Worldwide Hospice Palliative Care Alliance (WHPCA) Submission to the International Development Committee Inquiry. Submitted: May 12 2020
The WHPCA is a global alliance of members in over 100 countries. Our vision is a world with universal access to palliative care for those who need it. Palliative care is a crucial part of the COVID-19 response and alleviates COVID-related suffering. Now is the time to alleviate suffering by urgently supporting the scale-up of palliative care services in low and middle-income countries. We must then build back better so our health systems are resourced and equipped to care for the most vulnerable in our societies, including those with serious illness such as NCDS, HIV and dementia and those facing the end of life.
Detailed response to questions:
ISSUE 1: Palliative care is not being mainstreamed in development, humanitarian and health responses to COVID-19.
RESPONSE: MAINSTREAM PALLIATIVE CARE: Mainstream palliative care for all people of all ages as an essential part of development, humanitarian and health responses to COVID-19 with allocated budget, including as part of progress to Universal Health Coverage (UHC).
Palliative care is an essential component of the COVID-19 response yet is rarely available,. In the majority of Low and Middle-income countries, health systems are not prepared or equipped to provide palliative care to those who will need it both as the direct and indirect result of COVID-19. Despite palliative care being an essential part of the continuum of UHC, it is rarely available. Before COVID-19, it was estimated that 61.5 million people needed palliative care yet less than 10% could access it. COVID-19 is likely to push this figure much higher. The effect of the long-term lack of mainstreaming of palliative care in development, humanitarian and global health interventions is dire for people who need this care. All efforts must be taken to reduce and prevent deaths, something that palliative care providers are seeking to do in their communities through prevention messaging at the household level and protection of people with existing palliative care needs. In parallel, addressing the suffering of those who will not recover from COVID-19 is a moral and ethical imperative.
“Palliative care services must be scaled up. The only certainty is that deaths will accumulate. Palliative care's goal is to alleviate serious health-related suffering. That suffering will take place in the coming weeks in the community as well as the hospital. The Lancet's 2018 Commission on Palliative Care and Pain Relief defined an essential package of palliative care services that can be provided at all levels of the health system, in all countries, and by multiple categories of health workers. Those services, together with the people needed to deliver those services, need to be identified urgently.” Richard Horton, Editor of the Lancet. Comment, April 24 2020.
“In the Rohingya camps there are currently 58 cases of COVID-19. For a population of 1.2 million we have just 17 palliative care assistants. Before COVID we estimated that 6000 patients (approximate) needed palliative care at any time. There are 35 camps and palliative care is currently only provided in 8 of them and 2 upazilla health complexes. Our palliative care assistants are providing support to 4 isolation centres preparing for COVID-19 but often they don’t get PPE. We need support on facilitating palliative care training, expanding palliative care in all camps and medical equipment. We need to make sure we have sufficient medicines. We are scared because the integration of palliative care has been neglected and not financed for so long. We have to do so much so quickly and still we are not getting the financial support we need" Dr Farzana Khan, Fasiuddin Khan Research Foundation (FKRF), Bangladesh, May 7 2020
There is huge lockdown disruption of care to people with existing palliative care needs. The impact of strict lockdowns are creating numerous challenges for people with existing palliative care needs and those in need as a result of COVID-19. This includes access to essential items such as food as well as essential medicines. Much palliative care is provided in people’s own homes and communities. Lack of transport and lockdown regulations are making access to essential care, needs and medicines challenging both for carers and those with palliative care needs. In some countries such as South Africa, palliative care providers have been identified as essential workers and are therefore able to continue providing care to people with existing palliative care needs and those affected by COVID-19. In many countries, however, they do not have this recognition. In Bangladesh, a project supported by DFID has been working to continue its services via mobile technology. This is an acute issue exacerbated that we estimate that over 90% of palliative care patients are living with disabilities in many settings.
“Before the lockdown started, we distributed a total of 40 special food packs containing food, soap, protective equipment and leaflets to our patients. We also distributed 210 normal food packs and leaflets to the local community people of Narayanganj City Corporation. Now that we are in lockdown, providing home care is quite impossible for us. But we haven’t stopped our services. We are utilizing social media such as Facebook and technology like WhatsApp effectively.” Palliative care manager, Narayanganj City Corporation, Bangladesh, April 2020
The sustainability of hospice and palliative care services are in doubt. The majority of hospice and palliative care services globally sit outside of mainstream health services and their financial sustainability is threatened by the pandemic. There is serious concern that the coronavirus pandemic will affect the ability of philanthropically funded hospice and palliative care services to provide the care that is needed through emergency care and to integrate palliative care services into mainstream health care services.
