Suffering is serious when it cannot be relieved without professional intervention and when it compromises physical, social, spiritual, and/or emotional functioning.
- atherosclerosis;
- cerebrovascular disease;
- chronic ischemic heart diseases;
- congenital malformations;
- degeneration of the CNS;
- dementia;
- diseases of the liver;
- hemorrhagic fevers;
- HIV disease;
- inflammatory disease of the CNS;
- injury,
- poisoning,
- and external causes;
- leukemia;
- lung diseases;
- malignant neoplasms (cancers);
- musculoskeletal disorders;
- non-ischemic heart diseases;
- premature birth and birth trauma;
- protein energy malnutrition;
- renal failure;
- and tuberculosis.
- Physical suffering (moderate or severe pain, mild pain, weakness, fatigue, shortness of breath, nausea and vomiting, constipation, diarrhea, dry mouth, itching, wounds and bleeding)
- Psychological suffering (anxiety and worry, depressed mood, delirium or confusion, and dementia referring to disorientation, agitation, or memory loss).
Indicators of the duration of SHS.
# 1: total number of days with any type of suffering; it is estimated by summing the duration in days of each symptom.
# 2: number of days with the symptom of longest duration.
https://pallipedia.org/serious-health-related-suffering-shs/
Severe illness
- https://aphn.org/wp-content/uploads/2020/04/SICP-COVID19-communication-toolkit.pdf
- https://aphn.org/wp-content/uploads/2020/04/COVID-Language-Guide.pdf
- https://aphn.org/wp-content/uploads/2020/04/delivering-news-of-a-death-by-telephone.pdf
- https://aphn.org/wp-content/uploads/2020/04/COVID-19-Homecare-and-Hospice-Checklist-CAPC.pdf
- https://aphn.org/wp-content/uploads/2020/04/covid19-rapid-guideline-managing-symptoms-including-at-the-end-of-life-i....pdf
- https://aphn.org/wp-content/uploads/2020/04/setting-up-a-palliative-care-hotline-for-your-hospital-or-system.pdf
- https://aphn.org/wp-content/uploads/2020/04/Surviving_Sepsis_Campaign__Guidelines_on_the.95707.pdf
- https://aphn.org/wp-content/uploads/2020/04/SCCM-COVID-19-Infographics1.pdf
- https://aphn.org/wp-content/uploads/2020/04/SCCM-COVID-19-Infographics2.pdf
- https://aphn.org/wp-content/uploads/2020/04/Giving-serious-news-COVID-19-resource-V1-23-March-2020.pdf
- https://aphn.org/wp-content/uploads/2020/04/End-of-Life-Nursing-Considerations-COVID-19-patients-V1-27-March-2020.pdf
- https://aphn.org/wp-content/uploads/2020/04/web-mar2020-ll-2pp-tool-kit-covid-19-wfnwoqjmgwhq.pdf
- https://aphn.org/wp-content/uploads/2020/04/spiritualsuggestions_from_upenn_for_covid-19-1.pdf
- https://aphn.org/wp-content/uploads/2020/04/mental-health-considerations.pdf
- https://aphn.org/wp-content/uploads/2020/04/coronavirus_HUHS_managing_fears_A25.pdf
- https://aphn.org/wp-content/uploads/2020/04/Mitigate-the-effects-of-home-confinement-on-childrenduring-the-COVID19-outbreak.pdf
- https://aphn.org/wp-content/uploads/2020/04/guide_to_living_with_worry_and_anxiety_amidst_global_uncertainty_en-gb.pdf
- https://aphn.org/wp-content/uploads/2020/04/Fair-Allocation-of-Scarce-Medical-Resources-in-the-Time-of-Covid-19.pdf
- https://aphn.org/wp-content/uploads/2020/04/Palliating-a-Pandemic-All-Patients-Must-Be-Cared-For.pdf
- https://aphn.org/wp-content/uploads/2020/04/Interventions-to-mitigate-early-spread-of-SARS-CoV-2-in-Singapore-a-modelling-study.pdf
- https://aphn.org/wp-content/uploads/2020/04/nejmp2005689.pdf
- https://aphn.org/wp-content/uploads/2020/04/Psychological-impact-of-quarantine-and-how-to-mitigate-it-LANCET-March-14-2020.pdf
- https://aphn.org/wp-content/uploads/2020/04/JPSM-Palliative-Care-in-the-Time-of-COVID-19-Reflections-from-the-Frontline.pdfhttps://aphn.org/wp-content/uploads/2020/04/Home-care-for-cancer-patients-during-COVID-19-pandemia-the-double-triage-protocol.pdf
“As we take stock of masks, gloves, and ventilators, we must also be ready to dig deep into our reserves of patience, communication, and compassion.”Nathan A. Gray, MD
https://inkvessel.com/2020/03/18/palliative-care-in-the-time-of-covid/
Talking to relatives: A guide to compassionate phone communication during COVID-19
Delivering news of a death by telephone:
https://vimeo.com/328655124
Unwelcome news conversations- Dr Kathryn Mannix:
https://portal.e-lfh.org.uk/LearningContent/LaunchForGuestAccess/611111
Discussing unwelcome news:
https://portal.e-lfh.org.uk/LearningContent/LaunchForGuestAccess/611127
Ceilings of treatment:
https://portal.e-lfh.org.uk/LearningContent/LaunchForGuestAccess/611119
Mental health support for health care professionals
COVID-19 is having a significant impact on everyone, affecting not only the way we are working but also how we spend our free time. It is quite normal to experience feelings of anxiety during this time and it is important to take time to care for your own mental health and wellbeing. A mental health hotline to support NHS staff has been set up to support staff during COVID-19.
