Palliative care in the time of the Coronavirus

 

This page will be listing publications at the intersection of Coronavirus and palliative and end of life care. For now they are organised only chronologically.

 

Please send links to resources to Mila Petrova at mp686@medschl.cam.ac.uk or any member of the Cambridge Palliative and End of Life Care Group.

 

Publications:

 

“Palliative care interventions should be made accessible at each institution that provides care for persons with COVID-19.” (p. 46)

 

73rd World Health Assembly. COVID-19 Response. WHA73.1. 19 May 2020; accessed 22 Jun 2020 – the document calls for the intensification of cooperation and collaboration in response to the COVID-19 pandemic, with “key leadership” of the WHO, “fundamental role of the United Nations System” and “the central efforts” of Member States. It explicitly mentions palliative care, alongside safe testing and treatment (p.4)

 

Nadig A. Palliative care: a crucial part of any COVID-19 response – a blog by Aninia Nadig, Sphere’s Policy and Practice Manager. 29 May 2020; accessed 08 Jun 2020.

Palliative care has been included for the first time only in the latest Sphere Handbook (2018). The latter is “one of the most widely known and internationally recognised sets of common principles and universal minimum standards in humanitarian response”. Any mention of palliative care in official communications of Sphere carries extra significance with a view to its increasing incorporation into the global humanitarian response.

 

Compassion in Dying. Webinar. Important Conversations: Is coronavirus a watershed moment for DNACPR? 11 Jun (Thur) 3:00 – 4:30 London. Register here. A little over 30 places remaining as of 8th Jun 20.

“Despite years of concerted efforts by healthcare professionals, campaigners and voluntary sector organisations to dispel myths around DNACPR decisions and promote a shared understanding between the public and clinicians, it seems that the disconnect between both groups has never been starker.”

“As one of our speakers, Kate Masters, prepares to launch legal action against the Secretary of State for Health and Social Care by calling for accurate and accessible national guidance regarding cardio pulmonary resuscitation (CPR) to be made available as a matter of urgency, it is vital that opportunities to promote a better understanding of CPR decisions are not missed.”

Speakers:

• Kate Masters, Advocate and person with lived experience taking judicial review against Secretary of State for Health

• Dr Zoë Fritz, Consultant in Acute medicine, Wellcome Fellow in Society and Ethics, Cambridge University and University Hospitals, lead on the ReSPECT process

• Professor Martin Green, Chief Executive, Care England the largest representative body for Care Homes in the UK

• Edward O’Brian, Macmillan Paramedic , End of Life Care Lead, Welsh Ambulance Services NHS Trust

• Dr Mark Taubert, Consultant in Palliative Medicine and founder of the Talk CPR campaign

• Upeka de Silva, DNACPR Project Lead, Compassion in Dying

 

Global Palliative Care Series webinar 7: Palliative Care in Covid-19 for persons with disabilities and in humanitarian crises – 4th June (Thursday), 12noon UTC/GMT. Joint initiative of the four main global palliative care organisations: WHPCA, ICPCN, IAHPC and PalCHASE. Register here.

Speakers: Mhoira Leng, UK: Cairdeas International Palliative Care Trust, Makerere and Edinburgh University; Megan Doherty, Canada: University of Ottawa and World Child Cancer; Annemarie Oberholzer, South Africa: University of South Africa; Ashla Rani, India: Pallium India; Rachel Coghlan, Australia: Deakin University.

 

First You. Caring for those who care for us. A hand-picked collection of wellbeing resources for healthcare workers. Accessed 25 May 2020 – the Working through grief subset also contains COVID-19-specific resources.

 

[The people behind the numbers] BBC News. Coronavirus: Your tributes to those who have died. 20 May 2020; accessed 25 May 2020 – a webpage of tributes to people who have died during the pandemic. The tributes are displayed at random, meaning that one will see different faces at each visit. Over 88 hours are (currently) needed to see all tributes.

 

Hopkins SA, Lovick R, Polak L, Bowers B, Morgan T, Kelly MP, Barclay S. Reassessing advance care planning in the light of covid-19. Editorial. BMJ 2020;369:m1927. Published 18 May 2020; accessed 22 May 2020.

“Covid-19 guidance on advance care planning has largely focused on its product: a plan recording an individual’s treatment preferences. Yet evidence suggests that some of the main benefits that frail patients and their loved ones experience from advance care planning are strengthened relationships with each other and their clinical teams, and support through the experiences of living and dying with frailty and bereavement.”

“These benefits come largely from the conversations that constitute the planning process, particularly when these occur over time and include the patient’s family and loved ones.”

“The consequences of focusing on the plan rather than the process have already been witnessed in the UK pandemic. Some care home residents have been sent standardised letters asking them to specify their treatment preferences without having had individual conversations with their clinicians. This has caused understandable confusion and distress, raising concerns about denial of treatment.”

“We suggest that advance care planning should focus on encouraging people to voice their concerns and priorities, providing the information they want, and facilitating conversations between loved ones at this emotionally and logistically difficult time.”

“For some, such conversations might sensitively enable an understanding of the possibility of dying in the near future and help to identify goals and priorities for treatment and care. This might result in people declining certain treatments or being gently told that some treatments would be medically inappropriate.”

 

Carrieri D, Paccatori FA, Boniolo G. COVID-19: a plea to protect the older population. International Journal for Equity in Health 2020; 19:72 – the paper does not discuss palliative care directly, but develops an ethical argument concerning one of its key populations, also highly relevant in view of proposals for palliative care to be offered to those deprioritised for scarce intensive care resources.

“We are not claiming that age parameters should not be considered while facing the allocation of scarce sources. Our aim is to strongly oppose the idea of setting an a priori age cut-offs to decide who should get access to healthcare, as such ideas discriminate against older people. We believe that, especially during the COVID-19 pandemic, there is the need to focus on this issue, since there are some initial signs of such discrimination.”

“Thus, we wish to show how these discriminatory phenomena can cause severe negative outcomes not only from the moral standpoint of respect for dignity and autonomy of older people, but also from the utilitarian perspective of achieving the greatest good for the greatest amount of people.”

 

Coghlan R. Suffering, scared, alone and dying. Why the COVID-19 humanitarian response must include leadership in palliative care. Centre for Humanitarian Leadership (Deakin University, Australia) blog. 18 May 2020; accessed 18 May 2020.

“The editorial ‘Palliative care ought to be an explicit part of national and international response plans for COVID-19’ was published in the Lancet in early April, drawing attention to the World Health Organisation’s oversight for failing to include palliative care in COVID-19: Operational guidance for maintaining essential health services during an outbreak.”

“The UN Office for the Coordination of Humanitarian Affairs has released the humanitarian sector’s overall Global COVID-19 Response Plan. Palliative care is not included in its strategic priorities alongside other health mitigation and response measures—another serious omission.”

“Humanitarian organisations must deliberately include palliative care in country-specific COVID-19 plans. Increasing health resources should not be limited to the supply of Personal Protective Equipment or life-saving measures such as ventilators or intensive care beds; it must also include the medicines and staff necessary to care for patients at the end-of-life.”

 

Ali Z. Together we can – the need for palliative care services to join forces in times of COVID-19. European Association for Palliative Care blog. 18 May 2020; accessed 18 May 2020 – blog on the experience of Kenya by Dr Zipporah Ali, Chief Executive Director of Kenya Hospices and Palliative Care Association (KEHPCA).

 

[The Professional is Personal] Hoffman J. ‘I Can’t Turn My Brain Off’: PTSD and Burnout Threaten Medical Workers. The New York Times, 16 May 2020; accessed 18 May 2020.

 

Royal College of Nursing. Consultation guidelines (End of life care): Having Courageous Conversations by Telephone or Video, during the COVID-19 Pandemic. 10 Top Tips. 16 Apr 2020; accessed 15 May 2020.

“These guidelines have been developed to support nursing staff who are having to initiate challenging and courageous conversations remotely. They have been designed using the principles for having such conversations in a face to face setting but with the need to do this remotely over the phone or potentially by video.”

“Pre-checks to consider may include how this is completed (for example, for hard of hearing/English not a first language/cognitive impairment etc.). Acknowledging the difficult time frames we have available to undertake these challenging conversations we have condensed them in to 10 Top Tips.”

