Unmet health‐care needs and human rights—A qualitative analysis of patients' complaints in light of the right to health and health care

Abstract Background This study focuses on patient complaints from a human rights perspective. Despite the UN Convention on Human Rights being widely recognized, it has not previously been examined in relation to patients’ complaints on health care. A human rights perspective and the right to the highest attainable standard of health are a major sustainability challenge in health care today. Previous research points to patients’ complaints as a growing concern for health‐care organizations, and the handling of this concern can lead to improvement in health‐care services. Objective The aim was to analyse patients’ complaints on health‐care services and to examine expressed needs for health care from a human rights perspective. Methods In this descriptive study, a random sample of 170 patient complaints about Swedish health‐care services were qualitatively analysed from a human rights perspective. Results The complaints are described in three themes: the right to available and accessible health‐care services, the right to good quality health‐care services and the right to dignity and equality in health care. Questions of availability, accessibility, acceptability and quality are highlighted by patients and/or relatives making complaints on health‐care services. Discussion and Conclusion This study emphasizes the human right to health in relation to patient complaints. Findings indicate that this right has been breached in relation to availability, accessibility, acceptability and quality in health‐care services. Further debate, education and investigations are necessary to ensure that patients’ rights to health and health care not be taken for granted.


| BACKG ROU N D
There are few things in life as important as health. The right to health requires that health-care service guidelines, goods and facilities are available, accessible, acceptable and of good quality. 1 The importance of health-care services to quality of life is well recognized in modern society. Health is a fundamental part of the UN Conventions of Human Rights and indispensable for the exercise of other human rights. People will get ill, accidents arise and health-care facilities be required to diagnose, manage and treat various diseases. Despite the great importance of health-care services and substantial efforts made to safeguard the quality of health care, there are patients suffering from medical and patient safety errors. 2,3 The significance of preventing harm to patients and minimizing incidents and errors has been underscored over the last few decades. 4 Patient complaints and understanding patients' experiences have been addressed universally as a growing concern for health-care organizations. Such complaints can indicate problems within healthcare services and considered important for feedback. 5 Patient complaints can help improve health-care services, 6 as drawing attention to previous mistakes may help preventing such mistakes or incidents from being repeated. 7 However, it can be stressed that formal patient complaints are relatively rare. 7 A study on cancer patients that experienced a preventable, harmful event reported that the patients seldom formally reported such experiences. 8 Moreover, a study on patient complaints in the Dutch regulatory system indicated that only few of those making complaints felt that it had led to improvements. 9 Gallagher and Mazor 7 mean that the patient's perspective has been discounted in favour of the medical perspective of health-care providers. They argue that the perspective of patients and family members can in fact provide important insights into health care, particularly when health care is complex, fragmented or rife with transitions. Thus, patients and their families can help detect lapses in safety or quality of care. In spite of this knowledge, there is a dearth of studies focusing on problems reported directly by patients. Furthermore, knowledge on understanding health care in clinical practice in relation to a human rights perspective is still limited.
Today, there is a strong emphasis on patient participation and patient/person-centred care. 10 Although person-centred care has been widely advocated, challenges remain on how to translate person-centred care into clinical practice. 11 The needs and rights of patients need to be acknowledged. A recent study points to the prevalence of a dominant paternalistic discourse in Norwegian legislations on health care and raises the issue of the power of medical and health-care systems over the needs and rights of patients. 12 In Sweden, where this study was conducted, the Health and Medical Service Act 13 and the Patient Act 14 guide health-care services.
Swedish health care is by law 13 stipulated to provide good and equal care for all citizens. However, the number of health-care providers differs considerably between urban and rural areas. In northern Sweden, for instance, there are few health-care providers and patients might have to drive several hours to visit a doctor. Hence, access is not equal for all. Swedish health care is primarily publicly funded and managed by tax revenues collected by the county councils. However, privately managed health-care facilities exist, especially in larger cities, which are also publicly funded. Like many other health-care systems, Swedish health care has been strongly influenced by the New Public Management reform trend which is associated with objectives of efficiency, cost control and performance evaluation. Currently, Swedish health care is struggling with issues such as accessibility, quality, finance and shortages of staff. Patient safety is a prioritized issue, as seen with the Patient Safety Act, 15 which gives patients and family members opportunities to influence the quality of health care. Additionally, the Patient Act 14 aims to strengthen patients' integrity, participation in care and self-determination. Hence, patients in Sweden have rights. However, the Swedish legal system does not allow patients to claim these rights from health-care providers.
The right to health has been debated in relation to global health, in particular on issues surrounding universal coverage vs universal access. 16 The concept of universal coverage is a utopian idea that does not necessarily translate into a right or access to health. The right to health is elaborated on in Article 12 of the International Covenant on Economic, Social and Cultural Rights that states the 'right of everyone to the enjoyment of the highest attainable standard of physical and mental health'. 17 The highest attainable health has been discussed as a practical possibility, and whether or not there can be a right to health. 18 Brudney 18 elaborates that 'health care is only one important need amongst others, and in a world of limited resources, not everyone can have all things good' (p. 249). By associating health with financial constraints, the notion of health as a biological right, as it was first defined by the WHO, 16 is undermined. The right to health is a complex challenge, and governments have an obligation to progressively realize this right. Social rights in the Netherlands are internationally wellknown but like in Sweden, not considered enforceable. No human being is ever under the obligation to receive or accept care, but governments need to ensure equal access to health care for all individuals. In countries such as the Netherlands, it is increasingly the case that health care depends on factors other than medical conditions. The dominant principle of health-care law in the Netherlands is one of the personal autonomy. In fact, Dutch law sees individual self-determination as a right to which every human being is entitled. 19 Questions remain on how to understand and move towards the full realization of the right to health and health care. It may not be possible to specify this right in any reasonable and clear way.
In this study, we apply a human rights perspective, including the right to the highest attainable standard of health, when examining patient complaints in Swedish health care. A previous study emphasizes patients' exposure and vulnerability in relation to complaints and problems experienced from Swedish health-care services. 6 In the present study, patient complaints of situations and experiences from health care are elaborated on retrospectively from a human rights perspective in relation to patients' conditions and treatments.
What can we learned from patients making complaints on health care from a human rights perspective?

