Article Text

Original research
Dimensions of suffering and the need for palliative care: experiences and expectations of patients living with cancer and diabetes and their caregivers in Mexico – a qualitative study
  1. Svetlana V Doubova1,
  2. Afsan Bhadelia2,
  3. Diana Pérez-Moran1,
  4. Ingrid Patricia Martinez-Vega1,
  5. Nancy García-Cervantes3,
  6. Felicia Knaul4,5,6,7,8
  1. 1Epidemiology and Health Services Research Unit, CMN Siglo XXI, Mexican Social Security Institute, Mexico City, Mexico
  2. 2Department of Public Health. College of Health and Human Sciences, Purdue University, West Lafayette, Indiana, USA
  3. 3Family medicine clinic, Mexican Social Security Institute, Mexico City, Mexico
  4. 4Sylvester Comprehensive Cancer Centre, University of Miami, Miami, Florida, USA
  5. 5Institute for Advanced Study of the Americas, University of Miami, Coral Gables, Florida, USA
  6. 6Department of Public Health Sciences, Leonard M. Miller School of Medicine, University of Miami, Miami, Florida, USA
  7. 7Tómatelo a Pecho, Mexico City, CDMX, Mexico
  8. 8Fundación Mexicana para la Salud, Mexico City, CDMX, Mexico
  1. Correspondence to Dr Svetlana V Doubova; svetlana.doubova{at}gmail.com

Abstract

Objectives Over 40 million people in low-income and middle-income countries (LMICs) experience serious health-related suffering (SHS) annually and require palliative care. Patient and caregiver experiences of SHS in LMICs are understudied despite their importance in guiding palliative care provision. Diabetes and cancer are the second-leading and third-leading causes of death in Mexico, causing a significant SHS burden on patients, families and health systems. This study examines SHS and palliative care from the point of view of patients with cancer and diabetes and their caregivers.

Design A qualitative descriptive study based on in-depth telephone interviews was conducted between August 2021 and February 2022. Data were analysed through inductive thematic analysis.

Participants Overall, 20 patients with end-stage cancer, 13 patients with diabetes and 35 family caregivers were interviewed individually.

Setting Participants were recruited from two family medicine clinics and a pain clinic in Mexico City.

Results Seven themes emerged: (1) suffering as a multifaceted phenomenon, (2) diversity in perceptions of suffering, (3) different coping strategies, (4) need and perceived importance of relief from suffering, (5) barriers to accessing services to relieve suffering, (6) demand for the health sector’s active and humane role in addressing suffering and (7) preferences and need for comprehensive care for relief from suffering. The primary coping strategies included family companionship, protective buffering and faith-based support. Participants lacked knowledge of palliative care. They expressed the importance of relief from suffering, viewing it as the health sector’s responsibility and requesting more humane, personalised care and access to medicines and pain clinics.

Conclusions The multifaceted nature of SHS highlights the health system’s responsibility to provide high-quality palliative care. Policies to enhance access to palliative care should integrate it into primary care, redesigning services towards patient and caregiver biopsychosocial and spiritual needs and ensuring access to medicines and competent health personnel.

  • adult palliative care
  • qualitative research
  • adult oncology
  • general diabetes
  • patient-centered care

Data availability statement

Data sharing not applicable as no datasets generated and/or analysed for this study.

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STRENGTHS AND LIMITATIONS OF THIS STUDY

  • This study presents new qualitative data on the significance of serious health-related suffering (SHS) and the experiences of Mexican patients with cancer or diabetes and their caregivers in coping with SHS, their awareness of palliative care, and their expectations of the health system.

  • Participants with diverse ages, schooling and clinical characteristics were included, which allowed for a comprehensive understanding of the studied problem.

  • The study’s trustworthiness was ensured by a ‘thick description’ of the participants, settings and methods; the use of multiple perspectives throughout data collection and the triangulation of the analysis by three researchers.

