Community-based management of gastrointestinal symptoms at end-of-life in scleroderma using subcutaneous medication: a case report

Introduction

Systemic sclerosis (SSc) is a rare systemic autoimmune connective tissue disorder. A recent systematic review of included 46 studies reported prevalence of SSc in a meta-analysis, highlighting a pooled prevalence of 17.6 per 100,000 (95% confidence interval: 15.1, 20.5) (1). The pathogenesis of SSc is complex and incompletely understood, encompassing both environmental and genetic factors, which lead to autoimmunity, vascular dysfunction, inflammation, and fibrosis (2). A range of clinical manifestations may occur including Raynaud phenomena, skin fibrosis, interstitial lung disease, pulmonary arterial hypertension, and gastrointestinal complications including gastro-oesophageal reflux disease (GORD), and gastric antral vascular ectasia (3). Consequences of SSc include an increased risk of mortality, and impaired quality of life (4). Of disease-related causes of death, cardiorespiratory complications, including pulmonary hypertension and interstitial lung diseases are the most frequent causes (5).

Despite continual advances in our understanding of disease pathogenesis and management, a high burden of symptoms still affects people with SSc. There is a potential unmet need for palliative care services in SSc, with approximately three quarters of individuals having severe symptoms, in particular breathlessness, fatigue, and constipation, that would warrant specialist palliative care input (6). Approximately one in four individuals with SSc have severe symptoms attributable to gastro-oesophageal reflux (7). Recommended medications for the management of GORD in people with SSc include proton pump inhibitors, and H2 receptor antagonists (8,9).

For people in the terminal phase of illness, non-oral routes of medication administration, including subcutaneous, are often needed (10). Often little research is available as to the efficacy and practicality of administering medication via this route. The use of subcutaneous proton pump inhibitors has been reported in a small number of case reports and case series, predominantly in the context of malignancy, and the hospital or inpatient palliative care unit setting (11-13). We present the following case of person with advanced SSc, who received subcutaneous omeprazole in their home. We present this article in accordance with the CARE reporting checklist (available at https://apm.amegroups.com/article/view/10.21037/apm-2025-aw-131/rc).

Case presentation

A 51-year-old patient with interstitial lung disease secondary to SSc was referred to the local rural community specialist palliative care team for symptom management. Prior to moving to Aotearoa New Zealand from Australia a few months before, the patient had developed recurrent aspiration pneumonitis, GORD and gastroparesis secondary to the SSc. All medications had been ceased by the palliative team in Australia except oral omeprazole.

During the 13 months the patient was supported by the palliative care team, the gastro-intestinal symptoms were the most challenging to manage. The patient described ‘gastric storms’ which consisted of continuous retching and vomiting of large volumes over several days which would slowly dissipate. Subcutaneous metoclopramide, commonly utilised in the community setting, provided partial relief. However, omeprazole was the most effective medication despite developing hypomagnesaemia and hypophosphatemia, necessitating oral and then intravenous supplementation. At end-of-life, the patient developed significant gastro-oesophageal reflux, nausea and vomiting which prevented the use of oral medication. Metoclopramide was no longer effective at managing the symptoms. The patient wished to die at home and preferred omeprazole over other medication. Alternative medication administration methods were researched.

The main symptoms reported on entering the dying phase were retrosternal burning and ‘gastric bubbles. These ‘bubbles’ travelled from the epigastric region into the nasal cavity and caused significant distress. The patient was fearful of dying with a sensation of choking. Rapid deterioration occurred and the patient was mostly in bed. Symptoms were managed with a subcutaneous syringe driver which contained 60 mg metoclopramide, 10 mg midazolam, 10 mg morphine and 0.5 mg dexamethasone for site protection. The palliative care specialist researched the option of giving omeprazole subcutaneously through a literature search, engaging with local colleagues, and discussing the case with a palliative care pharmacist. Parenteral ranitidine was no longer available in New Zealand, and the patient had trialled famotidine unsuccessfully in recent months. The patient had always maintained that omeprazole was the most effective medication and had been taking it since the age of 18 years.

The rural specialist palliative care team had a medical specialist well-connected to colleagues from across the country. Advice and support were requested from these colleagues which helped confidence in initiating the treatment. The patient and their partner were both health professionals which aided in their understanding of the risks and benefits of the medication. Palliative care focuses on holistic needs, guided by the goals of care of the patient. The patient wished to die at home which limited the number of appropriate options for parenteral administration. The patient also requested a specific medication as this had been the most effective for them over many years. Listening to the wishes and perspectives of the patient is paramount to high quality palliative care.

