Substance use and palliative care

Some people living with a terminal illness use substances, including alcohol and other drugs. This can be problematic or harmful to others. Knowing about the patient's substance use and their needs, will help you to provide them with palliative care in the way that is best for them.

What do we mean by substance use?

Substance use is sometimes called substance misuse, substance use disorder or problematic use of substances. It is an umbrella term that includes:

• taking illegal drugs
• taking prescribed medicines in a way that could be harmful to someone's health, for example taking very large doses
• excessive or harmful use of alcohol
• being dependent on drugs, sometimes called addiction.

Addiction is when a substance forms a central part of a person's life. Some people will get withdrawal symptoms if they stop taking the substance and should seek help before stopping.

Harmful drinking is when a person has serious social or health problems resulting from their alcohol use. This includes depression, liver failure, acute pancreatitis, or having an accident when they're drunk. It can also include debt problems, estrangement from family, insecure housing and loss of employment.

On this page, we will look at how using opioids (such as heroin, morphine and buprenorphine) and drinking alcohol affect people who need palliative or end of life care.

People may use other substances as well like cannabis or cocaine – in fact people with a substance use problem usually use several substances. With the person's permission, speak to their GP or contact a specialist substance use service for advice on other substances and their side effects.

Who is affected by substance use?

Anyone can be affected by substance use. People are more likely to use drugs and alcohol if:

• they or someone close to them has used drugs and alcohol before
• they or someone close to them has mental illness
• they are from an area of high social deprivation
• they are experiencing homelessness
• they have experienced trauma or abuse.

Patterns of substance use are different across the UK and vary from year to year, but cannabis is the most commonly used drug in all four nations. While opioids are used less commonly, they can cause significant health problems. Other commonly used drugs in the UK include cocaine, ecstasy, diazepam and benzodiazepines.

In terms of alcohol, around one in four adults in England and Scotland regularly drink over the recommended guidelines. Problematic alcohol use is the biggest risk factor for death, ill health and disability among 15-49 year olds in the UK, and the fifth biggest risk factor across all ages.

How does substance use affect someone towards end of life?

People who use alcohol and other drugs problematically may have additional needs, wishes and preferences. They might also face barriers to getting the care they need because of it. Being aware of the particular challenges that can affect them, can help you to provide the right care for their needs.

These are the challenges that can affect some people with a terminal illness who use alcohol and drugs problematically:

• Being unable to access health and social care services where substances are prohibited.
• Having additional health problems caused directly by the use of alcohol and other drugs. For example, having a blood-borne virus, like HIV or hepatitis, acquired through injecting drug use.
• Being estranged from family and not having family and friends around to support them at end of life.
• Having friends and family members who use substances. They might divert the person's medication or behave abusively towards them and/or care staff.
• Resisting health or social care for fear of being judged or stigmatised by professionals involved in their care.
• Difficulty managing symptoms if the drugs or alcohol they use interact with their medicines.
• Refusing strong pain medication if they have had problems with substances in the past. For example, not wanting to take opioid-based medication for fear of relapse.
• Seeing themselves as 'not worthy' of end of life care and support because of shame and self-blame for their condition.

Specialist palliative care and substance use teams should work together to provide the best care. This may need to involve adult social care services.

Alcohol

Excessive alcohol use can increase a person's risk of certain terminal illnesses, including:

• cancers – commonly mouth, throat, bowel, stomach, liver and breast cancer
• heart disease and stroke
• liver disease.

Low mood and depression are also common in people who use alcohol excessively. Someone may feel particularly guilty, sad or angry if their drinking has caused, or contributed to, their illness.

For people with a history of problematic alcohol use, it's important to consider two alcohol-specific features that might worsen their condition - alcohol withdrawal and Wernicke’s encephalopathy (see below).

Alcohol withdrawal

If someone is physically dependent on alcohol and suddenly stops or drastically reduces their drinking, they may develop withdrawal symptoms. These can be mild, moderate or severe and can begin between 4 and 24 hours after the person's last drink.

• Mild signs and symptoms include headache, tremor, sweating, irritability, anxiety, fast heart rate and high blood pressure.
• Moderate signs and symptoms include worsening mild symptoms and agitation.
• Severe signs and symptoms include worsening moderate symptoms, as well as confusion, seizures, hallucinations, and increased temperature.

For these reasons and for patient safety, you should seek medical advice immediately if a person who is dependent on alcohol can no longer drink alcohol because of their health status. Otherwise, there is a risk of misdiagnosis and trying to 'treat' the wrong health condition or symptoms.

If you suspect someone is withdrawing from alcohol, ask for medical help as you may need to facilitate alcohol use or actively (and quickly) manage their withdrawal symptoms to avoid them being in pain and discomfort, and to reduce the risk of misdiagnosis.

