Introduction

People with current or past substance use disorder (people who use drugs) can have particularly complex palliative care needs.

Substance use is often associated with difficult circumstances including:

  • deprivation
  • inadequate housing
  • limited social support
  • mental and physical ill-health
  • adverse experiences such as trauma or abuse.

Healthcare services can struggle to engage people who use drugs. Late presentation of advanced disease is common, pharmacology of symptom control can be complex and continuity of care difficult.

In Scotland, there is:

  • a high prevalence of substance use
  • increasing polydrug use, especially benzodiazepine co-use
  • an ageing cohort of people who use drugs.

It is essential to offer empathetic, joined-up, non-judgemental palliative care for this population.

 

Summary

  • The management of people who use drugs with palliative care needs can be complex.
  • Early identification of needs and referral to specialist palliative care and substance use/drug recovery services is recommended along with close involvement of GPs.
  • A collaborative approach should be adopted by healthcare professionals.
  • Management of patients and their families should be compassionate, holistic and non-judgemental.

When a person who uses drugs is diagnosed with a palliative condition, early referral to specialist palliative care should be offered.

  • The Supportive and Palliative Care Indicators Tool (SPICT)® tool) can help identify those with  palliative care needs.  
  • The Clinical Opiate Withdrawal Scale (COWS) can help to identify opiate withdrawal.

Each person should have a key co-ordinating professional such as someone from substance use/drug recovery services (SUS) or their general practitioner (GP).

Clear and compassionate communication is required to encourage full disclosure of substance use.  Concerns around substance withdrawal can cause reluctance to be admitted to a place of care, and early reassurance on management should be offered.

A full assessment of palliative care needs and substance use should ideally be carried out jointly by specialist palliative care and the key co-ordinating professional (GP or SUS).  It is important to consider both current and previous substance use.  A full history of medication-assisted treatment (MAT), such as methadone or buprenorphine maintenance programmes, should be included.

Consider that people who use drugs may be co-using benzodiazepines or gabapentinoids (such as gabapentin or pregabalin) which may:

  • potentiate the effects of prescribed and non-prescribed substances
  • increase the risk of respiratory depression (particularly in older people)
  • result in benzodiazepine withdrawal on admission to hospital or hospice.

Non-prescribed substance use can be dependent on drug availability and new emerging substances with variable properties. Rapid Action Drug Alerts and Response (RADAR) is Scotland’s drugs early warning system. It provides up to date information on drug trends and targeted actions. 

  • Treat holistically, using a trauma informed approach https://www.traumatransformation.scot
  • Manage physical and psychosocial symptoms.
  • Offer support to the person and their loved ones.
  • Be as flexible as possible, meeting at a time and place that is suitable for them.
  • Regular review should be offered, and contact information for relevant services provided.
  • Full multidisciplinary involvement, case conference or both may be of value.

Support the person to complete a future care plan.

Offer referral to financial support services such as Macmillan Benefits and complete a BASRiS (Benefits Assessment for Special Rules in Scotland) or SR1 medical report form where appropriate. 

Careful liaison between the patient and care teams is necessary for appropriate prescribing and safe management of opioid medication for symptom control.  A risk assessment of prescribed drugs and dispensed quantities and frequencies should be agreed and documented in the patient record.

Be mindful that underprescribing could influence people to seek non-prescribed substances. There may be reluctance by either the patient or clinicians to start opioid medication because of previous experience or stigma.  Concerns should be sensitively addressed.

Symptom control should be assessed on an individual basis and discussion with specialist palliative care is encouraged. There should be regular clinical review.

