Managing the supportive care needs of those affected by COVID-19
SabrinaÂ Bajwah,Â AndrewÂ Wilcock,Â RichardÂ Towers,Â MassimoÂ Costantini,Â ClaudiaÂ Bausewein,Â Steffen T.Â Simon,Â ElisabethÂ Bendstrup,Â WendyÂ Prentice,Â Miriam J.Â Johnson,Â David C.Â Currow,Â MichaelÂ Kreuter,Â Athol U.Â Wells,Â Surinder S.Â Birring,Â PollyÂ Edmonds,Â Irene J.Â Higginson
European Respiratory JournalÂ 2020Â 55:Â 2000815;Â DOI:Â 10.1183/13993003.00815-2020
For patients with COVID-19, there is a moral obligation to provide good supportive care to prevent avoidable suffering. This article provides a succinct informative overview, clinical guidance and information sheets for both patients and families.Â https://bit.ly/2UPFsOj
Globally, the number of people affected by coronavirus disease 2019 (COVID-19) is rapidly increasing. In most (>80%), the illness is relatively mild and can be self-managed out of hospital. However, for about 20%, the illness causes respiratory compromise severe enough to require hospital admission. Patients with severe and critical disease need full active treatment. This may include oxygen for hypoxaemia and ventilatory support, along with optimal management of complications,Â e.g.Â super-imposed bacterial infection, and any underlying comorbidities,Â e.g.Â COPD or congestive heart failure. To date, no antiviral agent has shown to be effective in treating the disease .
Patients with severe disease not considered suitable for escalation to intensive care,Â i.e.Â those who are frail or have multiple comorbidities, are at very high risk of dying, with an estimated death rate of 15â€“22%. We have a moral obligation to provide good symptom control to prevent avoidable suffering. Thus, comprehensive care of the patient with COVID-19 requires identification of patients at increased risk of dying, who would benefit from a parallel approach to management. This encompasses optimal symptom management for those with severe disease but who will survive, and expert symptom management and end of life care for those that are deteriorating and in their last days or hours of life. The aim of this editorial is to provide a succinct informative overview to guide respiratory healthcare professionals on the frontline.
The most common symptoms are breathlessness, cough and fever.
Breathlessness affects between 5% and 65% of patients with COVID-19.
The highest incidence will be in those with severe disease and is expected in those actively dying. The primary driver of breathlessness is the viral lung infection causing an interstitial pneumonia with a reduction in lung diffusing capacity; in some patients this evolves to acute respiratory distress syndrome (ARDS). The experience of breathlessness is also influenced by emotional, environmental, cultural and social factors, and optimal management requires a holistic approach. These include non-pharmacological and pharmacological approaches. Non-pharmacological approaches include breathing techniques. Although an electric hand-held fan directed at the face is helpful in other settings, this is not recommended in COVID-19 because of the theoretical infection control risk of spreading infected droplets. As an alternative, use of facial cooling with wet wipes (binning after each use, as for tissues) can be tried.
Pharmacological approaches are the mainstay of management for patients with severe disease who are likely to have rapidly worsening breathlessness at rest. Morphine is the opioid of choice]. However, alternative strong opioids can be used. Short-acting oral opioids, given as required, may suffice when breathlessness is mild. However, in severe disease or at the end of life, continuous infusions of parenteral opioids are preferable, maximising symptom management, whilst reducing nurse and community staff time, use of resource-limited protective equipment and exposure. Use of the parenteral route is also preferred for speed of onset of action and ability to rapidly titrate doses. If there is distressing breathlessness at rest, opioids should be combined with an anxiolytic sedative,Â e.g.Â midazolam . Rapid titration of benzodiazepines may be needed. The primary role of oxygen is to correct hypoxaemia. There is a suggestion it may help breathlessness in severe hypoxaemia, but not when mild or absent. In a comatose/unresponsive dying patient, oxygen can be titrated down with goal of discontinuation, while concurrently managing symptoms of breathlessness].
Example clinical guidelines for the management of the severe/dying coronavirus disease 2019 (COVID-19) patient
Cough affects between 70% and 80% of patients with COVID-19.
Potential mechanisms in viral respiratory infection and ARDS include inflammation, epithelial damage, mucus impaction and neuro-modulatory changes (heightened cough reflex sensitivity). Evidence for effective management of acute cough is limited. Adequate hydration and regular small sips of water may help. However, because of the likely concurrent need for breathlessness management, strong opioids are likely to be more pragmatic in practice. High-level evidence is limited, but relatively low doses of long-acting oral morphine (5â€“10â€…mg twice daily) are helpful in refractory chronic cough. Although these patients do not have chronic cough, opioids may be helpful in reducing cough alongside treatment for breathlessness.
Delirium is common in medical illness and almost universal in the last days or hours of life. Non-pharmacological management includes regular orientation, avoiding constipation, treating pain, maintaining oxygenation and avoiding urinary retention. When ineffective and where the delirium is causing significant distress, pharmacological therapy with an antipsychotic (such as haloperidol) should be considered; in the context of severe breathlessness and at the end of life, a sedative anxiolytic such as levomepromazine or midazolam should be used to allow rapid titration if needed.
