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The key role of palliative care in response to the COVID-19 tsunami of suffering

DOI:10.1016/S0140-6736(20)30964-8
Authors:
Lukas Radbruch at University of Bonn
Lukas Radbruch
Felicia Marie Knaul
Felicia Marie Knaul
Felicia Marie Knaul
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Liliana De Lima at International Association for Hospice and Palliative Care (IAHPC)
Liliana De Lima
  • International Association for Hospice and Palliative Care (IAHPC)
Cornelis de Joncheere
Cornelis de Joncheere
Cornelis de Joncheere
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Comment
www.thelancet.com Published online April 22, 2020 https://doi.org/10.1016/S0140-6736(20)30964-8
1
Coronavirus disease 2019 (COVID-19) has brought
a tsunami of suffering that is devastating even well
resourced countries. The disease has wreaked havoc
on health systems and generated immense losses for
families, communities, and economies, in addition to
the growing death toll. Patients, caregivers, health-
care providers, and health systems can benefit from the
extensive knowledge of the palliative care community
and by taking heed of long-standing admonitions to
improve access to essential medicines, particularly
opioids for the relief of breathlessness and pain.1–3
For low-income and middle-income countries
(LMICs), the COVID-19 pandemic is likely to be even
more severe than in high-income countries. There will
probably be a high burden of COVID-19 in settings
where there are weak health-care systems, lack of
access to clean water and disinfectants, poor outbreak
preparedness, severe shortages in personal protective
equipment (PPE) and medical technology, challenges
in enforcing physical distancing regulations, and
reliance on informal employment. In such settings, it
is expected that patients with severe COVID-19 who
are unable to access the limited supply of intensive
care resources or hospital beds will suffer and die
at home, where they would be cared for by family
members without PPE and access to relevant
information, training, or palliative care resources.
These caregivers will probably become infected and
spread the disease. Additionally, if resources are
reallocated to respond to COVID-19, patients with
other life-limiting conditions could find themselves
pushed out of their health-care settings with reduced
access to opioid medication.
During the COVID-19 pandemic, access to essential
palliative care at end-of-life, including bereavement
support, will be limited in the face of high demands
in all countries. There will be increased isolation and
suffering for palliative care patients and those who are
bereaved.4,5 Strict physical distancing regulations to
slow disease transmission mean that patients who die
from COVID-19 will usually be without loved ones by
their side, who in turn will be unable to say goodbye
or undertake traditional grieving rituals.4,6 Providers of
palliative care, including private hospices, will require
additional human and financial resources.
Basic palliative care training to all medical and nursing
students has been the recommendation of the palliative
care community for many years,1 and had it been heeded,
the health-care workforce would be more prepared
for this pandemic. Online training is available to help
prepare medical personnel to provide some palliative
care at all levels of care. Now is the time to insist on
rapid capacity-building for clinicians7,8 in symptom
control and management of end-of-life conversations.3,9
Smartphones and telemedicine can facilitate at-home
activities supported by health-care professionals and
The key role of palliative care in response to the COVID-19
tsunami of suffering
Panel: Strategies to extend palliative care during and after the COVID-19 pandemic
Immediate responsiveness to adapt to pandemic parameters
Optimise cooperation and coordination
• Initiate formal and informal pathways for collective action and exchange by
governments, bilateral and multilateral organisations, civil society, and the private
sector based on the principle of solidarity.
Preserve continuity of care
• Ensure the availability and rational use of personal protective equipment and
encourage self-care among palliative care health-care professionals and all caregivers.
• Ensure an adequate and balanced supply of opioid medication to all patients for relief
of breathlessness and pain by instituting the simplified procedures of the International
Narcotics Control Board.
• Conduct rapid training for all medical personnel to address additional palliative care
needs of COVID-19 patients.
• Engage technology partners to equip community health workers with telehealth
capabilities to virtually conduct home-based palliative care activities.
• Enable families to virtually visit and partake in health decisions with loved ones,
especially at the end of life to address the almost universal fear of dying alone.
Enhance social support
• Enlist informal networks of community-based and faith-based organisations to
mobilise and train a citizen volunteer workforce that is ready and able to teleconnect
with patients in need of basic social support, delivering on palliative care’s cornerstone
feature—compassionate care.
Assess emerging needs
• Link with contact tracing activities and testing sites to collect data from the general
public to better understand the social dimension of pandemic suffering.
Long-term preparedness strategies that embed palliative care into the core of medicine
• Expand all medical, nursing, social work, and community health worker curricula,
as well as training of clergy, to include core palliative care competencies.
• Establish standard and resource-stratified palliative care guidelines and protocols for
different stages of a pandemic and based on rapidly evolving situations and scenarios.