  • The study followed COREQ consolidated criteria to ensure methodological rigour and transparency.

  • The study findings cannot be generalised to all Mexican patients with cancer or diabetes and their caregivers; however, it provides relevant insights into the participants’ lived experiences with SHS and can be used as a justification for improvements in priority-setting and investments in the Mexican health system aimed towards achieving universal access to palliative care and pain relief.

Introduction

Serious health-related suffering (SHS) stems from life-threatening illnesses that compromise physical, social, spiritual and emotional functioning and require palliative care.1 The Lancet Commission on Global Access to Palliative Care and Pain Relief revealed that over 61 million people worldwide experience SHS annually and need palliative care, yet over 80% lack access and the majority live in low-income and middle-income countries.1 Lack of access to palliative care is a barrier to achieving universal health coverage and reducing health inequalities in most countries.1

Lived experiences of SHS are configured by historical, social and cultural determinants, as well as intersecting identities—such as ethnicity, religious identity and socioeconomic status—which in turn shape beliefs, values and customs that influence individual perceptions of SHS and coping strategies.2 3 For instance, in Asian cultures, the ability to tolerate suffering, known as stoicism, is recognised as a virtue, while a lack of pain tolerance is considered a sign of weakness, resulting in a reluctance to complain of pain.4 5 In comparison, expressiveness of pain is more prevalent in Hispanic, Italian, Egyptian and African-American populations.6 In addition, some religions, including Catholicism, which is widely practised in Latin America, may espouse a belief that with pain and suffering comes spiritual growth, using prayer as a form of healing and a salve.7

SHS has been primarily measured by the number of people or days of suffering, but the meaning, experiences of SHS and relief from SHS have not been extensively explored despite the importance of this information for palliative care policy-making.1

Palliative care aims to minimise SHS and improve the quality of life of patients and families facing life-threatening illnesses by preventing and relieving their suffering.8 Palliative care in Mexico faces challenges. First, healthcare delivery is fragmented by public and private providers, and insurance coverage is dependent on employment. Formal sector employees and their families (around 68.5 million people) are covered by the Mexican Institute of Social Security (IMSS), and bureaucrats and their families (13.5 million) by the Institute for Social Security and Services for State Workers. From 2004 to 2018, people without social security (~54 million) were covered by Seguro Popular—public health insurance.9 Since 2019, this population has lacked explicit health insurance and access to healthcare as the newly elected government terminated the Seguro Popular.10 Second, in 2020, Mexico had 0.92 palliative services/teams per million inhabitants.11 This rate is three times less than the Latin American average of 2.6 palliative care services/teams per million. Third, Mexico has a severe shortage and unequal distribution of opioid pain relief medication. The stock covers less than one-third of the need, and wealthier states have 10 times more access to opioid medications than poorer states.1 12 Yet opioid pain medication is essential to SHS relief, particularly in patients with moderate to severe pain, not responding to other analgesics.

Research on how SHS affects patients and caregivers is critical to improving Mexico’s palliative care services. In Mexico, most research on this topic has focused on the beliefs, attitudes and decisions of health professionals, who lack training and have challenges talking with terminally ill patients about their prognosis.13 Patient and caregiver perspectives are absent from academic studies despite extensive social sciences research documenting how social values and cultural beliefs shape individuals’ experiences with suffering.

Currently, in Mexico, diabetes and cancer are the second-leading and third-leading causes of death, causing an enormous SHS burden on patients, their families and health systems.14 15 Therefore, the objective of this study was to explore the meaning and experiences of SHS and relief from SHS among patients with cancer or diabetes and their caregivers.

Methods

Study design

We conducted a qualitative descriptive study based on in-depth interviews and in alignment with the protocol and interview guide developed by Bhadelia et al (2023).16

Participants and setting

The study included three groups of participants older than 18 years: (1) patients with a diagnosis of advanced-stage cancer (ICD-10: C00–C97); (2) patients with diabetes (ICD-10: E10–E11) living with SHS (eg, severe pain, severe diabetes complication with disability in daily living activities) and (3) primary family caregivers.

