Participant characteristics
A total of thirteen interviews were collected. All the interviewees consented to participate in the study. There were no dropouts, refusals or repeated interviews. In some cases, first-degree family members were present. These family members also consented to provide informed written consent. Their answers were also included but were mainly complementary to those of the participants. This inclusion gave further insight into interpreting the participants’ answers, as these relatives often provided additional, relevant information. The interviews usually lasted 40–50 min. No transcripts were returned to the participants. The median age of the participants was 85 years, with a range from 73 to 97 years. The participants were admitted on average four times in the last 12 months. More than half of the participants were women (7/13).
Perceived causes of frequent hospital admissions
A total of seventeen perceived causes were identified, which could be divided into the following six different categories: patient, drugs, primary care, secondary care, home and family. Most of the causes occurred in the categories of patient, primary care and secondary care. Each cause was either a trigger or an underlying cause. In total, fewer triggers (6/17) than underlying causes (11/17) were identified. These triggers were found in the categories of drugs, secondary care and patient. In addition, most of the causes could be prevented or modified (13/17). Some participants indicated that if these causes were solved, then admissions would happen less often. Finally, it is noteworthy that all the causes related to medical care are preventable or modifiable. In primary care, admissions were related to underlying causes, and in secondary care, admissions were related to triggers. See Fig. 1.
In the patient category, old age, being physically weak and having a complex pathology were the most common causes, but they were not modifiable. However, falling was found to be a major trigger, and it can be prevented.
“I have had a hernia with serious episodes and discomfort for 25 years. After cycling with my brother-in-law, I started feeling pain in my toes. They applied traction to my lower back, but that did not help. After a while, they took scans and gave me an injection in my spinal cord. Eventually, a young surgeon performed surgery on me. It was hard because that bulge had progressed for 25 years, and he had to take it out. It did not completely cure me. Afterwards, I was still doing small chores in the garden and in the house, but then I hurt myself. The pain lasted for a long time, and it turned out to be inflammation. So, I had to take anti-inflammatory drugs. Occasionally I took one, and then I had a stomach bleed and Barrett syndrome. Now they want to put 6 stents in my heart. I already have 2, but I do not want any more. In addition, I also have angina pectoris.”
Participant 11; complex pathology
In addition, causes related to the patient’s behavior were also identified, namely, ignoring complaints, noncompliance and postponing consultation. This behavior was shown to lead to frequent hospital admissions, but it is modifiable or preventable. In some cases, this kind of behavior was induced by the bad experiences of other patients.
“If I had taken my antibiotics earlier, I might not have caught it chronically. It is because of me and not the clinic.”
Participant 2; noncompliance
Furthermore, side effects and medication errors also triggered frequent hospital admissions. In theory, they are preventable, but in practice, it is difficult to avoid side effects. The lack of home care and family support were identified, as well as underlying causes of frequent hospital admissions. The need for family support was strongly highlighted during a number of interviews.
“He [son] does not come to the clinic very often and certainly not because of his clinic phobia; so, he does not come to the clinic, and he does not come to the nursing home much either. (...) Only my daughter is coming to get me now. She knows that she is the only one, and it has started to bother her.”
Participant 1; lack of family support
Finally, there were medical causes such as lack of follow-up, lack of knowledge, technical issues, too-early discharge and nosocomial infection that could be prevented. In addition, distrust in primary care physicians went hand-in-hand with confidence in specialists. As a result, these participants wanted to be treated by a specialist and no longer by their primary care physicians.
Contributing factors
Alongside the perceived causes of frequent hospital admissions, contributing factors were also found. A complete overview of all contributing factors can be found in Supplementary File 4. A total of 14 categories were identified and divided into three areas: medical, nonmedical and patient. Appendix 2 gives an overview of all the contributing factors. As expected, some overlap between causes and contributing factors was found according to the expressed nuance of the participants, indicating a continuum in the degree of perceived causal determination.
Medical
First, the problems with general practitioners pertained to the lack of follow-up, the lack of information, the lack of initiative, the lack of knowledge, the lack of patient involvement, wrong estimation and professional jargon. These factors may lead to a loss of confidence in general practitioners.
Participant 1: “Well, I have to be honest. It was me who worked towards it [the admission] because the doctors at home did not want to find a solution on their own. They have been saying for a long time that “Yes, they said that in the clinic” but it did not come from them. (…) They have not taken good care of it, like looking for initiatives, treating me or improving my health.”
Interviewer: “So you’re saying that you worked towards being admitted?”
Participant 1: “Yes, because they could not find a solution there in the retirement home, and here in the hospital they can.”
Participant 1;
distrust in primary care physicians
going hand-in-hand with confidence in specialists and a lack of initiative
In addition, the availability of general practitioners was also a drawback. The search for a good general practitioner is a difficult task, and even if they have a good one, the participants felt that little time is provided for them.
“In September, I had a stroke;” at the clinic they said to me that “Your doctor must come to you this evening [Friday].” I came home and I made the phone call. The doctor said, “I do not have time, I will send my colleague... ON MONDAY.”
