Individuals with current or past substance use disorder (People who use drugs – PWUD) can have particularly complex needs when faced with a palliative diagnosis. They often have difficult social circumstances including high levels of deprivation, inadequate housing and limited social support. Mental ill-health and a history of trauma or abuse is common. For a variety of reasons, health care services can struggle to engage PWUD. Late presentation of advanced disease is common, pharmacology of symptom control can be complex, and continuity of care difficult. With a high level of substance use in Scotland and an ageing cohort of PWUD, palliative care for this population is of growing importance. It is essential to offer empathetic, joined-up, non-judgemental care.

 

Assessment

It is preferable to identify PWUD with palliative needs at an early stage and offer referral to Specialist Palliative Care (SPC). The SPICT® tool can be used to screen for palliative care needs. The individual should have a key coordinating professional overseeing their substance use such as Substance Use/Addictions Services (SUS) or their General Practitioner (GP).

Clear and compassionate communication is required to encourage full disclosure of substance use.  Reassurance should be offered that the information is required to provide tailored treatment. Concerns around substance withdrawal can feed 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 during joint assessment by SPC 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.

Management

Treat holistically; manage physical and psychosocial symptoms and offer support to the individual 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 provided for relevant services. In some circumstances, full multidisciplinary involvement/case conference may be of value.

Support the individual to complete an Anticipatory Care Plan (ACP). Cardiopulmonary Resuscitation (CPR) and the appointment of a Power of Attorney should be considered. If there is no next of kin, offer referral to the Advocacy Service. The ACP should be shared, with consent, with relevant parties. The GP should add information to the Key Information Summary (KIS)/electronic Palliative Care Summary (ePCS).

Offer referral to financial support services such as Macmillan Benefits and complete a DS1500/ SR1 medical report form where appropriate. A BASRiS (Benefits Assessment for Special Rules in Scotland) may be required. 

Medication

Careful liaison between the individual and care teams should allow appropriate prescribing and safe management of opioid medication for symptom control. Be mindful that under prescribing could influence the individual to seek non-prescribed substances. There may be reluctance by either the individual or the Health Care Professional (HCP) 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 SPC is encouraged. There should be regular clinical review.

SUS may aim to stabilise MAT rather than reduce. MAT should continue as advised by SUS and should not routinely be titrated for palliative symptom control. Treat the MAT as a separate prescription that is 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 an individual has is variable and difficult to predict.

Practice points

  • The management of PWUD with a palliative diagnosis can be complex
  • Early identification of needs and referral to SPC and SUS is recommended along with close involvement of GPs.
  • A collaborative approach should be adopted by HCPs.
  • There is a risk of under-prescribing analgesia/anxiolytics for PWUD who have a degree of tolerance.
  • Management of individuals and their families should be compassionate, holistic and non-judgemental.

Resources

Screening tools

SPICT:  https://www.spict.org.uk/the-spict/

References

Audit Scotland. Drug and alcohol services in Scotland 2009 [cited 2022 Apr 14. Available from: https://www.audit-scotland.gov.uk/docs/health/2009/nr_090326_drugs_alcohol.pdf.

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.

British Pain Society. Pain and substance misuse: improving the patient experience 2007 [2022 Apr 14]. Available from: https://www.britishpainsociety.org/static/uploads/resources/misuse_0307_v13_FINAL.pdf.

Electronic Medicines Compendium (emc). Buvidal 8 mg prolonged-release solution for injection 2022 [cited 2022 Apr 14. Available from: https://www.medicines.org.uk/emc/product/9705/smpc.

Galvani S, Wright S, Witham G. Good practice guidance: Supporting people with substance problems at the end of life 2019 [2022 Apr 14]. Available from: https://endoflifecaresubstanceuse.files.wordpress.com/2019/05/good-practice-guidance-supporting-people-with-substance-problems-at-the-end-of-life.pdf.

Himan S, Walker G, Sykes J, Rowcroft Hospice. Palliative care prescribing for patients who are substance misusers 2015 [2022 Apr 14]. Available from: https://rowcrofthospice.org.uk/wp-content/uploads/Rowcroft-Hospice-Palliative-Care-Prescribing-For-Substance-Misusers.pdf.

Neerkin J, Cheung C, Stirling C. Guidelines for cancer pain management in substance misusers 2009 [2022 Apr 14]. Available from: https://www.palliativedrugs.com/download/100615_Substance_misuse_pain_guidlines_final.pdf.

Public Health Scotland. Scottish drug misuse database 2021 [2022 Apr 14]. Available from: https://publichealthscotland.scot/media/6315/2021-03-02-sdmd-report.pdf.