 

Campaign to End Loneliness: Connections in Older Age. Copying with loneliness and bereavement during COVID 19. 12 May 2020; accessed 15 May 2020 – blog on a virtual event run by the Campaign to End Loneliness which addressed the complex entanglement of bereavement being a cause of loneliness in itself, now exacerbated by social isolation-related reasons for loneliness.

“Grief has always been presented in the research as stages of grief, most popularly by Kubler Ross’ ‘5 stages of grief’. However, more current thinking suggests this is outdated and, while helpful for some, most find it an unhelpful measure of comparison that doesn’t reflect the reality of grief.”

 

StoryLab, Anglia Ruskin University. The Frontline (accessed 14 May 2020) – digital archive of stories, images, artwork, etc. of health care professionals and associated key workers. Does not yet have a contribution from a palliative and/or end of life care professional, but some contributions touch on related issues.

“The Frontline project is a digital archive established to collect and empower the voices of health care professionals and associated key workers during the Covid-19 pandemic.”

“If you are a health care professional or associated key worker, we would love for you to contribute your voice to the digital archive through video, images, sound, words or artwork.”

 

 

Dying Matters Week, 11-17 May 2020 (UK). Dying to be heard: End of life care for people who are homeless. Webinar. 13 May (Wednesday), 3:30 pm (London) – the brief below does not mention explicitly COVID-19, but it is hard to imagine the topic ignored. Register here.

“We will discuss the needs and experiences of people who are homeless with advanced ill health who may be approaching the end of their lives. This is a challenging and emotive area of work particularly for frontline staff who are often left to support people as their health deteriorates.”

Webinar panel members: Dr Caroline Shulman, GP in Homeless and Inclusion Health, Kings Health Partnership Pathway Homeless team and Honorary Senior Lecturer, UCL; Niamh Brophy, Homeless Palliative Care Coordinator, St Ann’s Hospice, Manchester; and Andrew Knee, Palliative Care Coordinator for St. Mungo’s.

 

Department of Health & Social Care (UK). Coronavirus (COVID-19): verifying death in times of emergency. Guidance. 5 May 2020; accessed 11 May 2020.

“This guidance is designed to clarify existing practice for the verification of death outside of hospitals and to provide a framework for safe verification of death in this coronavirus (COVID-19) emergency period.”

General considerations for clinicians who provide remote clinical support for verifiers (direct quotes):

• it’s important that you have enough time to carry out this procedure in a compassionate manner
• the below steps should be recorded in your organisation’s host IT system
• be aware of any cultural or religious requirements
• identify the person verifying and their role
• ensure the verifier has considered privacy and dignity prior to verifying – such as ensuring only essential persons are in attendance or checking with family whether they wish for only persons of the same sex to verify the body
• establish the circumstances immediately prior to the death and any patient history. You, and the verifier, need to be satisfied that there is no reason to refer this death to the police or coroner

 

NHS England and NHS Improvement. Advance care planning guidance and template. Guidance and template in the context of coronavirus (COVID-19). Version 2, 5 Apr 2020; accessed 07 May 2020 – a simple template that is also clearly worded for patients and feels personal, e.g.:

 

Coghlan R. The COVID-19 pandemic: what communities living through humanitarian crisis can teach us about compassionate care. CareSearch Blog: Palliative Perspectives. 06 May 2020; accessed 06 May 2020 – a blog on the role of community support in palliative care during humanitarian crises, with parallels drawn between the long-standing crisis in Gaza and the current COVID-19 pandemic.

The blog also touches upon the “compassionate communities” framework from public health palliative care. Australian webpage on compassionate communities (referenced in blog) here; UK page here, with COVID-19 resources on the UK page here.

 

Bear L, Simpson N, Angland M, Bhogal JK, Bowers RE, Cannell F et al. A Good Death’ During the Covid-19 Pandemic in the UK. A Report of Key Findings and Recommendations. LSE Anthropology. Undated (data collected Apr 2020); accessed 05 May 2020 – a report on the good death (or “good enough death”) informed by an anthropological perspective based on a public survey and 58 cross-communities interviews.

Addresses “five moments in the process of death”: pre-admission, hospital admission, disposal and release of the body, funerals and bereavement. Interviews conducted with officiants and leaders from the main UK faith communities (and other communities defined in terms of their stance on God or particular local variations of observing religious rituals): Christian, Northern Irish, Muslim, Jewish, Sikh, Hindu, Non-faith (Humanist, Agnostic, Atheist). Succinct and informative descriptions of the perspectives on and adaptations to COVID-19, in relation to death and dying, of the different religions and belief frameworks.

A briefer section on the perspectives of members of vulnerable communities (South Asian Hindu and Muslim communities; Christian and Muslim African and Afro-Caribbean communities; single mothers) and/or of staff providing services for them (mental health and domestic violence service providers).

 

Widgit and Weston General Hospital Speech and Language Therapy Team. Critical Care Covid-19 Communication Chart. To help patients communicate in hospital and critical care – symbol board, available for download in almost 40 languages. Undated; accessed 04 May 2020.

“Developed together with the Speech and Language Therapy Team at Weston General Hospital, this symbol board can assistmedical staff in communication with patients who are critically ill due to Covid-19. It can make communication possible even if the patient is being ventilated or has a tracheostomy (but is alert).”

“The board includes symbols for immediate care needs as well as messages that patients may want to pass to familymembers. Please also consider using this chart if patient is considered to be end of life.”

 

“This guidance sets out a small set of key medicines for palliative and end of life care that need to be managed nationally with local collaboration across all sectors.”

 

Initiative led by the Worldwide Hospice Palliative Care Alliance to amend the EU draft resolution on Covid-19 to be discussed at the World Health Assembly, which currently has no reference to palliative care.

 

NHS England and NHS Improvement. Clinical guide for the management of palliative care in hospital during the coronavirus pandemic: Keeping the care in healthcare. Version 2, 22 Apr 2020; accessed 30 Apr 2020.

 

WEH (Wellcome Centre for Ethics and Humanities)/Ethox Seminar with Dr Zoë Fritz, Consultant Physician and Wellcome Fellow in Society and Ethics, University of Cambridge. Resuscitation decisions and discussions: can we get it right in a climate of fear?

06 May (Wednesday) 2020, 2.30pm to 4pm (London).

To register: email admin@ethox.ox.ac.uk for the link to the meeting.

 

Yardley S and Rolph M. Death and dying during the pandemic. Editorial. BMJ 2020; 369:m1472. Published 15 Apr 2020; accessed 29 Apr 2020.

“Governments together with faith leaders have developed guidance for safe funerals, including restrictions on the number and relationship of mourners, and those allowed to conduct rituals requiring close contact with the body. These restrictions conflict with collective and symbolic responses to a person’s death usually enacted to demonstrate the endurance of society and its values.”

“Time spent developing appropriate, flexible, approaches to death and bereavement during the pandemic will more than repay the investment. Examples might include identifying people who could be quickly trained in PPE and clear communication methods to liaise between healthcare professionals and families if clinician time is short or putting in place transparent measures to ensure that patients will not die alone if restrictions or limited supplies of PPE prevent visits.”

“We must also take care with the language we use. Ambiguous terms such as “ceiling of care” should be avoided—care is always given, even when a patient’s interventional treatment plan reaches its limit.”

 

Department of Health and Social Care, NHS England and NHS Improvement. Coronavirus (COVID-19): reuse of medicines in a care home or hospice. Guidance. 28 Apr 2020; accessed 28 Apr 2020.

“Under usual circumstances, the re-use or recycling of another patient’s medicine is not recommended by the Department of Health and Social Care (DHSC)”

“However, there are increasing concerns about the pressure that could be placed on the medicines supply chain during the peak of the COVID-19 pandemic. A medicines re-use scheme for care homes and hospices could potentially ease some of that pressure in the coming weeks.”

“Three key indicators should inform the risk assessment and the subsequent decision:

• No other stocks of the medicine are available in an appropriate timeframe (as informed by the supplying pharmacy) and there is an immediate patient need for the medicine.
• No suitable alternatives for an individual patient are available in a timely manner i.e. a new prescription cannot be issued, and the medicine(s) supplied against it in the conventional manner quickly enough.
• The benefits of using a medicine that is no longer needed by the person for whom it was originally prescribed or bought, outweigh any risks for an individual patient receiving that unused medicine.”

