key: cord-0949753-9mo6h3l3 authors: Bajwah, S.; Wilcock, A.; Towers, R.; Costantini, M.; Bausewein, C.; Simon, S. T.; Bendstrup, E.; Prentice, W.; Johnson, M. J.; Currow, D. C.; Kreuter, M.; Wells, A. U.; Birring, S. S.; Edmonds, P.; Higginson, I. J. title: Managing the supportive care needs of those affected by COVID-19 date: 2020-04-09 journal: Eur Respir J DOI: 10.1183/13993003.00815-2020 sha: 141f558f112120b3df0c6bd8fc046b6ef150d770 doc_id: 949753 cord_uid: 9mo6h3l3 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, in about 20% the illness causes respiratory compromise severe enough to require hospital admission [1]. 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, e.g. super-imposed bacterial infection, and any underlying co-morbidities, e.g. chronic obstructive pulmonary disease, congestive heart failure. To date, no antiviral agent has shown to be effective in treating the disease [2]. 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, in about 20% the illness causes respiratory compromise severe enough to require hospital admission. [1] 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, e.g. super-imposed bacterial infection, and any underlying co-morbidities, e.g. chronic obstructive pulmonary disease, congestive heart failure. To date, no antiviral agent has shown to be effective in treating the disease. [2] Patients with severe disease not considered suitable for escalation to intensive care, i.e. those who are frail or have multiple co-morbidities, are at very high risk of dying, with an estimated death rate of 15-22%. [3, 4] 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-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 (5-65%) [5] [6] [7] [8] [9] : 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. [10] Although an electric hand-held fan directed at the face is helpful in other settings [10, 11] , 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. [12, 13] 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, e.g. midazolam (Table 1) . 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 [14] , but not when mild or absent. [15] In a comatose/unresponsive dying patient, oxygen can be titrated down with goal of discontinuation, while concurrently managing symptoms of breathlessness. [16] Cough (70-80%) [5] [6] [7] [8] [9] : Potential mechanisms in viral respiratory infection and ARDS include inflammation, epithelial damage, mucus impaction and neuro-modulatory changes (heightened cough reflex sensitivity). [17] Evidence for effective management of acute cough is limited. [18, 19] Adequate hydration and regular small sips of water may help. [20] 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 [21, 22] , but relatively low doses of long-acting oral morphine (5-10mg twice daily) are helpful in refractory chronic cough (Table 1) . [21] Although these patients do not have chronic cough, opioids may be helpful in reducing cough alongside treatment for breathlessness. [22] Delirium: Delirium is common in medical illness and almost universal in the last days-hours of life. Non-pharmacological management includes regular orientation, avoiding constipation, treating pain, maintaining oxygenation and avoiding urinary retention. [23] 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 (See Table 1 ) to allow rapid titration if needed. Anxiety: 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. [24] Optimal relief may necessitate increasing depths of sedation rapidly in the last days-hours or of life, particularly when associated with severe breathlessness (See Table 1 ). 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 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 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. [26] Spiritual wellbeing offers some protection against end of life despair in those for whom death is imminent. [26] 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 carers. [27] 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. Figure 1 here Alongside active measures to treat the disease, it is important that we reduce the distress that you may experience. This is done through treating your symptoms: • Breathlessness can be improved by keeping as calm and relaxed as possible, but if your breathlessness gets worse, we will use medication to help with this. Morphine is the most common medicine used. Although usually given for pain, morphine can be used safely to relieve the feeling of breathlessness. • Cough can also be relieved by morphine. • Anxiety can be common; medicines used to help with this symptom include lorazepam and midazolam. • Restlessness can occur if you develop a fever and this can be controlled using paracetamol. All medicines will be given regularly and when you need them. If you become unable to swallow the medicine, it can be given as an injection either through a vein or under the skin. In the most serious cases, COVID-19 can severely affect the lungs, stopping them from working normally. A ventilator may be used to move air into and out of the lungs to help you breathe. You may need to be on a ventilator for several days until your lungs are able to work properly again. Can I decide how I am treated? COVID-19 can cause minor to serious illness. You have been admitted to hospital with COVID-19 so that we can monitor your breathing. Your breathing may need to be supported with oxygen and sometimes with a ventilator (artificial breathing). We also want to help with any symptoms you may have. This leaflet will explain what treatment you may receive, and what support will be available. You should talk to the doctors about what is important to you. You may have preferences about how and when certain actions should be taken. For example, when to start ventilation or whether to restart the heart if it stops. The doctors will take your views into consideration together with your medical condition. Difficult decisions about your medical care