 

Medication-assisted treatment (MAT)

  • Always confirm a patient’s MAT dose with pharmacy or substance use services and inform them of any inpatient admission or prescription changes.
  • Substance use services may aim to stabilise MAT rather than reduce it.
  • MAT should continue as advised by substance use services and should not routinely be titrated for palliative symptom control.
  • Treat the MAT as a separate prescription not involved in symptom management or breakthrough dose calculation.
  • Opioids should be started and titrated as they normally would for symptom control. In some circumstances, larger opioid doses may be required but the degree of tolerance is variable and difficult to predict.
  • Controlled drugs can often be dispensed in instalments several times a week alongside the patient’s usual MAT to avoid dispensing large quantities at once.
  • An NHS Scotland fact sheet comparing methadone and buprenorphine for opioid dependence provides further information.
  • Naltrexone is an opioid-receptor antagonist that may be used as an adjunct to prevent relapse in patients with a history of opioid or alcohol use disorder. It should be stopped as soon as possible in patients requiring opioid analgesia. Suboxone is an oral preparation which has a combination of buprenorphine and naloxone. The naloxone in this preparation is not active orally and is there to prevent misuse via injection. Opioid therapy introduced after discontinuation of naltrexone requires careful monitoring. There may be initial tolerance whilst naltrexone is on board followed by opioid sensitivity as it wears off. Seek specialist advice.

 

Specific considerations for methadone MAT

  • Methadone is usually given as an oral liquid 1mg/1ml for MAT.
  • Doses are taken daily and may be dispensed daily. Some patients have supervised consumption at a pharmacy.
  • Typical doses for methadone MAT are 60–120mg/day.

Missed doses

If 3 or more oral doses have been missed for any reason, contact substance use services for advice on the reintroduction dose. Usual practice is to give 50% of the previous dose and retitrate.

Loss of oral route

If the oral route is not available, methadone (10 mg/ml injectable preparation) can be administered as a continuous subcutaneous infusion (CSCI) under the guidance of specialist palliative care.  Usual practice would be conversion to a CSCI of methadone at 50% of the daily oral dose. This should be diluted in 0.9% saline and administered via a syringe pump, without any other drugs, over 24 hours.

Where CSCI is not appropriate or possible, Methadone can be administered at 50% of the daily oral dose split into twice daily subcutaneous bolus injections. Seek specialist advice if considering this.

Practice points

  • Methadone can prolong the QT interval. Care should be taken when adding other QT-prolonging drugs.
  • Methadone dose may require a 50% reduction where eGFR falls below 10 mL/min or the patient is in hepatic failure.

 

Specific considerations for buprenorphine MAT

  • Buprenorphine MAT is available in different forms including:
    • Daily sublingual dose (eg Subutex)
    • Daily sublingual combined with an opioid antagonist (eg Suboxone)
    • Daily oral lyophilisate dose (eg Espranor)
    • Depot subcutaneous injection weekly or monthly (eg Buvidal)
  • Buprenorphine MAT is typically used at higher doses (eg 12–24 mg/day) than buprenorphine in the palliative care setting which may result in antagonism when other opioids are required.
  • Antagonism is unlikely with daily doses of under 8 mg.
  • If Buprenorphine MAT is reduced or withdrawn, the opioid dose for analgesia may need to be reviewed and down-titrated as antagonism wears off.

Missed doses

Because of the long half-life, patients can miss 2–3 days of buprenorphine before they become symptomatic of withdrawal.

If 3 or more doses have been missed contact substance use services for advice on the reintroduction and dosage.

Loss of oral route

If the oral route is lost when using oral buprenorphine MAT, liaise with substance use services for advice on the most appropriate alternative opioid and route of administration.

Practice points

  • A switch from buprenorphine MAT to methadone MAT guided by substance use services could be considered if antagonism is a concern.
  • Titration of short-acting opioids to the desired analgesic effect in those treated with buprenorphine might require higher doses. This should be discussed with specialist palliative care and closely monitored.
  • Where opioid analgesia is required alongside buprenorphine MAT, opioids with a high µ opioid receptor affinity, such as fentanyl and alfentanil, may be more effective. Use of these opioids should be discussed with specialist palliative care and may be limited by local guidelines and availability.
  • Buprenorphine may require dose reduction where eGFR falls below 20 mL/min or the patient is in hepatic failure.

 

Breakthrough medication

Titration of the background opioid is preferred, with immediate-release preparations of opioids (‘breakthrough doses’)  best kept to a minimum..

