Making it Work: Everyday Life and Healthcare with Multiple Chronic Illnesses in Denmark

ABSTRACT

A growing concern in clinical literature with the “treatment burden” of living with multimorbidity raises questions about how we can study and produce knowledge on the impact of health care. In this article, we draw on ethnographic material from fieldwork among people with multimorbidity in Denmark and recent theorization on “values” in health care, to show how an ongoing “trying out” and ways of “just getting on with it” are enacted in illness trajectories marked by multimorbidity. Our findings point to the importance of attending to the subject positions that particular healthcare relations and encounters make possible.

KEYWORDS:

• Denmark
• care
• healthcare
• illness work
• multimorbidity
• values

In their seminal study from 1985 on the types of illness work involved in managing chronic illness in the home, Strauss and colleagues wrote that “a person may have a single illness or multiple ones: while managing one illness may be complicated, the management of two or more can be much more so” (Corbin and Strauss 1985:229). Here, they foresee what is now perceived as an emergent global health problem, that people increasingly live with several concurrent chronic illnesses. This is often termed multimorbidity or comorbidity (Academy of Medical Sciences 2018; Banerjee 2015; Barnett et al. 2012). Across clinical research and social science, numerous scholars have engaged in studying and assessing the lived experience of multimorbidity and the role of health care (Banerjee 2015; Barnett et al. 2012; Duncan et al. 2018; Ecks 2020). With the increasing specialization of both medical knowledge and healthcare systems, a growing body of clinical literature is concerned with the “treatment burden” of living with multiple chronic illnesses, understood as “the consequences people experience as a result from undertaking treatment” (Sav et al. 2013:665). The aim is to provide healthcare providers with frameworks and tools “to detect people overwhelmed by adhering to complicated treatment routines” (Sav et al. 2013:665). Such frameworks urge clinicians to consider “whether what is ‘done to’ or ‘asked of’ patients […] is achieving their goals for life and health or those of the healthcare system” (Trevena 2018:175).

A related concept is “cumulative complexity,” where scholars suggest a framework of patient “workload” on the one hand, and patient “capacity” on the other, to assess if a “tipping point,” with an associated risk of insufficient self-care is reached (Shippee et al. 2012:1043). Such frameworks raise questions about how we can study and know the impact of health care in the lives of people with multimorbidity.

There is an increasing tendency in policy and research to quantify the impact of health care on morbid living (Wahlberg and Rose 2015). Medical anthropologists and philosophers have shown how the lived experience of illness is not easily captured by pre-defined categories of health and illness (Mattingly 1998; Mol 2003). In this article, we are inspired by recent writings on the social shaping of value in health care (Ecks 2022; Pols 2023) to ask questions about how everyday living and healthcare interactions unfold together in lives marked by illness(es). We draw on ethnographic material from fieldwork with people living with multimorbidity in Denmark, and recent theorization from Dutch anthropologist and philosopher Jeannette Pols, to ask how particular values are enacted in healthcare interactions and everyday life in the context of multimorbidity (Pols 2023). In public health discourse and policy, “value-based healthcare” is often used to denote models and frameworks aiming at increasing health and lowering costs at the same time (Fleming 2023). But how can we understand and study the value(s) enacted through specific encounters, technologies, and practices in the context of multimorbidity? In this article, we take our departure from writings by STS-scholars and the idea that each medical encounter, pharmaceutical intervention, technology, and so on, is also part of continuously ongoing negotiations and enactments of possible and desirable ways of living with illness(es) (Mol 2002, 2008; Pols 2015).

In doing so, we join other scholars who have pointed out that thinking quantitatively of multimorbidity misses the complex dynamics of navigating everyday life and healthcare encounters (Weaver et al. 2016). In the following sections, we place our study in the context of earlier ethnographic studies on multimorbidity and the specificities of care for multimorbidity in the Danish healthcare system. Then, we present our methods and theoretical point of departure before analyzing two case studies of people living with multimorbidity. We end the article with a concluding discussion.

Background: Ethnographic studies of multimorbidity

In earlier studies, anthropologists have pointed to the recursive and cascading effects of environmental, structural, and biological factors which shape clusters of disease and social problems for those people living with multiple chronic illnesses (Manderson and Warren 2016; Singer et al. 2017). The most influential example of this research in the interface between anthropology and epidemiology is the model of syndemics. This model explores the synergistic processes and “the pathways through which they interact biologically in individuals and whole populations” (Singer et al. 2017:941).

