| Literature DB >> 33197412 |
Eefje M Sizoo1, Annelie A Monnier2, Maryam Bloemen2, Cees M P M Hertogh2, Martin Smalbrugge2.
Abstract
OBJECTIVES: To mitigate the spread of COVID-19, a nationwide restriction for all visitors of residents of long-term care facilities including nursing homes (NHs) was established in the Netherlands. The aim of this study was an exploration of dilemmas experienced by elderly care physicians (ECPs) as a result of the COVID-19 driven restrictive visiting policy. SETTING AND PARTICIPANTS: ECPs working in Dutch NHs.Entities:
Keywords: COVID-19; Elderly care; nursing homes; visiting policy
Mesh:
Year: 2020 PMID: 33197412 PMCID: PMC7584414 DOI: 10.1016/j.jamda.2020.10.024
Source DB: PubMed Journal: J Am Med Dir Assoc ISSN: 1525-8610 Impact factor: 4.669
Fig. 1Timeline of the Dutch responses to COVID-19 in the nursing home setting.
Open-ended Questionnaire
Please describe a situation related to the restrictive visitor's policy that led to dilemmas. What affected you most in this situation? Could you describe what impact it had on you? Did considerations relating to the resident play a role? If yes, which ones? Did considerations relating to the resident's family play a role? If yes, which ones? Did considerations relating to the nursing staff play a role? If yes, which ones? Did considerations relating to the care unit play a role? If yes, which ones? Did considerations relating to the organization play a role? If yes, which ones? Did any other considerations play a role? What was decided upon regarding the dilemma and who was involved in the decision? Are there any other (not previously) mentioned considerations that should be taken into account regarding the visitor's policy? |
Quotations of Elderly Care Physicians Illustrating the Emerging Themes
| I. Dilemmas as a result of the general strict visitor restriction |
“It remains a ‘Devil's bargain’: protecting clients from infection (keeping the outside world out) and having contact with the people you love.” “The dilemma concerns allowing visits for the patient's quality of life versus the risk of loved ones becoming ill and further spread in society.” |
| Infection prevention “In my nursing home, I observe how much suffering Corona causes and how many people fall victim to it. The risk of spreading should really not be taken.” “… for that person, it does not actually matter whether corona is an added condition (although I understand that it is about the protection of the institution and not of the individual patient).” “Obviously, you want to ensure the safety of the residents in the department.” “Measures also protect the professionals in particular: they are very vulnerable to be infected or to spread the coronavirus.” “Society knows what is going on. You do not need to explain to loved ones they are not allowed to come.” “Remarkable how much understanding we receive from family members when we explain the dilemmas we face.” “Relatives who continue to argue about the framework in which visits are possible.” |
| Quality of life Importance of visitors “In this phase of life, quality is most important. Living secluded, away from loved ones in quarantine is not appropriate for quality of life.” “For patients on the psychogeriatric care units, maximizing quality of life is the main aim. To this respect, visiting and contact with loved ones is the most important thing.” “She literally said: now that I can no longer see my family, I have nothing left to live for.” “The need to allow her to be supported her in her suffering.” “The partner visits a patient with dementia daily. Partner helps the patient with feeding, among other things.” Impact of visitor restriction “Her fear, sadness and loneliness, very tangible and strongly present, mimicking depression.” “Partner explained he visited his wife with dementia daily, helped her feeding for hours. Since he has not been allowed back, she did not eat and drink enough.” “Several other residents who suffer more psychologically and even experience more physical pain as a result of the social suffering. As a doctor, you try to treat this but the solution is elsewhere.” “Still, there are several poignant cases with severe cognitive decline, partly as a result of the absence of daily contact with family, which is an essential factor.” “The resident is in danger of not recognizing the partner after a long time, in particular when video calls are not understood.” “Increase of behavior problems, in particular agitation and physical contact towards nursing staff after the wife was not allowed to be with her husband in the afternoon. Causes an increase in psychotropic drug use and major pressure on nursing staff.” “No visits also results in peace on the care units. For some of the people it is very hard, but another part is more calm and thrives.” |
| II. Dilemmas as a result of the exception in the dying phase |
“The dilemma is allowing visitors from the angle of quality of life for the patient, versus the risk of infection from loved ones and further contamination into society.” “The right to being surrounded by family as you pass away.” “A goodbye in person is something I see as very valuable.” |
| Assessing the dying phase “Wife was asked to husband short before he passed away, sometimes it is hard to estimate being terminal. Then we are too late. This occurs sometimes, also during normal times, but then the family would already have had the opportunity to say goodbye when the patient became ill.” “Is the daughter allowed to visit her mother despite the mother not being terminal yet, but while she is still communicative.” “His last days/weeks/months are lonely.” “I would not be surprised if this resident passes away during the corona crisis from something other than corona. It is tough for the family that they are not able to follow this process, not until he is on his deathbed. The processes of saying goodbye and acceptance are much harder to start.” “If we allow visitors now, we might have to allow it with others as well.” |