“Re-use should only be within a single care home/hospice setting; medicines identified for re-use should not be transferred to another care home or hospice, even those within the same parent organisation.”

“To ensure re-use of medicines is an option that can be used as flexibly as possible we suggest that care homes and hospices proactively seek written permission from all patients for:

• their medicines (if no longer needed) to be made available for other patients and/or
• them to receive a re-used medicine, provided they are deemed safe for re-use.”

 

HelpAge International. Coronavirus (COVID-19) resources, accessed 27 Apr 2020 – no substantive mention of palliative care (or no easily identifiable one), but this is a rich COVID-19 resource of a global organisation that works with older people in over 85 countries, including offering palliative care (e.g. HelpAge India).

 

 

Bowers B, Pollock K and Barclay S. Administration of end-of-life drugs by family caregivers during covid-19 pandemic. Editorial. BMJ 2020;369:m1615. 24 Apr 2020; accessed 24 Apr 2020.

“Prescribers are now being asked to consider drug administration by family caregivers when community nurses and doctors are not available to administer end of life drugs in a timely way. Family caregivers willing to take on this role should be adequately trained and responsively supported with access to 24 hour phone advice.”

“Prescriptions may need to include drug formulations that family caregivers can administer buccally, sublingually, or rectally, in addition to the subcutaneous injection route, as these are easier for non-professionals.”

“There is good evidence for the effectiveness of subcutaneous injections of drugs such as opioids and midazolam at the end of life. The buccal and sublingual routes are much less commonly used, however, and their limited evidence base comes primarily from professional experience and paediatric palliative care. Both rectal and buccal routes in covid-19 carry the risk of transmitting infection.”

“Clinicians often worry that they may have hastened death if a patient dies shortly after drug administration. This anxiety may be even greater for family caregivers, with some worrying that it amounts to euthanasia.”

“Increasing demand for drugs to control symptoms is also affecting prescribing decisions. The dilemma is whether to continue to prescribe anticipatory medications ahead of expected death, risking exhausting pharmacy supplies, or to delay until a patient is clearly dying.”

 

Hasselaar J, Vissers K, Mercadante S, Centeno C, Payne S, Preston N, Radbruch L, van der Lee M, Csikós A and Menten J, on behalf of the Palliative Sedation Consortium. Palliative sedation in the context of COVID-19: Expert opinions from the Palliative Sedation project. EAPC Blog. 20 Apr 2020; accessed 23 Apr 2020.

“Midazolam is widely recommended as a first-line medication for palliative sedation because it is relatively easy to titrate due to its fast onset of action and short half-life. However, we are aware of situations in hospitals, e.g. in the Netherlands, Spain, Switzerland, and elsewhere, where other demands are exhausting their supply of midazolam.”

“In the Netherlands and in Spain, levomepromazine is recommended as a second-line drug and can be used as an alternative for midazolam. But we are also hearing about the use of diazepam and other benzodiazepines for this purpose.”

“Early experiences are that sedation trajectories are relatively brief and that lower dosages may be sufficient. In case the availability of subcutaneous/intravenous infusion pumps is currently limited, medication can be administered by repeated bolus injections. Availability and use of personal protective equipment (PPE) is pivotal when caregivers need to enter the room.”

 

Millington-Sanders C. Providing palliative care in a pandemic. The BMJ Opinion. 21 Apr 2020; accessed 23 Apr 2020.

“The second pattern of dying from covid-19 infection, is nothing short of horrific and haunting for all involved with a patient changing from unwell to dying in only a few hours. If no advance care plan is in place, at this stage it’s extremely unlikely you will get the chance to discuss their preferences for care.”

“My plea to community multi-professional teams is: Be prepared both medically and mentally. Medically, you need to know how best to rapidly relieve suffering for people dying from covid-19.  Mentally, you need to support those as they die, those left behind, yourself and colleagues”

“Where possible, have immediate access to key medications and know your Community End of Life Care Symptom Control Guidance and specifically how to titrate up required medications such as morphine, midazolam, levomepromazine until clinically effective. Know your specialist 24/7 advice line number, for example, your hospice.”

 

CareSearch (Australia). COVID-19 resources for GPs and Primary Care. Care of the dying and seriously ill – an extensive collection of both Australian and international resources. Last updated 06 Apr 2020; accessed 22 Apr 2020.

 

Cambridgeshire and Peterborough Clinical Commissioning Group (UK). Palliative Care Prescribing – COVID-19 updates and Pharmacy Emergency Palliative Medicines Service information. Last updated document 20 Apr 2020; accessed 21 Apr 2020.

COVID-19 updates include (download documents here):

• 1-page Guidance for family or friends on giving medication (COVID Advice sheet for family and friends), 20 Apr 2020;
• End of Life Care update for GPs (focus on buccal and sublingual meds), 1 Apr 2020;
• Flowchart (Community End of Life Care) on Clinical Guidance for Covid 19 Patients, 3 Apr 2020;
• Guidance on the management of symptomatic adults dying from COVID-19, 20 Apr 2020;

Pharmacy Emergency Palliative Medicines Service update includes (download documents here):

• Obtaining End of Life Medicines written on a FP10 during COVID-19, Apr 2020;
• Palliative Care Scheme Pharmacy Opening Hours, Apr 2020;
• Stock Availability (Palliative Care Medicine Scheme – Stock Availability), 17 Apr 2020;
• Stock list (Essential Drugs Required for Palliative Care Scheme), Apr 2020.

 

Marie Curie, Royal College of Physicians of Edinburgh, Academy of Medical Royal Colleges and Faculties in Scotland, Scottish Care. Patients and Family at the End of Life: Implications of COVID-19. April 2020; accessed 20 Apr 2020.

The Lancet (Editorial). Palliative care in the COVID-19 pandemic. The Lancet 2020; 395(10231):1168.

“WHO has issued guidance on how to maintain essential health services during the pandemic, highlighting immunisation, maternal care, emergency care, and chronic diseases among others, but there was no mention of palliative care. This was an oversight. Indeed, palliative care ought to be an explicit part of national and international response plans for COVID-19.”

 

[The Professional is Personal] Goldstein J and Weiser B. ‘I Cried Multiple Times’: Now Doctors Are the Ones Saying Goodbye. New York Times, 13 Apr 2020; accessed 19 Apr 2020.

“One of the cruelties of Covid-19, the disease caused by the coronavirus, is that many patients may have just minutes to settle their affairs. With family members for the most part barred from visiting their loved ones, doctors often are left to facilitate such moments, full of emotion and tears. They are wrenching for physicians, too.”

 

 

Slim H. Moral multi-tasking in the COVID-19 response. The New Humanitarian, 15 Apr 2020; accessed 19 Apr 2020 – discusses the many layers of ethical quandaries and moral decision making around global aid in the COVID-19 context, with a mention of palliative care.

“[W]herever possible, the tragedy of triage must be mitigated by compassionate palliative care of some kind. Humanitarian response must stay with the dying while it saves the living.”

“In medical and social ethics, many aid workers are well informed from the earlier HIV/AIDS pandemic and the recent Ebola epidemics. But the COVID-19 crisis is only partly, and initially, a health crisis. It is now fundamentally a worldwide economic emergency.”

“The extent of the crisis may well mean that some of our staff prefer to opt out and be with their own endangered families during the peak of the pandemic. Agencies need to be open to enabling difficult decisions around dual loyalties.”

“Other staff may be genuinely fearful of infection but believe they have no choice but to keep earning. They need to know their agency is doing its best to protect them. The many staff and volunteers who are easily courageous and highly motivated must find the right balance in their behaviour between bravery and recklessness. True courage is well judged, purposeful, and selfless.”

 

Selman L. How coronavirus has transformed the grieving process. The Conversation, 17 Apr 2020; accessed 18 Apr 2020.

“[A] wave of grief will swell in the coming months, with more and more people experiencing a close bereavement related to COVID-19.”

“Where visits are not possible, the use of smartphones, tablet computers and other forms of connection can also be a great comfort in enabling patients to communicate with friends and relatives. Some clinical services are even asking for donations of technology to help support these virtual methods of contact.”

“But great sensitivity is required. Clinicians from a Swiss hospital have cautioned against the use of virtual contact with families when a patient is dying, due to the distress this can cause. Research with bereaved family members has also found that witnessing a death in an ICU may be associated with greater symptoms of post-traumatic stress disorder.”