As pointed out in recent studies, although such models and theories provide valuable insights into the complex ways in which social, environmental, and biological factors interact, they do not illuminate the lived experience of multiple chronic illnesses (van Blarikom et al. 2022). Anthropologist Emily Mendenhall uses the term “syndemic suffering” (Mendenhall 2016:469) to bridge this gap and point to the particular types of suffering that comes from living with specific clusters of diseases and social problems and how to study these ethnographically. These studies have shown the importance of the political and structural context for how one can go about living with multimorbidity (Mendenhall 2016) and have highlighted the interpersonal aspects of suffering when diseases cluster to one another (Weaver 2016). Anthropologist Lesley Weaver has shown how the routinization of disease and suffering, sometimes makes how people “negotiate complicated webs of duties, relationships, and practical questions brought about by their illnesses” invisible or unremarkable (Weaver 2016:501). Studies of how people experience their daily living with such disease complexities have often focused on the manifestations and expressions of social suffering and the workings of such phenomena as vulnerability, precarity, deprivation, and loneliness (Ecks 2021; Fudge and Swinglehurst 2022;; Hay 2010; Weaver 2016). Anthropologists have shown the valuable insights that come from studying the frustrations that comorbidity and multimorbidity produce in clinical settings (Ecks 2021; Livingston 2020). These studies point to the shortcomings of a single-disease etiology and healthcare infrastructures based on insufficient disease taxonomies and classifications. Health care in the context of multimorbidity has furthermore been shown to produce inequality (Jønsson 2018; van Blarikom et al. 2023) and iatrogenic effects (Ecks 2020).

Fewer studies have focused on the complex ways that health care is also part of how people shape livable worlds with multimorbidity (Robbins 2013). The interlocutors in our study were dependent on different kinds of health care and social care to survive and thrive. Therefore, in this article, we ask about the ways that such liveable worlds take shape in the context of the Danish welfare state, and how specific values are enacted in ongoing relation to the healthcare professionals and others that engage in handling multiple chronic illnesses.

Multimorbidity and the Danish healthcare system

Except for a few “multimorbidity clinics” (Bell et al. 2023:2), comorbidity and multimorbidity in Denmark are almost exclusively handled one illness at the time in a vertically structured healthcare system (Guassora et al. 2020). The Danish healthcare system is divided into three administrative units: regions (responsible for hospitals), municipalities (responsible for prevention and rehabilitation) and a publicly funded private sector of general practitioners (GPs). When you are diagnosed with a chronic illness you are offered regular follow-ups either in the hospital or with your GP. People with multiple chronic illnesses therefore end up having multiple medical trajectories to follow in different parts of the healthcare system. Our earlier work has shown how focus on a specific diagnosis often exacerbates the medical complexity of patients who travel in and out of different clinics with symptoms related to more than one illness (Skovgaard et al. 2022, 2023). Other studies have pointed to the problems that arise from the “silos” of the Danish healthcare system, with suboptimal coordination and communication between sectors, institutions, and healthcare professionals (Andersen et al. 2019; Hansen et al. 2015). This holds the risk of harmful iatrogenic interactions and fragmented health care (Ahgren 2014). Another effect is that it places a lot of coordination work and responsibility on patients and their families, as health information does not always travel easily between clinics (Rogvi et al. 2021). Despite such challenges, our material also shows how our interlocutors made the coordination of their care work, day after day, despite severe illness and complex treatment regimes. This calls for an analysis of the everyday collective work of healthcare professionals and patients and what American anthropologist Joel Robbins describes as “the different ways people organize their personal and collective lives in order to foster what they think of as good” (Robbins 2013:457). As we show in this article, the Danish healthcare system holds multiple possibilities for adapting care to the complexity of multimorbidity, but the concrete working out of the best care in a specific situation still depends on tireless tinkering by multiple actors (Mol 2008).

Fieldwork, methods, and analysis

The findings in this article are based on 20 months of fieldwork conducted by the first author in Danish clinics and homes between April 2019 and December 2020. The project was designed to investigate the different kinds of work involved in patient trajectories marked by chronic illness and repeated acute hospital admissions. Initially, participant observation was carried out by the first author in three different medical wards and one emergency department for two to three weeks at each site. Subsequently, nine patients were recruited and followed for 1–18 months, during which time the first author made home visits, participated in clinical encounters, and spoke to them on regular telephone calls.

Patients were recruited during an acute admission to hospital. Upon discharge, the first author called the interlocutor (on agreement) and made appointments for home visits. Four of the nine interlocutors had to withdraw from participation within one to three months due to severe illness. The other five interlocutors remained in the project for 6–20 months. The first author visited them in their homes and followed them during hospital admissions, clinical visits, and occasionally at social events. In the home visits, themes relating to illness, treatment, daily practices, and interactions with the healthcare system were explored. Conversations during home visits were audiotaped and transcribed verbatim. Detailed fieldnotes were written up, focusing particularly on moments that spoke to the subject of negotiating health-related practices, work, and resources in relation to the healthcare system. Analysis of the material took place in the research group, where themes were discussed, and guiding concepts were formulated (Hammersley and Atkinson 2019; O’Reilly 2011). The study was not designed to focus specifically on multimorbidity, but all the interlocutors shared the experience of dealing with multiple chronic illnesses simultaneously, and going through repeated acute admissions to hospital, which shaped their illness trajectories across the divides of different clinical contexts of planned and unplanned health care. Therefore, multimorbidity emerged as a phenomenon of interest during fieldwork, and the ethnographic material spanned multiple locations forming multiple illness trajectories.

