key: cord-0948016-w0vknr9k
authors: Lovell, Natasha; Maddocks, Matthew; Etkind, Simon N.; Taylor, Katie; Carey, Irene; Vora, Vandana; Marsh, Lynne; Higginson, Irene J.; Prentice, Wendy; Edmonds, Polly; Sleeman, Katherine E.
title: Characteristics, symptom management and outcomes of 101 patients with COVID-19 referred for hospital palliative care
date: 2020-04-20
journal: J Pain Symptom Manage
DOI: 10.1016/j.jpainsymman.2020.04.015
sha: 34555e8e08985c4ae7546e27849d1ba2910f4097
doc_id: 948016
cord_uid: w0vknr9k

Abstract Hospital palliative care is an essential part of the COVID-19 response but data are lacking. We identified symptom burden, management, response to treatment, and outcomes for a case series of 101 in-patients with confirmed COVID-19 referred to hospital palliative care. Patients (64 male, median [IQR] age 82 [72-89] years, Elixhauser Comorbidity Index 6 [2-10], Australian-modified Karnofsky Performance Status 20 [10-20]), were most frequently referred for end of life care or symptom control. Median [IQR] days from hospital admission to referral was 4 [1-12] days. Most prevalent symptoms (n) were breathlessness (67), agitation (43), drowsiness (36), pain (23) and delirium (24). Fifty-eight patients were prescribed a subcutaneous infusion. Frequently used medicines (median-maximum dose/24h) were opioids (morphine, 10-30mg; fentanyl, 100-200mcg; alfentanil 500-1000 mcg) and midazolam (10-20mg). Infusions were assessed as at least partially effective for 40/58 patients, while 13 patients died before review. Patients spent a median [IQR] of 2 [1–4] days under the palliative care team, who made 3 [2–5] contacts across patient, family and clinicians. At March 30 2020, 75 patients had died, 13 been discharged back to team, home or hospice, and 13 continued to receive inpatient palliative care. Palliative care is an essential component to the COVID-19 response, and teams must rapidly adapt with new ways of working. Breathlessness and agitation are common but respond well to opioids and benzodiazepines. Availability of subcutaneous infusion pumps is essential. An international minimum dataset for palliative care would accelerate finding answers to new questions as the COVID-19 pandemic develops.

People diagnosed with COVID-19 have an estimated mortality of 1-3%, with those with multimorbidity most at risk of dying. 1 Estimates vary widely, but COVID-19 could directly cause up to 510,000 deaths in the UK and 2.2 million in the USA. 2 Although the clinical characteristics of COVID-19 patients have been described, the focus has been on risk factors for ICU admission and death. 3 Data are lacking on the palliative care needs of people with COVID-19, including symptom burden and response to treatment; to help inform service planning for palliative care and hospice services in the UK and elsewhere. Here we describe the symptom burden, management, response to treatment, and outcomes for COVID-19 patients referred to the palliative care teams in two large NHS hospital trusts in London, UK. 6 Symptoms were identified from standardised palliative care notes. Symptom control medicines with doses were extracted from drug charts, and clinical impressions of effectiveness were determined based on documentation at follow-up (e.g. improved breathing, agitation, 5 comfort). Descriptive analyses were performed using SPSS (V.24, IBM, USA). Comparisons between groups were expressed as medians and interquartile ranges (IQR) due to the data distribution.

Ethics approval: The work was registered with the hospital Clinical Effectiveness Teams (registration numbers: PC043, PC044 and 10774).

For full demographic and other details see Table 1 For full details of symptoms, drugs prescribed, and outcomes, see Table 2 . The most prevalent symptoms were breathlessness, agitation, drowsiness and pain. 24 patients had symptoms of delirium. Ninety-six patients were prescribed 'as needed' medication for symptom relief, and 58 patients were prescribed a subcutaneous infusion for symptom relief. Of the 37 patients who were prescribed morphine by subcutaneous infusion, the median final dose was 10mg/24 hours. Fifty infusions contained midazolam, median final dose 10 mg/24 hours. The infusion was assessed as at least partially effective for 40/58 patients, while 13 patients died before effectiveness could be reviewed.

