This is the second in a series of three blog articles from Session 7 – Perspectives: Lessons from COVID-19 in which we heard from different speakers about how the COVID-19 pandemic has impacted their own experiences of clinical trials, research, and support within the MND community. A further blog, written by Bruce Virgo who is living with MND and who also presented during this session, will be published shortly.
Although the impact of the COVID-19 pandemic has been great, the lessons learnt have been greater and, moving forward, short-term solutions to immediate problems are evolving into long-term strategies for continuing and improving research into MND, re-evaluation of clinical trial design and providing more effective and relevant care for people affected by the disease.
Our second speaker from this session was Dr Rachel Burman, Consultant in Palliative Care at King’s MND Care and Research Centre, London. Her talk was about the ‘Impact on palliative care for ALS/MND’ – in both the general MND community and, specifically, at King’s.
Clinical activity increased hugely as the COVID-19 pandemic hit, with a rapid increase in referrals to palliative care across in-patient, community and hospice settings.
The 2020 study by Bone and colleagues reported that deaths in care homes increased by 200%, at home by 77% and in hospital by 90% – a very clear demonstration that there was a huge surge in palliative care needs.
Understanding palliative care need – rapid evaluation of clinical practice
A study by Lovell and colleagues (2020) showed that most patients were older males with comorbidities. The most frequently experienced symptoms were breathlessness, agitation, pain and delirium. It was found that the high number of referrals required a relatively short period of palliative care involvement, resulting in a high turnover. Many of these were non-patient contacts. There is a need for ongoing data collection to monitor service.
Data collected from an MND Care Centre Survey (Al-Chalabi and colleagues) between March 23 – June 23, 2020 showed no more deaths than compared with the same period. There was a delay in establishing palliative interventions such as non-invasive ventilation (NIV) and PEG/RIG (feeding tube) resulting in fewer of these, although these are now picking up. End of life care was adversely affected due to the lack of access to hospices, who were unable to admit people on NIV because of the aerosol distribution associated with this and the lack of high-level PPE, and greatly reduced visits by community palliative services.
Patient and family concerns and priorities for palliative care
Four areas were highlighted as real worries for people living with and affected by MND during this pandemic:
- Reduced professional support
- Risk of reduced quality of care
- Strains on informal care networks
- Increased loss, grief and bereavement
How were these concerns tackled?
Because of the potential of reduced professional support, there were concerns surrounding decision-making.
In response to this, and in particular to healthcare professionals making decisions that could be applied to groups, such as ‘do not resuscitate’ orders, the General Medical Council (GMC) and the Royal College of Nursing (RCN) issued a statement in April 2020 that stated that the pandemic does not permit any health care professional to deviate from person-centred individualised care by making decisions on a group basis, and that decisions should be made on an individual basis involving the person concerned and those close to them along with the health and care team.
To address the worry of reduced quality of care, clinical staff at King’s were given additional training with the focus on symptom management, planning, communication, and end of life care.
When looking at how to better support informal carers, it was found that they had been somewhat side-lined, even prior to the pandemic, so designated times were set aside for separate video calls. King’s have also incorporated an evaluating tool – Care Support Needs Assessment Tool (CSNAT) – and carers are given time to talk about their experiences and given support where it is really needed.
Deaths due to COVID-19 have been associated with risk factors for prolonged grief disorder, post-traumatic stress disorder (PTSD) and other poor bereavement outcomes for relatives, due largely to patient isolation, restricted access and disrupted support networks. The response at King’s was to set up a rapid response bereavement team. Any person bereaved during the COVID pandemic is contacted and given access to ongoing support.
Front-line staff are also at risk of ‘moral injury’. This is the long-term impact upon healthcare professionals created by having to make difficult decisions, high mortality, futility of treatment and moral/ethical dilemmas during the pandemic. Staff are now offered access to formal and informal support in the form of wellbeing services, debriefs and counselling.
Opportunities taken in response to the challenges
In response to these challenges, King’s introduced a number of initiatives:
- To increase confidence in colleagues working with people with MND and their families.
- To hold virtual multi-professional team meetings to share information,
- to encourage people with MND to feel more empowered to make decisions with advanced care planning.
- To enhance support for those bereaved.
- To move away from trying to replicate the environment of the MND care centre and to exercise flexibility and adaptability, albeit virtually, in a way that mirrors the flexibility and adaptability and resilience that is always seen in people with MND and their families.
Although Dr Burman reported on her own experiences in clinic, clinics and care settings worldwide will have faced similar problems and will have adapted their service to accommodate these. Many of these new practices will continue once the pandemic has settled, leading to a better experience for people living with and affected by MND.