Multimorbidity is a difficult phenomenon to study and to make ethnographic comparisons about, because it may contain so many different diseases and medical regimens (Møller et al. 2020). Multimorbidity is both more common and produces more complications among people with lower education and income, and in deprived and disadvantaged neighborhoods (Manderson and Warren 2016; Mendenhall 2016; van Blarikom et al. 2023). A majority of the interlocutors in the present study lived in their own homes in suburban areas outside a middle-sized town in Central Denmark Region, which does not form part of the more socially disadvantaged areas in Denmark (Jønsson 2018). Although a few interlocutors were on an early retirement pension and had been outside of the job market for several years, they either lived with family members who supported them, or lived alone in functional, average-sized houses. This positioning on the outskirts of a broad middle-class in a welfare state shaped their possibilities of living with multimorbidity. They had access to health care and basic income. Throughout fieldwork and analysis in our study, clinical and public health framings of the phenomena of multimorbidity, did not resonate with how interlocutors seemed to make it work, struggling along without dramatic “tipping points” or breakdowns in self-care (Shippee et al. 2012:1043), even in periods of immense medical complexity, life-threatening symptoms, and related problems with social relations and daily living. In our analytical work, we searched for a theoretical framework that did not overly emphasize the suffering and burden, and that made space for an analysis of the “doings” and values of specific forms of health care (Mol et al. 2010; Pols 2023). The examples in the cases have been chosen from a larger body of material because they speak to what emerged through fieldwork as valued practices for getting through the day. We have chosen to present our findings in the format of case-studies, as it allows for the thick description and contextual details that make up an illness trajectory (Flyvbjerg 2016).

Names in the article are pseudonyms, and details which are unimportant to the analysis have been changed to ensure anonymity.

Theoretical approach: The enactment of values in everyday living with multimorbidity

Anthropologists have a long history with theorizing “value” (see e.g. Graeber 2013; Lambek 2008; Otto and Willerslev 2013). A recent example is the book Living Worth by medical anthropologist Stefan Ecks (Ecks 2022). He presents depression as a problem of value and unfolds the many ways that antidepressants come to have value. Ecks shows how value is shaped by social processes that deals with that which makes life better, and comparisons of two entities to determine which is better at enhancing life (Ecks 2019, 2022). Such theoretical insights call for questions about how we can study the “enhancement of life” ethnographically in the context of health care and multimorbidity. In this article, we draw theoretical inspiration from writings about care within science and technology studies, where care is defined by a particular logic of tinkering with practical problems in specific situations and attending to the continuity, independency, and contingency of living with chronic illness (Mol 2008; Mol et al. 2010; Moreira 2010; Pols 2005, 2012). Conceptualizing care as tinkering allows for an openness toward what and who can be caring, as long as it helps the ill person to live the best life possible (Pols 2015). In her recent book, Jeannette Pols takes the approach of the philosophy of the good-life-as-practice to explore how we can study and produce knowledge about “forms of the good” in everyday lives marked by chronic illness (Pols 2023:18). Pols argues for the empirical investigation of esthetic values as inherent to practices and emerging through practices, and thereby foregrounding embodied and socially shaped appreciations, rather than rational calculations and individual preferences. In the book, she conceptualizes the self as a “practice of worth” and thereby shows the inseparability of selfhood and practice (Pols 2023:219). By analyzing, for example, the practices of women who have become bald due to chemotherapy, she argues that their “selves” emerge as “a position that they valued and that emerged through particular manipulations and enactments (wearing wigs, going to workshops, hospitals, and so on)” (Pols 2023:231). She writes “Bald women shaped a self by appreciating and valuing the subject positions they could take rather than thinking about, knowing (‘taking the self as one’s object’) and judging” (Pols 2023:231 emphasis in original).

We draw on Pols’ writings to suggest the importance of attending to values and appreciations as enacted in patient trajectories involving multimorbidity. In the following, we analyze two cases, Laura and Paul, and show how specific values and subject positions take shape in interactions with family, healthcare professionals, and social workers to make it work with multimorbidity. Our analysis shows how values cannot be separated from the details of specific illness trajectories and from the specific situations they are enacted in. Overall, we show how healthcare encounters and practices are appreciated and valued for the role they play in the ongoing struggle to get through the day with illness in the best way possible. In thinking with Pols, we analyze how rather than being objects to know and judge, healthcare practices and encounters are valued and appreciated for how they make specific ways of being in the world with illness(es) possible.

