Journal of Prescribing Practice - End-of-life care in a pandemic: a primary healthcare perspective

Abstract

Amanda Armstrong, Dr D. Aref, Dr S. Namuq, Riccardo Arduinin, Rebecca Evans, Dr Ajula Gunasekera, Dr K. Hochstein-Mintzel, Dr N Hilton, Kate Larden, Dr Christine Whitlow

This article will explore end-of-life care in the COVID-19 pandemic in north east Essex from the perspective of general practice. This article shows the new approaches that have been adopted to support people in the community at the end of life. These new ways of working demonstrated the resilience of healthcare professionals working together with the use of video to ensure that patients received the optimum care and treatment in their home at the end of their lives. It demonstrated that community teams such as district nurses, hospice staff, GPs and the lead nurse for end of life care could implement new ways of working to ensure joined up care and treatment. It also shows new models of working in the future.

The COVID-19 pandemic was declared in March 2020, with Prime Minister Boris Johnson announcing the first nation-wide lockdown on 16 March 2020.

In the northeast Essex area, the local clinical commission governing body agreed that St. Helena Hospice would take the lead for end-of-life care during the pandemic. The Clinical Director, Dr Karen Chumbley, released a video explaining the route that the hospice would take to ensure that end-of-life care would be supported in the community and the local hospice team ran webinars to prepare general practitioners (GPs) and end-of-life leads, including the authors of this article, for the pandemic.

The authors' primary care network (PCN) comprises three town surgeries and two village surgeries, which include, on average, three care homes per surgery. Two of the authors' care homes were severely affected by COVID-19 (24% and 35% deaths in the care homes. In the fist wave two care homes in particular were severely affected losing a third and a quarter of their patients in two months) whereas other care homes had only sporadic cases (3–12%) (Creed, 2021). The PCN end of life meetings were too large for one lead GP to attend on behalf of the group. Instead, a representative GP from each surgery joined the meeting at designated times. This enabled staff to gain the benefits of communicating with those working locally within the umbrella of the PCN. These meetings, held via secure video link, involved staff from the hospice, district nurses, community nurses and GP care advisors. The result was a multidisplinary approach to holistic care and management for end-of-life care in the community.

In preparation for the pandemic, all clinical nurse specialists were recalled to the hospice, along with additional staff who were required to monitor the telephone lines and ensure 24/7 call response. The community nurses, alongside district nurses and hospice staff, ran a crisis response service to ensure that end-of-life patients could be cared for at home and patients wishing to die at home could be discharged from hospital and cared for in the community.

The hospice already had an operational virtual ward, which was a care-at-home service where hospice nurses could care for a patient within the last 2 weeks of life – bringing the hospice to the home. This virtual ward was enhanced, and additional beds were created, allowing the capacity to be increased from four patients to 16 patients. This necessitated incorporation of a care agency to help with additional care needs. Prescribing clinical nurse specialists (CNS) changed their working patterns to include working at night so that anticipatory medications and care could be continued overnight to ensure high-quality, continuous care and relieve pressure on the NHS 111 service and out-of-hours (OOH) staff that would have previously held these responsibilities. At the hospice, there was a change in policy, and patient group directives were endorsed to allow hospice staff to administer medications from the hospice, known as St. Helena's hospice (St Helena's policy), to patients.

Webinars were organised by hospice staff, which included drug information and regime best suited for patients dying from COVID-19, based on experience from other European countries as well as other areas in the UK (Figures 1 and 2; Table 1). Information was provided on syringe pumps, drug supplies and the use of subcutaneous ports in an emergency. Video links were added to the website to guide staff and a patient's family in administering drugs, inserting subcutaneous ports and giving medications using a subcutaneous route (Royal Pharmaceutical Society, 2016).

Figure 1. COVID-19 guidance on home visiting Figure 2. Pharmacological symptom control for patients dying from suspected or confirmed COVID-19

Table 1. St Helena's Hospital end-of-life care for patients with COVID-19?

The mechanism of death from COVID-19 occurs via one or both of the following:

Type 1 respiratory failure from acute respiratory distress syndrome (ARDS)
Systemic shock from ‘cytokine storm’ that resembles bacterial septic shock

The most common symptoms experienced by patients are: i) Pyrexia and rigors ii) Severe dyspnoea and iii) Terminal delirium and agitation.

Medication options

The medications most likely to provide effective symptom control are:

Antipyretics for rigors and delirium
Opioids for dyspnoea
Benzodiazepines for agitation
Antipsychotics for delirium and agitation.

In normal circumstances, a continuous subcutaneous infusion (CSCI) via syringe driver would be recommended for drug administration, but it is expected that syringe drivers will be in short supply.

