‘Was it worth it?’ Intrathecal analgesia for cancer pain: A qualitative study exploring the views of family carers

Abstract

Background:

Intrathecal drug delivery is known to reduce pain in patients where conventional systemic analgesia has been ineffective or intolerable. However, there is little information regarding the effects of intrathecal drug delivery on quality of life and function in those with advanced, incurable cancer.

Aim:

Retrospective exploration of the views of bereaved carers regarding the physical and psychosocial effects of external tunnelled intrathecal drug delivery in patients with advanced incurable cancer.

Design:

Thematic analysis of qualitative interviews with carers of deceased individuals who received percutaneous external tunnelled intrathecal drug delivery as part of their pain management, within two UK centres.

Setting:

A total of 11 carers were recruited from two UK Palliative Care centres. Family carers of adult patients who had received external tunnelled intrathecal drug delivery analgesia for cancer pain and had died between 6 and 48 months prior to contact were included. Carer relatives who were considered likely to be too vulnerable or who had lodged a complaint about treatment within the recruiting department or who had been treated directly by the interviewer were excluded.

Results:

In total, 11 interviews took place. The emerging themes were (1) making the decision to have the intrathecal – relatives described desperate situations with severe pain and/or sedation, meaning that the individual would try anything; (2) timing and knowing they were having the best – an increased access to pain and palliative care services, meant carers felt everything possible was being done, making the situation more bearable; (3) was it worth it? – the success of the external tunnelled intrathecal drug delivery was judged on its ability to enable the individual to be themselves through their final illness. Side effects were often considered acceptable, if the external tunnelled intrathecal drug delivery enabled improvements in quality of life.

Conclusion:

Carers perceived external tunnelled intrathecal drug delivery as most valuable when it improved quality of life towards the end of life, by reducing pain and side effects of conventional systemic analgesia to enable individuals ‘to be themselves’. Under these circumstances, the carers judged significant side effects to be acceptable.

Keywords

Pain cancer palliative care pain management intrathecal drug delivery external tunnelled intrathecal drug delivery

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References

Smith

Staats

Deer

et al . Randomized clinical trial of an implantable drug delivery system compared with comprehensive medical management for refractory cancer pain: impact on pain, drug-related toxicity, and survival. J Clin Oncol 2002; 20(19): 4040–4049.

Krames

Lanning

RM.

Intrathecal infusional analgesia for non-malignant pain: analgesic efficacy of intrathecal opioid with or without bupivacaine. J Pain Symptom Manage 1993; 8: 539–548.

Breivik

Cherny

Collet

et al . Cancer-related pain: a Pan-European Survey of prevalence, treatment and patient attitudes. Ann Oncol 2009; 20(8): 1420–1433.

Zech

Grond

Lynch

et al . Validation of World Health Organization Guidelines for cancer pain relief: a 10 year prospective study. Pain 1995; 63(1): 65–76.

Meuser

Pietruck

Radbruch

et al . Symptoms during cancer pain treatment following WHO guidelines: a longitudinal follow up study of symptom prevalence, severity and etiology. Pain 2001; 93(3): 247–257.

De Courcy

. Interventional techniques for cancer pain management. Clin Oncol 2011; 23: 407–417.

Valeberg

Rustoen

Bjordal

et al . Self reported prevalence, etiology and characteristic of pain in oncology outpatients. Eur J Pain 2008; 12(5): 582–590.

British Pain Society. Intrathecal drug delivery for the management of pain and spasticity in adults; recommendations for best clinical practice, https://www.britishpainsociety.org/static/uploads/resources/files/itdd_2015_pro_v3.pdf

Hawley

Beddard-Huber

Grose

et al . Intrathecal infusions for intractable cancer pain: a qualitative study of the impact on a case series of patients and caregivers. Pain Res Manag 2009; 14(5): 371–379.

10.

Hynson

Aroni

Bauld

et al . Research with bereaved parents: a question of how not why. Palliat Med 2006; 20: 805–811.

11.

Braun

Clarke

Using thematic analysis in psychology. Qual Res Psychol 2006; 3: 77–101.

12.

Fried

Bradley

Towle

et al . Understanding the treatment preferences of seriously ill patients. N Engl J Med 2002; 346: 1061–1066.

13.

Bhatia

Reid

Gibbins

Goal setting for patients with palliative care needs. GM 2014; 2, https://www.gmjournal.co.uk/goal-setting-for-patients-with-palliative-care-needs

14.

Gibbins

Bhatia

Forbes

et al . What do patients with advanced incurable cancer want from the management of their pain? Palliat Med 2014; 28(1): 71–78.

15.

Cahana

Arigoni

Robert

Attitudes and beliefs regarding the role of interventional pain management at the end-of-life among caregivers: a 4-year perspective. Pain Pract 2007; 7(2): 103–109.

16.

McPherson

Addington-Hall

JM.

Evaluating palliative care: bereaved family members’ evaluations of patients’ pain, anxiety and depression. J Pain Symptom Manage 2004; 28(2): 104–114.