Participants were recruited from three IMSS facilities in Mexico City: two family medicine clinics (FMCs) and a pain clinic. One FMC comprised a large clinic with 62 family physicians covering about 153 000 people and a mid-size clinic with 40 family physicians covering 100 000 people. The mid-size PCC was in a middle-income neighbourhood, while the large PCC and a pain clinic were in low-income areas. At FMCs, healthcare is provided by family physicians working under the same clinical standards (eg, evidence-based cancer and diabetes care guidelines) together with nurses, medical assistants and social workers. In addition, most mid-size and large-size FMCs have a psychologist, a nutritionist, a clinical laboratory and a pharmacy. The pain clinic was staffed by three physicians specialising in palliative care, two nurses, a thanatologist, a nutritionist, a psychologist, a social worker, two medical assistants and a group of Palliative Medicine Residency Programme residents. IMSS is a prepaid social health insurance system that delivers healthcare and medicines at no cost at the point of service.

We used cancer and diabetes patient registries to identify those with potential SHS. We applied purposive sampling to establish a sample with diverse sociodemographic characteristics (by gender, age and level of schooling) and varied caregiver–patient relationships. Patients who could carry on normal activities or those severely disabled and too ill to participate were excluded (Karnofsky performance status score ≥80 or ≤30, as recorded in patient registries or described to us by patients or caregivers).

Procedures

A licensed psychologist (IPM-V) with 14 years of clinical and research experience identified patients with potential SHS from cancer and diabetes registries, performed invitations of the study participants, acquired their informed consent and conducted in-depth interviews.

The invitations to the study were performed through phone calls. During the invitation, potential participants received information about the study objectives, nature, duration and relevant ethical considerations (eg, voluntary participation, possible risks and benefits, data custody, security, and confidentiality protections).

The study was conducted during the COVID-19 pandemic between August 2021 and February 2022. Considering that people with advanced cancer and diabetes are at increased risk for COVID-19 complications, as well as their caregivers should avoid COVID-19 contagion and its transmission to the patients, participants were offered three interview options: (1) in-person interview, (2) interview by video call or (3) by phone (audio-only).

The decision to offer phone interviews was also based on the evidence regarding feasibility, equivalence in generating the same amount of data richness, and advantages of conducting in-depth telephone interviews compared with in-person interviews (eg, flexibility, participants’ comfort),17–21 including in vulnerable groups of patients, such as persons with mental disorders and multimorbidity.17 In addition, evidence supports that psychological interventions through phone (audio-only) and video calls can “reduce symptoms related to mental health conditions and have been found to be non-inferior to in-person care”.21–23

In this study, most participants chose a telephone interview. Only one patient and two caregivers preferred a face-to-face interview; additionally, one patient with diabetes chose the Zoom call but did not want to turn on the video camera, having only the audio connection. The main reasons for not choosing in-person interviews were the fear of the COVID-19 contagion and not feeling well enough to go to the suggested health facilities; in the case of caregivers, in addition, it was the lack of time and transportation expenses.

All interviews followed a semistructured guide of open-ended questions (online supplemental material panel 1).16 The duration of the interviews varied between 45 min and 1 hour and a half, with an average time of 60 min. The distress management protocol was used to identify and manage the participants’ emotional distress (online supplemental material panel 2). The interviews were audio recorded and transcribed. Sociodemographic data were gathered.

