In three years, 5,800 patients left the beds they occupied in hospitals throughout the country, where they were because they had no one and nowhere else to go. Today the number is in the hundreds, but still “excessive” because “the impact on the patient and on the NHS is enormous”. The government has signed a new decree to improve responses in this area, and those on the ground are hoping that “what is written” will be fulfilled.
The lives of Manuel and Joaquim (fictitious names) crossed in 2022, when each had passed the age of 80. An episode of illness led them to be admitted to the Centro Hospitalar Universitário Lisboa Central (CHULC), where they were treated and clinically discharged, but both had to continue living in one of the unit’s wards for almost another year. Manuel stayed for 310 days and Joaquim for 259 days. For both, the solution came in 2023, but others like them keep coming and some are still there. And some have been waiting for more than four or five months.
The coordinator of CHULC’s social service, Ana Ribeiro, gives the numbers and paints a picture: “To date (February 15), we have 28 patients admitted exclusively for social reasons in the six hospitals that make up our center. One of the delayed patients [as they are called] has been waiting for 152 days for an answer from the Loures-Odivelas Social Security, and another, who is also waiting for an answer from the same entity, has been waiting for 119 days”.
But, he points out, “in total, these 28 patients represent 987 days of hospitalization, more than three years,” adding that “the number of patients is important, but it’s not as important as the number of days it costs the National Health Service (NHS). Can you imagine how many patients are still waiting for an inpatient bed?
Nevertheless, this is not the moment when Ana Ribeiro says she has “many patients with a greater number of days of postponement after clinical discharge”. In fact, the scenario before the pandemic was more extensive, although now “the cases that appear are more serious and complex,” the technician maintains. Before the pandemic, the vast majority of hospitals were able to keep patients in delayed hospitalization for one, two or even more years. The social side was not able to respond, especially when the solution was integration in a nursing home. Some patients even ended their days without being able to reach this solution.
Three years later, despite the current situation, it can be said that the COVID-19 pandemic changed this reality when it forced the release of beds for infected patients. At that time, the government, through the Social Security, contracted more beds in the Residential Structures for the Elderly (ERPI), speeding up the response and reception of delayed patients.
In total, in these three years, and according to data recently revealed by the Ministry of Health, 5,800 patients left hospital beds to be received in social responses. But at the end of January there were still 665 in this situation, according to the Ministry of Health’s confirmation to DN. Most of them, 433, were waiting to be integrated in a residential structure and the remaining 232 were in continuous care.
The health and social security authorities are aware that “this continues to be a challenge” and have approved a new joint decree, No. 38-A/2023, on February 2, to “strengthen coordination between the two sectors and respond to users who remain hospitalized because they do not have the conditions of autonomy or family support network to allow home care either temporarily or permanently.
The Ministry of Health hopes that this decree “will gradually guarantee a faster, more adequate and safer response to users who no longer need to remain hospitalized and, at the same time, allow a greater resolution in hospitalization management, freeing beds for patients who need hospitalization and allowing hospitals and their professionals to focus on their mission to meet the health needs of the population. And those who have been in the field for many years, like Ana Ribeiro, really want to believe that the new legislation will make a difference. But for that to happen, “what is written must be followed,” she says.
“There is still a long way to go in this area,” because one thing is certain: some patients will leave, but others will come. “The Portuguese population is increasingly older, alone, isolated and in more serious situations and in more degrading conditions than before the pandemic”.
The coordinator of CHULC’s social services tells DN that in the meantime she has already reported to various bodies, including Social Security and Santa Casa, some situations that could be resolved in accordance with the criteria defined in the new regulation, namely “with provisional or transitional solutions,” as defined by law. Although he has not yet received “an answer on the streamlining of procedures so that some of our delayed patients can leave,” he wants to continue to believe that “the new regulation will bring benefits in the future for the NHS, in terms of freeing up beds, and for patients, with their move to a more dignified place than being in a ward subject to other risks, such as new infections.
He is aware that there is “still a long way to go” in this area, because one thing is certain: some patients will leave, but others will enter. “The Portuguese population is getting older, alone, isolated and living in more serious situations and in more degrading conditions than before the pandemic,” he argues, specifying: “This is in the sense that there have been periods of confinement, of great isolation, which have led many elderly people to develop neurodegenerative diseases (dementia) and others more quickly, because they have also lost husbands, partners, neighbors and friends. All of this has affected people so much that when they arrive at the hospital, they already have a more complex social situation to deal with in addition to their illness,” explains Ana Ribeiro. “Many people arrive here without documentation, they don’t know where they kept it or why they let it expire.”
And this is where the work of a hospital’s social service begins, since it is the unit’s technicians who end up having to move “worlds and resources” to resolve many of these situations, so that the process of transferring a patient who is going to be clinically discharged to another response, namely a social one, can then begin.
The main reason for this transfer has not changed with the pandemic, it remains the same: “These are people who live alone, who are no longer able to be independent, and who in many cases also have no family support and therefore cannot return home.