Health care workers globally are witnessing increased suffering and end of life situations both directly and indirectly due to COVID-19. The majority of health care workers globally have not been trained in essential palliative care, including end of life care, and use of opioid medications. In many parts of the world palliative care is not in health care curricula. Supporting health workers, including those working in ICU, in COVID-19 centres and in communities, is vital to improve the experience of people and family members and to better support the mental health of health care workers. In some countries, e.g. Kenya and Zimbabwe, ministries of health are approaching NGO palliative care providers for support with mental health and counselling of national health care workers. However, there is rarely a budget attached which means the NGOs are having to seek funding to deliver this work from a shrinking pool of existing donors.
There is a lack of protection for health care workers. Palliative care providers often sit outside of the formal health system. This means that palliative care providers in many settings are not receiving personal protective equipment. Palliative care providers are often caring for the most vulnerable and those at the most risk of COVID-19 complications. Lack of PPE creates fears for their own safety as well as the safety of those who they are caring for. In many settings including some services in Zimbabwe and Kenya, hospice and palliative care face to face services have been suspended and replaced with telephone consultations. In others, NGOs are utilising community connections to get the PPE they need as well as innovating.
“Two of the four hospices that conduct home visits reported that they have stopped because they do not have personal protective equipment (PPE) and do not feel safe for themselves and their patients. Two hospices reported that they only do a home visits very selectively” Kenyan Hospices Palliative Care Association, national hospice survey Feb 2020
“The importance of local community connections is being highlighted during this time. A social enterprise that was set up to enable women to produce textile items for sale, has turned its production to make face masks. The social enterprise has donated 1,000 masks to Hospice Ethiopia for staff safety. Hospice Ethiopia has purchased further masks, and plans to donate these to patients admitted in to the palliative care units of Tikur Anbesa Hospital and Zewditu Memorial Hospital.” Ethiopia, April 28 2020
There is a concern about access to palliative care and COVID-19 medicines. Palliative care medicines, including opioids, are needed to manage the pain and symptoms of people with existing palliative care needs and the symptoms of those with COVID-19, in particular severe breathlessness., Without opioids, management of severe breathlessness is difficult if not impossible. However, they are often not available and accessible in low and middle income countries. The International Narcotics Control Board has called for global supply chains to be protected to meet need and for governments to ensure maintenance of sufficient stocks and civil society, a call supported by academia and civil society working in palliative care. However, we are concerned that this is not happening. We are also concerned about the risk of an escalation of costs of generic medicines such as morphine and call for pooled purchasing platforms including accessible information on price points.
“The International Narcotics Control Board is calling on governments to ensure that the international supply chains of controlled substances, such as pain relief medicines, are not disrupted by measures put in place to counter the COVID-19 pandemic and contain further transmission of the virus.” International Narcotics Control Board, 17 March 2020
“In acute emergencies, it is possible to use simplified procedures for the export, transportation, and provision of opioid medications” 12 Radbruch et al
As health systems struggle with COVID-19, communities and community organisations care for each other, including those with serious illness, disabilities and those facing the end of life. Many people are at home, often unable to access health or social care support, and human connections are critical. Women and girls in particular are crucial in community responses and need to be supported and protected themselves. Working as equal partners with formal health systems, compassionate communities and community organisations need to be acknowledged, resourced, supported and protected to care for each other and ensure those with serious illness of all ages are not left behind.
People with palliative care needs are often a hidden population. This means that their views and voices are often not heard. During the COVID-19 crisis, people with palliative care needs globally, especially older people, are particularly at risk and vulnerable. Now more than ever it is crucial that the voices of people with palliative care needs are heard during the development of policies, programmes and financing decisions. They are clear on what is needed for them. Provide information so those with pre-existing palliative care needs can stay safe. Ensure continuity of care. Listen to their wishes. Do not impose blanket ‘Do not resuscitate’ orders. Ensure they can access the medications they need. Protect people’s essential needs including housing, food and water, ensuring their own financial sufficiency. Enable people with palliative care needs, including children and older people, to be accompanied by loved ones in health care settings and at the end of life. They must not be a hidden population.
Ethics and resources allocation Health systems with low capacity including an absence of ventilators may be forced to undertake decision making around who receives treatment. We strongly support the allocation of resources using the principles of justice and beneficence including discussions with the person affected around what they want and need. Any rules governing allocation of scarce resources must be inclusive (including of the most vulnerable and affected), transparent, enable accountability and consistent. We are deeply concerned and reject the use of universal do-not-resuscitate orders as decision making should be focussed on individual care needs.