Sample description

Seventy-eight potential participants were identified and contacted. Four patients and six caregivers refused to participate; the former was due to fatigue, weakness or pain, and the latter was due to lack of time. The study included 68 participants: 20 patients with cancer, 13 patients with diabetes, 20 family caregivers of patients with cancer, and 15 caregivers of patients with diabetes. We interviewed ~11 patients and caregivers from each clinic. In most interviews, participating patients and caregivers were unrelated. Seven patients agreed to participate together with their caregivers but were interviewed separately. Also, we interviewed eight caregivers of recently deceased patients. About half of the patients and 75% of the caregivers were women. The median age was 56 years for patients (range: 26–73) and 50 years for caregivers (range: 27–75). Patients were evenly distributed across different levels of education. Among the caregivers, there were fewer with low levels of schooling (four with primary school and nine with secondary school). Moreover, 45% of caregivers were spouses, and 40% daughters or sons of the patients, the rest included four siblings and a patient mother (online supplemental tables 1 and 2).

The number of interviewed participants was defined by the principle of thematic saturation,24 considering a point during data analysis at which five incoming interviews do not produce new categories or themes relative to the study objectives, with a base size of seven initial interviews for each type of participant.25

Data analysis

Data were analysed through six stages of inductive thematic analysis26: (1) familiarisation with the data; (2) creation of initial codes through an inductive process; (3) search for subcategories, categories and themes in the interview responses and grouping of minor codes under each of these; (4) review of themes; (5) definition and naming of themes and (6) preparation of the manuscript. Illustrative interview excerpts were labelled using participant identifiers (patient: p; caregiver: c), disease type (cancer: Ca; diabetes: DM), gender, age and the caregiver’s relationship to the patient.

Three researchers with master of science and doctor of science degrees and experience in qualitative research (SVD, DP-M and IPM-V) evaluated the transcripts independently. Individual decisions on emerging themes and response coding were cross-checked for consistency. Discrepancies were discussed to reach a collective agreement on their classification. The analysis focused on identifying common and specific themes for each group of participants and generating a thematic map.

Activities to guarantee the study’s trustworthiness

We ensured credibility (ie, data collected is accurate/representative of the phenomenon under study) by using multiple perspectives throughout data collection and analysis (eg, data triangulation by three researchers). The transferability (ie, the extent to which the findings are transferable to similar contexts or individuals) was ensured through thick description by providing adequate details on the site, participants and methods used to collect data during the study. The dependability was ensured by an in-depth description of the study methodology to make the study replicable. Finally, we ensured that the data and findings were not due to participant or researcher bias (ie, confirmability) through data analysis triangulation by three researchers.

Patient and public involvement

Patients and/or the public were not involved in the design, conduct, reporting or dissemination plans of this research.

Results

We identified seven main themes: A. Suffering as a multifaceted phenomenon; B. Diversity in perceptions of suffering; C. Different coping strategies; D. Need and perceived importance of relief from suffering; E. Barriers to accessing services to relieve suffering; F. Demand for the health sector’s active and humane role in addressing suffering and G. Preferences and needs for comprehensive care for relief from suffering (figure 1, tables 1–3 and online supplemental tables 3–5).

Table 1

Suffering as a multifaceted phenomenon

Table 2

Diversity in perceptions of suffering and different coping strategies

Table 3

Need, importance and barriers to accessing services to relieve suffering

Theme A: suffering as a multifaceted phenomenon

The first word that came to mind when participants were prompted with the concept of ‘serious-health related suffering’ was ‘pain’, followed by ‘distress’, ‘anxiety’, ‘desperation’, ‘disability’ and the idea of not being able to care for oneself. When asked what SHS meant to them, patients and caregivers agreed that suffering encompasses multiple aspects; however, patients and caregivers differed in which aspects they highlighted.