Medication route

Insert a subcutaneous (SC) port, so that medications can be administered without multiple injections. These ports last up to 72 hours but should be changed earlier if there are signs of erythema or pain at the site
Some medications such as lorazepam can be given sublingually
The oral route is unlikely to be available in the dying phase
Viral shedding can occur rectally, so the rectal route should be avoided.

Medication rationale

As nursing and medical staffing levels will be lower during the peak of the pandemic, it will be important to provide effective symptom control without relying on frequent medication administration
This may require using medication to deliberately reduce conscious level more rapidly and deeply than in traditional palliative care practice
It is important from an ethical and legal perspective to avoid medications and doses likely to hasten death. It should be noted that larger than usual standard doses may be required for effective symptom control
In the absence of staff to administer SC drugs, the use of lower ‘standard’ doses may increase the risk of poor symptom control at the end of life, resulting in unacceptable distress for patients and their families.

Pharmacokinetic considerations

Morphine and midazolam are effective for around 4 hours after SC administration
Levomepromazine is a sedating antipsychotic with a duration of action between 12 and 24 hours: a single dose of 50mg (2ml) subcutaneously will cause significant anxiolysis and sedation within 90 minutes
The combination of all three medications is therefore likely to provide optimal symptom control for 24 hours from a single nurse or doctor contact to administer SC drugs
Fentanyl and buprenorphine patches should be avoided due to the slow onset of action (>12 hours)
Pyrexia exacerbates agitation and delirium, so an antipyretic helps. NSAIDS are preferred as they have a longer duration of action than paracetamol and unlikely to hasten death in the context of end-of-life care.

Oxygen

Oxygen given via nasal specs, if available, at a rate of 2–4 L/minute may provide some symptomatic benefit.

Video calls and conferences were set up with patients, their families and staff in care homes to discuss advance care planning, including the discussion of future management involving ventilation and/or hospital admission (General Medical Council [GMC], 2020; Royal College of Nursing [RCN], 2020).

Video calls were well received by patients and their families during the pandemic, especially by those who were shielding, as the virtual link allowed face-to-face communication. This helped the clinician explore difficult areas, such as future care wishes including discussions regarding contracting COVID-19 and its implications such as hospitalisation and potential ventilation, do not attempt resuscitation and future complications. This also reduced the need for visiting and decreased risks of spreading the infection (GMC, 2020; RCN, 2020).

Other healthcare professionals such as district nurses, community matrons and the end-of-life lead nurse at the surgery would provide video links if families or patients were unable to manage the technology, so that the GP could communicate with the patient by a secure video link.

Occasionally, video links were unable to be used where reception was poor. In these cases, the general practitioner would visit wearing full personal protective equipment. The later could be a barrier for sensitive communication regarding end-of-life care and as such these visits tended to be followed up with telephone calls.

Patients who were suspected of being COVID-19 positive, were visited by the COVID-19 medical visiting team. This team consisted of GPs or nurses who could admit patients to hospital if necessary. This was particularly helpful in the outbreaks at nursing homes. Verification of expected death could still be done by community and hospice nurses who had completed the necessary training. The COVID-19 medical visiting team could perform this function, which was critical in large outbreaks in care homes (Figure 1).

Video calls were used to verify and certify deaths by a GP – legislation stated that the patient need only to be ‘seen’ 28 days before death for an expected death (gov.uk, 2020a).

There had been some mixed messages about verification of expected death early in the pandemic. Under the law, verification does not need to be done by a clinician but, as many funeral directors were not collecting a body without verification (gov.uk, 2020a)

Weekly PCN meetings were held by secure video links between primary care, Anglian Community Enterprise, district nurses and St Helena hospice clinical specialist staff. These meetings provided the opportunity to plan for end-of-life care, co-ordinated symptom control, anticipatory prescribing and improve communication at a very difficult time for staff and patients. It ensured that everyone was aware of the changes in end-of-life care, such as the ambulance service accepting electronically signed DNAR forms.

There has been national guidance on advanced care planning in the context of learning disability and autism during the COVID-19 pandemic, reminding practitioners that decisions need to be individualised and patients and their families need to be consulted. Learning disabilities and/or Down syndrome should never be listed as a reason for a DNAR (NHS England, 2020b).

A new policy was included to allow the reuse of prescribed end-of-life medication within care homes, with the hospice offering additional support to care homes where there had been an outbreak, for support for staff and patients (gov.uk, 2020a).

Conclusion

This has been unprecedented time in end-of-life care at the authors' surgery, the speed at which a decisive plan was put together and commnicated to staff ensured the best possible care was still provided. The use of technology has been revolutionary for staff and patients and their families as well. Secure video links have enabled busy community staff to join end-of-life meetings and allowed joined up care and prompt reactions to patients' needs in the community. This ensures their advanced and final wishes can be adhered to and a patient can remain at home with all the support that general practice, the community team and the hospice can offer.