Table 1.
General Themes and Palliative/End-of-Life Care Themes Identified in Guidance Documents (n = 21)
| Themes | Subthemes | Examples of Excerpts Underlying Theme (Source) | No. of Different Guidance Documents Covering Theme | No. of Excerpts Underlying Theme | Documents That Addressed Theme |
|---|---|---|---|---|---|
| General Themes | |||||
| Theme 1: Preparation of the nursing home for COVID-19 outbreak (capacity for staffing, equipment, supplies) | “All care homes should have a business continuity policy in place including a plan for surge capacity for staffing, including volunteers”13 “RCF settings must have COVID-19 preparedness plans in place to include planning for cohorting of residents (COVID-19 separate from non-COVID-19), enhanced IPC, staff training, establishing surge capacity, promoting resident and family communication.”12 |
10 | 15 | 6; 7; 8; 10; 11; 12; 13; 14; 15; 20 | |
| Theme 2: Prevention, outbreak management, and control measures | 14 | 90 | |||
| 2.1. Preventive and control measures, including outbreak management in residents and staff | “Minimum precautions to reduce the general risk of transmission of acute respiratory infections: …”20 “Physical distancing in the facility should be instituted to reduce the spread of COVID-19”1 |
13 | 72 | 1; 3; 5; 6; 7; 8; 11; 12; 13; 14; 15; 19; 20 | |
| 2.2. General communication about precautions to family | “Creating/increasing listserv communication to update families, such as advising to not visit.”5 | 3 | 4 | 5; 8; 12 | |
| 2.3. Alternative ways of in-person visits with family and physicians | “Primary care providers are encouraged to work with care home staff to enable video consultations”15 “Schedule phone or video conferencing between the residents and families”8 |
9 | 14 | 1; 5; 6; 8; 9; 10; 13; 1415 | |
| Theme 3: Education and information about prevention, control, and early COVID-19 symptom recognition and treatment | 10 | 25 | |||
| 3.1. Education and information for residents and family | “Provide information sessions for residents on COVID-19 to inform them about the virus, the disease it causes, and how to protect themselves from infection”1 | 5 | 5 | 1; 3; 5; 6; 12 | |
| 3.2. Education for staff | “We recommend facilities re-educate all staff, clinical and nonclinical on proper use of personal protective equipment (PPE) and infection control practices.”7 | 8 | 20 | 1; 5; 7; 8; 12; 13; 14; 15 | |
| Theme 4: Surveillance/monitoring and identification of suspected COVID-19 | 13 | 40 | |||
| 4.1. Early COVID symptom recognition and general screening advice | “The facility should ensure that there is active monitoring of residents, twice daily, for signs and symptoms of respiratory illness or changes in their baseline condition, for example, increased confusion, falls, and loss of appetite or sudden deterioration in chronic respiratory disease.”12 | 12 | 25 | 1; 3; 5; 6; 7; 8; 12; 13; 14; 15; 19; 20 | |
| 4.2. Typical symptoms and multimorbidity in older adults | “Elderly persons often have nonclassic respiratory symptoms”12 | 7 | 15 | 3; 8; 11; 12; 13; 14; 15 | |
| Theme 5: Testing for CoV-SARS-19 | “Any suspect case in these facilities should be under investigation and tested.”20 | 1 | 2 | 20 | |
| Theme 6: Hospital admission and transfer procedures | 12 | 40 | |||
| 6.1. Transfer of healthy adults to home/other setting | “Any request to transfer a resident from the ARC bubble to the family household bubble during the period of lockdown should be determined on an exceptional basis.”20 | 1 | 1 | 20 | |
| 6.2. New admissions into the LTCF | “Care homes should remain open to new admissions as much as possible”15 “Where there is evidence of a cluster or outbreak of COVID-19 … the facility should close to admissions day care facilities and visitors.”14 |
7 | 11 | 7; 8; 12; 13; 14; 15; 20 | |
| 6.3. Procedures for hospital transfers (how and what staff should do and communicate to emergency staff and geriatric departments) | “Before transfer, emergency medical services and the receiving facility should be alerted to the resident's diagnosis, and precautions to be taken including placing a facemask on the resident during transfer.”5 | 5 | 8 | 5; 8; 11; 14; 19 | |