Anxiety secondary to breathlessness, social isolation and fear is likely to be present to some degree in all patients with COVID-19. Severely ill patients may be particularly distressed, due to the looming possibility that their situation may rapidly worsen and that they may die, potentially compounded by the loss of support from their families, who are not allowed to visit, and receiving care from health professionals in personal protective equipment. Non-pharmacological methods such as relaxation therapy and breathing exercises are effective in mild anxiety but if patients are significantly anxious or have severe disease, the focus should be on pharmacological management. For severe disease and if people are actively dying, benzodiazepines are likely to be most effective. Optimal relief may necessitate increasing depths of sedation rapidly in the last days and hours of life, particularly when associated with severe breathlessness.
Families of patients with COVID-19 face a significant psychological burden that is often magnified by family members themselves being in isolation or under financial strain. Often, more than one member of the same family may be infected and in hospital. Visiting is likely to also be limited/prohibited. There may also be guilt over possibly transmitting the infection to their loved one. The quality of the dying experience and lack of preparation for the death are both predictors of complicated grief. Health professionals should communicate with families regularly and where possible facilitate communication between patients and their families utilising virtual technology. Information leaflets should be provided for both patients and family members. If family members are unable to visit, leaflets should be emailed where possible.Â Figures 1Â andÂ 2Â provide example leaflets that can be used and are also provided as supplementary files in downloadable and editable document format. Translations are available atÂ https://www.europeanlung.org/en/news-and-events/news/covid-19-factsheets
Example information sheet for coronavirus disease 2019 (COVID-19) patients admitted to hospital.
Example information sheet for families/friends of coronavirus disease 2019 (COVID-19) patients admitted to hospital.
Information needs and parallel planning
In patients with severe disease, there is a need for parallel planning: hoping for the best but preparing for the worst. Therefore, there is an urgent need for early and honest discussions at the time of hospitalisation/diagnosis of COVID-19 for those with a high risk of severe illness and death. Health professionals should focus on advance care planning with open and honest conversations as to what is important to the individual, to inform treatment escalation planning, including resuscitation status, should they deteriorate.
Health professionals should acknowledge the distress of this complex and unique situation, and be compassionate, respectful and empathic. We must explain that active resuscitative care and symptom management do not need to be mutually exclusive, where resources allow. The focus of care should be iterative, adapting to worsening clinical status or patient expressed altered goals of care. Importantly, healthcare professionals need to be proactive in the provision of information and ensure that if there is a significant possibility that the patient will die, that this is addressed with both the patient and family (table 1).
The importance of spirituality in coping with uncertainty, severe disease and at the end of life is recognised. Spiritual wellbeing offers some protection against end of life despair in those for whom death is imminent. Hospital chaplains provide spiritual care that helps patients facing serious illness better cope with their symptoms and prognosis. Most hospitals around the world will have chaplains/representatives from all faiths in the chaplaincy office. The family of the patient or the dying patient may want to see speak to someone about their impending death. Chaplain interventions, whether or not religious, focused on comforting the patient and improving his or her well-being in the context of both his or her spiritual pain and critical illness should be explored with all patients and family. It is important that the spiritual care needs of those who are not represented by chaplaincy available or who are not religious, should also be addressed.
COVID-19 patients with severe disease/at the end of life have an equal right to care. Receiving adequate symptom control is a basic human right and we have a fundamental duty to relieve suffering and provide the best care with the available resources regardless of the chances of survival.
This article has supplementary material available fromÂ erj.ersjournals.com
Conflict of interest: S. Bajwah has nothing to disclose.
Conflict of interest: A. Wilcock has nothing to disclose.
Conflict of interest: R. Towers has nothing to disclose.
Conflict of interest: M. Costantini has nothing to disclose.
Conflict of interest: C. Bausewein has nothing to disclose.
Conflict of interest: S.T. Simon has nothing to disclose.
Conflict of interest: E. Bendstrup has nothing to disclose.
Conflict of interest: W. Prentice has nothing to disclose.
Conflict of interest: M.J. Johnson has nothing to disclose.
Conflict of interest: D.C. Currow has nothing to disclose.
Conflict of interest: M. Kreuter has nothing to disclose.
Conflict of interest: A.U. Wells has nothing to disclose.
Conflict of interest: S.S. Birring has nothing to disclose.
Conflict of interest: P. Edmonds has nothing to disclose.
Conflict of interest: I.J. Higginson has nothing to disclose.
Support statement: This study/project is supported by the National Institute for Health Research (NIHR) Applied Research Collaboration South London (NIHR ARC South London) at King's College Hospital NHS Foundation Trust. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
- ReceivedÂ March 23, 2020.
- AcceptedÂ April 5, 2020.
- Copyright Â©ERS 2020