Laura: tinkering with a Gordian knot

Laura seemed to be constantly on the move and keeping busy, despite the many challenges that her body presented. She was 49 years old at the time of the study. In an interview, she explained that she had been on early retirement pension for the last 20 years due to severe asthma, with multiple attacks causing respiration stops and resuscitation in adolescence. Before asthma forced her onto an early retirement pension, she had studied nursing and worked as a nurse for a couple of years. When talking about her illnesses, she stated that there was a turning point in high-school when she caught pneumonia and was bed-ridden for 2 months. From then on, a downward spiral of progressive health deterioration started. In the years following, the incident in high-school, Laura struggled with severe asthma, polycystic ovary syndrome (PCOS), depression, chronic pain, overweight, and heart arrhythmia. She took 24 different medications each day. She had five apps on her cell phone to help unravel the history of symptoms, medications, and examinations. Laura’s illness story resembles what anthropologists have called “recursive cascades,” where social disadvantages and ill health continued to exacerbate one another, and new symptoms and problems kept appearing (Manderson and Warren 2016:491). In Denmark, you need a referral from your GP to specialist clinics. For several years, Laura’s GP did not take her seriously and kept saying, “it is of no use” when Laura had suggested interventions that she thought might help her. Therefore, she had recently changed to another GP, who, Laura explained, had decided “to go all in to help her.” The new GP and Laura had decided to meet regularly in double-length consultations (30 min instead of 15 min) to go through her situation. These consultations led to several referrals to specialist physicians and hospital clinics. With the rheumatologists at the local hospital, she was under investigation for rheumatoid arthritis. With the psychiatrists at the university hospital, she was under investigation as a possible candidate for electroshock therapy. In the pharmacology clinic in the same hospital, she was under investigation for possible interactions of her several medicines. Going “all in” also meant unraveling some of the more invisible parts of Laura’s medical history. Because it stretched back in time and place (20 years of chronic disease and Laura had moved home several times), Laura and her GP tried to retrieve old hand-written medical records from the time when she had first received the diagnosis of asthma.

Laura’s interactions with her GP and the shifting specialist physicians often took the form of “detective work” where they seemed to engage in the work of untying a Gordian knot of old medical records, her embodied experience of symptoms and illness, pharmaceuticals, test results, and shifting diagnostic categories. One of the challenges was how to disentangle if a certain symptom or clinical sign could be ascribed to one diagnosis or the other, or to a side-effect of medication. Interestingly in Laura’s case, in all of the three trajectories, she followed at the time, the specialist physicians suspected symptoms to be related to Laura’s medical treatment, rather than to one of her other conditions. There was no easy way to be certain. Although these developments involved further accumulation of “illness work” and exacerbated the number of uncertainties that Laura dealt with, Laura expressed that she was happy with her new GP, and said that “finally something happened.” Drawing on Pols’ suggestion that selves are “practices of worth” (Pols 2023:219) we can see Laura’s engagement in multiple treatment trajectories with uncertain outcomes as an appreciation of the kind of “detective work” that became possible with her new GP. These emerged as practices of “trying things out” that made Laura hopeful of finding new solutions and better ways of living with her illnesses.

As in the case with Laura’s old GP, we saw other examples of how questions about the “value” of the health care came up in medical encounters. Laura had been referred by her GP due to suspicion of rheumatoid arthritis because she experienced having “cotton under her feet” and sensory disturbance in her hands. In the consultation, the rheumatologist and Laura tried to disentangle how the symptoms had started and to determine if they were related to taking certain medicines or indicated arthritis. After a thorough and systematic examination, the physician found no convincing signs of the diagnosis and concluded that it might instead be related to a specific medication that Laura took for another condition. In this consultation, the physician ended up suggesting that Laura should consider how much these symptoms affected her daily living and assess if further testing was “worth it.”

The rheumatologist asked Laura to assess her symptoms in relation to their practical consequences, and consider if it was “worth the trouble” of going through more examinations. This was a difficult question for Laura to answer, because the symptoms considered in the consultation were part of a larger complex clustering of sensations and embodied signs, which together created a range of difficulties for her in daily living. For Laura, engaging in examinations and consultations in the rheumatology clinic was one piece of a larger puzzle. When talking about it afterward, Laura placed her hope in the statement that the symptoms might be explained by a medication she took. Later in the afternoon, when Laura told the GP about the conclusion in the rheumatology clinic, the GP said, “but this has been ruled out by the clinical pharmacologists at hospital! You told him that, didn’t you?” With her statement, the GP introduced a “dead end” in the detective work, making Laura’s symptoms (at least momentarily) unexplainable. Laura looked both confused and disappointed when hearing this, and said in a low voice, “I think I forgot to tell them.”

The example shows how, even if the encounter with the rheumatologist did not lead to a new diagnosis and a treatment plan, it is part of the ongoing detective work that Laura engages in. There is no way for Laura to know if it will be “worth it” (in terms of improved health) to engage in examinations in the rheumatology clinic, but she values it for the small clues it gives, that she can bring forward to her GP in their collaborative efforts to care for Laura. Even if Laura does not articulate it verbally, the value and appreciation of an ongoing “trying out” is enacted.

The new GP had also referred Laura to clinical pharmacologists in a university hospital to sort out many of her medicines and to investigate if interactions between them could explain some of the symptoms. This had proven difficult because Laura experienced exacerbated symptoms of dizziness and depression after the withdrawal of some of the medicines that she had been taking for several years. Was this the disease flaring up or withdrawal reactions? Laura and the physicians grappled with these questions. At the same time, the psychiatrists had withdrawn other medications as part of her trajectory with them. This meant that Laura had two different clinics who instructed her to call them if she experienced symptoms. But how should Laura know when a specific symptom was relevant to this specific clinic? These examples clearly show how trying to sort out what is cause and effect in Laura’s situation produces “cumulative complexity” and “treatment burden” (Eton et al. 2012; Shippee et al. 2012). Yet, there was no overarching narrative of suboptimal care or insufficient treatment to trace in conversations and interviews with Laura. She was very happy with her new GP, where she appreciated that someone was finally listening to her and taking her symptoms seriously. She was also grateful for being seen by specialists in the different clinics, because for her it was a way to rule out serious illness (that could be treated) when she experienced life-limiting symptoms.