It was decided to administer 40 mg omeprazole in 100 mL of normal saline over 3–4 hours in accordance with previous case reports (11,13). The team utilised a standard diluent, a single medication in the infusion, and short duration to mitigate potential safety concerns. The omeprazole infusion was commenced in the home and monitored by the patient’s partner. Both verbal and written consent were secured prior to initiating treatment due to the ‘off-license’ utilisation of the omeprazole. All interventions performed in this study were in accordance with the ethical standards of the institutional and/or national research committee(s) and with the Declaration of Helsinki and its subsequent amendments. Written informed consent was obtained from the patient’s family for publication of this case report. A copy of the written consent is available for review by the editorial office of this journal.

Before commencement of the omeprazole, the patient had vomited so frequently blood was starting to appear in the vomitus. After two days of the omeprazole infusion, the nausea, vomiting, haematemesis and dyspepsia all improved according to daily qualitative reports from patient and family. The vomiting completely stopped. The patient also reported the bloating, and generalised abdominal discomfort had improved. The patient described it as ‘total relief’. The symptoms continued to be reported by patient and family as controlled for 5 days. The infusion was then changed to alternates days with the oral medication to try and minimise the stress on the family. After 24 hours the symptoms reappeared, and the patient requested the daily omeprazole infusions again. On recommencement of the infusions the symptoms disappeared within 24 hours. After two more days the patient deteriorated further, became sleepy and confused. The symptoms were well-managed, and the patient died three days later peacefully at home with family. The cause of death was likely to have been respiratory failure secondary to the complications of SSc.

No local site reactions, erythema, induration or infusion-site pain were observed during any infusion. The family monitored the subcutaneous site for signs of inflammation and the district nurse visited daily. Electrolytes were not measured in the community during the omeprazole infusions consistent with the patient goals of care.

Discussion

British Society for Rheumatology guidelines for the management of SSc recommend optimisation of non-pharmacological measures for GORD, as well as proton pump inhibitors, and or histamine H2 receptor antagonists, for management of gastro-oesophageal reflux and dysphagia. Additionally, prokinetic dopamine antagonists may be used for gastro-oesophageal reflux and dysphagia (9). The European Alliance of Associations for Rheumatology recommends proton pump inhibitors for GORD and prokinetic drugs for dysmotility (8).

While proton pump inhibitors and H2 receptor antagonists are generally well-tolerated, acid suppression has been associated with potential adverse effects including hypomagnesaemia, vitamin B12 deficiency, and iron malabsorption (14). In the palliative care settings, however, the emphasis on symptom management and quality of life, often outweighs these longer-term risks (15).

Proton pump inhibitors may be administered via the intravenous route (16). Intravenous administration requires hospital admission, as well as nursing supervision. Subcutaneous ranitidine has been used for management of gastrointestinal symptoms in a palliative care setting (10,12). The use of ranitidine products has been suspended in several countries (17). The use of subcutaneous famotidine has been described in the literature (18). The prokinetic metoclopramide has an established role in management of nausea and vomiting in palliative care and may be administered by subcutaneous infusion (19).

Over 70% of people in Aotearoa New Zealand die outside of the hospital system (20). Determining ways of managing symptoms outside of the acute system allows people to die well in a community setting. Challenges exist in conducting randomised clinical drug trials of palliative care patients including trial design, expertise and research infrastructure (21). The reporting of evidence in the form of case reports, has the potential to help inform practice at the individual patient level (22).

Limitations of this case report include reporting outcomes from a single highly engaged and knowledgeable patient, which likely facilitated shared decision-making, monitoring and rapid titration. Availability of parenteral omeprazole and expert remote support may vary by region. These factors may limit generalisability but do provide evidence for feasible community-based options.

Subcutaneous omeprazole may be given safely and effectively at home for management of gastrointestinal symptoms at the end of life. Given the high prevalence of severe gastrointestinal symptoms, and complex palliative care needs, subcutaneous proton pump inhibitors may provide valuable symptom control in people with SSc. Further research into the safety, efficacy, optimal dosing, and tolerability of administering omeprazole subcutaneously, and in this setting, would be helpful and inform the palliative care sector.

Conclusions

In the case of a 51-year-old woman with SSc, subcutaneous infusions of omeprazole were given to alleviate severe gastrointestinal symptoms at the end-of-life with success. The use of the medication via this route of administration allowed the patient to die comfortably at home as she wished.

Acknowledgments

The authors would like to acknowledge the family for agreeing to publish this case report.

Footnote

Reporting Checklist: The authors have completed the CARE reporting checklist. Available at https://apm.amegroups.com/article/view/10.21037/apm-2025-aw-131/rc

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-2025-aw-131/prf

Funding: None.

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-2025-aw-131/coif). H.F. has previously received Scholarship Grants administered by University of Otago from the Canterbury Arthritis Support Trust and Bannan Trust for other unrelated work. The other authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. All interventions performed in this study were in accordance with the ethical standards of the institutional and/or national research committee(s) and with the Declaration of Helsinki and its subsequent amendments. Written informed consent was obtained from the patient’s family for publication of this case report. A copy of the written consent is available for review by the editorial office of this journal.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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