“Palliative care seeks to address pain – physical, psychological, social and spiritual – and other symptoms, for those with progressive incurable diseases”. Dr Jane Bates, palliative care physician, Malawi
“You matter because you are you, you matter until the last moment of your life and we will do all that we can to help you to live until you die.” Dame Cicely Saunders – the founder of the modern hospice palliative care movement
COVID-19 is like no other disease in living memory, in that although the percentage of people infected with COVID-19 who become seriously ill and die is relatively low, the sheer number of people who are infected, and the speed with which this virus spreads through families and communities, has resulted in large numbers of people becoming very sick very quickly. Many are dying – and many people are having to provide end of life (palliative) care, who are not used, or trained, to do so.
Palliative care is an approach that improves the quality of life of patients and their families facing the challenges of life-threatening and terminal illness, through the prevention and relief of suffering and the treatment of pain and other distressing symptoms. This approach integrates physical, psychological and spiritual aspects of patient care. (See here for the World Health Organisation’s full definition palliative care.)
In some places, COVID-19 has overwhelmed health facilities, meaning health care staff have been forced to make very difficult decisions about which patients should receive life-saving treatment and which should receive palliative care. Even where palliative care professionals are usually available, the numbers of patients have far exceeded their capacity to respond and many healthcare staff who are not trained in palliative care are now having to deal with palliative care emergencies, death and dying on a daily basis and on an unprecedented scale.
In other places, palliative care, or even hospital care, is not available to many people who are seriously ill, meaning family members will be providing end of life care to loved ones.
On this page we share some resources on palliative care. We have tried to focus particularly on material that is helpful to people who are not palliative care professionals and for whom providing end of life care is a new experience. Please note, this material focuses specifically on care at the end of life; see also our pages on caring for people with COVID-19 and caring for people with COVID-19 at home, which contain practical information about the hygiene measures you will need to take when looking after someone with COVID-19.
On this page:
- In the midst of suffering: a Biblical reflection on palliative care written by a palliative care professional in Malawi
- Resources on palliative and spiritual care
- Going deeper: resources more suited to palliative and spiritual care professionals
A webinar on palliative care in the context of COVID-19 was recently convened by Chatham House. The round table had many important messages (link to the webinar recording here), including that patients with underlying conditions, who already need palliative care or are vulnerable to COVID-19, are afraid at this time: afraid that their needs for medicine to relieve pain, breathlessness or other symptoms may no longer be available; afraid that their lives are considered to be less important in some way, and that they are written off as lives not worth saving.
As Christians we believe in the value of every life and reflect in our life and work the importance God places on caring for those who are most vulnerable.
It is easy to think that palliative care is something that only specialists can do, but Lucy Watts MBE, Founder of Palliative Care Voices, and other experts on the call highlighted some basic principles that anyone can follow:
- Everyone has a right to the best care available.
- We all have an ethical duty not to abandon people in need and to try to provide continuous care for someone who is sick.
- Plan in advance. Think about what the patient will need and try to anticipate what medicines, or other care, might be needed and access the things needed to provide that care before it becomes a crisis.
- Keep the patient at the front of your care. Ask them what they need; it might be something quite simple.
- Where possible, ensure access to medications, especially pain medication and other medicines for symptom relief.
- Try to identify alternative ways to treat or alleviate symptoms if the usual medicines are not available.
1. In the midst of suffering
This Biblical reflection on palliative care from Tearfund is written by Jane Bates, a palliative care physician in Blantyre, Malawi. As well as providing a faith perspective, the study is also a very helpful introduction to palliative care. It recognises that “Many of us find it hard to spend time with those who are living with an incurable condition” and offers a helpful grounding for people providing end of life care. Recommended as a starting point.
2. Resources on palliative and spiritual care
This Power Point from the Association of Palliative Care Social Workers (APCSW) is simple and easy to read, and provides a good introduction to palliative care for non-professionals: APCSW – palliative care overview. It contains useful principles and ideas for people who may be having to provide end of life care but are unused to doing so.
The World Health Organization has a series of fact sheets on basic palliative care on its website. WHO are currently updating their guidance on palliative care in the context of COVID-19 and when this resource is available it will be posted here. (awaiting new links from Claire)
The following WHO resources are primarily directed at health care professionals. However, they contain useful basic information about palliative care and are significant for faith-based organisations because palliative care is one of the areas where the World Health Organization, in its political and technical documents, specifically includes spiritual care.
- Palliative care introduction page and fact sheet:
- Health topic page on palliative care:
- Guidelines on integrating palliative care into primary health care settings:
- Guidelines on integrating palliative care and symptom relief into the response to humanitarian emergencies and crises:
- Why palliative care is an essential function of primary health care:
The Anglican Journal, the national newspaper of the Anglican Church of Canada, has published a series of interviews with spiritual care practitioners and chaplains about their experiences during the COVID-19 outbreak. Recurring themes in these interviews offer insights that may be helpful to others providing spiritual care, and to non-professionals. These include: the importance of simply being present; the need to be flexible in fast changing situations; the needs of staff in health care facilities for spiritual support and care; the importance of hope, as opposed to optimism. One of the chaplains interviewed quotes Henri Nouwen:
“While optimism makes us live as if someday soon things will get better for us, hope frees us from the need to predict the future and allows us to live in the present, with deep trust that God will never leave us alone.”
3. Going deeper – for palliative and spiritual care professionals
- Recording of the recent Chatham House webinar on palliative care in the context of COVID-19: here.
- The Global Palliative Care Organization’s special series on COVID-19 and palliative care: here. Additional resources can be found here.
- “The key role of palliative care in response to the COVID-19 tsunami of suffering”, The Lancet Medical Journal, April 22nd 2020: here.
- World Hospice and Palliative Care Alliance training manual for health-related workers in developing countries: here. From this link you can download the manual and the toolkit, which been developed for resource constrained settings, in many different languages.
- The spiritual care association has developed this resource on Chaplaincy in the time of COVID-19. It is quite technical in nature and primarily aimed at professional ministers of religion.
- As already mentioned, spiritual care is a recognised part of palliative care. The International Association for Hospice and Palliative Care has worked with others to produce guidance on spiritual care considerations for any professional now faced with providing end of life care. The short document can be found here.
- Ehospice, a globally run news and information resource, has this piece on using palliative care principles to ease COVID-19 challenges.
- Emory University has developed a website page of resources for those involved in specialized ministries such as chaplaincy and spiritual care, which includes guidelines, webinar recordings and interviews on spiritual care from different faith traditions: here.
- The Corona pandemic as a challenge for spiritual care
 World Health Assembly 24. May 2014. Resolution number WHA67.19. https://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R19-en.pdf?ua=1&ua=1