| 6.4. Triage advice regarding hospital or ICU transfers | “Decisions to deny or prioritize care should always be discussed with at least two, but preferably three physicians with experience in the treatment of respiratory failure in the ICU.”21 “GP and ambulance services may aim to triage residents remotely, based on the level of carer concern and their vital signs.”15 |
2 | 5 | 15; 21 | |
| 6.5. (re)admissions to nursing home (from hospital) | “Residential facilities must support the return of their residents from hospital once they are medically stable”20 “Nursing homes should admit any individuals that they would normally admit to their facility, including individuals from hospitals where a case of COVID-19 was/is present.”5 |
8 | 15 | 1; 5; 11; 12; 13; 14; 15; 20 | |
| Theme 7: General treatment advice for early COVID-19 symptoms | “Approach for fever—nonpharmacological approach: Icepacks at the groin region of body—A wet washcloth—Refresh the patient regularly—Change sheets and clothes—Install a fan”21 | 5 | 22 | 3; 10; 17; 19; 21 | |
| Theme 8: General psychosocial support regarding loneliness, stress, and anxiety not related to end of life | 8 | 23 | |||
| 8.1. for residents | “Care home staff are encouraged to work with residents to address their fears”15 | 7 | 11 | 1; 8; 10; 12; 14; 15; 18 | |
| 8.2. for family | “Ensure family members have access to psychosocial support.”18 | 1 | 2 | ||
| 8.3. for staff | “Regularly and supportively monitor all staff for their well-being and foster an environment for timely communication and provision of care with accurate updates.”1 | 5 | 10 | 1; 12; 15; 18; 21 | |
| Theme 9: Specific considerations for people living with dementia | “Care homes should have standard operating procedures for isolating residents who ‘walk with purpose’ (often referred to as ‘wandering’) as a consequence of cognitive impairment. Behavioral interventions may be employed but physical restraint should not be used.”15 “It may be more difficult for temporary staff members [to know the person living with dementia] … A nurse, or social worker or staff … should complete a personal information form.”9 |
6 | 11 | 6; 9; 13; 14; 15; 20 | |
| palliative Care Themes | |||||
| Theme 1: Saying goodbye, visits at the end of life and bereavement | 17 | 34 | |||
| 1.1. Family preparation for impeding death or severe symptoms of resident | “The procedure for patients with severe pneumonia should be discussed with their relatives”19 “Communicating openly with everyone involved about the impending death”21 |
4 | 4 | 9; 10; 19; 21 | |
| 1.2. Visits in end-of-life/compassionate situations | “Family & friends should be advised that all but essential visiting (for example end of life) is suspended in the interest of protecting residents at this time.”12 “Facilities should restrict visitation of all visitors and nonessential health care personnel, except for certain compassionate care situations, such as an end-of-life situation.”4 |
12 | 28 | 1; 4; 5; 6; 7; 8; 11; 12; 14; 15; 17; 20 | |
| 1.3. Family bereavement | “Geef reeds aan hoe de postmortale zorg geregeld is” [Indicate how bereavement care is arranged]10 | 2 | 2 | 10; 18 | |
| Theme 2: Symptom management at end of life | 8 | 38 | |||
| 2.1. Comfort care in general without reference to specific symptoms | “Medications meant to provide comfort, including at the end of life … morphine, lorazepam, and similar agents.”8 | 1 | 4 | 8 | |
| 2.2. Delirium | “Delier - haloperidol <70 jaar: x mg … ” [medication for delirium]10 | 2 | 2 | 10; 11 | |
| 2.3. Dyspnea | “DYSPNOE in the terminal phase: in patient who does not use opioids—start morphine continuously … ”21 | 2 | 3 | 10; 21 | |
| 2.4. Anxiety, agitation, or terminal restlessness | “For agitation/restlessness: METHOTRIMEPRAZINE …”16 | 3 | 7 | 10; 16; 21 | |
| 2.5. Breathlessness or respiratory secretion | “Respiratory secretions/congestion near end-of-life. Advise family & bedside staff: not usually uncomfortable, just noisy, due to patient weakness/not able to clear secretions”16 “Oxygen should not be boosted based on oxygen saturation; it is part of normal dying that a patient desaturates”21 |
4 | 6 | 3; 10; 16; 21 | |
| 2.6. Adapting or discontinuation of (burdensome) medication | “No longer measure saturations in a terminal phase”21 “Early detection of inappropriate medication prescriptions is recommended to prevent adverse drug events and drug interactions”3 |
