Participant Characteristics
A total of thirteen interviews were collected. There were no dropouts, refusals or repeated interviews. In some cases first-degree family members were present. Their answers were also included. The interviews usually lasted 40-50 minutes. No transcripts were returned to participants. Median age of the participants was 85 with a range from 73 to 97 yearsParticipants were admitted on average four times in the last 12 months. More than half were women (7/13).
Perceived Causes of Frequent Hospital Admissions
A total of seventeen perceived causes were identified which could be divided into six different categories namely patient, drugs, primary care, secondary care, home and family. Most of the causes occurred in the categories patient, primary and secondary care. Each cause was either a trigger or an underlying cause. In total fewer triggers (6/17) have been identified than underlying causes (11/17). These triggers were found in the category 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, admissions would happen less often. Finally, it is noteworthy that all the causes in medical care are preventable or modifiable. In primary care, admissions were related to underlying causes and in secondary care to triggers. See figure 1.
In the patient category, old age, physically weak and complex pathology were the most common causes but they are not modifiable. However, falling was a major trigger that can be prevented.
“Getting old is nice, but being 25 years is much nicer. (...) Ageing is a blessing in disguise. You can't keep up anymore because of the age.”
Participant 2, old age
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In addition, causes related to the patient's behaviour were also identified namely ignoring complaints, non-compliance and postponing consult. This behaviour has led to frequent hospital admissions but it is modifiable or preventable. In some cases, this kind of behaviour was induced by the bad experiences of other patients.
“If I had taken my antibiotics earlier, I might not have caught it chronically. It's because of me and not the clinic.”
Participant 2, non-compliance
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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] doesn't come to the clinic very often and certainly not because of his clinic phobia, so he doesn't come to the clinic and he doesn't come to the nursing home much either. (...) Only the daughter who is coming to get me now. She knows that she is the only one and then it starts to bother her.”
Participant 1, lack of family support
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Finally, there were medical causes such as lack of follow-up, lack of knowledge, technical issue, discharged too soon and nosocomial infection that can be prevented. The distrust in primary care physicians went hand in hand with the confidence in specialists. As a result, the participant wanted to be treated by his specialist and no longer by the primary care physicians.
Contributing Factors
Alongside the perceived causes of frequent hospital admissions, contributing factors were found. A total of 14 categories were identified and divided in three areas i.e. medical, non-medical and patient. For an overview of all the contributing factors (see appendix 2). As expected, some overlap between ‘causes’ and ‘contributing factors’ was found according to the expressed nuance of the participants and indicating a continuum in the ‘degree’ of perceived causal determination.
Medical
First, the problems with general practitioners were about lack of follow-up, lack of information, lack of initiative, lack of knowledge, lack of patient involvement, wrong estimation and professional jargon. These factors may have led to a loss of confidence in general practitioners.
“The doctors [general practitioner and physician in nursing home] didn't want to find a solution on their own. They have been saying long “yes they said that in the clinic” but it did not come from them.”
Participant 1, lack of initiative
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In addition, the availability of general practitioners was also a drawback. The search for a good general practitioner was a difficult task and even if they had a good one, the participants felt that little time was provided for them.
“In September I had a stroke and at the clinic they said to me: your doctor must come to you this evening [Friday]. I come home and I make a phone call. I don't have time, I'll send my colleague... ON MONDAY.”
Participant 9, too busy general practitioner
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Secondly, in the nursing homes poor coordination, miscommunication and insufficient care were identified as contributing factors. It was mentioned that physicians did not take enough initiative to address the problem and gave insufficient attention to patient involvement. Also wrong estimations and medication errors were made in the past. All this had also led to a distrust towards physicians in nursing homes.
Thirdly, the hospital and specialists were mentioned. On one hand, fragmented and insufficient care were revealed. For example, it was mentioned that there were too many treating physicians, that responsibilities were passed to others, that double therapy occurred and that overreporting took place. Patients were not treated with a holistic approach and patient-specific care was lacking. A criticism of the profession was that it is over-specialized. On the other hand, the hospital was also praised by some participants. They 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 have pointed out that although they prefer to be at home, the hospital admissions were experienced as pleasant and professional.