The MAT dose should not be used when calculating the appropriate breakthrough dose for symptom control.

Multiple breakthrough dose usage may represent inappropriate use or undertreated pain.

 

Adjuvant therapies

Non-opioid analgesics should be considered as adjuvants when appropriate, but not as substitutes for strong opioids.

There is potential for misuse of adjuvants, especially gabapentin and pregabalin. Amitriptyline has less potential for misuse but can be harmful if taken in excess.

Non-pharmacological interventions such as radiotherapy, surgery and regional anaesthetic techniques should be considered.

 

Anxiolytics

Where clinically indicated, consider the use of benzodiazepines and seek advice from specialist palliative care. Benzodiazepines are usually introduced cautiously and titrated as required. There may be a degree of tolerance if there is a history of non-prescribed use, but this can be difficult to predict.

Where non-prescribed benzodiazepine use is confirmed or highly suspected consider regular benzodiazepine prescription for inpatients to prevent withdrawal.

Benzodiazepine withdrawal may present as insomnia, sleep disturbance, intrusive thoughts, panic attacks/anxiety, muscle stiffness, sensory disturbance, dizziness, palpitations, hallucinations, delirium or seizures.

 

Care around dying

When a person is felt to be in the last days of life, take-home naloxone intended for opioid overdose may not be appropriate as it could reduce analgesia. Discuss the potential removal or dose reduction of naloxone with substance use services/palliative care. Patients and carers may require guidance around this, including when and who to call for help. Refer to local services available.

If the oral route is lost, recently consumed substances may be replaced to avoid withdrawal. This may include the use of parenteral benzodiazepines and opioids.

Trauma, challenging social circumstances and mental ill-health frequently experienced by people who use drugs may increase the risk of terminal agitation.

 

Other considerations

The rules about medication use in certain institutions, such as prisons or homeless units may impact management. Through liaison,  solutions should be be facilitated on a case-by-case basis.

Audit Scotland. Drug and alcohol services in Scotland 2009 [cited 21 Jan 2025]. Available from: https://audit.scot/uploads/docs/report/2009/ir_090826_drug_alcohol.pdf

Benzodiazepine use – current trends: evidence review. Scottish Government, March 2022. [cited 21 Jan 2025]. Available from: https://www.gov.scot/publications/evidence-review-current-trends-benzodiazepine-use-scotland/

Beynon C, McVeigh J, Hurst A, Marr A. Older and sicker: Changing mortality of drug users in treatment in the North West of England. International Journal of Drug Policy. 2010;21(5):429-31. Available from: https://pubmed.ncbi.nlm.nih.gov/20172707/

Björnsson, M., Acharya, C., Strandgården, K. et al. Population Pharmacokinetic Analysis Supports Initiation Treatment and Bridging from Sublingual Buprenorphine to Subcutaneous Administration of a Buprenorphine Depot (CAM2038) in the Treatment of Opioid Use Disorder. Clin Pharmacokinet 62, 1427–1443 (2023). https://doi.org/10.1007/s40262-023-01288-6

British Pain Society. Pain and substance misuse: improving the patient experience 2007 [cited 21 Jan 2025]. Available from: https://www.britishpainsociety.org/static/uploads/resources/miSubstance Use/Addictions Services e_0307_v13_FINAL.pdf

Clinical Opiate Withdrawal Scale. NHS Scotland. [cited 21 Jan 2025]. Available from: https://rightdecisions.scot.nhs.uk/media/1855/clinical-opiate-withdrawal-scale-cows.pdf

Galvani S, Wright S, Witham G. Good practice guidance: Supporting people with substance problems at the end of life 2019 [cited 21 Jan 2025]. Available from: https://www.researchgate.net/publication/342260615_Supporting_people_with_substance_problems_at_the_end_of_life_Good_Practice_Guidance

Handy fact sheet. Methadone vs buprenorphine for opioid dependence. NHS Scotland. [cited 06 Mar 2025]. Available from: https://www.choiceandmedication.org/nhs24/generate/handyfactsheetmethadonevsbuprenorphineuk.pdf.

