encephalopathy include:

• confusion
• nausea
• vomiting
• fatigue
• weakness
• apathy.

If the person develops these symptoms, and they have a history of alcohol misuse, get medical help straightaway.

People who are dependent on alcohol may also have greater pain and difficult, uncomfortable or laboured breathing (dyspnoea) poorer sleep and poorer general wellbeing than other people.

Treatment for alcohol dependency

The patient’s alcohol intake may have reduced gradually over time, as their condition has deteriorated. If the patient is still able to swallow, then the best way to prevent withdrawal symptoms is usually to give the patient alcohol in moderation. If someone has been a long term alcoholic, you will probably not be able to change their condition now. And withholding alcohol may cause more stress and conflict than is necessary. Withholding alcohol can be dangerous and if left untreated, it can be life-threatening. You should always seek medical advice before withholding alcohol.

Alcohol withdrawal can also be treated with medicines such as benzodiazepines, carbamazepine or chlormethiazole. This can be done based on whether the person has symptoms and how severe they are.

The impact of drug addiction

People can become addicted to several different groups of drugs, including opiates and depressants. Sudden withdrawal from these can cause a range of symptoms. Many of the symptoms are similar to the symptoms of delirium [link] and terminal restlessness [link]. These include insomnia, agitation and anxiety.

People who use cannabis are not usually dependent on it. But if they are heavy users and they stop suddenly, they can feel anxious and irritable and have difficulty sleeping.

How does addiction affect how pain is managed?

Some people may be concerned about the risk of becoming addicted to opiate painkillers. People who have overcome drug addiction may worry about becoming addicted again. You can reassure the patient and family that when opioid painkillers are used for pain management, addiction is very unlikely. If the patient is in the last few weeks or months of life, then this is likely to be less of a worry.

If someone is dependent on drugs they still need adequate pain relief. This is particularly important for people with opiate dependency. Someone with opiate dependency can build up tolerance to drugs and is likely to need more pain relief than others, sometimes significantly more. They may also have a lower threshold for pain and may need pain relief at an earlier stage.

People who are dependent on drugs are sometimes seen as difficult to care for. It can be easy for health professionals to make a moral judgement, such as the view that someone’s lifestyle has contributed to their condition. Do not let personal views get in the way of the care you provide. Be empathetic, talk to the patient and their family, and build effective relationships. This will help you to have a clear understanding of their needs and their level of pain, which will help you provide effective pain relief.

The person may already take opiate medication to manage their dependence, and this may need to be added to or changed. Large doses of opiate painkillers can cause sedation and respiratory depression . So you should regularly assess the patient’s breathing and level of consciousness. If the person is having treatment from the local drug service, it is advisable to make a joint management plan.

How can I support the family of someone who is addicted to alcohol or drugs?

Addiction can change family relationships. For some, the fact that a family member is an addict may have been a secret until now.

Some people with a terminal illness may have feelings of shame about their addiction. They may feel responsible for their illness, or as if they have failed. Building a respectful, trusting, non–judgemental relationship with the patient and their family, and providing person-centred care, can help you give the right level of support.

If the patient is being cared for at home, you may need to take more steps to make sure that opioid painkillers are used safely and appropriately. Friends or relatives who are also dependent on drugs may bring them into the home and try to give them to the patient. This can be difficult to manage, It may be helpful to talk early on with the patient and their family about what you will need to do if this happens. If a person takes illicit drugs as well as their prescribed opioids, opioid toxicity is a risk. If you notice signs of over-sedation, contact the GP for a review. Hospital admission may be needed in some cases.

Addiction and the homeless

Many people who are homeless are affected by alcohol and substance misuse. They may be living with a terminal illness directly caused by homelessness. The patient may have complex needs, be affected by stigma and discrimination, and find it hard to engage with health professionals and traditional models of care. They may not access end of life care or services because of concerns about how their substance misuse will be managed. If the patient is homeless, you may need to co-ordinate care with other services, such as a hostel, and get specialist advice to manage substance misuse.

Points to remember

  • The patient may not disclose or discuss their addiction and substance misuse, which can make it difficult to assess. You may need to seek specialist advice

  • Symptoms of withdrawal can be very similar to those of delirium and changed mental state

  • Alcohol and drug addiction can significantly affect family relationships

  • The approach to caring for someone with an addiction should be non-judgemental and respectful.

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