From families that cooperate to those that refuse
Ana Ribeiro tells DN that what she likes to do in social services is direct action, although she is now in a management position, and that all cases are different, all have their history and their reasons, but that there are patterns, and it is these that often hinder the rationalization of responses. Manuel was one of the cases that arrived at the hospital with a signed document from Santa Casa authorizing his integration in an ERPI, but ended up staying there for 310 days after the day of his clinical discharge.
Why? “In this case, the problem was the immediate family. There was the will expressed by the patient when he was still cognitively capable of making decisions, but there were children who rejected the solution and always refused to collaborate in this process,” explains the CHULC technician: “The Santa Casa has its own procedures when there is a direct family to assess if they have the possibility to help and contribute to this solution, asking families to declare their income, and often they react in the worst way and don’t collaborate. This is what happened. There were many meetings scheduled with Santa Casa that were never attended, even with the clinical and social services team.
But even so, and when we ask if this isn’t abandonment, he argues that he “doesn’t like to talk about abandonment because, in fact, there hasn’t been much abandonment by the families. In this particular case, he continues, “the family came to see the patient, but they never cooperated with the institutions to speed up the process. We tried to make them aware, but nothing could be done. We had to report the situation to the Ministry of Public Order,” which finally decided to implement the “accompanied adult” system, in which the patient’s legal representative is someone other than the family.
A solution that meant many months of waiting for Manuel, now 93 years old. From then on, the hospital had to look for an ERPI that would accept the appointment of one of its technicians as “temporary guardian” so that all the formal procedures could be completed and the patient could leave the hospital to live in a nursing home. It was a case that required a lot of attention, a lot of bureaucracy, that dragged on for almost a year, with an enormous impact on the patient himself and on the hospital.
For example, Joaquim, 89 years old, who lived at the CHULC for 259 days after being discharged from the hospital, had no direct family, only a niece “who participated in the whole process, but was in no condition to accept it. The only chance, and since Joaquim had lost some consciousness, was his integration in a nursing home.
But here it was he himself who “at first flatly refused this solution, even though he was in no condition to return to his home, where he lived alone and already needed constant supervision.
Joaquim required the social-technical team to do a lot of work of “sensitization and awareness of their real needs and vulnerabilities, which was not easy”. In fact, assures Ana Ribeiro, “it’s a very difficult job, because if the patient has a certain orientation and doesn’t accept the solution, there’s no chance of moving him”. If the patient is intransigent, “it is necessary to look for another pathology at the cognitive and mental level, because the patient may not be at full capacity”.
“If the family is available to cooperate, the process is easier; if not, it is much longer. It involves a lot of demarches until the decision is made and a proxy is appointed”.
In this case, that was not the reason, and Joaquim finally accepted. His niece was designated as the “main companion” and it was possible to access the necessary documentation to begin the transfer process to a Santa Casa unit. Nevertheless, Joaquim did not leave the CHULC until February 2, 2023, 259 days after his clinical discharge.
The technician explains: “Of course, it makes the process much easier when there is a family willing and able to cooperate. If there isn’t, the process is much longer because there are many steps involved in getting the decision made and a primary caregiver appointed to represent the patient. Usually, the technical director or another technician from the ERPI to which the patient is being transferred takes on this role, but we have noticed in the last two years that even this availability is diminishing. These are situations of great responsibility.
If there is no family, sometimes the situation is resolved more quickly, but here it depends a lot on the responsiveness of the social side.
One day in hospital pays for half a month in a nursing home
But in both situations, Ana Ribeiro points out, “there is always a huge impact, especially for the patient, because he or she is in a ward, in a hospital environment where, no matter how much care is taken, there is a greater risk of cross-infection, which often leads to more diagnoses and more medication. On the other hand, for the hospital, there is the impact on bed management and economics,” he says, adding that it is important to remember that “the inappropriate use of a bed makes it impossible to use it for other acute patients who need care. Unfortunately, some end up in the emergency room because there are no beds in the wards.
But there’s more. Ana Ribeiro also warns that “the cost of one day in a hospital almost pays for half a month in an ERPI”. For all these reasons, she argues that, despite the new law and the interesting progress made between health and social services, “much more needs to be done to improve the articulation between services and the responses to be given”.
Prolonged hospital stays have a huge impact on the patient – because they are in a hospital environment with a higher risk of infection – and on the hospital, from a bed management and economic point of view.
He explains: “Hospitals shouldn’t have to deal with a lot of situations when a patient comes in. Especially when it’s an elderly person who lives alone, isolated, without a guardian, already losing his or her faculties, and whose situation has already been signaled by the Social Security or the “Santa Casa”, because “there are patients like this who arrive here without documentation, because no one has seen that it has expired, and without a representative appointed by the accompanied adult regime. We have to start from the beginning, when the elderly person is no longer able to make decisions, when these situations could have been prevented, when an elderly person goes through a process like this, losing his faculties, it doesn’t get better, it tends to get worse, and then it’s very difficult to find a quick solution.