The enactment of the appreciation of trying things out and doing the detective work was also directly related to procuring the practical help she needed. Laura suffered from breathlessness and pain in muscles and joints, which made it difficult for her to move around. She had attacks of dizziness and coughing, which sometimes made her faint and fall with a risk of hurting herself. These symptoms made everyday activities such as cooking, cleaning, and grocery shopping difficult. She needed practical help and assistive devices to get through the day. Laura lived with her husband and a teenage son in a rural area without any close neighbors. Her husband worked a lot, and her son did not spend much time at home. She had negotiated with the municipality for years, but she had been told that her (young) age and having a son living at home made her ineligible for help. Together with her GP she discussed the right arguments to present to the officers from the municipality. An example was an episode where a supervising officer had visited her home to assess her eligibility for borrowing a three-wheeled bike, which her GP had recommended because sudden cough attacks could cause her to lose her balance on a two-wheeled bike. When describing it later to her GP, Laura said that she had presented arguments within what she termed a “prophylactic frame.” She had claimed that if she could not ride a bike now (which required a three-wheeled bike), they (the municipality) would have to provide a wheelchair and an assistant a couple of years ahead, referring to her risk of becoming immobilized by inactivity. Laura ended up getting the bicycle. Following this, we can see the connection between Laura’s living situation and the values enacted in consultations with her GP. It provides a space where they can mobilize knowledge of medicine and the welfare system to procure the things Laura needs. It makes her less lonely in doing the illness work. This displays both the importance of what Pols call the “materials to work with” and the available “skills to craft these materials” (Pols 2023:232) in understanding the enactments of care and self in the context of multimorbidity. Laura’s situation as isolated and often lonely in dealing with her illnesses and their practical consequences, but at the same time being good at problem solving and medically adroit, gives rise to particular appreciations and ways of making it work.

In her new GP, she also found a counselor. Besides initiating investigations into some of Laura’s symptoms, the GP also talked to Laura about her situation in general; her marital problems, her alcohol use, and her feelings of loneliness. In this way, the GP had a “holistic” approach, that Laura appreciated. The final comment by the GP in the consultation with Laura reflects this approach: “We have a big, blended picture here. We just have to know that we steer in the right direction and not just in any direction.” This comment frames the aim of their interaction as navigating the complexity of Laura’s situation, rather than pointing out specific goals related to single diseases. Part of this navigation involves digging in medical records, procuring test results, and discussing strategies for getting through the day. In Laura’s case, multimorbidity takes shape as the disentangling of the Gordian knot of symptoms, diagnosis, treatments, social relations and possible solutions. Neither Laura nor the shifting physicians can anticipate whether an initiated trajectory will alleviate her struggles with daily living. Rather than navigating according to an overarching plan or map, they each try things out, and tinker from their position with different aims (Mol et al. 2010). The GP aims to get an overview. The psychiatrist aims to find a solution for the depression. The pharmacologist aims to disentangle the pharmaceutical knot of effects and interactions. Despite engaging in so many healthcare encounters and interventions, it seemed to have little positive effect on Laura’s breathlessness, dizziness, and pain. Rather, the many medicines were suspected to worsen her symptoms. So how can we understand the value of continuously engaging in more interventions and examinations? Analyzing Laura’s case through the prism of socially shaped values and appreciations may help in providing a language for alternative assessments of the “effects” of health care in the context of multimorbidity. Laura’s case shows how, rather than being premised on rational calculation and individual choice of how to “optimize” health, healthcare interactions are appreciated for what they do to make life more liveable with multiple chronic illnesses. In the next section, we turn to Paul, and the enactment of the value of “just getting on with it.”