Wernicke's encephalopathy

Alcohol dependence can cause Wernicke’s encephalopathy. This is a disease of the brain which causes confusion, ataxia (lack of coordination), seizures, eye problems and even unconsciousness. It’s caused by having low thiamine (vitamin B1) levels which is common in people who are dependent on alcohol. If you suspect someone has Wernicke’s encephalopathy, ask for medical help immediately. If it’s not treated properly, it can cause death or long-term confusion and memory problems (Korsakoff’s psychosis).

Opioids

Opioids such as morphine, buprenorphine and diamorphine are commonly used to manage pain in people living with a terminal illness. Some people worry about becoming addicted to opioids but this is very unlikely when they’re used properly for pain management.

For people who are already misusing opioids, managing pain can be difficult as:

• they can build up tolerance to opioids and require higher than normal doses
• they are more likely to become dependent on opioids
• they are at greater risk of side effects if they are also using alcohol or other drugs.

People with a history of using opioids problematically may be reluctant to take them when prescribed, even at the end of life, to manage their pain. Their fear of relapse and withdrawal can be overwhelming.

People who smoke heroin are more likely to develop chronic obstructive pulmonary disorder (COPD) at a younger age than most people who have COPD. Individuals who smoke heroin may need extra support to manage breathlessness.

People who inject drugs such as heroin or other opioids are at risk of getting blood-borne viruses, for example HIV and hepatitis. If their veins are damaged and it's hard to access them, it may be that they are the best people to find a vein themselves as they will know which ones are still usable. Professionals should work with specialists in these areas to provide the best care when these conditions have been identified.

You should get advice from palliative care specialists, and substance use specialists to make sure their symptoms are managed in the safest way. Collaborative care for a person is likely to offer the best level of care at end of life.

It’s important to find out about the person's social circumstances and living situation by talking to them. Sometimes opioids prescribed for the person may be sold on to others or stolen from them to be used or sold to others. This is called diversion. However, the person may be being exploited and abused for their medication so talking to them and finding a solution in discussion with them is the ideal approach. If this is not possible, prescribers can reduce the risk of this happening by only prescribing short courses of opioids and storing them in locked boxes in the person's home. It is also important to supervise consumption of prescribed doses in case the person was using a lower dose than has now been prescribed. This can happen, in particular, with methadone, which may have been prescribed at a higher dose at first contact/admission.

Cannabis-based products

Some people use cannabis-based products to help relieve symptoms. They might be legal, prescribed or illegal in the UK. Find out more about cannabis-based product use from the NHS website.   It's important to check your organisation's policy or national guidance on cannabis-based product use. They should include information about recording or reporting cannabis use, and what is appropriate and legal for you to do when supporting someone.

How can I support someone with substance use?

If you are caring for someone who uses substances problematically, these are the ways you can support them:

• Be compassionate and non-judgemental.
• Be aware that that many people use drugs and alcohol to help them cope with past trauma, difficult feelings or circumstances.
• Respect their confidentiality and do not disclose information about them without their consent.
• Make sure they are receiving the best specialist care for them, which might include support from substance use teams as well as other palliative care services.
• Offer support to family and friends who do much of the care giving and need support to help them care appropriately for both the person as well as themselves.

You can find more information in the good practice guideline: Supporting people with substance abuse problems at end of life.

How can I support family and friends?

Problematic substance use can affect relationships and cause harm to others. Palliative and end of life care should support the person with a terminal illness and those around them too, including partners, family and friends. If you’re concerned that substance use is causing harm to people close to the person, you can signpost them to support organisations, such as Adfam  . Adfam has information and support for family members of people with addiction, as well as a directory of local support services. In Scotland, Scottish Families Affected by Alcohol and Drugs   offers support and information. However, the family may just need some words of comfort from health and social care staff and the opportunity to ask questions about their relative's health. Sometimes little gestures go a very long way.

Useful resources

Good practice guideline: Supporting people with substance abuse problems at end of life .

Addiction NI   offers information and counselling for people with addiction in Northern Ireland.

We are with you   (formerly Addaction) offers free, confidential support with alcohol, drugs or mental health from one of their local services.

Wales Drug and Alcohol Helpline   is a support service people in Wales can access at any time and also has a directory of local support services.

FRANK   has information about drugs, and links to support services across the UK.

Adfam   has information and support for family members of people who use drugs and aclohol, as well as a directory of local support services in England, Scotland and Wales.

Scottish Families Affected by Alcohol and Drugs   has information and support for family members of people who use drugs and alcohol in Scotland.

NICE Clinical Knowledge Summary: Alcohol – problem drinking  

NICE Clinical Knowledge Summary: Opioid dependence  

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Disclaimer

This information is not intended to replace any training, national or local guidelines, or advice from other health or social care professionals. 

The Palliative Care Knowledge Zone is not intended for use by people living with a terminal illness or their family and friends, who should access our information for the public.