| Aim
The aim of this study was to analyse patients' complaints on Swedish health-care services and to examine expressed needs for health care from a human rights perspective.

| Research design
A descriptive design with a qualitative approach was used. The study was conducted having obtaining permissions and approvals for the research, as part of a more comprehensive study on patient complaints and human rights. Patient complaints were analysed with a method for thematic analysis, 20 in relation to human rights and the right to health. A previously published paper has reported on the content of the complaints. 6

| Setting and sample
In this study, a sample of patient complaints collected from a pa- From these, a systematic random sample was made with regard to complaints received on the 5th, 10th, 15th, 20th and 25th of every month. This resulted in a sample of 170 patient complaints used for the in-depth qualitative analysis.
The complaints related to hospital care (61%), primary health care centres (24%), dental care (6%) and other health-care services (9%). The patients were predominantly female (53%). For the distribution of age, see Figure 1. The proportion of the above variables in the sample were comparable to the proportion of similar variables in all complaints (n = 5689), respectively.

| Data analysis
A method for thematic analysis was used as described by Sundler et al 20 where themes were derived from experiences reported by patients and/or relatives making complaints on health-care services. A human rights perspective guided the analysis to interpret meanings from the data. The following four steps describe the analysis process.
Step 1: Firstly, to establish familiarity with the data, the researchers open-mindedly read all data several times.
Step 2: The reading continued with a systematic search for meaning units in the data on experiences and needs described in the complaints by patients and patients' relatives. While re-reading all text, the researchers reflected on details in the text to allow new insights to emerge. To identify and sort meaning units, parts of the text representing meanings were marked. The analysis proceeded with comparisons of these meanings for emerging patterns of differences and similarities.
Step 3: Meanings were condensed in a descriptive text. During this process, descriptions were developed and labelled in themes. The themes and their meanings were further explored and interpreted in view of the right to health and a human rights perspective, for example with the goal of attainment of highest possible standard of health where health-care service guidelines, goods and facilities are available, accessible, acceptable and of good quality.
Step 4: Finally, the analysis was organized into a meaningful wholeness with three themes describing the meanings of experiences from health care in patients complains in relation to the right to health. Examples from the original data were used in the results to illustrate that themes and interpretations were grounded in the data.
The analysis was mainly performed by the first author. During the process, the analysis was further refined and discussed among all researchers. We reviewed and discussed how to understand meanings in the complaints and how these meanings could be interpreted in relation to the right to health.

| RE SULTS
Three themes describe the analyses of experiences of health-care services derived from patient complaints and elaborated on with a human rights approach: • The right to available and accessible health-care services.
• The right to health-care services of good quality.
• The right to dignity and equality in health care.
Each of the themes is further described below and illustrated with some examples from the complaints made.