Published Online
April 22, 2020
https://doi.org/10.1016/
S0140-6736(20)30964-8
Comment
2
www.thelancet.com Published online April 22, 2020 https://doi.org/10.1016/S0140-6736(20)30964-8
volunteers without physical contact for people who are
isolating at home.10 Immediate-term and long-term
strategies to extend palliative care during and after the
COVID-19 pandemic are shown in the panel.
Support for health-care workers and strategies, such
as peer counselling, regular check-ins with social support
networks, self-monitoring and pacing, and working in
teams, to mitigate the impact of continued exposure
to death and dying, breathlessness, desperation, and
suffering need to be deployed across health systems.
These strategies need to include the palliative care
workforce worldwide because their patient groups are
usually at increased risk from COVID-19 and the least
likely to be triaged into intensive care.4,11
Adoption of triage for clinical decision making,
including who will receive ventilator support, marks a
deterioration in use of person-centred care in favour
of utilitarian thinking.5 Palliative care rejects the
comparative valuation of human life and upholds
the allocation of resources using the key ethical
principles of justice and beneficence such that previous
treatment adherence should not be a consideration in
defining access to care.12 Universal do-not-resuscitate
orders should be rejected. The cornerstones of clinical
decision making must be strict differentiation of
clinicians who provide care from those who make
triage decisions5 and patient-centred assessment of the
medical indication, applied in conjunction with the will
of the patient.13
Most importantly, patients triaged not to receive inten-
sive care or ventilatory support require adequate relief
of suffering, especially for breathlessness.14 In COVID-19
patients with breathlessness, clinical experience suggests
opioids—a common palliative care intervention—can be
safe and effective and should be widely available.15
The relief of the COVID-19-related, huge additional
burden of serious health-related suffering will require
opioids and especially inexpensive, off-patent injectable
and immediate release oral morphine.16 Yet the poorest
50% of people in the world have access to only 1% of
the globally distributed opioids in morphine-equivalent
and as a result access to opioid medication in many
countries, even for palliative care, is inadequate.1,17
Patients in LMICs with respiratory failure from COVID-19
will be largely unable to access opioids, as pre-existing
scarcity will be exacerbated by increased use of opioids
in hospital intensive-care units.
We propose that LMICs need to rapidly adopt
two strategies. First, national opioid medication
reserves have to be increased to build up a stockpile for
the COVID-19 pandemic. The International Narcotics
Control Board (INCB) has called on governments
to ensure continued access to controlled medicines
including opioids during this pandemic, reminding
them that in acute emergencies it is possible to use
simplified procedures for the export, transportation,
and provision of opioid medications.18 To avoid cost
escalation, pooled purchasing platforms need to be
adopted, including making information on price-points
public and accessible.1,19 Second, rapid, basic training on
rational use of opioid medications must be offered to
all primary caregivers and health-care professionals in
emergency departments and intensive-care units and
much of this can be done online.20,21
In this most challenging time, health responders can
take advantage of palliative care know-how to focus
on compassionate care and dignity, provide rational
access to essential opioid medicines, and mitigate
social isolation at the end of life and caregiver distress.
The call to fully incorporate palliative care into global
health1,22 could finally be realised in the urgency of the
pandemic. If so, the COVID-19 pandemic will have
catalysed medicine to better alleviate suffering in life
and death.23
LR is chair of the board of directors of the International Association for Hospice
and Palliative Care. FMK reports grants from the American Cancer Society,
Asociacion Mexicana de Industrias de Investigacion Farmaceutica, Chinoin, GDS,
JM Foundation, Mayday Fund, NADRO, Novartis, Open Society Foundation,
Pfizer, US Cancer Pain Relief Committee, VITAS Healthcare, Wellcome Trust,
and Grunenthal; grants and personal fees for a lecture and non-financial support
from Roche; and grants, consulting fees, and non-financial support from
Merck/EMD Serono. CdJ is President of the International Narcotics Control Board.
AB reports consulting fees from GDS, US Cancer Pain Relief Committee, Mayday
Fund, JM Foundation, Pfizer, Lien Foundation, and Roche. LdL declares no
competing interests.
Lukas Radbruch, *Felicia Marie Knaul, Liliana de Lima,
Cornelis de Joncheere, Afsan Bhadelia
naul@miami.edu
Department of Palliative Medicine, University Hospital Bonn, Germany (LR);
Institute for Advanced Study of the Americas, University of Miami, Miami,
FL 33146, USA (FMK, AB); Leonard M Miller School of Medicine, University of
Miami, Coral Gables, FL, USA (FMK); Fundación Mexicana para la Salud, AC,
Mexico City, Mexico (FMK); Tómatelo a Pecho, AC, Mexico City, Mexico (FMK);
International Association for Hospice and Palliative Care, Houston, TX, USA
(LdL); International Narcotics Control Board, Vienna, Austria (CdJ); and Harvard
T H Chan School of Public Health, Boston, MA, USA (AB)
1 Knaul FM, Farmer PE, Krakauer EL, et al. Alleviating the access abyss in
palliative care and pain relief-an imperative of universal health coverage:
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2 Arya A, Buchman S, Gagnon B, Downar J. Pandemic palliative care:
beyond ventilators and saving lives. CMAJ 2020; published online
March 31. DOI:10.1503/cmaj.200465.