Mind Mental Health Charity:
https://www.mind.org.uk/media/26493068/tcoy_tips_technique_guide_online.pdf
World Health Organisation: Coping with stress:
https://www.who.int/docs/default-source/coronaviruse/coping-with-stress.pdf?sfvrsn=9845bc3a_2
Tips for health workers on coping with anxiety during the COVID-19 pandemic: http://www.sageandthymetraining.org.uk/film/coping-anxiety-during-covid-19-pandemic
End of Life Care COVID-19- ELCA
The guideline contains NHS England and NHS Improvement Guidelines on palliative care in hospital during the coronavirus pandemic. The documents and videos section, based on 'discussing unwelcome news' will be particularly useful in supporting communication skills in the context of COVID-19.
https://portal.e-lfh.org.uk/Component/Details/605650
Clinical guide for the management of palliative care in hospital during the coronavirus pandemic
https://portal.e-lfh.org.uk/Catalogue/Index?HierarchyId=0_45016_45128&programmeId=45016
Community palliative care
Providing community palliative care
A brief screencast summarising the latest changes in death certification, in response to COVID-19.
https://elearning.rcgp.org.uk/mod/page/view.php?id=10389
COVID-19 rapid guideline:
The purpose of this guideline is to provide recommendations for managing COVID‑19 symptoms for patients in the community, including at the end of life. It also includes recommendations about managing medicines for these patients, and protecting staff from infection.
https://www.nice.org.uk/guidance/ng163
In 1990
the World Health Organization
defined palliative care as
‘The active total care of patients
whose disease is not responsive to curative treatment.
Control of pain, of other symptoms, and of psychological, social and spiritual problems, is paramount.
The goal of palliative care is
achievement of the best quality of life
for patients and their families’.
These words describe
how modern palliative care has developed
from the passive accompanying of dying patients,
to a more dynamic multidisciplinary approach
which attempts to address priorities
from an individual’s perspective.
It recognizes that patients deserve
to receive such care even at early stages
of their illness and that palliative care is
relevant to patients
both with cancer and other diseases.
It emphasizes the need to support the family and carers
and to continue that support into bereavement.
The overarching concept is that of enabling people to ‘live well’
despite having a fatal diagnosis.
Specialist palliative care
requires a team approach
to identify and address the issues
that have a negative impact
on the patient’s quality of life.
Specialist palliative care teams are
now available as a resource
to most hospitals,
primary care teams
and specialist inpatient units
or hospices.
Here,
in addition to doctors and nurses,
a wide range of disciplines
with specialist expertise are collected.
Key principles of palliative care
(National Council of Hospices and Specialist Palliative Care Services, 1995)
• Focus on quality of life, which includes good symptom control
• Whole-person approach taking into account the person’s past life experience and current situation
• Care, which encompasses both the person with the life-threatening disease and those that matter to that person
• Respect for patient autonomy and choice (e.g. over treatment options, place of care)
• Emphasis on open and sensitive communication which extends to patients, informal carers and professional colleagues
Palliative care requires a team approach to ensure best patient and carer outcomes.
Most home-based palliative care teams are led and proactively coordinated by the GP.
Team members vary and should be determined by patient needs and local availability of professionals.
Members include clinicians such as nurses, social workers, occupational therapists, other allied health professionals and the local pharmacist.
With more complex patients, specialist palliative care services may be enlisted to complement the skills of the local team.
The carer’s role is worthy of mention.
Carers usually know the patient most intimately and are motivated to help.
Carers are increasingly becoming embedded into resource-stretched palliative care teams to assume some responsibility for symptom management, particularly the preparation and administration of subcutaneous medications.
When appropriately educated, they do this safely and with confidence.