Participant 9; general practitioner too busy
Second, in the nursing homes, poor coordination, miscommunication and insufficient care were identified as contributing factors. It was mentioned that physicians do not take enough initiative to address the problems and give insufficient attention to patient involvement. Additionally, incorrect estimations and medication errors have been made in the past. All of this led to distrust towards physicians in nursing homes.
Third, the hospital and specialists were mentioned. On the one hand, fragmented and insufficient care were revealed. For example, it was mentioned that there are too many treating physicians, that responsibilities are passed to others, that double therapy occurs and that overreporting takes place. Patients reported not being treated with a holistic approach and that patient-specific care was lacking. A criticism of the profession was that it is overspecialized. On the other hand, the hospital was also praised by some participants. These patients felt well cared for and had confidence in the hospital. One participant argued for admission because he wanted to be treated by the specialist and not by a primary care physician. In addition, many participants pointed out that although they prefer to be at home, their hospital admissions have been pleasant and professional experiences.
“It’s laughable. For ENT (ear, nose, throat), it will not take long before there comes one doctor for the nose, one for the throat and one for your ears. One for your left ear and one for your right ear. So far, this is how the specialization is progressing.”
Participant 11; overspecialization
Finally, polypharmacy was cited in almost every interview. The participants reported taking many medications without having proper knowledge of their indications. Many participants did not prepare their medication themselves but let others prepare it for them, e.g., family members or home nurses. Transmural care also remained an issue, where sometimes no proper care or information were provided after dismissal. As a result, the participants did not know how to continue their treatment after they were discharged.
“I do not know what I'm getting anymore. At least 10, 11 or 12 pills early in the morning, and in the afternoon about 3, and in the evening about 2-3 pills. Then, also an inhaler.”
Participant 1; polypharmacy
Nonmedical
Nonmedical problems included family, home care and social environment. This study identified a lack of home care, neighbor contact and other social contacts. Some participants have no friends left because their friends have already died. Because of this lack, these participants mainly rely on their existing family members. In some families, a lack of support and contact was seen. Some participants have even had a quarrel with their family, and they do not speak to each other anymore. Others disagreed with their relatives about the care they should receive. Finally, the loss of a loved one and widowhood were also mentioned as contributing factors of frequent hospital admissions.
“I’m just struggling on my own because I cannot ask much of my son. For example, I would never dare to ask him to wash me. (…) The family connection is not that strong.”
Participant 3; lack of family support
Patient
Patient-related problems included behavior, physical factors, finances and lifestyle. Regarding the patients’ behavior, some participants mentioned not caring about the medical advice they received and being easily satisfied. Others were interested in their medical condition, but they could not understand everything told to them and were afraid to ask for clarification. There were also participants who would not independently seek help without the permission of their general practitioner.
“If I do not understand the explanation, I will be silent for sure. If you only know something, that is enough. It is as simple as that.”
Participant 7; easily satisfied
In addition, there were participants who had postponed their treatment because of the bad experiences of their family members. Some had lied to their physicians about quitting smoking. There were also participants who did not accept home care because they were afraid of strangers. Others were too proud to admit that they cannot do everything on their own and that they need help.
Furthermore, health care also involves high costs, which played a role in the decision making of the patients and their family members. In some situations, the participant did not receive the necessary home care because of the financial barrier of the family. On the other hand, participants with private health insurance were reassured that all the expenses would be covered.
Alcohol and smoking were also important contributing factors. Many participants who had been smoking and consuming alcohol for many years had to quit. That was not an easy task. Some have succeeded in quitting, others have not. Those who did not succeed justified their alcohol consumption/smoking behavior.
“I also had a few pints at night. That was my sedative. And once you are retired, you have to go to bed early. It was only getting later and later. So, I had another cigarette and another pint. Just beer, no heavy beer. And 25 cl, not 33 cl. Sometimes 5-6 beers a day. I did that regularly. Not to say every day.”
Participant 11; alcohol and smoking
Finally, it was pointed out that the participants had too much time to think and contemplate. After many years, physicians still did not know the origin of certain complaints. Thus, the participants themselves did not know much about their illness or its background. There were also misconceptions among the participants, for example, that a vaccination makes you immune to the flu virus.
“There are moments that go well, but there are also days that you think ‘Goddamn, now I get up to go back to sleep afterwards.’ I walk around here [hospital] and at home in circles. (…) There is no future anymore. (…) You have time to think. You have nothing to do but to think. Too much time.”
Participant 5; too much time to think and contemplate
Perceived consequences of frequent flyer status
As shown in Fig. 2, the perceived consequences were classified into six categories, namely, body (physical health), daily life functioning, social participation, quality of life, mental status and spiritual dimension. This classification has been made based on the concept of positive health [27, 28]. Regarding the patients’ perceived consequences, all the categories could contain at least 1 item. However, most of the participants identified consequences related to the categories of mental status and spiritual/existential dimension. Moreover, social participation was also an important element.
Mental status
The participants predominantly described three feelings in the mental status category, namely, powerless, fear of death and frustration. They felt powerless because they experienced a deterioration in themselves. They could not perform activities of daily living by themselves and had become more dependent on others. This led to a difficult feeling of losing control.