Paul: bracketing multimorbidity

At the time of the study, Paul was 78 years old, and lived alone in his house after his wife had passed away the year before. Ten years before, Paul had received the diagnosis of COPD, a chronic lung disease that makes it increasingly difficult to breathe, with an increased risk of acute and life-threatening exacerbations. In the years that followed this diagnosis, he had also received a diagnosis of heart failure and type 2 diabetes. He also suffered from recurring liver cysts, which gave life-threatening bleeding on several occasions in the time we followed him. His most debilitating daily symptoms were breathlessness, sleeplessness, and occasional pain in the chest and liver. These symptoms often caused problems with maintaining his house and garden and with cooking, cleaning, and engaging in social activities. On some days, the breathlessness was really bad. Then, Paul had difficulties moving between the sofa in the living room and the bathroom. When diagnosed with COPD, his wife, through 40 years, was already ill with the same disease. She soon worsened and died in the year before Paul entered our study. During the final 5 years of her life, Paul had cared for her in their home (in the final months in a care bed in the living room). He explained that she feared physicians and hospitals, and she had wished for a minimum of contact with formal health care. Paul did not share this fear and had plenty of engagements with different clinics and had daily visits from the home care team in the period we followed him. Just like Laura, Paul had a trajectory (with different specialists) for each of his illnesses and a vast amount of related illness work. He took 20 different pharmaceuticals, monitored signs of worsening, and attended to his nutrition, movements, and habits. Paul was very attentive to the information given by healthcare professionals and kept track of many things, ranging from how many hours he had slept to how many corticosteroids he had taken (a medicine to take during infections and exacerbations of breathlessness). In contrast to Laura, Paul did not have a GP who scheduled regular 30-min consultations. Instead, he was affiliated with a health center in which he saw shifting physicians and nurses. He contacted the center when he needed help, and came to planned “follow-ups” for each of his diseases. He had numerous “routine” X-rays, heart scans, and blood samples “to check everything with the blood.” He rarely knew precisely why, except that “it was a long time ago” and “they just want to be sure.” Paul attended to these things without complaining and he put a lot of effort in trying to understand the information he encountered. Just like Laura, he appreciated the initiatives taken by the physicians as an effort to do something for him. “The physicians really care for you here,” he said about his health center. While sharing the appreciation of healthcare professionals who engaged in trying things out, another important value emerged in our analysis of Paul’s case. This resembles what Portuguese sociologist Tiago Moreira called “to just get on with it,” in his study of early memory loss (Moreira 2010:137). Just like Laura, Paul had an overwhelming amount of healthcare interactions, medical regimens, health information, and examinations to attend to, without any improvement of his overall health condition. Things went up and down, but he was constantly challenged by breathlessness, sleeplessness, and pain. In contrast to Laura, Paul had a large social network of family members, neighbors, and friends, who played an important role in daily living.

Analyzing Paul’s healthcare encounters and everyday life through the prism of enacted values shows how seemingly mundane interactions and practices helped him make it work. An example of such an arrangement, was Paul’s daily writing of short notes in a one-page-a-day Mayland calendar. In this diary, medical concerns were intermingled with all kinds of other concerns. He said he began writing the diary because of the overwhelming number of things going on when his wife was dying, and he became severely ill himself. The diary contained details on the procurement of medicines and other materials such as coffee machines and tablecloths, descriptions of healthcare encounters, and what had been said and done. It was short descriptions of observations such as: “I have 400 kroner in my bank account. It is our 44th wedding anniversary.” It contained descriptions of bad days: “Feeling terrible. Called and begged the GP for corticosteroids. Drove around without leaving the car,” good days: “Louise [granddaughter] visited. Played cards, went for a walk, good day,” and just regular days: “Ate breakfast together like every Saturday.” The content of the diary represents what could have been daily exchanges between the spouses while they were both alive. What do we need to do to maintain the house, the garden, and our health? Do we have medicines in the house? Food? How do we fix the car that broke down? And if something needed to be bought, done, fixed – who could help? How and where could we get the things? Attending analytically to the practice of diary-writing and the decisions on what to put in the diary, together with Paul’s reflections, reveals how illness, including life-threatening multimorbidity, is managed day by day and demanding attention to numerous seemingly small and mundane practices. It shows how medicine and treatment make up only some of many elements in a larger chronic care infrastructure that makes management of illness in the home possible (Langstrup 2013).

Following our interest in the values and appreciations that emerge through practices (Pols 2023), the diary represented ways of just getting on with it in a situation marked by serious illness and uncertainty. Rather than focusing on individual experiences of being ill, or “personal stuff” as Paul phrased it, the diary did not only contain his illnesses; it also involved the health problems of others. Paul wrote about, and discussed illness and its related practical problems with his children, siblings, neighbors, and friends. Being 78 years old, several of Paul’s siblings and friends also suffered from multiple illnesses. In daily encounters and telephone calls, they contrasted and compared symptoms, solutions, and how to interpret the words of physicians. In case of a practical or acute medical problem, these people would help in different ways. Although Paul occasionally felt lonely and missed his wife’s company, he was still surrounded by many people who formed provisional care collectives when a problem needed to be handled. The illness work was spread out over many people. The value of just getting on with it, and to handle one problem at the time, without too much attention to the larger frame of complex diseases and its possible coherences, emerged through many of the practices we observed while following Paul, including healthcare interactions. In conversations with the first author, Paul often framed his practices of tracking and negotiating in the clinic in terms of practical, concrete problems experienced in daily living. He came well-prepared to each scheduled consultation, so he could get to ask the questions related to what bothered him the most. We will illustrate this in the following example.

At one point, Paul brought a list of sleep hours for each night in the past week to a diabetes consultation to ask if something could be done about this problem. Although this initially caused a slight frustration in the nurse (because it seemed to be outside the scope of the consultation), Paul insisted that the sleeplessness mattered more to him currently than his long-term blood glucose. In the consultation, the nurse ended up getting a physician, who referred Paul to an X-ray to check if excessive bodily fluid might explain the sleepless nights. This was not the case, and the physician returned to Paul and the first author in the waiting room. The physician sat down on a chair and asked, “what should we do about the sleepless nights?” This led to a conversation about nervousness, breathlessness, and all the things Paul had tried out (borrowing an elevation bed, moving it into another room, going to the living room, watching TV, taking sleeping pills). The physician listened and made suggestions. Finally, she and Paul planned what he should try out on the following nights. In this situation, the consultation was allowed to develop from a focus on a single disease and its standardized “follow-up” to a focus on “the problem of the day” and its possible solutions (Moreira 2010). The physician and Paul stayed with the problem at hand to deal with what bothered Paul the most at that moment, while bracketing the larger horizon of multimorbidity.