 

Resuscitation Council (UK). Statement: COVID-19 Family discussions and Clinical decision-making. 8 Apr 2020; accessed 16 Apr 2020.

(section “For the Public”) “If you are admitted to hospital during the COVID-19 crisis, the ReSPECT process may be used to help you understand and decide on the treatments you may or may not want to receive in an emergency and have these decisions recorded on a form which will be easily available to those assisting you in an emergency.

The ReSPECT process is now in place across 150 locations in the UK, but whether or not it is in place in your area, our advice is to be brave with your loved ones at this time.”

Further COVID-19-related statements of the Resuscitation Council here.

 

Palliative Care and COVID-19 Series led jointly by the 4 global palliative care organizations:

• International Association for Hospice and Palliative Care (IAHPC)
• International Children’s Palliative Care Network (ICPCN)
• Palliative Care in Humanitarian Aid Situations and Emergencies (PalCHASE)
• Worldwide Hospice Palliative Care Alliance (WHPCA)

Resources, including briefing notes and weekly webinars (first webinar here), to be made available on the International Association for Hospice and Palliative Care COVID webpages.

 

Time to Talk webinar: Health systems – how pandemics affect health systems and resource allocation: impact for palliative care. 17 Apr (Friday) 2020; 12:00 (noon) GMT. Register here.

The discussion will include issues specific to low-and-middle income countries with a focus on resources, cultural and social dynamics.

Panelists:

• Prof Liz Grant, University of Edinburgh
• Prof Felicia Knaul, University of Miami & Lancet Commission on Palliative Care & Pain Relief
• Dr Emmanuel Luyirika, African Palliative Care Association
• Dr Ednin Hamzah, Asia Pacific Hospice Palliative Care Network
• Smriti Rana, Pallium India Trust, Kerala.

 

Department of Health and Social Care (UK, document applies to England only). COVID-19: Our Action Plan for Adult Social Care. Version 1, 15 Apr 2020; accessed 15 Apr 2020 – see pp. 23-24 for end of life care.

“People in care homes and their families should be involved, as much as possible, in planning and decisions about their health and care, including end of life care, and should be supported in having honest, informed and timely conversations.”

“Whilst we have recommended care homes limit unnecessary visits, we are clear that visits at the end of life are important both for the individual and their loved ones and should continue.”

“It is unacceptable for advance care plans, including Do Not Attempt Resuscitation orders, to be applied in a blanket fashion to any group of people”.

“End of life care, including palliative care, must continue to be planned in a holistic way involving social care, community nursing, general practice, occupational therapy, and others”

“[W]orking with Samaritans and Hospice UK, a dedicated free to caller support helpline was launched for NHS staff – phone 0300 131 7000, or text FRONTLINE to 85258.

 

PalPrac. The Association of Palliative Care Practitioners in South Africa. Providing Palliative Care in South Africa During the COVID-19 Pandemic. Version 2, 5 Apr 2020; accessed 14 Apr 2020. Further PalPrac resources here: Alert Palliative Care and COVID-19

 

eHospice. UK’s first app for monitoring hospice patients at home launches. 6 Apr 2020; accessed 14 Apr 2020

“Weldmar Hospicecare in Dorset has launched an app for community nurses to monitor patients at home, the first app of its kind to be developed and launched in the UK.”

“The app enables a patient to use their own smartphone, tablet, or computer to complete a short daily questionnaire about symptoms such as pain, nausea and anxiety, as well as information about their mobility and dependence on others. When symptoms are rated as severe, additional questions and guidance will appear. For any patient without internet access, the questionnaire can be completed via a daily automated phone call.”

“Emma [Weldmar Community Nurse Emma Randall ] also explains that although it’s in the early stages of use, Weldmar Connect has been incredibly useful during Covid-19. It allows me to try and keep that rapport with patients, and helps them feel supported in these very difficult and challenging times. Visits have become less frequent and only happen when absolutely needed, so using the app helps them to feel like we are still very much a presence in their life, even if it is not in the physical sense.”

 

eHospice. Cake delivery service is a lifeline for hospice patients during the lockdown. 1 Apr 2020; accessed 14 Apr 2020 – describes the “Cake and Care” delivery service of Treetops Hospice Care (Derbyshire, UK), set up to support their most vulnerable patients after all day services were suspended.

“I couldn’t put in to words how delighted I was as I pulled each item out of the bag” she says. “It was like being a child on Christmas morning.” (Betty, 91)

 

Cambridgeshire and Peterborough Clinical Commissioning Group. Guidance for family and friends on giving medication (to patients who are seriously ill or at the end of their lives, as a further possibility for ensuring symptom control during the COVID pandemic).Version 3, 02 Apr 2020; accessed 13 Apr 2020.

 

“The Palliative Care team in Kerala has formed a task force to develop guidelines to support the Government initiative in combating COVID-19 crisis. Dr. Rajagopal and Dr. Suresh Kumar are the two experts from Palliative Care in the advisory body to the Government. The present document is the product of valuable inputs and discussion among national and overseas faculty.”

 

[The Professional is Personal]. Cuddy A. Coronavirus in New York: A paramedic’s diary. BBC News, 10 Apr 2020; accessed 12 Apr 2020 – a harrowing description of what Anthony Almojera, a senior paramedic in New York City, calls the toughest day of his 17-year career.

“It’s an Asian family who cannot believe their uncle has died. I see in their eyes they can’t believe it. They keep imploring me to do something, to take him to the hospital, and I tell them we couldn’t, even if we wanted to. The hospitals are not working on anyone who has no signs of life.

They keep saying “you have to save him, you have to save him”. The son asks why we can’t just start his heart again.”

“The things we see are sometimes difficult to shake. And with this, people are going to be different afterwards. There’s no way that the majority of EMS workers are going to come out of this happy-go-lucky. Maybe some of them will have these moments of clarity and appreciate the flowers and the sunrise, but for a lot of us, when we close our eyes, we’re going to see this.”

 

Etkind SN, Bone AE, Lovell N, Cripps RL, Harding R, Higginson IJ, Sleeman KE. The role and response of palliative care and hospice services in epidemics and pandemics: a rapid review to inform practice during the COVID-19 pandemic (pre-proof). Journal of Pain and Symptom Management, 27 Mar 2020; accessed 12 Apr 2020.

Key or unique points:

“It is likely that community palliative care may help prevent hospital admissions among people dying from COVID-19 who would prefer to remain at home or in their care home, though this has not been tested. However, the rapid escalation of breathlessness in patients with COVID-19 who develop acute respiratory distress syndrome (ARDS) may make this challenging.”

“Severe breathlessness and respiratory disease are both known to be associated with increased hospital admissions at the end of life. Therefore, rapid community response may be needed to manage advanced disease.”

“An alternative role for [hospice] volunteers may be in provision of psychological support for patients and carers which could occur by using digital technology or telephones. In light of the social distancing measures being widely employed in response to COVID-19, volunteers may have a wider role in supporting communities for example helping the most vulnerable with shopping for food and medicines.”

“Data collection systems to understand outcomes and share learning are important in a palliative pandemic response. However, these are frequently lacking. Such data should ideally include numbers of patients seen, as well as their main symptoms and concerns, treatments, effectiveness of treatment and outcomes. There is also a need to understand the prevalence of palliative care needs that are not met by palliative and hospice services.”

“In a pandemic expected to last for several months such as COVID-19, implementing systems of data collection early would help services to plan for and improve care, and could be used to project future needs.”

 

Arya A, Buchman S, Gagnon B, Downar J. Pandemic palliative care: beyond ventilators and saving lives. CMAJ 2020. doi: 10.1503/cmaj.200465; early-released March 31, 2020; accessed 11 Apr 2020.

Key or unique points:

“Patients should always have access to high-quality palliative care as a basic human right, but, in a triage situation, our obligation to provide palliative care for those denied life-sustaining measures is increased.”

“In 2008, the US Task Force on Mass Casualty Critical Care published a framework for mass casualty events that comprised “stuff,” “staff,” “space” and “systems,” which was adapted previously to the palliative care context. As experienced palliative care providers, we consider it important to add 4 additional elements: “sedation,” “separation,” “communication” and “equity”.”

“Palliative care providers should pay greater attention to patients who are marginalized. When the health care system is strained, systemic inequity will worsen.”

