Sampling
Three focus groups (focus group) and an individual interview were conducted. Out of forty-nine GPs solicited to participate in the study, seventeen eventually participated. Among the GPs declining, five cited too complex logistics, ten cited lack of time, three were not interested, and three did not respond, nine were not available at the proposed dates, two declined at the last moment. The participants’ mean age was 46.7 years (Table
1).
Focus groups took place from 17 to 2019 to 4 March 2020. They were completed by one individual interview with a GP who did not express their views during the focus groups. The individual interview took place as visio call due to the Coronavirus epidemic context. The result of this interview confirmed the previous analysis based on focus groups and did not give rise to any new perspective on the topic of interest.
The lengths of the focus groups were comparable, they lasted on average 83 min (92, 83 and 73 min for each group). The individual interview lasted 45 min.
We reached data saturation after the 3rd focus group. The individual interview confirmed data saturation.
Three major themes emerged from the qualitative data:
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“Perception of aging and very old age: between personal experience and daily clinical practice”.
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“The specificity of oldest-old patients imposed an adaptation of primary care”.
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“Medical disengagement and management of oldest-old patients”.
We propose an explanation of those themes in the sections below, based on the content of each subtheme.
Perception of aging and very old age: between personal experience and daily clinical practice
The concept of aging
The perceptions of participants concerning their patients’ aging process was influenced by their own experiences and their daily clinical practice. This subjectivity in their judgment was conscious and accepted.
Aging was perceived as an individual, conscious, irreversible, unpredictable phenomenon, with an unavoidable ending. It was felt like a dark cloud hanging over each patient and affecting their life course.
A2: « When they start to explain that they can’t carry certain tasks at home. They already begin to feel that they are aging. Before, they could do everything, they weren’t conscious [of aging]. They weren’t conscious that they had become old, and then… Small things, cleaning windows for example.».
Participants were unsettled by phases of acceleration and slowing down and the inherent variability in the aging process. Participants described their patients’ aging process as a clinical and physiological decline of their capacity. Advanced age was generally associated with a state of polypathology and a high level of dependency.
Individual age: convergence of chronological age and biological age
To characterize their aging patients, participants used chronological age as well as biological age. There seemed to be a duality between these two concepts. Participants disagreed at which chronological age patients could be considered elderly, and they preferred to use a range of ages. Chronological age was considered a necessary criterion as participants expected to see a physiological decline related to age. However, it was judged to not be sufficient considering the diversity of patients’ health status.
B6: “I think we all have among our patients 70-year-old persons who are nearly at the end of life stage, while others are twenty years older and are, or seem to be, in great form; so, hmm, I don’t know if… age means anything after all.”
The concept of biological age started to impose itself without being codified.
A2: “It is more a physical state and pathologies and autonomy than… hmm… the age itself.”
The main factors considered to evaluate biological age were those that they qualified as markers of aging. These factors could be physical: physical aspect (hair color, skin condition, etc.) and physical condition (movement, muscular performance, balance, vivacity); neuro-psychological: presence of cognitive impairment, neuro-sensory functioning; medical: current pathologies, clinical history, polymedication; or socio-environmental: level of autonomy and social life, retirement, widowhood.
The idea of individual age emerged, encompassing chronological age and weighted by biological age.
The Oldest-Old: a particular category of older patient
The existence of a category of very old patients, the Oldest-Old was not mentioned spontaneously by the participants, but was found in the analysis of their responses. The shift to very old age was described as an inevitable stage of aging. Even if GPs tried to anticipate this stage, it remained unpredictable. Most of the time, they could only acknowledge it. It was the starting point of the inexorable decline towards the last stage of life. This stage could present in different forms. It could be physical and lead to a loss of autonomy (a fall, an acute illness, decompensation from a chronic illness) or psychological (realization of one’s mortality, grief, loss of social usefulness). The apparition of negligence towards one’s appearance or health, the absence of a project or planning were also observed. Participants noted a progressive disengagement of their patients with society, until complete loss of perceived social usefulness.
B4: “You see that, but… there’s still a future. Because like I said, you feel that you’re getting old when you don’t have a future, I mean… this is a long way away”.
In the same way that they had difficulties characterizing their older patients, participants found it difficult to characterize their oldest-old patients. They defined oldest-old patients based on chronological age (around 90 years) and biological age, although their personal representation could include the character of the patients, their closeness to death, their opposition to health care and their disengagement. Patients were conscious of their advanced age and had to face the idea of their own death. They were attached to their own home and institutionalization was often associated with decline.
B3: “Ah no, not necessarily, because I have very old people who are… who are super… super autonomous.”
The specificity of oldest-old patients imposed an adaptation of primary care
Redefining the posture of the GP…
Participants felt that they had to offer individual and specific care to their oldest-old patients. The care plan for the oldest-old was adapted to their living conditions (place of living, environment, surroundings, habits) and their health status (level of autonomy and pathologies).
During a consultation, the clinical exam needed to be even more thorough and attentive. GPs adapted complementary exams and increased their monitoring of these patients compared to younger patients in the same situation. They considered the chronological age of patients, and their life expectancy. These adaptations needed to respect the will of the patients and could trigger in them the consciousness of having reached very old age. B4: “Well I see it because I care for a very old doctor who told me: ‘it’s curious, since I am 92 you treat me differently.’”.
Participants chose to focus on maintaining quality of life and slowing down functional decline, following the principle of “adding life to years rather than years to life”. They were committed to accompany their oldest-old patients and prioritized quality of life (lifting restrictions) and comfort (treating pain and avoiding invasive measures). Prevention occupied a secondary position and was mainly based on preventing iatrogenicity and cardio-vascular accidents.