Legal problems should be avoided
The social services coordinator even points out something that she believes is becoming increasingly important in practice. “There is a lot of talk about prevention, which is almost always associated with health, when we should also be talking about and applying it to legal issues, to facilitate the processes that keep patients in hospitals”.
And it is compelling: “It is one thing when a patient arrives at the hospital for the first time with a stroke, already suffering from some dementia, and at the same time in a legal context without a representative, without a citizen’s card, without an adequate home, or without support. Another is when he arrives without any of these things and is even reported to the Social Security or Santa Casa. The legal situations must be verified and worked on as soon as they are identified,” he warns, because the ideal is for the patient to have an answer to his case “on the day of his clinical discharge, or a day or two later at the most.
On the hospital side, after many years of direct action, the teams understand which patients will need social responses and begin to deal with them “as soon as the patient enters the ward”. “We work in an integrated way, with the medical and nursing teams, and with great proximity on a daily basis, and we start the processes. What remains is the response on the social side,” he says.
The technician hopes that with the new regulation, and as this progresses with temporary solutions for the most accompanied and for the integration in ERPI, “the identified situations will be rationalized”. And she, who has already listed with the social entities some situations that could be solved with temporary solutions, even hopes that “they manage to speed up the situations that can be speeded up”, even though, she stresses, “no one has manifested yet and everyone already knows the ordinance. If everything worked as written, it wouldn’t be automatic, but it would be more agile.
Patients waiting for a response from the Loures-Odivelas SS
At the moment, the CHULC has two patients who have been hospitalized for 152 days and 119 days after discharge. “No one abandons anyone, but when a definitive answer is not possible in time, we have to think of other solutions,” he says.
The patient who has been waiting for an answer for 152 years after discharge is 93 years old, “a widower, living in an apartment without minimum living conditions, with no functioning family network, although there are children in his history,” he tells us.
“It is a case that was accompanied by the Loures-Odivelas SS. There was also the patient’s refusal of any intervention, although he was clearly less cognitively capable of making decisions, and when you get to that level, with several indicators that the situation is only going to get worse, direct action should be faster, even for his own protection”.
Therefore, “if some measure of the new ordinance or some other type of community response is not activated, I foresee that this will be another situation that will drag on.
Both this case and that of the patient who waited 119 days report situations with no income to support a private response, no family support, and already reduced capacity. But this is the profile of many other cases.
With the new decree, the Health and Social Security authorities say there will be 700 more beds to accommodate these patients, which will be made available according to need, but for those on the ground, often what slows down the processes is not the lack of beds, “but the practice and operation of services.
And meanwhile, hospitals accumulate cases that some will never forget, because “they are highly stressful, where everything is done, the possible and the impossible, and what we are left with is a handful of nothing, because we reach the end without any power of resolution and we can only push other institutions,” he says.
What needs to be done to change this reality, he said, “is not only through regulations, because we are experts in legislation, but with the fulfillment of what is written and a real team work, with more proactivity and articulation between Health, Social Security, Public Ministry and Santa Casa. “Only in this way will we be able to provide dignified and safe social responses to users at the right time,” he concludes.
232 patients are waiting for a nursing home bed, many of them for more than two months.
There are patients who remain hospitalized because they have nowhere else to go, but there are others who continue to occupy beds in the Centro Hospitalar Universitário Lisboa Central (CHULC), waiting for an answer in long-term care units to complete their rehabilitation. Nationally, there are 232 patients waiting for a vacancy, according to ministry data provided to DN. At CHULC, there are 86 referred patients, 57 of whom have been clinically discharged but remain there, says Ana Ribeiro, coordinator of social services.
Most of the waiting patients are referred for long and medium-term treatment. There are 46 in total, of which 17 are for long-term treatment and the remaining 29 for medium-term treatment.
Ana Ribeiro also confirms that the waiting time for admission to a long-term care unit is at least two months, but “we have a patient waiting 79 days and another 90 days.
Until now, some cases have been solved by referring patients to beds in private units until there is a vacancy in the public network of continuing care, where patients start rehabilitation immediately. “Our center has managed to maintain a practice that has allowed us to guarantee patients a transitional response, but only for patients with criteria to join the network.
That is, “the patient referred to the network is stable from a clinical point of view and goes to one of these beds”, explaining that “in terms of optimizing financial resources, it is cheaper to pay for a bed in a private unit where the person starts a rehabilitation program, because we are talking about patients who need medium and long-term convalescence, than to occupy a bed in the hospital. When a vacancy occurs in the network, the patient leaves the private unit and joins the network unit.
At this moment, CHULC has contracted 20 beds in private units for these patients, and the truth, he admits, “is that some, after a month or more, when the vacancy in the network appears, don’t even need any more care because they have already recovered while occupying the bed in the private unit. Although the patients are not personally present at the CHULC, the social team continues to accompany them.