Himan S, Walker G, Sykes J, Rowcroft Hospice. Palliative care prescribing for patients who are substance misusers 2015 [cited 21 Jan 2025]. Available from: https://rowcrofthospice.org.uk/wp-content/uploads/Rowcroft-Hospice-Palliative-Care-Prescribing-For-Substance-MiSubstance Use/Addictions Services ers.pdf

Neerkin J, Cheung C, Stirling C. Guidelines for cancer pain management in substance misusers 2009 [cited 21 Jan 2025]. Available from: https://www.palliativedrugs.org/download/100615_Substance_miSubstance Use/Addictions Services e_pain_guidlines_final.pdf

Rapid Action Drug Alerts and Response (RADAR). Public Health Scotland. [cited 21 Jan 2025]. Available from: https://publichealthscotland.scot/our-areas-of-work/health-harming-commodities/substance-use/surveillance/rapid-action-drug-alerts-and-response-radar/what-is-radar/

Public Health Scotland. Scottish drug misuse database 2021 [cited 21 Jan 2025]. Available from: https://publichealthscotland.scot/media/13552/2022-05-17-sdmd-report.pdf

Scottish Intercollegiate Guidelines Network (SIGN). Use of long-acting injectable buprenorphine for opioid substitution therapy (SIGN publication no. 165). Edinburgh: SIGN 2022 [cited 06 Mar 2025]. Available from url: Long-acting buprenorphine

Supportive & Palliative Care Indicators Tool SPICT®. The University of Edinburgh. [cited 21 Jan 25]. Available from: https://www.spict.org.uk/the-spict/

Wilcock A, Howard P, Charlesworth S. Palliative Care Formulary, 8th ed. England: Pharmaceutical Press; 2022. Available from:  Medicines Complete: Palliative Care Formulary

This guideline was published in 2025. It updates the substance use guideline from 2019. The update is based on the evidence-informed expert opinion of the substance use guideline development group.

Substance use guideline development group:

Ms Linda Johnstone (Chair)

Macmillan Area Lead Pharmacist Palliative Care, NHS Lanarkshire

Dr Sineaid Bradshaw

General Practitioner with special interest in Addictions, Lothian and Edinburgh Abstinence Programme and Primary Care Facilitation Team, Wester Hailes Medical Practice

Dr Katie Clark

General Practitioner and Medical Officer, Alcohol and Drug Recovery Service, NHS Greater Glasgow and Clyde

Dr Susan Cook

Consultant in Palliative Medicine NHS Lanarkshire

Ms Amy Forsyth

Palliative Care Pharmacist, NHS Forth Valley

Dr Lucy Hetherington (main author)

Consultant in Palliative Medicine, NHS Greater Glasgow and Clyde

Dr Leza Quate

Consultant in Palliative Medicine, NHS Greater Glasgow and Clyde

Ms Joy Rafferty

Specialty Doctor in Palliative Medicine, NHS Forth Valley

Dr Graham Whyte

Consultant in Palliative Medicine, NHS Greater Glasgow and Clyde and Marie Curie Hospice Glasgow

All members of the guideline development group made declarations of interest.

 

Consultation

The draft guideline was available on the SIGN website for a month to allow all interested parties to comment.  All comments received were addressed by the guideline development group and recorded in the consultation report.

The Scottish Palliative Care Guideline group are grateful to all those who contributed to the consultation.

 

Editorial

As a final quality control check, the guideline was reviewed by an editorial group to ensure that the reviewers’ comments have been addressed adequately and that any risk of bias in the guideline development process as a whole has been minimised. The editorial group for this guideline was as follows:

Dr Roberta James

SIGN Programme Lead, Healthcare Improvement Scotland

Dr Safia Qureshi

Director of Evidence and Digital Technology, Healthcare Improvement Scotland

Dr Anna Sutherland

Chair, Scottish Palliative Care Guideline

Dr Angela Timoney

Chair of SIGN, Healthcare Improvement Scotland