Summary on the World Hospice Palliative Care Alliance (WHPCA) webinar hosted on March 20th “Coronavirus and people with serious and underlying conditions with a focus on palliative care”
The World Hospice Palliative Care Alliance (WHPCA) hosted a webinar “Coronavirus and people with serious and underlying conditions with a focus on palliative care” presented by speakers from all over the world. The Webinar had over 500 participants, from different countries, who either work in palliative care or have palliative care needs.
Marie Charlotte, from the World Health Organization said “It’s important that the palliative care community provides the WHO with their needs, experience and expectation at that time of Covid-19 outbreak” and she acknowledged the webinar for doing that. The WHO has recently published a guide on palliative care and humanitarian activities that could be useful at this time.
According to Marie, the WHO is currently discussing developing brief technical documents to health care providers. These technical documents will include recommendations about clinical practices, ethical issues, psychological implications, and protection of healthcare providers and their family members in relation to the Corona virus.
Marie also discussed some of the ethical issues that some colleagues in the field are currently facing. In Italy, one of the main concerns from the field is the capacity to make appropriate decisions when resources are not enough to meet the needs; resources could be human resources, equipment and infrastructure. In some countries, like France, national ethical committees have published their opinion to help guide the system in making these difficult decisions. In Norway, the Norwegian directorate of health care made guidelines on priority yesterday. Marie said, “resources are always limited and this is why the decision making process in the field should be guided in a concrete way”.
These decisions have to be taken in very difficult circumstances and it would be helpful to be included in the WHO technical guide that is to be published soon. This is an issue sensitive to local cultures and the involvement of family members when making these decisions is a key factor; Marie said, “It’s not just the working hours, we should avoid complete burn out to heath care providers as the complexity of these decisions adds on their plates. We can definitely provide criteria to make these decisions fair and taken in a very transparent way”.
In terms of developing a vaccine for Covid 19, research continues to be a priority for the WHO. However, a vaccine will not be useful for this outbreak, but it could be helpful for the next one. There is also a series of clinical trials for treatments that are being conducted in several countries.
In terms of pediatric palliative care, the WHO has published pediatric guidelines to palliative care two years ago, but a guideline specific to Covid 19 hasn’t been published yet.
When asked about guidelines to support family members who are caregivers, Marie mentioned that this could definitely be something addressed in the context of this outbreak due to indirect consequences. Marie said, “On the WHO website, there are new guidelines posted every day and we can add something specific to address caregivers, but so far nothing specific is there”.
The webinar also conveyed a personal perspective on the subject presented by Lucy Watts, founder of Palliative Care Voices and a person with palliative care needs. Lucy mentioned that its essential for those with palliative care needs to have a contingency plan in place and to share this plan with their family, community and healthcare providers.
Lucy wandered, “Will my mother isolate in hospice with me? In that case, will my mother manage my pre-existing condition and the nurse manages the corona condition?”. She urges palliative care patients to think about what resources they have available and try to distance themselves from anyone who might be at risk. Lucy said, “We already isolate ourselves, this is not an unusual situation for us. We try to take care of ourselves and manage our needs”. In this pandemic, everyone should be compassionate to others and when this outbreak is over we need to continue this attitude.
From Scotland, Angus who is a GP was recently infected by the corona virus and his partner Liz who has been caring for him shared their experience of living with Covid 19 in the household. Angus’s condition started with some minor respiratory symptoms 10 days ago, and then a couple of days afterwards, fever and cough followed. Angus said, “I spent 5 days in bed, completely lacking energy; I can’t imagine for someone with palliative care needs or someone who is a caregiver to go through this”.
Liz shared some of the best practices as a carer,”staying apart, sleeping in separate beds, ensuring the person who is ill is eating and drinking well, all the little other things like separating towels and taking the towels out of the bathroom and keeping cutlery separate were helpful. Not to mention, the spiritual and mental care that were very important to Angus”.
Joan Marston from PALCHASE in South Africa talked about a community assessment. She mentioned, “People think it’s the virus of the rich, rich people go on vacation and bring it to the poor”. Joan mentioned they are developing their own protocols and procedure to protect carers and children in hospices.
From China, Lynn Gould from Butterfly children hospice has mentioned that thankfully not a single kid was infected with the Corona virus since January 2020, but the challenge remains as isolation could be lifted anytime and normal business will open up again. She shared her learnings, “Isolation works if you are rigid about it and foreplaning is absolutely vital. In such situations, we should think outside of the box; telemedicine and teleconferences were helpful as well”.
In terms of adult palliative care in China, relatives haven’t been able to visit which definitely impacts the grieving afterwards for all the people who weren’t able to say goodbye.
Christoph Ostgathe, President of the European Association of Palliative Care mentioned that there is no doubt in the value of palliative care in every setting and especially the Covid 19 one, “Palliative care can’t solve this alone but it’s important, as palliative care physicians, we always face these decisions and we can be instrumental in providing experience” .
Lizzie Chambers, from “Together For Short Lives”, UK, said they have a section on their website where organizations can share the best practices and a section that provides tips for families and caregivers. They have also conducted surveys to see what the capacity of hospices is.
Max Watson, Hospice UK explained three vital steps that could be undertaken in the current situation: preparation; training and process. First, in preparation for the surge, they scheduled virtual meeting across the hospice community with 22 organizations to share the community concerns, and pass it to the government in efforts to provide answers to the community. Max said, “It’s a rapidly changing situation and these questions change as we move on and adapt. We haven’t done that before and we need to build that network of support as we are all teachers and learner in that case”.
Second, training – this involves passing on the key skills to interact with the current situation. Max said, “People need our skills as palliative care providers and we should train others. Due to the high number of expected deaths, a good management of the likely symptoms that we are good in is key practice”.
Finally, process – ensuring the key processes are in place before the surge. Max explains, “ who cleans your hospice, will they continue? What are the means of transportation that they take? And does that put them in high risk and consequently put your patients in high risk as well? Think broadly how you can keep yourself going and managing isolation?” As we learn from this outbreak that everybody matters in this crisis; we affirm the value of people and palliative care as communities are coming together to help and support.
Some of the resources shared during the webinar:
- WHO guidelines can be downloaded here: https://apps.who.int/iris/handle/10665/274561
- World hospice palliative care Alliance webpage on Covid 19: http://www.thewhpca.org/covid-19
- A Field Manual for Palliative Care in Humanitarian Crises https://oxfordmedicine.com/view/10.1093/med/9780190066529.001.0001/med-9780190066529-chapter-2
- Helpful information from EAPC about some initial palliative care guidance for non-PC specialists https://www.eapcnet.eu/publications/coronavirus-and-the-palliative-care-response