Background
Chronic diseases are defined by their long duration and slow progression with the current challenge for health systems not only in managing the individual chronic disease, but most notably multi-morbid individuals [
1]. Chronic diseases and multi-morbidity lead to both financial and organizational burdens on the health system [
2‐
5]. Patients with multiple chronic diseases face greater healthcare utilization and costs, decreased self-reported health status, depression and reduced functional capacity [
1]. In addition the challenge of polypharmacy and managing multiple conditions, including possibly mental health issues, is both a challenge for the individual and healthcare provider(s) [
6]. In the United States 84% of total health care costs are related to chronic disease [
7] and in the United Kingdom a retrospective cohort study found that 78% of consultations at primary health care are for people with more than one chronic condition [
8].
Very little data exists on the burden of different chronic diseases in Switzerland [
9]. In a study of individuals with insurance from a specific company aged 65 or older from all of Switzerland it was found that 76.6% were multi-morbid [
10]. Compared to non-multi-morbid individuals these individuals had on average 15.7 consultations versus 4.4 and their associated costs were 5.5 times higher. In Switzerland models for the management of chronic disease are not as well established as in other high income settings
11 with barriers to effectively implement chronic care linked to the organization of the health system, its financing and weaknesses at primary health care level. This means that comprehensive models that have been developed elsewhere may not be implemented in the same way in Switzerland [
11,
12].
Given these limitations for primary care doctors in the Swiss health system, and that very little focus and research on the impact of the patient’s chronic disease(s) on primary care doctors exists [
13], the aim of this study is to explore the impact of the patient’s chronic disease(s) on their healthcare provider.
Results
Twenty interviews, 10 in each practice type, allowed for saturation to be reached. All participants completed their interviews and there were no repeat interviews. Mean duration of interviews was 51 min (minimum 24 min, maximum 65 min). The characteristics of the interviewees are detailed in Table
1.
Table 1
Characteristics of interviewees
SMPR1 | Private practice | 52 | 25 |
SMPR2 | Private practice | 59 | 34 |
SMPR3 | Private practice | 55 | 25 |
SMPR4 | Private practice | 53 | 30 |
SMPR5 | Private practice | 65 | 30 |
SMPR6 | Private practice | 67 | 40 |
SMPR7 | Private practice | 58 | 34 |
SMPR8 | Private practice | 42 | 18 |
SMPR9 | Private practice | 67 | 32 |
SMPR 10 | Private practice | 40 | 21 |
SMPR 20 | Hospital | 44 | 17 |
SMPR 21 | Hospital | 53 | 29 |
SMPR 22 | Hospital | 34 | 7 |
SMPR 23 | Hospital | 42 | 13 |
SMPR 24 | Hospital | 35 | 5 |
SMPR 25 | Hospital | 53 | 27 |
SMPR 26 | Hospital | 34 | 7 |
SMPR 27 | Hospital | 39 | 12 |
SMPR 28 | Hospital | 36 | 10 |
SMPR 29 | Hospital | 41 | 16 |
| Average Overall (Range) | 48 (34–67) | 22 (5–40) |
The following themes relevant to the impact of managing chronic diseases emerge around the issue of feeling powerless as a doctor; facing the patient’s reality; guidelines versus the reality of the patient; time; and taking on the patient’s burden.
Feeling powerless as a doctor
Many of those interviewed expressed feeling powerless. SMPR3 states this as “when you are a young doctor, you like to be the savior.” SMPR28 describes how for infectious diseases and broken arms doctors can easily find solutions, but that for chronic diseases “it is almost like we give them medicines and we make them sick.” SMPR10 and SMPR24 highlight the challenge of patients coming back with recurring complaints that they are unable to provide a solution for.
This powerlessness was also fueled by the perceived patient’s view as expressed by SMPR26 “the patient does not necessarily expect to get better and that is difficult to accept as a doctor”. SMPR 10 adds “if we feel that the intervention we are proposing will not change anything our feeling powerless as a doctor increases.” This is complemented by SMPR23 saying, “I do not cure them! I just provide treatment!” with SMPR2 highlighting how a transition is needed in the view of being a doctor as a savior and being able to see the limits of what a doctor can do. SMPR3 adds, “With time we are able to relativize a lot and redefine our role as a partner and not a healer.”