“In our opinion, palliative sedation is preferable to medical assistance in dying (MAiD) for patients with severe respiratory failure caused by SARS-CoV-2, given the 10-day reflection period, number of witnesses and assessors required, and the current requirement for full capacity to determine eligibility for MAiD. Attempting to honour an urgent MAiD request is likely to prolong suffering in those who are imminently dying.”

“People facing poverty, discrimination, language barriers and historical trauma are least able to self-advocate and are at a greater disadvantage when facing difficult decisions about resource allocation. These patients are aware of this; studies have shown that they fear not getting access to life-sustaining treatments and may be judged as less deserving of care. Palliative care thus becomes the compassionate option to counterbalance this inequity.”

 

The World Organization of Funeral Operatives website, accessed 10 Apr 2020 – the Members section lists organisations of funeral operatives in almost 80 countries, many of which have published COVID-specific guidance on their websites.

 

Age UK. Arranging a funeral – coronavirus advice. Last updated 07 Apr 2020; accessed 10 Apr 2020.

 

[Our patients] Jackson C. Coronavirus: Family’s heartbreak over life support dad. BBC News website. 09 Apr 2020; accessed 10 Apr 2020 – the heart-breaking personal stories behind the statistics. Also describes how staff at the ICU unit use photos to help them know a little more about the person they are caring after.

“The hospital consultant phoned me yesterday and asked me if I’d like to send him some photographs of my husband with his family.

He suggested getting them laminated and placed around his intensive care bed. He looks peaceful, like he’s sleeping, but a ventilator is the only thing keeping him alive.

“It can be dehumanising,” the consultant said, and besides, it would help the medical staff know a little more of the person they were nursing.”

“The photos here and the laminated ones around his hospital bed are our only way of saying he is the best and that our hearts are breaking over and over and over.”

 

Blake H and Bermingham F. Psychological Wellbeing for Healthcare Workers. Mitigating the impact of COVID-19 on Psychological Wellbeing. Version 1.0. Last updated 02 Apr 2020; accessed 09 Apr 2020 – online training resources (87 slides, with embedded videos and further reading). Section on “Manage Emotions” also covers Coping with Grief and Death.

 

Field-Smith A and Robinson L. Palliative Care Team, West Middlesex Hospital (UK). Talking to relatives: A guide to compassionate phone communication during COVID-19 (1-page resource). Undated, accessed 09 Apr 2020.

 

“Sudden” resources on COVID-19 bereavement (accessed 08 Apr 2020) – “Sudden” is a charitable initiative which supports people bereaved by sudden death. In the present circumstances, it may be COVID-19, but it can also be “other communicable diseases or undiagnosed medical conditions, suicide, road crashes, terrorism and conflict, natural disasters and drownings, and accidents in the workplace and home”.

Includes a rich set of resources, including a global bereavement directory of organisations which can provide support in bereavement in:

• Africa – Botswana, Namibia and South Africa – 1, 2;
• Australasia – see Sudden directory for 8 organisations in Australia and 9 in New Zealand;
• Europe – France for English-speaking residents, Germany, Switzerland in English, and go to Sudden directory for 27 UK organisations;
• North America – see directory for 4 organisations in Canada and 7 in the US.

 

National Library of Medicine. LitCovid –  “a curated literature hub for tracking up-to-date scientific information about the 2019 novel Coronavirus”; central access to a growing collection of articles in PubMed. Search on “palliative” returns 7 publications as of 7 Apr 2020, but this is likely to be the most reliable and comprehensive source of peer-reviewed publications on palliative care in COVID-19 times.

 

Royal College of General Practice (UK). RCGP Learning. COVID 19 Resource Hub. Ethical Guidance on COVID-19 and Primary Care. Sections 10 and 11. Last modified 6 Apr 2020, accessed 07 Apr 2020.

Sections 10 and 11 in the Frequently Asked Questions (FAQs) concern end of life care: 10. Who should be doing Anticipatory Care Planning (ACP) and how? Should it be done by clinicians who know the patient and are remote conversations ok? and 11. Should Anticipatory Care Planning (ACP) include specific questions on care for COVID-19 (e.g. intubation) versus admission for other conditions? 

 

Brazilian Academy of Palliative Care (ANCP) COVID-19 resources. Accessed 07 Apr 2020 – resources (in Portuguese) created by the Crisis Committee on COVID-19 convened by the Brazilian Academy of Palliative Care. Include guidelines for patients, families and palliative care teams. COVID-specific episodes have also been released on PalliCast, the podcast of the ANCP, with a new episode available every week.

 

[Our patients] Lucy Watts. Coronavirus: ‘I know my life will not be saved in this pandemic’. BBC News website, 06 Apr 2020; accessed 06 Apr 2020 – blog by the disability advocate who has a life-limiting condition, including multiple organ failure and restrictive lung disease requiring 24-hour care.

 

[The Professional is Personal] Coghlan R. COVID-19: projecting compassion through the barrier of PPE. InSight+, 06 Apr 2020 – personal reflections on projecting compassion and providing emotional support through the barrier of a Personal Protective Equipment. By Rachel Coghlan, an Australian palliative care researcher and health professional, who has also recently conducted field work on palliative care in Gaza.

“The PPE may disguise countenance, restrict normal human touch, and create an unfamiliar gulf between you and your patient. Your eyes, your voice and your body language become your greatest assets. Use them to spread warmth and kindness. Make your eyes dance, your voice sing, your body show caring through the simple gesture of a thumbs-up sign, a pat on the shoulder or a little wave – even through your blue-gloved hand.”

“With expertise in addressing psychosocial and spiritual needs during times of crisis, palliative care teams have much to contribute in suggesting ways to improve human connectedness, supporting health workers to work compassionately through PPE, and helping health workers deal with stress and fear.”

 

Radbruch L and Bausewein C. The calm before the storm – Germany prepares for the corona deluge. EAPC (European Association for Palliative Care) blog. 06 Apr 2020; accessed 06 Apr 2020.

“In our palliative care services, right now it seems to be even more quiet than usual. The volunteer services have stopped visiting patients though they try to keep contact via telephone. The palliative home care services have also reduced the number of home care visits as much as possible, providing telephone advice instead. In most palliative care units, visits to patients are regulated and sometimes limited only to imminently dying patients.”

“There are the first signs of the impact of the pandemic. The husband of one of our patients in the palliative care unit lives in a nursing home, which has locked down according to social distancing regulations in our federal state. The nursing home staff told him that he cannot leave to visit his wife in the hospital, or he would be banned from coming back to the nursing home. Having nowhere else to go, he chooses to stay.”

 

 

White DB and Lo B. A Framework for Rationing Ventilators and Critical Care Beds During the COVID-19 Pandemic. JAMA. Published online March 27, 2020. doi:10.1001/jama.2020.5046. 

“Professional society guidelines² and some states’ recommendations exclude from access to ICUs large groups of patients with certain comorbid conditions, such as class III or IV heart failure, severe chronic lung disease, end-stage renal disease, and severe cognitive impairment.^2,3”

“This violates the principle of justice because it applies additional allocation criteria to some patients but not others, without making clear what is ethically different about the patients that would justify doing so.”

“Categorical exclusions are not necessary because less restrictive approaches are feasible, such as allowing all patients to be eligible and giving priority to those most likely to benefit.”

“Younger individuals should receive priority, not because of any claims about social worth or utility, but because they are the worst off, in the sense that they have had the least opportunity to live through life’s stages.”

“[W]hen mechanical ventilation is discontinued, expert comprehensive palliative care is imperative. Providing comfort at the end of life is difficult when patients with COVID-19 are in isolation precautions to prevent virus transmission. Family members of patients near death should be granted compassionate use of personal protective equipment if possible so that they can be with the dying patient. If this is not possible, hospitals should help families use videoconferencing technology to hold bedside vigils at a distance. Health care workers will also need emotional support.”

 

Waldman E and Glass M. A Field Manual for Palliative Care in Humanitarian Crises. Oxford University Press, 2019. 