“It’s laughable. ENT (ear, nose, throat), it won't take long before there comes a doctor one 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, over-specialization
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Finally, polypharmacy was cited in almost every interview. The participants were taking a lot of medication without proper knowledge of its indication. 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 and information were provided after dismissal. As a result, participants did not know how to continue their treatment after they were discharged.
“I don't 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
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Non-medical
Non-medical 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 these have already passed away. Because of this, participants mainly rely on their existing family members. In some families a lack of support and contact was seen. Some participants even have 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.
Patient
Patient-related problems included behavior, physical factors, finances, lifestyle and others. Most of the contributing factors were related to the patient's behavior. For example, there were participants who did not care about the medical advice they received and were easily satisfied. Others were interested in their medical condition, but they could not understand everything and were afraid to ask for clarification. There were also participants who would not independently seek help without the permission of their general practitioner.
In addition, there were participants who had postponed their treatment because of the bad experiences of their family members. Some 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 need help.
Furthermore, healthcare also involves high costs which played a role in the decision making of the patient and his family members. In some situations, the participant did not receive the necessary home care because of the financial barrier for 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 have 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're retired, you have to go to bed early. It was only getting later and later. So I took another cigarette and another pint. Just beer, no heavy beer. And 25cl, not 33cl. Sometimes 5-6 beers a day. I did that regularly. Not to say every day.”
Participant 11, alcohol and smoking
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Finally, it was pointed out that participants had too much time to think and to contemplate. After many years, physicians still did not know the origin of certain complaints. The participants themselves did not know much about their illness and background. There were also misconceptions among the participants, for example that a vaccination makes you immune to the flu virus.
Perceived Consequences of Frequent Flyer Status
The perceived consequences were subdivided into six categories namely body, daily life functioning, social participation, mental status and spiritual dimension. See figure 2. Most participants identified consequences related to the category mental status and spiritual/existential dimension. Moreover, social participation was also an important element.
Mental status
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 do activities of daily living 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 have a lot of time to reflect on everything around them. 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."
Participant 5, fear of death
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A lot of participants were also frustrated about the fact that things were not as easy as they used to be. It was 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 can't. That is difficult, very difficult."
Participant 1: “No, but I have experienced that I confronted myself with the fact that I could perform less than before.”
Participant 4 and 1, frustration
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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 lost sight of future prospects and the meaning of life. They did not see their state of well-being improve and only felt deteriorated. Some of them were still struggling with those unpleasant thoughts and others evolved to acceptance of fate.
"Well, today the food was good, and that 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
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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 social participation, missing social contacts and giving up hobbies were mainly discussed. A number of participants indicated that they missed social contacts in their life. Some participants felt lonely and were more dependent on others for transport, which made it more difficult to maintain their social life. Also many of their friends passed away, 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'm 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
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On the other hand, there were participants who did not need a lot of connection. They were in search for rest and preferred to be at home with their families.
"I don't 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, no need for contacts
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Also, 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 don't come to me now.”
Participant 13, abandoned
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Several participants have also given up their hobbies. This was because of the reduced mobility and physical decline. Although some participants had just bought a vehicle, had a summerhouse or were still doing sports, this was no longer feasible. Because of this, they have lost a part of their own.
Body
In the category body, reduced mobility, reduced appetite and insomnia were most cited.
"It could have been a little better. It's the appetite, I'm 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
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Daily life functioning
The dependence on other people and the difficulty to accept help were two conflicting subjects. Participants were getting older and therefore more dependent on others. They needed, for example, more help from others in order to be able to live at home. The participants were aware of this and many found it difficult to accept this 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 of participant 10, hard to accept help
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Quality of life
In this last category, freedom restriction was a prominent element. Many participants indicated that, due to these frequent hospital admissions, they had to give up a lot of activities and were confronted with shortcomings in their daily life. This gave them the feeling they lost power over their own lives and that they cannot organize life according to their own wishes. Participants were also restricted in their freedom of movement due to 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 the 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
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