Palliative care has an important role to play in the response to Covid-19, in order to ensure that people who are dying do so in dignity and pain free. Sadly, this includes people who – under resource constrains – might not be prioritised to receive intensive care. Difficult decisions will have to made and communicated to people reaching the end of their life, and their (family) carers.
Palliative care providers include hospices and specialist palliative care teams. The teams are typically attached to hospitals, and provide support in various settings including in the person’s home or in the care home. Palliative care practitioners provide support with complex decisions and triage, psychological support for patients, carers and professionals, and complex symptom management. This includes providing advance care planning where people reaching the end-of-life can express their treatment wishes and preferences such as for life-prolonging treatments through assisted ventilation or CPR that require intensive care or other hospital resources. It also include emotional or spiritual support. Ideally, palliative care starts early when someone is diagnosed with a life-limiting condition.
At times of COVID-19 this will become challenging. Many health and social care practitioners who will see people infected with COVID-19 are making or will have to make very difficult decisions under time pressure about who will be getting life-prolonging, or -saving treatments, and who will access intensive care beds. Palliative care teams can play an important role in helping with these decisions. For example they have they know how to discuss tough choices with and patients and their (family) carers, and how to communicate decisions that need to be made (which under COVID-19 are likely to include decisions about alternative options for people who will not receive ventilators and intensive care). Even before COVID-9, these kind of decisions tend to happen under substantial resource constrains, especially in countries like the US where palliative care is heavily under resourced. At the same time, evidence from previous pandemics suggests that certain palliative care settings or teams such as hospices remain underutilised in epidemics. The challenge many health and social care systems therefore face is how to best utilise existing palliative care capacities.
Countries have taken different measures, some of which are summarised here.
Providing information to patients at risks and their carers about their wishes, preferences and choices (advance care planning)
Advance care planning is usually a process where people who reach the end of life – together with their (family) carers – discuss with health and social care professionals how they would like to be treated (e.g. whether they wish to receive life-prolonging treatments), and who will speak for them if they are unable to (advance directives). Under COVID-19, those treatment choices and preferences are or will be limited for some, and the time window in which discussions can take place is short. In several countries, guidance has been put in place for staff to immediately start ACP with everyone with serious health conditions. Countries differ in terms of how legally binding such directives are. For example in England and Wales, they are legally binding whereas in Switzerland they are not. Whether under COVID-19 they will remain legally binding in countries where they currently are is not yet clear. For example in the US, discussions currently take place to introduce guidelines that allow staff to deviate from normal life saving procedures and override the wishes of patients, due to the risk of infection to nurses and doctors, and shortage of protective equipment. In the US, health care staff have started doing advance care plans or directives for themselves and shared them via social media – partly to be good set a good example for the wider public but also to ensure to address their own risk of death during these times. In addition, tools exist from the US or from Italy that can be used by health and social care professionals to talk with people reaching the end of life -and their (family) carers – about difficult topics under COVID-19.
Delivery of Personal Protective Equipment (PPE) and pain medication
Another main priority in all countries includes the availability of PPE, which has been a challenge in Italy and reported as the most limiting factor in addressing COVID-19 in palliative care and for the healthcare system as a whole. In addition, in many countries there are concerns about ensuring there is sufficient supply of pain medication, and that it reaches those most in need. In some countries, like Italy and the US, toolkits have been developed to help health and social care practitioners provide pain management medication. They include sections how to deal with medication shortage. In the UK, care homes, which are expected to be the main provider of end-of-life care under COVID-19 are advised to hold stock of medication.
Re-organising care (including through telehealth)
One of the key lessons learnt from Italy is that it was important that special palliative care teams were able to reorganise themselves rapidly in order to respond to the demand quickly and flexibly. For example they created networks of hospice care services by shifting staff from hospice inpatient to home care services. The experiences also highlighted the important need for case conferences and similar team collaborations discussion to be able to decide quickly where to prioritise resources (e.g. by deciding who will get support after hospital discharge). Specialist palliative care teams also shared resources with other health and care professionals about simple palliative care symptom management, and produced a palliative care drug toolkit. In addition, they developed clinical and care pathways and referrals forms for ensuring access to palliative care. Palliative care teams also organised a 24-hours hotline, which provides advice for all people reaching end-of-life and their families, hospitals and long-term care providers (in particular care homes).
Hospices – together with care homes – have a potentially important role in taking on people as they are discharged from hospital. In the US, hospices are encouraged to use telehealth to make decisions about admissions into the hospice thus potentially freeing up capacity of staff and reducing risk for staff to become infected. However, since hospices are no longer getting their normal rates paid, this also puts them at financial risk. In the UK, hospices also face substantial financial uncertainty as they are not able to secure their regular funding, which comes to a large extent from charity shops or fundraising events.
In Australia, there are also plans to free up specialist palliative care capacity by reducing direct care in the form of face-to-face consultations. The role of specialist palliative care professionals is to focus support other practitioners looking after patients with COVID-19 by providing advice and guidance. They also have plans to optimise telehealth including improved access to smart phones for community palliative care nurses and increased use of MBS items by doctors and nurse practitioners seeing people with palliative care needs.
Training and supporting staff
In all countries, various guidelines have been produced to prepare and support frontline health and social care practitioners in providing basic palliative care. The experiences from at least some regions in Italy have shown that specialist palliative care staff in hospices were not always sufficiently informed about the risk of COVID-19, how to deal with this when looking after patients, and how to protect themselves. The palliative network in Bologna has therefore developed important guidance for staff.
In the UK, specific guidance has been developed for care home staff, who are expected to play a main role in providing end-of-life care under COVID-19. In addition to working with specialist palliative care teams, they are expected to work with community healthcare staff and community geriatricians (including on reviewing advance care plans as a matter of urgency, and on meeting palliative care requirements). They recommend the use of tools like RESTORE2 to identify deterioration, the National Early Warning Score (NEWS) to guide responses, and SBAR tool (situation, background, action, recommendation) to communicate concerns with external healthcare professionals.
- Palliative care has an important role to play in the response to Covid-19, in order to ensure that people who are dying do so in dignity and pain free. Sadly, this includes people who – under resource constrains – might not be prioritised to receive intensive care. Difficult decisions will need to be made and communicated.
- Many health and social care practitioners who will see people infected with COVID-19 are making, or will have to make, very difficult decisions under time pressure about who will be getting life-prolonging, or -saving treatments, and who will access intensive care beds
- The challenge many health and social care systems therefore face is how to best utilise existing palliative care capacities. Countries have taken different measures, some of which are summarised here.
- They include the prioritisation of advance care planning discussions with all people with life-limiting conditions; reorganising specialist palliative care (including using telehealth); training, guidance and support for health and social care staff; supply of protective personal equipment and of pain medication. Various tools have been developed in recent days or weeks to support the provision of palliative care to the many, and overcome some of the many challenges presented in light of COVID-19.
Bauer A (2020) COVID19: Proving palliative care for the many. Article in Article in LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE.
Austria, Germany and Switzerland (with thanks to Ingrid Zechmeister, Austrian Institute for Health Technology Assessment GmbH)