• Chapter 1 Introduction: Why Palliative Care? Elisha Waldman and Marcia Glass
• Chapter 2 Palliative Care Needs of People Affected by Natural Hazards, Political or Ethnic Conflict, Epidemics of Life-Threatening Infections, and Other Humanitarian Crises Eric L. Krakauer, Bethany-Rose Daubman, Tammam Aloudat, Nahid Bhadelia, Lynn Black, Sanja Janjanin, and Farzana Khan
• Chapter 3 Practical Tips on Integrating Palliative Care Brett Sutton and Joan Marston
• Chapter 4 Pain Management Elisha Waldman and Stefan J. Friedrichsdorf
• Chapter 5 Dyspnea Meaghann S. Weaver
• Chapter 6 Gastrointestinal Symptom Management Gary Hsin
• Chapter 7 Delirium and Acute Anxiety Kevin Bezanson and Stephanie Rogers
• Chapter 8 Skin Conditions in Crisis Areas Marcia Glass, Carrie Kovarik, Mara Haseltine, Sandra L. Freiwald, and Susan Barbour
• Chapter 9 Care of the Dying Patient Megan Doherty and Joshua Hauser
• Chapter 10 Noncommunicable Diseases in Crisis Regions Sujatha Sankaran, Sriram Shamasunder, Marcia Glass, and Mhoira E.F. Leng
• Chapter 11 Palliative Care Emergencies in Humanitarian Crises David M. Williscroft
• Chapter 12 Pediatric Palliative Care in the Context of Humanitarian Crises Elisha Waldman and Justin N. Baker
• Chapter 13 Essential Medicines Catherine Habashy, Sarah L. Comolli, and Justin N. Baker
• Chapter 14 Communicating Bad News Meaghann S. Weaver and Michaela Ibach
• Chapter 15 Law and Ethics of End-of-Life Care in Humanitarian Crises Natasha Yacoub,Lisa Schwartz, and Kevin Bezanson
• Chapter 16 Cultural, Psychological, and Spiritual Dimensions of Palliative Care in Humanitarian Crises Peter Yuichi Clark, Denah M. Joseph, and Jessi Humphreys
• Chapter 17 A Trauma-Informed Response to Working in Humanitarian Crises: Focus on Providers Jessi Humphreys and Denah M. Joseph

 

VanGilder, E. St. Jude Children’s Research Hospital. Learn about the CORONAVIRUS. Colouring book – a colouring book for children aged 5-9, designed by Emily VanGilder of St Jude Children’s Research Hospital (Memphis, Tennessee, US) specialising in childhood cancer and other life-threatening diseases. Book downloadable from link above. More about its story in a USA today article.

 

Health Education England e-learning resource on End of Life Care in COVID 19. Updated 2 Apr 2020, accessed 3 Apr 2020 – includes click-through presentations, videos and supporting documentation.

 

Humanitarian Health Ethics Research Group. Alleviating suffering and upholding dignity in the midst of CoViD-19 response: A place for palliative care. 31 Mar 2020. Accessed 2 Apr 2020.

“This brief shares lessons drawn from a Research for Health in Humanitarian Crises (R2HC) funded study exploring ethical and practical dimensions of palliative care in humanitarian response. The project examined case studies from the West African Ebola crisis (Guinea), natural disaster responses (Haiti, Nepal, Philippines and others), and refugee settings (Jordan, Rwanda, Bangladesh).”

Key or unique points (direct quotes):

• Especially in moments where there is limited access to, or a need for rationing of interventions (i.e. critical care services, ventilators, oxygen), people must not be “left to die” without accompaniment and support.
• To the full extent possible, we need to support family members who desire to accompany their loved one who is dying, while attending to the public health imperative to prevent disease transmission.
• Hospitals and public health providers should designate teams, including religious and other specialists, to work with families, to find ways of ensuring that core aspects of the traditions that are meaningful to them can be upheld in ways that respect safety precautions.
• Ensuring transparency about the treatment of the bodies of those who have died is important to building and maintaining trust with affected communities, and to maintaining support for isolation measures.
• Evidence exists that providers with other expertise and lay health workers can and often already do play an important role in providing palliative care and psychosocial support to patients and their families.
• [Witnessing unaddressed pain and suffering] can lead to severe mental health consequences for providers, including a sense of failure and complicity in suffering, rather than a sense that they provided the best care possible in the circumstances.

 

Kelemen A, Altilio T and Leff  V. Specific phrases & word choices that can be helpful when dealing with COVID19. Serious illness conversations resource. Undated, accessed 02 Apr 2020 – thoughtful suggestions on compassionate phrases, actions and presence. Produced by US colleague, with anecdotal evidence of highly beneficial use in African context, too.

 

British Medical Association. COVID-19 – ethical issues. A guidance note. Mar 2020, accessed 02 Apr 2020 – only one mention of ‘end-of-life’, but a range of relevant issues around prioritisation in the context of scarce resources, withdrawing treatment and end-of-life care if treatment withdrawn/ withheld.

Key or unique points:

Application of strictly utilitarian standards

“[I]f demand outstrips the ability to deliver to existing standards, more strictly utilitarian considerations will have to be applied, and decisions about how to meet individual need will give way to decisions about how to maximise overall benefit.”

“Doctors would be obliged to implement decision-making policies which mean some patients may be denied intensive forms of treatment that they would have received outside a pandemic. Health professionals may be obliged to withdraw treatment from some patients to enable treatment of other patients with a higher survival probability.”

“This may involve withdrawing treatment from an individual who is stable or even improving but whose objective assessment indicates a worse prognosis than another patient who requires the same resource.”

“Although doctors would likely find these decisions difficult, if there is radically reduced capacity to meet all serious health needs, it is both lawful and ethical for a doctor, following appropriate prioritisation policies, to refuse someone potentially life-saving treatment where someone else has a higher priority for the available treatment.”

 

Decisions concerning specific groups

“Ethically, triage requires identification of clinically relevant facts about individual patients and their likelihood of benefiting from available resources. Younger patients will not automatically be prioritised over older ones.”

“By itself, infection with COVID-19 should not guarantee priority.”

“A simple ‘cut-off’ policy with regard to age or disability would be unlawful as it would constitute direct discrimination.”

“In relation to adults lacking capacity, these prioritisation decisions are not ‘best interests’ decisions under capacity legislation. … [T]here is no automatic priority for those who lack capacity and decisions about their treatment should be made in the same way as for all other patients requiring treatment.”

 

Best available end of life care

“Where a decision is made to withhold or withdraw some forms of treatment from patients on the grounds of resource allocation, it is crucial that those patients still receive compassionate and dedicated medical care and attention, as far as possible in the circumstances. This should include appropriate symptom management and, where patients are dying, the best available end-of-life care.”

 

British Medical Association. COVID-19: death certification and cremation during the coronavirus pandemic. Updated 1 Apr 2020. Accessed 2 Apr 2020.

“This guidance replaces existing BMA guidance on verification and certification of death and cremation for a temporary period during which emergency measures are in place to tackle the COVID-19 outbreak.”

Excerpt from the guidance for England and Wales:

 

Royal College of General Practitioners (UK). RCGP Learning. COVID-19 Resources Hub. Palliative Care. Last updated 31 Mar 2020. Accessed 1 Apr 2020.

• Millington-Sanders C and RCGP COVID-19 End of Life Care Advisory Group, for the RCGP and the Association for Palliative Medicine. Community Palliative, End of Life and Bereavement Care in the COVID-19 pandemic – a guide for general practice teams to symptom control when a person is dying from COVID19.

• Farquhar M, Ewing G and Grande G. NIHR ARC Palliative and End of Life Care Theme. Supporting Informal Carers during the COVID-19 Pandemic (1 page document) – issues that may arise for carers looking after COVID-19 patients.

• Royal College of Nursing, Marie Curie, Royal College of General Practitioners, Hospice UK. COVID EOLC Community Charter (1 page document) – best practice for palliative and end of life care during the pandemic.

Key principles: 1. Respect; 2. Minimise Harm (balancing the risks to patients, families, staff and staff families); 3. Fairness; 4. Working Together; 5. Reciprocity (if people asked to take increased risks and burdens, they should be supported in doing so); 6. Keeping Things in Proportion; 7. Flexibility; 8. Good Decision Making (Openness and transparency, Inclusiveness, Accountability, Reasonableness). Draws heavily on the UK Government 2017 (last update) guidance for pandemic flu; see “Ethical framework”.