Comment
www.thelancet.com Published online April 22, 2020 https://doi.org/10.1016/S0140-6736(20)30964-8
3
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18 International Narcotics Control Board, 2020. The International Narcotics
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... These decisions are influenced by factors such as the judicious allocation of scarce resources, life-threatening acute illness, severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2) disease (COVID-19) disease progression, restrictions on visits and unspoken wishes at the end of life. [5,[7][8][9][10] During this social distancing and isolation, restoring meaningful human connection has required creativity and innovation in record time. The great interest in the use of technology in palliative care and end-of-life care to improve communication between isolated patients and their families and between patients and their care providers. ...
... The great interest in the use of technology in palliative care and end-of-life care to improve communication between isolated patients and their families and between patients and their care providers. [9,10] The objective of this review was to understand how this pandemic season has affected dignity in death and how telemedicine can help improve palliative and end-of-life care. ...
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Dying with dignity is a right, defined as a process with the following characteristics. Dying with minimal suffering from symptoms and limited invasive treatment. The study aimed at understanding how the pandemic changed the way of dying in end‑of‑life care and what we can then add to what was done previously. A search was carried out in the PUBMED/Medline database to find articles that answered the research question. We carried out this research between December 2019 and June 2021. Articles with original data written in English, Portuguese and Spanish were used as keywords: ‘end of life’; ‘palliative care’; ‘COVID‑19’; ‘dignity’ and telemedicine’. Twenty‑two studies met the inclusion criteria. There was significant heterogeneity in the origin of these studies conducted in 12 different countries. Five themes were found from the articles: Palliative care during the COVID‑19 pandemic; end of life during the COVID‑19 pandemic; the evolution of telemedicine during the COVID‑19 pandemic; use of telemedicine in palliative care; and the use of telemedicine and dignity at the end of life. The results were relatively positive in terms of some parameters; however, some suggestions for improvement stood out. Telemedicine has enormous potential to improve care at the end of life in terms of quality of life, autonomy and adherence to pharmacological and non‑pharmacological treatment. However, more intervention studies are needed to create protocols for monitoring these patients at home.
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... [7][8][9] People of African and Caribbean descent experienced the highest levels of intra-pandemic morbidity and mortality. 7,[10][11][12][13][14][15][16][17][18][19] The situation is complex; available data suggests layering of contributory factors, including; socio-economic deprivation, environmental, physiological and health-related behaviours exacerbates inequity. 20 Whilst the evidence demonstrating inequity is convincing, comprehensive understanding of its extent and causation is limited. ...
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Background: People of African and Caribbean descent experienced disproportionately high mortality from COVID-19 and have poor access to palliative care. Aim: To explore palliative care experiences of people of African and Caribbean descent during and immediately prior to the pandemic. Design: Qualitative interview study with thematic analysis. Refinement of themes/recommendations in consultation with an expert patient and public advisory group. Setting/participants: Twenty-six bereaved relatives and 13 health/social care professionals (cared for people of African and Caribbean descent) from throughout England, recruited using social media, community networks and direct advertising to over 150 organisations. Results: Three themes were identified: Representation: Participants did not see themselves reflected in the palliative care services and did not expect their needs to be understood. Mistrust of the healthcare system and perceptions of racism were common and led to anticipation of inequitable care. Personalisation: Relatives and professionals reported a lack of cultural and religious sensitivity in healthcare. Assumptions were made based on ethnicity, and services not offered to all. Awareness and education: Professionals felt they lacked the knowledge to provide care to diverse communities, but were reluctant to ask, due to fear of making mistakes. Inequitable access to services was exacerbated by, but not unique to, the pandemic. Participants recommended raising awareness of palliative services, building professional competence in culturally-sensitive care, and greater ethnic diversity within services. Conclusions: Person-centred, culturally-competent palliative care is not the norm for people of African and Caribbean descent. Expectations of inequitable care are widespread. Sustained action on multiple fronts is needed.
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... 1 Future projections predict a percentage increase of up to 87% of global suffering, 2 and the COVID-19 pandemic is adding day by day an unknown number of people who die experiencing suffering amenable to palliative care interventions. 3,4 In addition, people who live experiencing suffering related to chronic noncommunicable diseases (NCDs) should also be considered because their economic burden results in impoverished countries, especially middle-and low-income countries, 5 increasing global inequity and preventing them from achieving most of the sustainable development goals (SDGs). 6 In 2018, the three leading scientific organizations of palliative care stated that the current situation is an exponentially growing crisis of suffering. ...
