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

Authors:
  • International Association for Hospice and Palliative Care (IAHPC)
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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
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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)
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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
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... [5][6][7] Research has identified mostly negative consequences of the pandemic for patient well-being, e.g., it was referred to as a "tsunami of suffering." 7,8 Multimorbid older adults in particular were exposed to the severe consequences of COVID-19 symptoms, for example, in the form of shortness of breath, restricted mobility, psychological and psychosocial stress, restlessness, depression, or loneliness as a result of a lack of social contacts. [8][9][10] Palliative care plays a key role in the relief of suffering by offering symptom management, communication, care coordination, and emotional support, also in crisis situations. ...
... 7,8 Multimorbid older adults in particular were exposed to the severe consequences of COVID-19 symptoms, for example, in the form of shortness of breath, restricted mobility, psychological and psychosocial stress, restlessness, depression, or loneliness as a result of a lack of social contacts. [8][9][10] Palliative care plays a key role in the relief of suffering by offering symptom management, communication, care coordination, and emotional support, also in crisis situations. 11 Misconceptions concerning the objectives of palliative care still present obstacles to optimal care. ...
... 5 The more frequent occurrence of words with negative sentiment is associated with the fact that the pandemic was a crisis situation with scarce resources and patients facing significant stress and anxiety. 2,8 However, the perception of the conditions in palliative care situations improved little after the pandemic, partly related to the negative framing of palliative care situations by euthanasia advocates. Our study shows that the COVID-19 pandemic has had little long-term impact on the perception of palliative care as an institution. ...
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Background: Little is known about the public perception of palliative care during and after the pandemic. Assuming that analyzing online language data has the potential to collect real-time public opinions, an analysis of large online datasets can be beneficial to guide future policymaking. Objectives: To identify long-term effects of the COVID-19 pandemic on the public perception of palliative care and palliative care-related misconceptions on the Internet (worldwide) through natural language processing (NLP). Design: Using large language model NLP analysis, we identified public attitudes, opinions, sentiment, and misconceptions about palliative care on the Internet, comparing a corpus of English-language web texts and X-posts (“tweets”) (02/2020–02/2022) with similar samples before (02/2018–02/2020) and after the pandemic (03/2022–02/2024). Setting: The study is a statistical analysis of website and social media data, conducted on six large language corpora. Results: Since the COVID-19 pandemic, palliative care situations are more often portrayed as frightening, uncertain, and stressful, misconceptions about the activities and aims of palliative care occur on average 44% more frequently, especially on the social media platform X. Conclusions: The impact of the COVID-19 pandemic on public discussion on social media continues to persist even in 2024. Insights from online NLP analysis helped to determine the image of palliative care in the Internet discourse and can help find ways to react to certain trends such as the spread of negative attitudes and misconceptions.
... [1,2] In the context of COVID-19 pandemic, the need for palliative care has been acknowl-edged even more. [3,4] Palliative care is specialized care for patients across the lifespan living with serious or life-limiting illnesses and their families to relieve suffering by focusing on the management of physical, psychological, social, and spiritual needs. [5,6] Palliative care is delivered by the interdisciplinary team and can be delivered along with disease-oriented care across the illness trajectory from diagnosis through end-of-life and bereavement care. ...
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Zusammenfassung Ziel In der Studie wurde auf Basis von Sprachdaten aus dem Internetdiskurs untersucht, wie sich die COVID-19-Pandemie auf die öffentliche Wahrnehmung von Palliativversorgung auswirkte. Methodik Es wurde ein Korpus deutschsprachiger Webtexte und Tweets zum Thema Palliativversorgung (D/A/CH, 1.2.2020–1.2.2023) mit einer Stichprobe von Webseiten und Tweets vor der Pandemie (1.2.2017–30.1.2020) abgeglichen und eine empirische Analyse des Diskurses über Palliativversorgung durchgeführt. Insgesamt wurden 23.219 Texte und 8277 Tweets untersucht. Ergebnisse Die Daten zeigen, dass Palliativsituationen seit Beginn der COVID-19-Pandemie statistisch stärker mit negativen Emotionswörtern verknüpft sind. Gleichzeitig traten Fehlvorstellungen in Bezug auf die Zielsetzungen von Palliativversorgung häufiger auf, neue Fehlvorstellungen kamen hinzu. Dagegen konnten keine negativeren Emotionen in Bezug auf palliative Versorgungsangebote und ihr Personal beobachtet werden. Schlussfolgerung Während die COVID-19-Pandemie keinen negativen Einfluss auf das öffentliche Ansehen von Palliativversorgung als Institution hatte, werden palliative Versorgungssituationen stärker als vor der Pandemie mit negativen Emotionen verknüpft. Zudem besteht eine Gefahr in der Verbreitung von Fehlvorstellungen in Bezug auf die Ziele von Palliativversorgung.
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