• Cambridgeshire and Peterborough CCG guidance. Guidance on the management of symptomatic patients dying from COVID-19

• York Teaching Hospitals Palliative Care team, in collaboration with St Leonard’s Hospice and St Catherine’s Hospice. Clinical guidelines for symptom control in patients with Covid-19

• Herefordshire & Worcestershire STP EOLC Emergency COVID 19 group. End of Life Care Symptom Control Guidance in the COVID-19 crisis 

• Wessex Palliative Care Physicians. End of Life Care drugs table for COVID-19 (A4 version) and (A3 version)

• Feder G, Shacklock J, Johnson M, Binnie K, Millington-Sanders C. for IRISi, Marie Curie and Royal College of General Practitioners. Guidance on DVA (domestic violence and abuse) in the context of end of life care in the COVID-19 pandemic 

• Northern Care Alliance NHS Group and the Association for Palliative Medicine of Great Britain and Ireland. COVID-19 and Palliative, End of Life and Bereavement Care in Secondary Care – simple, non-pharmacological and pharmacological measures for patients with palliative needs around COVID-19.

 

Sphere Standards (humanitarian sector). Age and Disability Capacity Program. Inclusion of older people and people with disability. Sphere COVID-19 guidance based on humanitarian standards. Distributed 1 Apr 20, accessed 1 Apr 20.

The guidance discusses the inclusion of older people, people with disabilities and/or people with chronic conditions in the humanitarian response (the focus is largely on humanitarian contexts preceding the pandemic). It is not about palliative care but concerns some of its traditional populations. It highlights the fact that the people often cited as being at serious risk from COVID-19, such older people or people with chronic illnesses, are often excluded in a humanitarian setting.

 

Clark D, Krawzyck M, Richards N, Whitelaw S and Bell A, for the Glasgow End of Life Studies Group. Palliative care and COVID-19. A blog based on a rapid, non-systematic review of key literature on palliative care in pandemic and related contexts. 19 Mar 20, accessed 1 Apr 20.

From Conclusions (direct quotes):

• Attempts to model the palliative care response to an influenza pandemic highlight the need for: ‘stuff,’ ‘staff’ ‘space’ and ‘systems’ and the elements of these have been detailed.

• A useful initiative has described the value of an Alternative Care Centre to meet excessive demand.

• Special attention needs to be given to transparent triage systems, consistently applied and to the provision of palliative care within these.

• Front line workers will need support in delivering appropriate psycho-social and spiritual care and in dealing with their own pressures and concerns.

Based on the work of Cinti et al. (2008), state that “the modelling exercises found that a separate ‘pod’ for palliative care within the ACC [Alternative Care Centres] did not work well: 1) it was sometimes under-used when other pods were full 2) transferring patients there from other pods exacerbated suffering 3) dying patients might be easier to manage in the main facilities rather than a ‘field hospital’ setting.”

 

Royal Society of Medicine (UK) COVID-19 Series: Facing hard truths on the frontlines. Dr Rachel Clarke on Bereavement and Dying. Thursday 2 April 2020, 12:30 GMT. 

Dr Rachel Clarke is Consultant in Palliative Care, an activist, journalist, and author of the bestselling and critically acclaimed books Your Life in My Hands: A Junior Doctor’s Story and Dear Life: A Doctor’s Story of Love and Loss. Register here.

 

Hospice UK. What hospices across the UK are doing. Links to the COVID-19 statements of almost 60 hospices. Scroll to the end of this page. Undated, accessed 31 Mar 20.

Most hospices “have confirmed they are following NHS / Government guidance although Noah’s Ark Children’s Hospice and Prospect Hospice have closed to the public.”

 

Costantini M, Sleeman KE, Peruselli C, Higginson IJ. Response and role of palliative care during the COVID-19 pandemic: a national telephone survey of hospices in Italy. MedRxiv preprint. 18 Mar 20, accessed 30 Mar 20.

“The hospice sector is capable of responding flexibly and rapidly to the COVID-19 pandemic. Governments must urgently recognise the essential contribution of hospice and palliative care to the COVID-19 pandemic, and ensure these services are integrated into the health care system response. Availability of personal protective equipment and setting-specific guidance is essential.”

 

Marie Curie (UK). Coronavirus (Covid-19) if you’re affected by terminal illness. Updated 27 Mar 20, accessed 29 Mar 20.

Main or unique points:

Visiting somebody who may die soon

“The government rules on staying at home don’t list visiting someone who is dying as a reason to leave the house. And they say that their listed reasons are the only exceptions to the rules. However, we don’t feel that these rules are intended to stop people saying goodbye when someone is dying.”

“It’s important to think about the risks of visiting someone in terms of getting or spreading coronavirus.”

“Following the general government advice on seeing other people less can help protect them. But it is their choice whether they follow it. Some people who are likely to die in the coming weeks or months may decide that they want to see their family and friends where possible, even if they risk getting coronavirus and becoming seriously ill or dying with it. This is a very personal decision.”

“It’s also a decision that will affect the family members and friends. If you’re not sure someone is able to make a decision themselves, we have more information about mental capacity and making decisions.”

 

If you can’t visit somebody who is dying

“If you aren’t able to visit someone in their last weeks or days of life, you may find this very upsetting. It’s a very difficult situation to be in. Try to remember that this is not your fault. It may be the best way to reduce the risk of other people getting coronavirus.”

“It might be helpful to find out more about the care they are getting, so that you can try to make sure they can get the care they need. If another family member or friend (for example, the person’s next of kin) is in contact with their health and social care professionals, check with them first.”

 

RED-MAP (1-page guide for professionals) is a 6-step approach to conversations about deteriorating health and dying developed in Scotland and with SPICT partners in the UK and internationally. Adapted to Coronavirus situations. 25 Mar 20, accessed 27 Mar 20.

 

Coronavirus resources of Cruse Bereavement Care, UK. Undated, accessed 26 Mar 20.

Resources offered on the following subtopics. One point per subtopic below; more detailed summary at the bottom of this page.

• Grieving and isolation

“Cruse advice is usually to avoid isolating yourself, but we are in a situation where increasing numbers of people are being told to self-isolate and cut all but essential physical contact with others.”

• Grief and trauma

“At times of considerable trauma, people tend to look for certainty. However at the moment, that certainty is not there.”

• .Funerals and memorials

“[Y]ou could set aside the time while the funeral is taking place (or later) to hold your own act of memorial at home. You could: look at pictures, play some of the person’s favourite music, write a message to them, light a candle or follow any of your own cultural rituals.”

• Anger and blame

“Remind yourself that these are exceptional times, and that most people have been trying to do their best without the usual rules to help.”

• Feeling guilty

“A bereaved person might blame themselves for infecting the person who died, or for not being able to protect them. They may feel very guilty if they were not able to be with the person and pass on any last messages, even if this was not their fault.”

• Feeling your bereavement is not a priority

“People may also feel that their own troubles are less worthy of attention, and feel guilty about asking for help and support. This can apply if they have been recently bereaved from an unrelated cause.”

• Children and young people

“Talking about the situation and about the possibility of death and dying is an ongoing conversation.”

• Talk of death and dying

“In a pandemic situation, there is inevitably lots of discussion of death and dying, and this can bring up difficult feelings for those with anxiety and mental health issues. It can also bring up difficult feelings and memories of past bereavements. It may also bring up feelings of fear about dying yourself.”

See bottom of this page for more details or access the complete Cruse resources here.

 

Will Cairns and Meera Agar. Integrating palliative care into COVID-19 planning. InSight+, 23 Mar 2020

Main or unique points:

Key national-level activities of Palliative Care Australia and key stakeholders around COVID

• work with national planning bodies to integrate palliative care into the national response to COVID-19;
• work across jurisdictions to ensure continuing supply of essential palliative medications, particularly for the respiratory and other symptoms of COVID-19;
• facilitate telehealth delivery of care and support to patients and clinicians;
• consolidate and maintain up-to-date information and guidelines around the management of COVID-19 in the palliative care context;
• facilitate state and territory palliative care organisations to develop their local plans;
• communicate information to the public in clear and compassionate language, that aligns with the principles of non-abandonment.

.

Changes to how we provide palliative care

“If the workload becomes very high, much of the routine work of palliative medicine and palliative care would need to be curtailed, including the commitment of significant quantities of time to exploring the holistic needs of individual patients.”

“While the provision of the physical aspects of patient need would have generally first priority, we cannot ignore the huge burden of emotional distress that permeates the human experience of this pandemic, which will only grow over time.”