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... In response, clinical and academic experts across the world have called for the explicit inclusion of palliative care in future pandemic planning. 8 However, those responsible for drafting and negotiating the WHO pandemic preparedness and response treaty have not heeded that call. Neither the preamble nor the operational paragraphs of the zero draft mention the words suffering, rehabilitation or palliative care. ...
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... Online training is available to provide some types of care. Smartphones and telemedicine can facilitate home activities supported by health professionals and volunteers without physical contact 18 . ...
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... [2][3] As of 2020, the spread of the Sars-CoV-2 virus, which causes Coronavirus Disease 2019 (COVID- 19), has become a diagnostic, treatment, and care dilemma, creating constant pressure on professionals. 4 Attention is paid to the potential for contamination, which is on average 22 days in feces and 18 days in exudative respiratory samples. ...
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Hospices and Emergency Preparedness Planning: A Scoping Review of the Literature
Article
Objective. Palliative and end-of-life care, as provided by hospices, are important elements of a healthcare response to disasters. A scoping review of the literature was conducted to examine and synthesize what is currently known about emergency preparedness planning by hospices. Methods. A literature search of academic and trade publications was conducted through 6 publication databases, following Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines when applicable. Publications were selected and findings were organized into themes. Results. A total of 26 articles were included in the literature review. Six themes of Policies and Procedures; Testing/Training/Education; Integration and Coordination; Mitigation; Risk Assessment/Hazard and Vulnerability Analysis; and Regulations were identified. Conclusions. This review demonstrates that hospices have begun to individualize emergency preparedness features that support their unique role. The review supports all-hazards planning for hospices, and emerging from this review is a developing vision for expanded roles of hospices to help communities in times of disaster. Continued research in this specialized area is needed to improve hospices' emergency preparedness efforts.
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Response and role of palliative care during the COVID-19 pandemic: A national telephone survey of hospices in Italy
Article
Full-text available
  • Apr 2020
Background Palliative care is an important component of health care in pandemics, contributing to symptom control, psychological support, and supporting triage and complex decision making. Aim To examine preparedness for, and impact of, the COVID-19 pandemic on hospices in Italy to inform the response in other countries. Design Cross-sectional telephone survey, in March 2020. Setting Italian hospices, purposively sampled according to COVID-19 regional prevalence categorised as high (>25), medium (15–25) and low prevalence (<15) COVID-19 cases per 100,000 inhabitants. A brief questionnaire was developed to guide the interviews. Analysis was descriptive. Results Seven high, five medium and four low prevalence hospices provided data. Two high prevalence hospices had experienced COVID-19 cases among both patients and staff. All hospices had implemented policy changes, and several had rapidly implemented changes in practice including transfer of staff from inpatient to community settings, change in admission criteria and daily telephone support for families. Concerns included scarcity of personal protective equipment, a lack of hospice-specific guidance on COVID-19, anxiety about needing to care for children and other relatives, and poor integration of palliative care in the acute planning response. Conclusion 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. Hospices may also need to be proactive in connecting with the acute pandemic response.
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Not Dying Alone — Modern Compassionate Care in the Covid-19 Pandemic
Article
Full-text available
  • Apr 2020
http://deepblue.lib.umich.edu/bitstream/null/1/nejmp2007781.pdf
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Grief During the COVID-19 Pandemic: Considerations for Palliative Care Providers
Article
Full-text available
The COVID-19 pandemic is anticipated to continue spreading widely across the globe throughout 2020. To mitigate the devastating impact of COVID-19, social distancing and visitor restrictions in healthcare facilities have been widely implemented. Such policies and practices, along with the direct impact of the spread of COVID-19, complicate issues of grief that are relevant to medical providers. We describe the relationship of the COVID-19 pandemic to anticipatory grief, disenfranchised grief, and complicated grief for individuals, families, and their providers. Further, we provide discussion regarding countering this grief through communication, advance care planning, and self-care practices. We provide resources for healthcare providers, in addition to calling on palliative care providers to consider their own role as a resource to other specialties during this public health emergency.
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Applying Palliative Care Principles to Communicate With Children About COVID-19
Article
Children are seeing rapid changes to their routines and facing an unpredictable future. Palliative care teams may consider expanding their communication training and skillsets to help families consider caring ways to communicate with their children and grandchildren about the coronavirus. Palliative care teams are wise to encourage families to ground their communication with children on key values: honesty and trust, self-compassion, safety, sensitivity, connection, preparedness, community-building, recognition of death as a part of the lifecycle, and legacy.
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