2a. Access to palliative care medicines
The UK government has stopped parallel exports of essential medicines including morphine which is essential for the treatment of COVID-19 patients with severe breathlessness. As one of the major global exporters in morphine and other palliative care medicines, we are seeking reassurance that the UK will expand its manufacturing and exporting of essential, affordable medicines and maintain the global supply chain in line with INCB recommendations. This is in line with requests from INCB and others. This needs to be done in parallel with a focus on the training of health care workers.
Recommendation 2a: The UK government maintains the global supply chain of palliative care medicines, including controlled medicines, to meet need.
2b. Financing of palliative care
The UK government is committing significant funding. This funding for civil society is largely going to pre agreed organisations who are part of the Rapid Response Facility. There are some opportunities for existing grantees to access funding but more open and transparent methods of delivering resources to those at the grassroots tackling the crisis is needed. We have seen little evidence that the majority of organisations within the RRF are working to ensure palliative care is mainstreamed in the response. Whilst DFID has opened up a grants round for existing grantees of which palliative care organisations are included, we have seen little further evidence that DFID recognises and is reacting to the importance of ensuring access to palliative care for people with COVID-19.
Recommendation 2b: The UK government ensures financing for the mainstreaming of palliative care in the response to COVID-19 in LMIC and the maintenance of existing services.
2c. Policy and leadership on palliative care
The UK is the home of palliative care and is repeatedly recognised as a world leader in this area. It has an important, potential leadership role given the current international leadership vacuum on this issue. Working with the WHO and countries such as Bangladesh, Zimbabwe, Kenya and Zambia where the need for palliative care is understood by governments, the UK could provide financing and technical assistance to support countries to alleviate suffering, including at the end of life. An example is the EU resolution for the WHA on the COVID-19 response. The zero draft contained no reference to palliative care, despite the fact that most EU countries, including the UK, have integrated palliative care into their own responses. The UK could demonstrate much stronger leadership in this area and contribute to building back better health systems globally that integrate palliative care for all who need it as part of UHC.
Recommendation 2c. The UK demonstrates leadership on the issue of palliative care in all policy dialogue globally and bi-laterally.
WHPCA response to IDC Inquiry: Humanitarian crises monitoring: Impact of Coronavirus – May 12 2020
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 Radbruch et al (2020) The key role of palliative care in response to COVID-19 tsunami of suffering in The Lancet
 Knaul et al (2018) Lancet Commission on Palliative Care and Pain Relief
 Preliminary findings from use of the Washington Group questions in the Narayanganj City Corporation and Korail Project in Bangladesh, 2019
 Ehospice articles on palliative care during lockdown in Bangladesh (website accessed May 8th 2020) https://ehospice.com/international_posts/the-power-of-social-media-palliative-care-during-lockdown-in-bangladesh/
 A survey of hospice and palliative care units in Kenya. Published April 2020 by Kenyan Hospices Palliative Care Association. Survey undertaken in March 2020.
 Lovell et al Characteristics, symptom management and outcomes of 101 patients with COVID-19 referred for hospital palliative care
 Recommendations for symptom control for patients with covid19 http://globalpalliativecare.org/covid-19/uploads/briefing-notes/brieifing-note-recommendations-for-symptom-control-of-patients-with-covid-19.pdf
 Webinar on clinical issues and covid-19 in relation to palliative care. Response to question by Professor Lukas Radbruch. Available here: https://www.thewhpca.org/covid-19/webinars/item/global-palliative-care-series-webinar-1-may-clinical-and-prevention-aspects-in-covid-19-video
 Knaul, Felicia M., et al. "The Lancet Commission on Palliative Care and Pain Relief—findings, recommendations, and future directions." The Lancet Global Health 6 (2018): S5-S6.
 Pettus, K et al (2020) Availability of international Controlled Essential Medicines in the COVID-19 Pandemic, Journal of Pain and Symptom Management (2020), doi: https://doi/10.1016/j.jpainsymman.2020.04.153
 Radbruch et al (2020) The key role of palliative care in response to COVID-19 tsunami of suffering in The Lancet
 International Narcotics Control Board Press Release on website (Accessed May 8th 2020) https://www.incb.org/incb/en/news/press-releases/2020/incb-calls-on-governments-to-ensure-continued-access-to-controlled-medicines-during-the-covid-19-pandemic.html
 Drawn from a draft briefing note on palliative care and COVID-19 written by people with pre-existing palliative care needs. This will be published here: http://globalpalliativecare.org/covid-19/
 Radbruch et al, 2020 The key role of palliative care in response to the Covid-19 tsunami of suffering. The Lancet
 Pettus et al Availability of Internationally Controlled Essential Medicines in the COVID-19 Pandemic, Journal of Pain and Symptom Management (2020), doi: https://doi.org/10.1016/j.jpainsymman.2020.04.153