| The right to available and accessible healthcare services
Needs for health care may be of uppermost importance following illness and/or a diseases. In an optimal situation, the health and medical care offered corresponds to the needs and expectations of the citizens. However, experiences were described regarding problems of accessing health care when needed. Such experiences were related to unmet needs in both short-term and emergency situations, as well as in long-term care and treatment. The examples given here illustrate situations where different unmet needs were evident: • An elderly couple call for an ambulance following the man having fallen and then fainted at their apartment. The man hit the back of his head as he is falling and does not remember anything from the incident. When the ambulance arrives, health-care personnel decide not to allow the man to be transported by the ambulance to the emergency department. Neither is the physician contacted by phone. The man is left in their home, as the ambulance staff considered him to be intoxicated by alcohol. However, he is not.
Rather, his condition was caused by a cerebral haemorrhage observed several days later when another ambulance is called for.
The second call to emergency services follows a second fall and fainting attack after which the elderly man begins to cramp. His condition has worsened and he requires intensive care as a result of the cerebral haemorrhage he most likely received when falling the first time. (Complaint 83) • An adult relative reports repeated cancellations on an elderly parent for planned surgery at repeated hospital visits. At two different hospital admissions, the elderly parent has undergone preoperative preparation, including fasting, and then has to go home on the day for the planned surgery without any operation due to staffing issues. Since the diagnosis of hydrocephalus six months ago, the elderly person's general condition has deteriorated pending the operation. The adult relative is upset, disappointed and angry. They feel their elderly parent is repeatedly exposed to unnecessary suffering, while the original health condition deteriorates. In the complaint, they ask which rights and legal requirements their parent has. (Complaint 98) • A patient who previously moved from one county council area to another has made a complaint regarding significant short comings in health-care services for psychiatric outpatients. The patient states getting neither access to a doctor's appointment or medical treatment and care for several months. As time goes by, the patient describes it as impossible to get in contact with a psychiatrist, despite several attempts to address the patient's needs.
The patient has never previously experienced such problems and is troubled and upset and feels a complete lack of control with the situation. Lack of contact with psychiatric treatment services means that the patient is lacking the necessarily medical certificate for sick leave and is now is without an income. Responses from health-care services allude to staff shortages. (Complaint 38) • A parent has made a complaint regarding follow-up treatment of their child's congenital clubfoot. The child's clubfoot was continuously followed up by a specialist for the first five years.
Thereafter, no follow-up has taken place. Now, four years later, the child has grown and problems arisen so the parents have con- and services in sufficient quantity. 17 The complaints made seem to be related in particular to the availability of health-care services.
Although Sweden, as with many welfare states, is quite developed in relation to levels of health and health care as described in the

| The right to health-care services of good quality
The right to health care also relates to appropriate and good quality • A patient with an aggressive lung cell cancer has made a formal complaint when not getting any further health care after radiation therapy. The patient is weak, and she is concerned for her health.
For weeks, she has been waiting for a follow-up visit to the clinic.
She has tried to call the clinic for several times, but does not get any help. She is worried about test results and plans for care and treatment. Now she wants to get help in sorting out the situation.
(Complaint 37) The patient complaints describe problems regarding quality of care and patient safety. There were experiences of patients suffering the consequences of health-care mistakes and incidents. An essential element of the right to health is quality, 17

| The right to dignity and equality in health care
The very essence of the Convention of Human Rights is respect for human dignity and freedom. It includes the right to equality and non-

| Strengths and limitations
A major strength of the present study is the randomized sample from a large database of patient complaints. However, these formal patient complaints might only be the tip of the iceberg as there may be a large number of patients who never make formal complaints. The Swedish health-care context might be a limitation from an international perspective, and the reader must judge if findings are transferable to their own contexts.
To uphold the rigour and validity of results, we strived to establish reflexivity and credibility during data gathering and analysis. 20 During the analysis, we reflected on meanings and emerging themes. We questioned our understanding of the data and discussed the findings among the researchers so as not to take anything for granted. Researcher triangulation adds to the strength of the analyses and ensuing results. Original data verified themes in the results.
The complaints analysed in this study were related to different health-care sectors. From hospital care sectors, psychiatric healthcare services stood out from the data. This study has however not focused on differences in complaints from various sectors. This might be interesting to explore in future studies. needed.

E TH I C A L CO N S I D ER ATI O N S
Ethical approval was obtained from the Regional Ethical Review Board in Gothenburg (DNo. 951-15) and conforms to the Declaration of Helsinki. All data collected were made anonymous by the PAC, and no names or other personal information of patients, relatives, nurses or other persons in the complaints were obtained.

CO N FLI C T O F I NTE R E S T
No conflicts of interest have been declared.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study are available from the corresponding author upon reasonable request. The data are not publicly available due to privacy or ethical restrictions.