The patients’ reality
Some of this feeling powerless was linked to varying patient characteristics such as social, psychiatric and disease factors. SMPR20 describes this as “the limit of my action in the limits of the context [of the patient] and the difficulty of adapting what I am saying to a reality that I do not know well, therefore the feeling that sometimes I am not in sync with what the patient is living.” Different elements comprise the patient’s reality, not only including the disease(s) that the doctor is managing, but also their socio-economic characteristics. Patient related factors impacted the management of the patient’s chronic disease and could be divided into disease related factors and multi-morbidity and the patient’s social context.
With disease related factors, different challenges present themselves at distinctive stages of the disease process. For example, at the time of diagnosis “For some the announcement of having diabetes all of a sudden is an upheaval, we are going to tell them that they need to do various things and I realize that this is a bomb. We put bombs for these patients, but for us it is just diabetes.” (SMPR24) This “bomb” at the time of diagnosis is followed by challenges throughout the management of the disease until the last stage of the disease, when the doctor needs to explain “if you are no longer able to breathe it is because you have smoked for 40 years and your body is letting go […] they have to understand that they are going to die.” (SMPR23).
End of life care was identified as a situation with additional challenges (SMPR23), as were chronic disease management in geriatric populations (SMPR23), mental health issues (SMPR7), and specific diseases e.g. HIV/AIDS, diabetes (SMPR7). SMPR24 also describes a vicious cycle in that chronic disease can be disabling for the individual therefore impacting the individual’s mental state, which in turn impacts management. As stated by SMPR24, “Somatic chronic diseases often have consequences or come in parallel to difficult psychological situations and it is then difficult to identify what is the cause and consequence.” Many doctors in discussing multi-morbidity focused more on psychiatric diseases and addiction (SMPR4, SMPR7, SMPR23, SMPR24 and SMPR25) rather than somatic conditions. SMPR4 portrayed multi-morbidity as “We are juggling many eggs at the same time.” This practitioner gave the example of one of their patients having alcohol problems after a bypass surgery and how to manage this added challenge in an individual who already had an eating disorder, problems with their body image, depression and other chronic diseases. The challenge was also how to manage all these issues in parallel (SMPR20).
Patient’s social context
A variety of social factors impacting the management of the patient’s chronic disease are described by the interviewees. “There are some contexts where as a doctor I take a blood pressure, I use my stethoscope, but that is not the problem! Patients just need to eat, be washed and then access care”(SMPR23). SMPR2, SMPR21, SMPR23, SMPR24 and SMPR25 add to this complexity in mentioning the importance of the patient’s surroundings, including: work, life events, family context, financial means, cultural factors, seclusion, and even illiteracy. SMPR25 summarizes this as “the problem is much more non-medical: it is really the surroundings, work, life events that have a bigger impact than us.” A specific example is SMPR1 describing how a patient with dyspnea may also be losing his job, having marital trouble and these factors accumulate as elements in their overall suffering.
Doctors seemed ill equipped to manage the patient’s social context linked to cultural issues (SMPR5, SMPR7, SMPR20, SMPR21, SMPR23 and SMPR26) and precarious financial situations (SMPR2, SMPR3 and SMPR20). Cultural issues related to barriers in effective communication with the patient and therefore patient’s understanding of for example taking medicines. Financial issues were related to the fact that some patients could not access care they needed (SMPR2), lacked financial means to exercise or afford healthy food (SMPR20), or due to job constraints did not see management of their condition as a priority (SMPR20).
Guidelines versus reality
Guidelines which support evidence-based medicine goals are focused on individual diseases and do not take account the complexity of the patients’ reality including socio-economic factors. Therefore, the doctor’s efforts to follow guidelines are often a failure. SMPR3 describes a patient who could not check his blood glucose twice a day before and after meals because of his work schedule. This shows that the patients’ reality cannot be controlled by the physician. SMPR22 expresses this as “there are things that we can change in the context, and things for which we aren’t there. We talk about theory, but once at home...”
