Looking back on my emails, I see that my first COVID-related message came in on 3rd March. At first, it was impossible to judge the impact the virus was going to have on our healthcare system and hospices. The shocking lack of their inclusion in the two essential components – PPE and testing – soon became apparent. Many of our senior hospice colleagues have described how they had to ‘fight’ for what was needed –on top of caring for very sick patients who may or may not have the virus and staff having to isolate for the statutory period.
A number of excellent documents and initiatives were produced rapidly and we were pleased to be able to direct our customers to the resources created by a joint group of experts from the Royal College of General Practitioners and the Association of Palliative Medicine.
This comprehensive document is still available to provide healthcare professionals with clear guidance on symptom control, end of life care and supporting families. Palliative care was very much in the news and we know that many of our colleagues working in Trust hospitals were providing care to patients as well as support to colleagues on every level.
Clinicians reported that the usual drugs we use for symptom control were effective for the breathlessness and agitation which seemed the most prevalent issues for COVID patients. Although there were views that higher doses should not be avoided in emergencies from the USA (1), Clinicians at Guy’s and St Thomas’ hospitals, who recorded their data from 101 patients they cared for, agreed that agitation was a common symptom observed and it was managed with similar doses to those usually used. Breathlessness continued to be a problem throughout the disease but cough less so towards the end. 74% of those that were admitted to palliative care for symptom control died (2). Other doctors in the South of England, who were also recording data, observed that patients fell into two main categories: some deteriorated and died with a shorter than average dying phase for hospital deaths – 39 hours rather than 72 hours – while others had the more usual trajectory. They observed the latter group were older and frailer. They also noted that 72% of the patients in the study died with a syringe pump in place compared to the usual number of around half that (3). Their report concludes that there should be no delay in starting an infusion where indicated in COVID and that the need to prepare family members for negative outcomes is more pertinent than usual. Hopefully, this learning will be disseminated and increase confidence in caring for dying people with the virus.
By early April we started to become aware that some end of life injections were being supplied preferentially to NHS Trusts and the Nightingale hospitals. Ashtons had created a list of essential medicines early on and our excellent team ensured they obtained good stocks of the likely medicines which would be required. Hospices were prepared to admit additional patients for end of life care and some found their numbers increased. Conversations with hospice colleagues over April, May and June made it clear that some people decided that visiting restrictions in hospitals and hospices led them to want to stay in their own homes, so after an initial increase, the actual occupied bed numbers were not as high as may have been expected.
You explained that many patients were admitted without having been tested so you needed to treat them as ‘possibly’ COVID-positive, with all the ramifications of PPE and staff management. Some of you have talked about the difficulties you encountered in your interactions with patients and families.
Masks, aprons and gloves create such a barrier to how we communicate and you were unable to apply the specific ways you are used to caring with close contact and gentle touch.
This sounded the most difficult challenge for your teams and it was expressed very clearly in a moving video produced by Princess Alice Hospice which was shown on BBC Newsnight. Mercadante and colleagues reported on their own experiences in Italy and showed that although virtual contact with patients was of some comfort, unsurprisingly nothing substitutes for human touch (4).
With more patients remaining at home over this period, we worked with some of the hospice community team leads and their CCGs to ensure rapid access to symptom control medicines. It was clear in the community too, that deterioration and death were occurring more rapidly with COVID and some of the existing ‘Out of Hours’ pharmacy schemes were not as responsive as they needed to be. The SW London CCG provided emergency packs of injectable and oral drugs which were stored in various settings and could be accessed at all hours. Although the use of these packs was low, it was a very responsive and innovative way to support those caring for people in the community. We hope that shining a spotlight on emergency end of life care drugs out of hours may help mould any future plans and we continue to support some hospices in their aims to become hubs for ‘just in time’ supplies of small quantities of medicines when other systems cannot meet the patients’ urgent needs.
Another welcome initiative has been the ability to re-purpose medicines which have been supplied to a patient but not required. We had heard from the CQC last year that they would not be against hospices taking into stock items dispensed on a TTO from the supplying pharmacy which subsequently could not be used due to the patient not being well enough for discharge. We had prepared a Standard Operating Procedure for this practice but once COVID arrived, we decided to broaden the scope of this and advise hospices to quarantine and potentially re-use other complete packs of medicines which would otherwise be wasted. The NHS subsequently produced more conservative guidance on this practice but we hope that this may continue to be our practice and that we can make use of unwanted TTOs, while carefully documenting the practice and using our pharmacists to assist with the governance processes.
This has been a summer none of us will forget. Some of us have lost family members, friends and colleagues. All of us know people whose lives have been affected and we, as Ashtons, were pleased to know that we were able to support you in the unique role you have in caring for those at the end of their lives.