may need to be made quickly if you become unwell so it is important that you let the medical team know what you want them to do. If you are unsure, please discuss this with a member of the medical team. There are strict isolation rules in place both outside and inside the hospital, which means that you may not be allowed visitors. Any visitors will have to wear personal protective equipment (otherwise known as PPE -face masks etc.). Where possible, ward staff will try to help you communicate with people important to you by telephone or video calls. Please let the ward staff know if you are happy for them to share information in this way and if there are specific people you wish to be kept informed. We understand that this is a difficult time. You may want to talk about how you feel. Please ask a member of the ward staff to contact any of the following support services that are available to you: Alongside active measures to treat the disease, it is important that we reduce the distress that they may experience. This is done through treating symptoms: • Breathlessness can be improved by keeping as calm and relaxed as possible, but if breathlessness gets worse, we will use medication to help with this. Morphine is the most common medicine used. Although usually given for pain, morphine can be used safely to relieve the feeling of breathlessness. • Cough can also be relieved by morphine. • Anxiety can be common; medicines used to help with this symptom include lorazepam and midazolam. • Restlessness can occur if a fever develops and this can be controlled using paracetamol. All medicines will be given regularly and when needed. Medicines can be given as an injection either through a vein or under the skin if necessary. In the most serious cases, COVID-19 can severely affect the lungs, stopping them from working normally. A ventilator may be used to move air into and out of the lungs to help with breathing. A ventilator may be used for several days until the lungs are able to work properly again. What treatment will they receive? How can I communicate with them? can cause minor to serious illness. Your family member/friend has been admitted to hospital with COVID-19 so that we can monitor their breathing. Their breathing may need to be supported with oxygen and sometimes with a ventilator (artificial breathing). We will also help with any symptoms they may have. This leaflet will explain what treatment they may receive, and what support will be available to them and you. Difficult decisions about the care your family member/friend receives may need to be made rapidly by the medical teams. For example, when to start ventilation or whether to restart the heart if it stops. Please let the medical team know whether you have had these discussions with your family member/friend already and what they said. If you are unsure, then please discuss with one of the medical team. Many of the conversations with the doctors and nurses will have to take place on the telephone and we recognise that this will be difficult. Please make sure we have your correct contact details and let the ward staff know if you wish to be kept informed. There are strict isolation rules in place both outside and inside the hospital, which means that you may not be allowed to visit. If visiting the hospital, you will have to wear personal protective equipment (otherwise known as PPE -face masks etc.). Where possible, ward staff will help you communicate by telephone or video calls. xxx WHO-China Joint Mission. Report of the WHO-China Joint Mission on Coronavirus Disease Audio Interview: New Research on Possible Treatments for Covid-19 Clinical course and risk factors for mortality of adult inpatients with COVID-19 in Wuhan Comorbidity and its impact on 1,590 patients with COVID-19 in China: A Nationwide Analysis Clinical characteristics of coronavirus disease 2019 in China Clinical course and outcomes of critically ill patients with SARS-CoV-2 pneumonia in Wuhan, China: a single-centered, retrospective, observational study. The Lancet Respiratory Medicine Clinical findings in a group of patients infected with the 2019 novel coronavirus (SARS-Cov-2) outside of Wuhan, China: retrospective case series The clinical dynamics of 18 cases of COVID-19 outside of Wuhan, China High-resolution CT features of 17 cases of Corona Virus Disease An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial How does a new breathlessness support service affect patients? Effects of opioids on breathlessness and exercise capacity in chronic obstructive pulmonary disease. A systematic review One evidence base three stories: do opioids relieve chronic breathlessness? Effects of oxygen on dyspnoea in hypoxaemic terminal-cancer patients Effect of palliative oxygen versus room air in relief of breathlessness in patients with refractory dyspnoea: a double-blind, randomised controlled trial Oxygen is nonbeneficial for most patients who are near death How does rhinovirus cause the common cold cough? Pharmacologic and nonpharmacologic treatment for acute cough associated with the common cold Adult outpatients with acute cough due to suspected pneumonia or influenza: CHEST Guideline and Expert Panel Report Physiotherapy, and speech and language therapy intervention for patients with refractory chronic cough: a multicentre randomised control trial Effect of inhaled and systemic opiates on responses to inhaled capsaicin in humans ERS guidelines on the diagnosis and treatment of chronic cough in adults and children Risk reduction and Management of delirium Practice guideline for the treatment of patients with panic disorder Predictors of Complicated Grief: A Systematic Review of Empirical Studies Effect of spiritual well-being on end-of-life despair in terminally-ill cancer patients. The lancet A novel picture guide to improve spiritual care and reduce anxiety in mechanically ventilated adults in the intensive care unit