 

Engaging with the community

“[T]here is a real possibility that the state will have to resume the individual patient’s right to choose to have treatment, and impose pandemic triage … Before that happens, the community must be engaged prospectively in the process of deciding the underlying ethical principles and understand that triage will be implemented equitably and without exceptions.”

“… telling our community that we in palliative care are working on our community’s Plan B just in case the worst-case scenarios with which they are being bombarded in the media come to pass. Open explanation of the difficult choices and acknowledgement of the likelihood of at least some deaths empowers people to address their fears more openly and to move on to an enhanced sense of community unity.”

 

Preparation by non-specialist and specialist palliative care facilities

“Non-specialist facilities can prepare by examining their skill base and resources, and educating their staff for the tasks they may face in the future by tapping into the educational resources online (eg, CareSearch) and from their local palliative care service.”

“Specialist palliative care services are being encouraged to mirror such activity by building relationships across their geographical area of responsibility, including particularly with GPs and RACFs (residential aged care facility).”

 

Importance of health workers caring for each other

Colleagues, just as many others in the community, are

• experiencing conflict between their duties to family and to their patients and co-workers
• dealing with fear for their own mortality and that of their family and friends
• experiencing severe financial stress
• have their world turned upside down.

Many health workers also identify as being people who save lives. “Those who are distressed by large numbers of deaths that they are powerless to prevent will need to know we are there to support one another.”

“Personal support in the form of acknowledgement, direct personal conversation, validation, normalisation, education, standardised guidelines, empowerment to act and kindness can go a long way to help those who may feel isolated and overwhelmed.”

 

Dr Danila Valenti. From the front line: Palliative care in Bologna during the COVID-19 crisis. EAPC blog, 22 Mar 2020

Key ideas:

• reduce home visits – and only provided staff have personal protective equipment; otherwise provide advice over the phone
• when deciding who to limit care to, make it a team decision
• prepare home kits and give advice to patients, families, staff in long-term facilities, etc. over a 24-hour phone
• teach colleagues simple symptom management skills
• generally do not go on COVID wards (not least because, in the case of Italy, PPE is limited) – instead, give advice to colleagues in clean areas, wearing surgical masks
• have a 24-hour telephone advice line for colleagues only
• produce 1-page sheet on what to say and what not to say
• produce 1-page sheet on morphine use and sedation
• secure phones and iPads for patients on the wards to stay in touch with their families.

 

Nacoti M, Ciocca A, Giupponi A, Brambillasca P, Lussana F, Pisano M et al. At the Epicenter of the Covid-19 Pandemic and Humanitarian Crises in Italy: Changing Perspectives on Preparation and Mitigation. NEJM Catalyst. 21 Mar 20.

“In a pandemic, patient-centered care is inadequate and must be replaced by community-centered care.”

“Older patients are not being resuscitated and die alone without appropriate palliative care, while the family is notified over the phone, often by a well-intentioned, exhausted, and emotionally depleted physician with no prior contact.”

 

Dr Faye Kirkland. Coronavirus: Doctors urge conversations about dying. BBC news, 21 Mar 2020.

“Palliative care doctors are urging people to have a conversation about what they would want if they, or their loved ones, became seriously unwell with coronavirus.”

“We should discuss all possible scenarios – even those we are not “comfortable to talk about”, they said.”

 

Professor Dr Christoph Ostgathe. Start thinking about palliative care in times of a pandemic: The case of corona … EAPC blog, 20 Mar 2020.

“During this crisis, in palliative care we need to step up and ensure that we are proactive; that we fully utilise our well-honed skills and competencies and prove that we are an important part of our hospitals and our services crisis plans. It is important that we are able to speak out loud where there is treatable suffering in this crisis. We need to make it clear that in a pandemic like this palliative care is not a luxury, it is a human right!”

 

The Ink Vessel. Palliative Care in the Time of COVID. Cartoons on Life and Medicine by Nathan Gray, MD. 18 Mar 2020.

“Palliative care specialists are used to guiding people through frightening health landscapes, but this pandemic poses a level of uncertainty that most of us have not known in our lifetime.”

“This pandemic also means that many of these hard conversations will be had behind the dehumanizing veil of plastic gowns and respirator masks.”

 

Coronavirus resources of Cruse Bereavement Care, UK (Undated). Key points:

 

Coronavirus: grieving and isolation

“Cruse advice is usually to avoid isolating yourself, but we are in a situation where increasing numbers of people are being told to self-isolate and cut all but essential physical contact with others.”

“This could make feelings of loneliness and grief more intense. It could mean a bereaved person having to stay by themselves in the same house they shared with the person who has died, bringing up painful reminders at every turn.”

“Friends and relatives who might otherwise have been able to provide practical support, eg help with meals and shopping may also be isolating or preoccupied with their own family’s situation.”

More here.

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Coronavirus: grief and trauma

“Infection controls may mean that family members do not have an opportunity to spend time with someone who is dying, or to say goodbye in person.”

“At times of considerable trauma, people tend to look for certainty. However at the moment, that certainty is not there.”

“If the health services become stretched, friends or family may also have concerns about the care the person received before they died. This in turn can lead to feelings of anger and guilt.”

“Talking things through with friends and family can be very comforting. This can be done remotely if you or they are isolating.”

More here.

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Coronavirus: funerals and memorials

“As of 24 March 2020 in the UK funerals are allowed to go ahead but only ‘immediate family’ will be able to attend, and they much abide by social distancing rules.”

“Funeral services are likely to be delayed and much shorter than usual.”

“In some circumstances it may be possible for a friend, relative or someone from the funeral directors to record, video, or even live stream the event. You may be able to write or record a message to be read out or played at the funeral.”

“[Y]ou could set aside the time while the funeral is taking place (or later) to hold your own act of memorial at home. You could: look at pictures, play some of the person’s favourite music, write a message to them, light a candle or follow any of your own cultural rituals.”

More here.

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Coronavirus: anger and blame

“Feelings of anger and blame are common after any bereavement. When someone has died under sudden or traumatic circumstances it can make these feelings worse.”

“[People] may feel angry that their friend or relative did not receive the care they should have, for example if hospitals become overwhelmed and medical staff are forced to make difficult decisions. They may feel angry with the government if they think there should have been more protection and stronger controls.”

“Or they could be angry with people who took risks leading to infection. They may feel angry with the person who died for not protecting themselves.”

“Talking about your feelings with someone you trust may help.”

“Remind yourself that these are exceptional times, and that most people have been trying to do their best without the usual rules to help.”

“In some circumstances anger can be a force for good, leading to changes. But that may have to be put on hold if you are isolating and while the current exceptional circumstances continue.”

More here.

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Coronavirus: feeling guilty

“Feeling guilty is very common when someone is bereaved.”

“If someone has died of coronavirus, or under circumstances affected by the pandemic this can make things worse. A bereaved person might blame themselves for infecting the person who died, or for not being able to protect them. They may feel very guilty if they were not able to be with the person and pass on any last messages, even if this was not their fault.”

“Talking about your feelings with someone you trust may help. Remind yourself that these are exceptional times, and you, like most people have been trying to do their best without the usual rules to help.”

More here.

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Coronavirus: feeling your bereavement is not a priority

“At times of national crisis like these people may feel that others consider some losses less worthy of sympathy. The media can exacerbate this by constantly mentioning that people who died had underlying health conditions or were over a certain age.”

“People may also feel that their own troubles are less worthy of attention, and feel guilty about asking for help and support. This can apply if they have been recently bereaved from an unrelated cause.”

“Try to remember that while many people are struggling, it is OK to ask for help. Your own feelings are valid even if others are facing their own tragic circumstances.”

More here.

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Coronavirus: children and young people

“Children and young people will be hugely affected by what is going on around them at this difficult time. Their lives are changing and they will have picked up worries and fears about the virus and the possibility that they or someone they love and depend on may get ill. They may be particularly worried that grandparents, older relatives and family members with health conditions or disabilities might die.”

“Talk honestly with your children about both facts and emotions. Ask what they know – they may be getting information which is incorrect or distorted from friends or social media.”

“Talking about the situation and about the possibility of death and dying is an ongoing conversation.”

More here.

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Coronavirus: coping with talk of death and dying

“In a pandemic situation, there is inevitably lots of discussion of death and dying, and this can bring up difficult feelings for those with anxiety and mental health issues. It can also bring up difficult feelings and memories of past bereavements. It may also bring up feelings of fear about dying yourself.”

More here.