| Implementation the exception “That I have to decide how many family members can say goodbye or not. Conflict between adhering to policy and rules and the human dimension.” “Mrs with 4 daughters (…) You can't let children decide amongst themselves who is allowed to visit, right?” “Allowing low-threshold visitation (if life expectancy is uncertain) we will have even fewer PPE at our disposal, since family also needs to wear PPE.” “Patient was terminal and visitors were allowed, a maximum of 2 people per day. Except, these 2 would walk in and out throughout the day (…) This made me realize that the policy of ‘2 people a day in the terminal phase’ is not specific enough. Are they allowed to walk in and out? How long are they allowed to stay?” “Nursing was given the job and responsibility to lead the process of visiting which went well, but it was scary for them.” “The care unit was still covid-free at that point. The risk of infection coming in with this family was deemed high, due to contact with the covid-positive wife who had passed away.” “Family was invited to come visit sir (a maximum of 2 people at a time, without symptoms and without a fever). The eldest daughter has coughing complaints, chronically according to her. How do you make a decision in a case like that.” |
| III. Impact on Elderly Care Physicians |
“The fact that I had to decide whether a son could see his mother was something I found agonizing, while it wasn't even necessarily my decision in the first place, it was the government's decision.” “Suboptimal care. Normally in these situations, family that could help with care are now shut out. Is this a good decision?” “Seeing agitation increase, and knowing that family could have a positive influence but not being allowed to allow them in and having to explain that to the family. Feels terrible. Painful. Poor quality of care.” “But sometimes it is so unexpected when it comes to COVID, it makes me feel scared that I am withholding a goodbye from family and patient.” “Impotence to find a good solution. It occupies my mind, day and night.” “This is unacceptable, I feel I am falling short, powerless and also angry at this entire situation. Inhumanly sad, it deeply affects me.” “Very poignant, this should not have happened this way.” “So tangible (…) it is such an inhumane happening and I am personally having a really difficult time with this decision.” “It gives you a real feeling of injustice and doubt about whether something weighs up against the risk that comes with allowing visitation.” |
| IV. Diversity calls for tailored solutions |
“It is a young man with a one-sided paralysis after a CVA, but he is cognitively well. He can make informed considerations and express himself well.” “Relatively young patient, with MS with severe paraparesis (…) She is able to communicate with loved ones via several forms of media.” “She can't express herself well, verbally, which makes communication through the telephone or video calls not possible, which creates more emotions and frustrations.” “Communication with daughter through video calls led to more agitation, paranoia and delirious phenomena.” “Really account for the humanity. As per usual, also in this case, we weigh the risks, not only to the patient but also to their loved ones and the nursing staff.” “The government policy is not pleasant. There is too little attention for proportional decision-making and tailoring.” “Individual tailoring is strongly preferred, especially when considering the rights of the hospitalized patient.” “It also depends on location. Some places have gardens where visitation ‘at the gates’ works really well.” “On the ground floor we were able to make arrangements that the rest of the family could stand at the window to be a part of the moment [ritual when passing away] with the pastor.” “Audiofiles of sir, that could then be played back.” “On scaffolding in front of a window also won't work, Mrs does not understand that and it will only end in drama.” “When you're sick, a videocall is not enough.” “Allowing the husband onto the care unit would most likely have caused such unrest and aggravation with other patients that we decided against it.” “If you make an exception for one person, then why not for the other. Who is suffering the most under this measure.” “Because then more cases would qualify for this exemption which would make it hard to safeguard the boundaries (in consultation with the local crisis team).” “A decision was made with all involved disciplines (nurse, supervising elderly care physician, teamleader, psychologist).” “Eventually the husband decided to take the patient home for an indefinite amount of time. Not ideal because of the severity of care, but when weighing the risks they still made this decision.” “Client with many children discharged themselves for terminal care at home so that everyone could say goodbye at home. Eventually satisfactory for the family, though still hectic in a terminal phase.” |
Codes and Illustrative quotes Relating to COVID-19 Measures in Dutch Nursing Homes Beyond the Restrictive Visitors' Policy
| Isolation | “Covid-negative client, displays no symptoms, has to stay in his room because the care unit is closed due to a covid-positive client, family member wants to put on PPE and pick up client in PPE, to take them outside so they are no longer in a sad mood and will eat and drink again.” “Yes, that too, it would be more pleasant to be able to go outside with a few people to keep the situation on the care unit bearable. In many cases, this prevents agitation and behavioral problems among clients with dementia.” |