Like in the example with the encounter between Laura and the rheumatologist, a focus on the rational calculation of value in the form of improvement of disease, may lead to a judgment about the medical “necessity” of an x-ray or examination, but looking closer to the situation reveals that these practices also form part of on-going trying out of possible causes and solutions to immediate problems of, for example, sleeplessness and practical work. In such instances, ruling out serious disease may be a prerequisite for discussing more mundane problems and solutions.

Getting through the day for Paul involved numerous arrangements in shifting care collectives (Mol et al. 2010). An important aspect of these arrangements, is that they were not limited to dealing with Paul’s illness. As an example, he lived next door to his son and daughter-in-law. Both had health problems of their own. Dealing with social anxiety since early childhood, his son had periods of isolation. Being vulnerable to sudden changes and having difficulty forming part of a workplace and social group, he also depended on constant flexibility and the collective handling of problems in the family. The daughter-in-law had problems with her hips, which prohibited her from working.

Paul also had a daughter and son-in-law, a grandchild who he had a close relation to, and four living siblings. While nearly everyone faced daily challenges due to illness, they had an impressive array of concrete practices to deal with problems. Living next to each other, Paul and his son and daughter-in-law had daily contact. They had several routines of cooking for each other, procuring things for each other (for example, medicines), and helping out. Despite living next door to each other, they had installed a walkie-talkie system, which enabled them to contact each other in an instant.

Both Laura’s and Paul’s case show how making it work with multimorbidity depends on continuous relationships with healthcare professionals and others. Living in a welfare state gives access to health care, but the kinds of interactions and the values they enact are still crucial in shaping livable worlds. Moreira writes about the collective arrangements needed to handle illness, that they are “ever-provisional and fragile, as they are constantly made and unmade” (Moreira 2010:134). As an example of this, during the COVID-19 lockdown, Paul’s son developed strong anxiety and cut off all contact for several months. This development canceled all the routines that the family had put in place to make daily living easier: no more meals, procurements, or practical help. It seemed disastrous for both Paul and his son. Although they both suffered from this, the care collective ensured that it did not result in a catastrophe for any of them. Things that his son used to help with were taken over by others: his daughter, who lived a bit further away, neighbors, and friends from his painting group. His son isolated himself to feel safer. Although Paul was frustrated with the lack of contact and worried about his son, there was no blame or judgment to be found. This was just the way things were, and they all had to get on with it. As time passed, father and son made small attempts to regain contact, finally succeeding.

Paul’s case shows how the kinds of care arrangements that he is part of, allow for the “bracketing” of multimorbidity and enact an appreciation through attending to the practicalities and materialities of everyday life. Severe illness is a constant part of this, but through particular practices, it takes shape as a value of “just getting on with it,” where pragmatic tinkering with mundane details takes center stage. While both Laura’s and Paul’s cases have elements of “detective work,” “trying out” and “getting on with it,” their different positions in social networks, relations to healthcare professionals, and specific illness trajectories allow for different subject positions and ways of being in the world with multimorbidity.

Concluding discussion

In this article, we have explored the emergence of appreciations and values through interactions and practices in the context of multimorbidity in Denmark, and how these form part of an ongoing struggle to get through the day in the best way possible. In the first case, we show how multimorbidity takes shape as the disentangling of a Gordian knot of symptoms, diagnosis, and treatments. We showed how such disentangling work produces both uncertainty and hope in Laura’s case, and how it ultimately is valued by her for the efforts of “trying out” different things healthcare professionals invest in their interactions, rather than the precise outcomes, which are difficult to know or foresee for all the involved actors. In the second case, we show how values and appreciations take shape as a continuous handling of the problem of the day. We show how a focus on such daily practices, brackets the larger horizon of multimorbidity as an all-consuming complex life situation, and makes space for the everyday handling of “one problem at the time.” In this case, “getting on with it” emerges as a value that shapes how multimorbidity is lived, but which also points attention to concrete, material ways of making it work, day after day in the context of life-limiting illness. Our analytical approach privileges attention to ways of being in the world with illness that cannot be captured in terms that allude to grand plans and narratives of personal development or happiness, or terms that emphasize suffering, vulnerability, or crisis. The values that emerged through analysis of fieldwork material in our study, were marked by pragmatism and getting through the day, handling the “problem of the day,” contingency, and the appreciation of maintaining status quo.

We do not wish to argue that the health care provided for people with multimorbidity in Denmark is always relevant or appropriate, but rather to nuance the debates about how such assessments can be made. To ask about the values and appreciations that emerge through practices, is to ask what motivates people in their daily doings, but also how such values are shaped in particular environments and through social relations (Pols 2023). This leads to an attention to the importance of particular types of relations and practices. Laura’s case reveals how the relation to her GP allows for an ongoing tinkering with even small details about her illnesses, which she appreciates as part of a larger puzzle. Paul’s case shows the implications, nuances, and dynamics of managing chronic illness in close collaboration with family, and which allow for the enactment of a “just get on with it” approach to illness. Each situation enacts values and appreciations that can be studied ethnographically. Many people living with multimorbidity in Denmark only see shifting GPs in short-time slots focusing on one illness at the time. Healthcare practices and interactions are often focused on disease-specific goals that may be out of reach. Introducing new types of consultations in the primary sector could be one way of adapting the healthcare system to multimorbidity.