Patients spent a median [IQR] of 2 [1] [2] [3] [4] days under the palliative care team and received 3 [2] [3] [4] [5] contacts. As of March 30 2020, patients had died (75), been discharged (13) or continued to receive palliative care input (13).

We provide the first report of characteristics, symptom management and outcomes of patients with COVID-19 referred for hospital palliative care. The main symptom experienced by these patients was breathlessness, similar to that found earlier in the disease trajectory. 7 In addition, we find patients near the end of life commonly experience agitation, while cough is infrequent. Time spent under the palliative care team was brief (median time 2 days), and symptom control with subcutaneous infusion was achieved in most cases using relatively small doses of opioid and benzodiazepine. 74% of patients died.

Many services are currently facing dramatic increases in the number of people severely affected by COVID-19. In this series, the number of patients with COVID-19 referred for palliative care each week increased from 2 to 51 over four weeks. This is likely to necessitate changes in ways of working for palliative care teams such as an increase in remote patient assessment and fewer face to face assessments.

A proactive approach to symptom recognition, assessment, management and escalation for people with COVID-19 is likely to be helpful 8 . Providing brief and accessible ward-base teaching on managing breathlessness and agitation, with a low threshold for prescribing anticipatory medicines for those with prognostic uncertainty, can ensure symptoms are addressed promptly. 9 Encouragingly, our data indicate that patients' symptoms can be managed using opioids and benzodiazepines at low doses. Subcutaneous infusions were frequently used to achieve symptom control. It is essential that adequate stocks of equipment are available to provide symptom control medication for those affected by COVID-19, both in inpatient and community settings.

7 Agitation was common among our patients. A high level of psychological distress may result from rapid deterioration and be exacerbated by isolation due to visitor restrictions. Ways to mitigate against this include use of technology such as tablet computers to communicate with carers and friends, though this may not be practical for people near the end of life. Chaplaincy, social work and psychology teams' support is valuable. 9 The demographic characteristics of patients in this case series, predominantly older men with comorbidities, reflect global data on COVID-19 mortality risk. 3 Hypertension and diabetes, the most frequent comorbidities in our patients, were risk factors for poor outcomes in a study of Chinese patients with COVID-19 10 . A small proportion of patients in our case series were referred to palliative care for reasons other than COVID-19, but subsequently diagnosed as COVID-19 positive. It is important to acknowledge that their palliative care needs include both COVID-19 and non-COVID-19 related problems. In addition, there are likely to be knock-on impacts on non-COVID-19 patients resulting from the escalation in referrals, many of whom will receive less palliative care input as a result.

We included only patients referred to palliative care, and we have no information about the palliative care needs of other inpatients with COVID-19. We had few referrals from Intensive Care Units. Around 50% of patients with COVID-19 who are admitted to ICUs subsequently die and they are likely to have high palliative needs. 11 12 Information about symptoms was identified from the free-text notes, and we did not collect data on symptom severity. We report only on inpatient hospital patients and did not include community or inpatient palliative care units/hospices. The assessment of response to medication was subjective, and as the length of palliative care involvement was relatively short there was not always sufficient time to assess effectiveness. Last, this is an early case series and patterns are likely to change as the pandemic progresses.

8

Patients severely affected by COVID-19 frequently experience symptoms and distress, and palliative care is an essential part of the response to this pandemic. Urgent research is needed to understand more about symptom prevalence and management, and how best to deliver palliative care to those dying in ICU and community settings. An international minimum data set for COVID-19 patients receiving palliative care would accelerate finding answers to these questions. (3), anxiety (2), seizures, ascites, incontinence, dysuria (1 each) * based on follow up documentation, e.g. improved breathing, agitation, comfort

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