This “theory” refers to not being able to follow guidelines due to the nature of the patients disease(s) and other related factors, adding to the doctor’s feeling of powerlessness and frustration. Participants described how they are able to put into perspective the importance of guidelines, but that these are limited as guidelines are, “only statistical considerations” (SMPR3), whereas they need to deal with individuals with varying needs.
SMPR20 describes his approach as “trying to find openings where they are, by trying to find strategies which are literally adapted to patient’s reality. [It’s] useless to talk about changing diet, when the patient eats at a soup kitchen”. SMPR24 summarizes it with this statement: “with chronic patients, you need to see further than guidelines, see patient’s resources, understand his story, see how he lives with his illness [..]. There are many facets you can’t set aside”.
Dealing with complexity requires time
Time was a recurrent theme presented by the doctors interviewed. Interviewees described how they struggled with all the tasks they should perform within a limited time frame of a consultation. SMPR28 lists each task he’s supposed to do during a single consultation only for diabetes and adds, “And all this in 30 minutes”. Therefore, doctors have to prioritize, “in which order and at what time we do things” (SMPR 29), with the risk of “los[ing] track of which exams to do” (SMPR26) or omit something such as stopping a specific medicine no longer required (SMPR 29).
Besides identified specific tasks, many interviewees stated that more time is required to create a therapeutic relationship. For SMPR20, this relationship is “built with the duration and by knowing people” and it is necessary to “enter into patient’s life” (SMPR29). SMPR20 summarizes this need for time to build relationship as “if we don’t have time, we don’t take care of a person but of a disease”.
Due to the limit of time imposed by Swiss health system (through its insurance and funding system), many doctors felt frustrated. Several interviewees were quite spirited when discussing this as SMPR2 said, “I can only do my job as a doctor if you allow me more time”. SMPR7 had received a warning from an insurance company about the time spent with his patients and stated, “I told them that a society which didn’t take time for the bond was a dying one, and that in no way I would agree to reduce the time of my consultations”.
Impact of taking on the patient’s burden
Many of the doctors interviewed took on their patient’s burden with them feeling for their patient and their situation. This had a negative impact in them requiring a lot of energy and a emotional impact. In addition, this also had a positive impact finding motivation and pleasure in some interactions.
Some interviewees stated how consuming it was to take on the patient’s burden, and how it made them feel alone. SMPR7 stated “we are bearer of everything […] psychological, familial issues, the despair, the advancing age”. SMPR24 compares some patients as a “very heavy stone to pull”, SMPR23 confessed feeling “like pedaling in vain” and being exhausted.
SMPR24 describes the “intensity with the chronic patient that we don’t have with any patient [..] it impacts us strongly when in a given day we see patients who feel down because no treatment is working, we still have to continue to accompany them, not to let them down.” Due to this bond built on the therapeutic relationship, several interviewees described being affected by their patients’ situations (SMPR1, SMPR7, SMPR10, SMPR23 and SMPR24). This is described in different ways, such as “to feel sadness” (SMPR7) about their situation, their issues, or even “to feel what they feel” (SMPR1). All these feelings resulted in energy used to “digest” these emotions (SMPR10).
Interviewees also described positive impact resulting from their work with chronic patients. When SMPR2 talks about a resilient 88-year-old patient with many issues, he relates the pleasure he has to see his fighting spirit, and how it also helps him as a doctor keep motivated. Interviewees described this phenomenon when the patient took their advice (SMPR26), showed resilience facing serious issues (SMPR2, SMPR10), the long-term relationship (SMPR28) or simply through the stories shared by the patients (SMPR2, SMPR10). SMPR10 summarizes, “It’s wonderful this relation we can have with people sharing the story of their life, their beliefs […] It’s really touching but in the same time, it also takes energy”.
Acknowledgements
The authors would like to acknowledge the support of Professor Jean-Michel Gaspoz which allowed them to benefit the “Fonds MIMOSA” grant.
The lead author affirms that the manuscript is an honest, accurate, and transparent account of the study being reported; that no important aspects of the study have been omitted; and that any discrepancies from the study as planned have been explained.