| Isolation and psychotropic drugs | “Sedating patients who are infected and don't remain in their rooms. Isolating and sedating ‘walkers,’ with as a result: an unpleasant end of life.” “Severe agitation with a PG-resident who can be calmed by family and requires more sedating medication out of necessity.” “Psychiatric drugs became necessary to improve the quality of life, with drowsiness and decreased mobility as a result.” “Sir now receives an increase of clozapine-medication, while it is unclear whether a nonmedicated visit of family could be more effective.” |
| Freedom restriction | The residents' world was already small, now it is even more limited because they can no longer receive family and friends, and are also locked inside the nursing home. The fact that residents cannot go outside themselves is very restrictive and increases psychological complaints. |
| Freedom restriction and tailoring to residents | “It would be nice if national policy would be that those to whom it relates, and to whom sitting in the courtyard is not enough, could go for a daily walk around the house or (duo)cycling accompanied by a member of staff.” “I find it difficult that they are not allowed to go outside under the condition that they have no social contact, don't go to the supermarket etc. A stroll around the block of a client with dementia accompanied by a member of staff, without any other form of social contact, should be possible.” “The client with the spinal cord injury has complete autonomy over his life, despite the dependence on care. He would be capable of adhering to social rules. However, he is in a total lockdown and I am in an intelligent lockdown.” “It feels unethical to restrict someone in their freedom, if your expectation is that he would act responsibly.” “In my opinion, riding around on empty parking lots or visiting quiet parks barely increases the risk of infection, but increases the feeling of freedom.” “Taking away the option of going out for fresh air from a cognitively competent person on an uninfected care unit, even when they adhere well to regulations, is something I consider a strong intervention of their right to lead their own life. The risk of spreading corona verses the restriction of freedom is, in my opinion, disproportional. ” |
| Communication | “What is difficult is that most of the contact is through telephone, there is no face-to-face contact. It makes communicating different, and more difficult.” “Immediate incident with a resident, rectal blood loss. Considering the stage of dementia, we will wait and see, and temporarily stop using anticoagulants. Scared wife on the phone, fears cancer, cries. Reassured with difficulty. A personal conversation would have been better.” |
| Less help | “There is little deployment of volunteers, spiritual care or psychologists possible, because they are also required to work from a distance as much as possible. This has caused the deployment of help with her mood to be slowed down.” |
| Alternatives for therapies and care | “She currently does receive a psychologist and spiritual caretaker in her room because of the urgency, but visitors are still not allowed. An attempt will be made to improve that through videocalling or standing on the balcony with a baby monitor.” |
Additional Consequences of the Restrictive Visitors' Policy
| Impact on next-of-kin | “Family also found it very hard to hear her speech was declining as a result of ALS and they could not come to see her, to talk to her about it.” “Family is losing autonomy: I can see this is painful for them.” “The powerlessness and frustration of partner and the major worries this caused.” |
| Impact on nursing staff | “Informing families more often and better, many extra reports by nursing staff, use of video calls etcetera. Nursing staff experience this impotence too and are not always able to provide extra care.” “The team is more at ease as there is no traffic of various people and professionals across the care units. Therefore, they have more time for residents.” |
| Practical implications for ECPs | “This took a lot of effort by phone from my side to maintain a good doctor-patient relationship.” “Guidance of care-teams and explaining decisions take a lot of time.” |
Aspects to be Considered Around Dilemmas Caused by Visiting Policies
| Level | Considered Aspects |
|---|---|
| Resident | Residents' view on risk of COVID-19 |
| Connotation of receiving visitors for resident: Saying goodbye to loved ones Presence in the dying phase Receiving additional care Mutual support in crisis Impact on quality of life | |
| COVID-19 confirmed? | |
| COVID-19 related symptoms? | |
| Life expectancy: Months to years Weeks to months Dying phase | |
| Symptoms as a result of the visitor's restriction Loneliness Depressive symptoms, depression Decreased intake Neuropsychiatric symptoms (increased or decreased) Physical complaints (for example pain) Physical or mental deterioration | |
| Are alternative solutions for social contact applicable and satisfactory? Technical solutions Creative real-life solutions | |
| Are alternative solutions to decrease symptoms proportional? | |
| Visitor | COVID-19 confirmed? |
| COVID-19 related symptoms? | |
| Connotation of visiting the resident for specific visitor: Being able to say goodbye to loved one Being involved in resident's disease process/process of decline Being involved in resident's care process Being involved in resident's daily life Mutual support in crisis Impact on quality of life visitor | |
| Has specific visitor a structural role in the care process: Assisting with intake Assisting in communication, ie, in case of dysarthria or language barrier Involved in daily routine | |
| Are alternative solutions for social contact applicable and satisfactory for the specific visitor? Technical solutions Creative real-life solutions | |
| Sufficient availability of personal protection equipment for visitors? |
Note: Several aspects are illustrative, this is a noncomprehensive list.
As estimated by the physician.