They saw it as essential to “deprescribe”. Adapting the prescription for these patients represented a complex intellectual exercise. Participants also focused their efforts on the prevention of falls, malnutrition, sarcopenia, vitamin deficiencies, loss of autonomy, cognitive decline. They insisted also on slowing down decline by maintaining their patients’ physical activity.
… in relation with the evolution of the patient’s attitude
Participants described some patients as serene towards their health care, to the point of being resigned. These patients requested to be accompanied. Others seemed pessimistic, preoccupied, and requested strict maintenance of the medical objectives in the hope to preserve good health. Participants reported being aware of discrepancies between their speech and their actions. They recognized that they were more serene in their practice when their patients were conscious of their very old age and adopted an expectative attitude.
A3: “They know that they have passed a certain age threshold, and the time to die will come, so yes, it changes everything, completely…, everyone is more relaxed.”
Constant management difficulties
Participants reported facing many difficulties. While it was overwhelmingly preferred, keeping a patient at home represented one of the biggest difficulties. This required an adaptation of the environment and a significant social burden. Lacking time, participants tried to keep their patients coming to their practice, and reserved home visits to exceptional cases. Difficulties related to cognitive pathologies could increase difficulties in maintaining patients at home. Even if detection of cognitive pathologies was effective, participants lacked enough time and resources to use such methods, and complained about the lack of therapeutic options.
The opposition of oldest-old patients to the care management proposed by GPs was associated with a lack of cooperation with the implementation of prevention measures and therapeutic education. There could be a rejection of institutionalization or of the implementation of human and material assistance in the home.
It was difficult for patients to accept changes in their mode of life. Even if admission in a retirement home could be of benefit to oldest-old patients, as it allowed more careful monitoring and availability of human resources, it was envisaged only as a last resort. Participants had a negative view of such establishments and associated them with unhappy aging. They reported that this step was difficult to accept for their patients, who refused it and associated it with proximity to death. They considered that their patients aged successfully if they could end their life in their own homes. A4: “Hmm, there’s still a big difference between older patients ending their days in a retirement home and those who are lucky to stay at home. (…) For these patients, ending up un in an institution, it’s really… well. it’s like signing their death warrant.”
Another difficulty expressed was in referring their oldest-old patients to other specialists and to hospital services. They explained this difficulty by “a growing lack of hospital beds during the last thirty years.” These difficulties could bring participants to get annoyed or elaborate strategies to find a hospital bed for their patients. This resulted in the feeling that the care of their oldest-old patients rested solely on primary care and GPs. They had to organize the care of these patients, and having to manage with heavy pathologies on their own. They felt that this role, which normally fell to specialists, was imposed on them by the circumstances. D1: “You see they start to be a bit better cared for, we are the ‘multi-specialist’ of these patients. It’s true that it’s complicated.”
The absence of a contrasting frame of reference
Participants felt ill equipped to manage their oldest-old patients. While they used various geriatric evaluation scores and concepts like “frailty” in their evaluation, they complained about the lack of recommended best practice adapted for oldest-old patients.
A1: « and I was horrified some time ago to realize that there was nothing about recommendations, research about older patients: nothing!” A1: “All we do and all most people do is wing it! This has to be said.” In response to this situation, participants said that they used empirical and uncertain evidence to care for their very old patients. They admitted that their management of these patients was mostly informed by their personal experience, their gut feeling and their representations, in a subjective way. Clinical experience allowed them to better face these difficulties. They based their approach on remaining life expectancy. They remained nevertheless conscious of the imperfection of this intuitive approach, and admitted that they could make errors of appreciation.
The doctor-patient relationship: towards a tripartite relationship
Despite all the reported management difficulties, a well-meaning relationship was maintained between GPs and their oldest-old patients. Participants felt affection and compassion for their patients. They described themselves as accompanying parties, who would bring empathy and pedagogy, while allowing their patients to be decision-makers. They recognized that oldest-old patients trusted their GPs to do what was best for them. Participants questioned themselves while caring for this category of patients. Faced with the advancing age of their patients, participants sought to include the patient’s main carer and to prepare them to the risk of the patient dying. As loss of autonomy progressed and cognitive troubles appeared, the oldest-old patients were not fully able to manage their own health care, and a tripartite relationship became established between the GP, the patient, and the carer. This was sometimes viewed as infantilizing.
Medical disengagement and management of oldest-old patients
At the same time, participants described within their practice a succession of adaptations, that could be defined as medical disengagement. The objectives of health care needed to be less strict (for example regarding blood pressure level or HbA1c level), with limited invasive practices (less specialized consultations and complementary examinations). Prevention needed to focus mainly on prevention of falls and limitation of functional decline. Deprescribing was the best illustration: A5: “Of course, but each drug often has a role… Well we see why it was prescribed, well, I find that it is intellectually difficult to say ‘well, this drug, let’s just put it aside’’.
This GP-led medical disengagement was rational and thought out. They reasoned about the risk-benefit balance of each decision. Faithful to the doctrine primum non nocere, the objective of medical disengagement was to do no harm to the patients. Participants insisted on accompanying patients and avoiding iatrogenicity. Medical disengagement was justified by lesser stakes in the management of these patients as they had already exceeded their imagined life expectancy. They were however exposed to the opposition of their patients, as these same patients’ past experience rested on following the recommendations of their GP.
A2: “Well it’s difficult to adapt because they are… we have drilled into them for years that they need to be careful, be careful, be careful… At the time when we lift the pressure because we think, well, there’s not much point, we’re going to be OK, they say: ‘but why, am old’? Ironical tone: ‘no, well, I mean… (…) in fact it’s just to remove some of the medication, so that you have less to take.’ Then, imitating the patient: ‘but why did we not do it earlier?’ Taking a lighter tone: ‘ah well, it’s difficult to explain’. Taking a more serious tone: ‘it’s difficult!’”.