The second feeling that often came up was the fear of death. Many participants reported having much time to reflect on everything around them. Thus, they were concerned about their state of health and did not see any improvement in their medical condition. For this reason, the thought of death came to mind more often in these patients.
“If you have nothing else to do than to wait and sleep, then you hope to wake up the next day because you never know for sure what could happen.”
Participant 5, fear of death
Many participants were also frustrated about the fact that things were not as easy as they used to be; i.e., they reported a confrontation with physical decline. Especially after their frequent hospital admissions, many participants noticed that they had become considerably weaker over the past year. The most frustrating part was the awareness of their own decay.
Interviewer: “Was it difficult to resume your daily routine after hospitalization, to get back home?”
Participant 4: “Yes, you have to be able to resettle. You want to do a lot of things, but you cannot. That is difficult, very difficult.”
Participant 1: “No, but I have experienced that I have confronted myself with the fact that I could perform less than before.”
Participant 4 and 1; frustration
Spiritual/existential dimension
The spiritual/existential dimension illuminated pessimism, gratefulness, confrontation with death and accepting fate as important perspectives. Some participants were pessimistic because they had lost sight of future prospects and the meaning of life. They did not see their state of well-being as improved and only felt deteriorated. Some of them were still struggling with those unpleasant thoughts, while others had evolved to accept their fate.
“Well, today the food was good and that is all matters. If you have nothing else to do than to wait, you have time to think. You have nothing else to do than to think and yes...the next day I hope to wake-up again. There is not much future for me.”
Participant 5; spiritual dimension
In addition, many participants were grateful for the help and the support they received from their families. Other participants received very little support or had even lost contact with their family. This lack of contact affects their state of mind, and some even indicated that it could play a role in their frequent hospital admissions.
Furthermore, several participants were confronted with death. Many of their friends and acquaintances had already died.
Social participation
In regard to social participation, missing social contacts and giving up hobbies were mainly discussed. A number of participants indicated that they missed certain social contacts in their lives. Some participants felt lonely and were more dependent on others for transport, which made it more difficult to maintain their social life. Additionally, many of their friends had died, which meant that their social circle was getting smaller and that they had fewer remaining relationships as a result.
“I cannot drive a car anymore. I am going to see my friends a lot less. It is harder for me to go there. I live on Sint-Maartensstraat, and if I want to go to the station with my friends, because they like to have a beer there, that will not work. I would also like to go, but that is no longer possible.”
Participant 11; missing social contacts
On the other hand, there were participants who did not need much time for social connection. They were in search of rest time and thus preferred to be at home with their families.
“I do not really have the need for extended social contacts anymore. I like to stay together at home with my husband. I am very happy with that.”
Participant 4; less preference for social contacts
Additionally, some participants felt abandoned. They used to visit many friends who were sick at the time, but now that the roles are reversed, they do not see many visitors. Other participants felt abandoned by their family, for example, because of a family quarrel or for no particular reason.
“I'm very disappointed. In the past, when I could still get around and heard that someone was ill, I always went to visit them. Always. And they do not come to me now.”
Participant 13; abandoned
Several participants also reported having given up their hobbies. This was because of their reduced mobility and physical decline. Although some participants had just recently bought a vehicle, had a summerhouse or were still doing sports, this was no longer feasible. Because of this, they feel that they have lost a part of themselves.
Body
In regard to the category of the body, reduced mobility, reduced appetite and insomnia were the most-cited factors
“It could have been a little better. It is the appetite; I am not saying that the food is bad, and today I have already eaten a bit more. I also do not sleep well either. I'm overtired and altogether yes... that creates problems.”
Participant 3; reduced appetite and insomnia
Daily life functioning
The dependence on other people and the difficulty related to accepting help were two conflicting subjects. The participants reported getting older and therefore being more dependent on others. They needed, for example, more help from others to be able to live at home. The participants were aware of this need, and many found it difficult to accept such help, especially from strangers. This could be a reason why they remain unaided.
“Yes, for the moment nothing is going to change, as long as she is well enough. When we notice that she is not doing well anymore, then we will call in more help. She wants to stay at home for as long as possible, and we want to respect that; but in that case, she has to accept more help.”
Family member of participant 10; hard to accept help
Quality of life
In this last category, the restriction of freedom was a prominent element. Many participants indicated that, due to these frequent hospital admissions, they had to give up many activities and were thus confronted with shortcomings in their daily life. This gave them the feeling that they had lost power over their own lives and that they cannot organize their own life according to their own wishes. The participants were also restricted in their freedom of movement due to their reduced mobility. These elements resulted in a reduced quality of life.
Participant: “It is a fact that this reduced mobility is the result of physical complaints, especially with my back problems... I would like to work out, for example, but that is not possible because of physical problems. So yes, you always have to... Your environment is getting smaller and smaller.”
Family of participant: “A year ago, for example, she was still driving a car. That is no longer an option. She did her own shopping, but this is not possible anymore. She cannot walk far now. She has become less mobile.”
Participant 11; freedom restriction