5 | 9 | 3; 10; 14; 19; 21 | |
| 2.7. Palliative (deep) sedation | “If the measures described above with morphine and low-dose benzodiazepines (midazolam) provide insufficient symptom control and the shortness of breath or choking sensation is refractory, initiate DEEP SEDATION if possible after consultation with family and caregivers.”21 | 3 | 7 | 10; 11; 21 | |
| Theme 3: Spiritual care, including religious or cultural support at the end of life | “Specialists in pastoral care as a discipline for spiritual care are present and part of the expanded care team available and make residents, relatives, as well as employees offer spiritual support” [translation by authors]18 “Religious/cultural support and rites may be very important to some residents of RCF, in particular toward end of life”12 |
3 | 10 | 12; 14; 18 | |
| Theme 4: Clinical decision-making toward the end of life | 13 | 41 | |||
| 4.1. Frailty/capacity screening to guide clinical decision-making | “Health care professionals may find the Clinical Frailty Scale (CFS) to be a useful resource in making and discussing escalation decisions”15 “Nursing home population mainly has CFS below 6-9, at which stage hospital admission for COVID-19 might not be adding much value” (translation by authors)11 |
4 | 8 | 11; 13; 15; 21 | |
| 4.2. Specialist advice and multidisciplinary collaboration in clinical decision-making | “The GP and/or ARC facility (when GP is unavailable) will access specialist advice by telephone (geriatrician/general medicine) before any transfer to hospital.”20 “Ensure multidisciplinary collaboration among physicians, nurses, pharmacists, other health care professionals in the decision-making process to address multimorbidity and functional decline”3 |
4 | 5 | 3; 13; 15; 20 | |
| 4.3. Appropriateness of CPR, oxygen administration, or mechanical ventilation | “Extracorporeal membrane oxygenation (ECMO) should never be considered in this age group regardless of COVID-19.”21 “Very few mechanically ventilated elderly patients with acute respiratory distress syndrome (ARDS) survive.”17 |
3 | 6 | 6; 9; 12 | |
| 4.4. Appropriateness of hospital/ICU admission | “For residents with mild illness, we recommend to treat-in-place. For those with moderate to severe symptoms, consider hospital transfer if that is part of their goals of care.”8 “The question whether hospital admission is indicated for elderly COVID-19 patients with multimorbidity needs to be very carefully considered; it may only be appropriate in the event of complications of concurrent diseases”17 |
11 | 22 | 3; 8; 11; 12; 13; 14; 15; 17; 19; 20; 21 | |
| Theme 5: Foreseeing stock of medication and prescription chart to enable palliative care | “Care homes should work with GPs and local pharmacists to ensure that they have a stock of anticipatory medications and the community prescription chart, to enable, at short notice, palliative care for residents”15 | 1 | 2 | 15 | |
| Theme 6: Need for specialist palliative care advice and involvement of palliative care teams | “If a difficult course is to be expected, a specialized palliative care team can also be called in for palliative care … ”19 “If required, MPC [mobile palliative care] teams are also to be called in to residential and nursing homes to ensure optimal treatment”17 |
7 | 10 | 8; 10; 15; 16; 17; 19; 21 | |
| Theme 7: Communication about wishes regarding care and treatment, advance care planning, and goals of care discussions in emergency situations | “BEFORE enacting these recommendations, PLEASE clarify patient's GOALS OF CARE these recommendations are consistent with: DNR, no ICU transfer, comfort-focused supportive care”16 “Assess the appropriateness of hospitalization: consult the resident's Advance Care Plan/Treatment Escalation Plan and discuss with the resident and/or their family”13 |
14 | 33 | 3; 5; 8; 9; 10; 11; 13; 14; 15; 16; 17; 19; 20; 21 | |
| Theme 8: Preparations of the body and funeral arrangements | “To date, there is no evidence of persons having become infected from exposure to the bodies of persons who died from COVID-19.”2 “It is crucial to abide by guidance on the preparation of the body and transportation.”14 |
4 | 10 | 2; 12; 13; 14 | |
Bold is overall sum of number of documents in which the theme was addressed.