As mentioned in the introduction, the clinical guidelines and formal policies on health care for patients with multimorbidity in Denmark (and globally) increasingly use the framework of “treatment burden” to address the impact of treatment on well-being and quality of life (NICE 2016). Such a framework indicates an understanding of everyday life, where burdens can be added and subtracted to find an “equilibrium” in living with multimorbidity. Our analysis shows how assessing the “value,” “effect,” and “impact” of particular encounters and practices demands close attention to how these are enacted in concrete situations. We saw this with the pharmacologists who tried to “clean out” the many medicines Laura took. For each medicine, they tinkered with, there was the uncertainty about whether it worsened disease or gave detrimental withdrawal effects. So while the framework of “treatment burden” contributes to a timely attention to how health care can be detrimental and do “bad” things to people or simply be irrelevant, the simplification it produces is unhelpful in understanding the ambiguity of the effects it has in the lives of people.

Our material shows how embodied and clinical signs, effects, interactions, and their practical consequences for living unfold together in contingent and surprising ways. This shows the importance of acknowledging illness work and complexity as inherent to living with multimorbidity, and not a problem that can be solved, or solely ascribed to failures of the healthcare system. In many instances, there is no overarching plan or map to navigate from that can safeguard patients from medical complexity, suffering and “too much” medicine. “Good” care relies on an ongoing attention to the contingency, complexity, and effects of disease and treatment (Mol 2008). “Value” has increasingly become part of the vocabulary in public discourse on healthcare, for example in the term “value-based healthcare” often referring to different ways of determining cost-benefit relations when evaluating technologies and interventions on a policy-level (Fleming et al. 2021). Our analysis shows the importance of also studying values as social conventions related to our appreciations and desires, and how they are enacted through specific healthcare practices and encounters. The rational calculation of “Value” in healthcare practices as costs and benefits for the individual (or society) may clash with how values emerge and are put to work in healthcare encounters and illness trajectories (Ecks 2022). To capture these complexities and ambivalences, we suggest that an ethnographic curiosity, empirically exploring the concrete effects of health care and medical practices in daily living, is highly relevant to discussions of multimorbidity and healthcare planning.

Acknowledgments

We are grateful to the patients, relatives, and healthcare professionals who shared their workspaces, living rooms, stories, and reflections during fieldwork. We are also grateful to the anonymous reviewers and editorial team at Medical Anthropology for insightful comments and suggestions that helped improving the article. The research project was approved by the Danish Data Protection Agency (reference number 1-16-02-110-19) in accordance with the General Data Protection Regulation (GDPR). The project was also reported to the Central Denmark Region Committee on Health Research Ethics. The committee determined that the study required no ethical approval according to Danish legislation on health research (reference number 1-10-72-148-19).

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The research for this article was funded by The Fund for the Advancement of Health Research in Central Denmark Region, Aarhus University and The Research Fund, Regional Hospital Central Jutland.

Notes on contributors

Anna Louise Skovgaard

Anna Louise Skovgaard is an anthropologist, nurse, and Postdoctoral Researcher in the University Clinic for Interdisciplinary Orthopaedic Pathways, Elective Surgery Center, Silkeborg Regional Hospital, Denmark. She uses ethnographic methods to explore phenomena related to everyday life with chronic illness(es) and decision-making in the field of multimorbidity and musculoskeletal diseases. She draws on insights from her PhD study on illness work and multimorbidity for this article.

Tine Tjørnhøj-Thomsen

Tine Tjørnhøj-Thomsen is an anthropologist and professor in ethnographic and qualitative health research at the National Institute of Public Health, University of Southern Denmark. Her main research fields are social health, cancer, and cardiac rehabilitation, social inequality in health, health in vulnerable groups, intervention and implementation research, social relations and kinship, infertility, medical and reproductive technologies, and research ethics.

Marianne Johansson Jørgensen

Marianne Johansson Jørgensen is PhD and director of research at Horsens Regional Hospital. She is the leading researcher of CROSS-TRACKS and CAAIR: Center of applied AI research and digital Innovation. She works to create strong collaborations between researchers and practitioners, and supervises PhD students and postdocs who conduct clinical research using qualitative and quantitative methods, including artificial intelligence (AI) and data science.

Mette Terp Høybye

Mette Terp Høybye is an anthropologist and professor in medical anthropology at the Interacting Minds Centre, Department of Clinical Medicine, Aarhus University and at Silkeborg Regional Hospital. She works at the intersection of anthropology and clinical medicine, leading research that explores how knowledge comes to being and is negotiated in clinical settings between human and non-human actors and how it relates to high-stake decisions in acute and critical illness. She has conducted extensive ethnographic fieldwork in hospital settings and explored the entanglement of hospital environments and illness experiences.