SHS for patients

For most patients, suffering was physical and psychological (or ‘of the body and soul’). Pain was the predominant facet of physical suffering. Patients also described their dependence on relatives for care and to carry out basic daily activities as part of physical suffering because the ‘body no longer works’. They mourned ‘not being able to fend for themselves’. Emotional suffering was the second facet, described as emotional pain, distress, anxiety, desperation, sadness and depression. Both patients with cancer and diabetes highlighted ‘the uncertainty of what will happen tomorrow’ and ‘living the unknown’ as emotional suffering. Empathetic suffering in response to seeing their family’s suffering was the third facet. Patients expressed cognitive and spiritual suffering as feeling helpless to the disease and wanting to die to relieve their own suffering and that of their families (table 1, themes A, patients’ quotations (pQ) 1–3). Economic suffering due to the inability to work and unexpected healthcare expenses, such as medicines was the sixth facet experienced by more than half of patients (table 1, theme A, pQ4). The seventh facet was the disruption of social life—being too ill and in pain to go out with friends, opting for self-isolation and not talking to others about their illness. Some patients expressed, ‘it even bothers me they see me’, as they did not want friends to see their physical deterioration (table 1, theme A, pQ5–6), and mentioned that suffering worsened with disease progression (table 1, theme A, pQ7).

SHS for caregivers

Most caregivers experienced suffering from seeing their loved ones suffer and being unable to help (table 1, Theme A, caregivers’ quotations (cQ) 1–2). They experienced anticipatory grief (table 1, theme A, cQ3) and identified fatigue, physical and emotional exhaustion as critical components of their suffering (table 1, theme A, cQ4–5). Being a caregiver had a negative impact on their work, social life and the family’s economic status (table 1, theme A, cQ6–7).

Suffering because of unsatisfactory interactions with health providers

Half of patients and caregivers reported unsatisfactory interactions with healthcare providers as a cause of suffering. Lack of information about their illness and care and lack of empathy were sources of suffering (table 1, theme A, pcQ1–2).

Theme B: diversity in perceptions of suffering

Participants were asked about their perceptions of suffering for different groups, such as men and women, young and older adults, and low-income and high-income people. Half of participants referred to pain and suffering as individual experiences (table 2, theme B, pcQ1), another half noted that suffering was different between young and old, men and women, and rich and poor. Young people were thought to ‘have the strength of youth’ and could ‘resist disease and suffering more’ and they ‘do not perceive the seriousness of the disease’ and ‘perceive the disease as something that should not be happening’. In comparison, older adults were more likely to see suffering as inevitable given that ‘they [had] already lived’ (table 2, theme B, pcQ2).

Gender differences were partly attributed to ‘machismo’—the cultural norm that men are expected to be ‘colder’, ‘hide suffering’, and that ‘if a man cries, this is a weakness’. In contrast, women were viewed as ‘more emotional in the way they express suffering’ (table 2, theme B, pcQ3).

Patients and caregivers believed there was inequitable suffering based on socioeconomic differences. Patients with more resources could access private doctors and professional caregivers, acquire necessary accessories for personal care and food to comply with diet among others. In contrast, those with limited resources faced hardship (table 2, theme B, pcQ4–6). However, some participants considered that suffering was ‘the same pain for everyone’ (table 2, theme B, pcQ7).

Several patients and caregivers believed that perceptions of suffering had changed during the COVID-19 pandemic: ‘the pandemic made us see that at some point we can all suffer’; ‘we have become apathetic, seeing suffering and death as normal’; and ‘the pandemic has helped to humanise us, lead us to become aware, to value, to support people’ and to ‘be more empathetic’ (table 2, theme B, pcQ8–9).

Theme C: different coping strategies

Most patients and caregivers stated that they relied on family support: ‘my relatives have supported me in everything I have needed’; ‘I depend on my family for everything’; ‘my family cares’; ‘[my family] suffers together with me’ (table 2, theme C, pcQ1).

Many caregivers indicated leaning on other relatives and sharing their suffering with them: ‘with the disease, the family begins to get together’; ‘I share it or talk about it… to get it off my chest and see the best way to help’; ‘we share the pain’; ‘we support each other’ (table 2, theme C, pcQ2).

Some patients and caregivers chose to handle their suffering alone. This behaviour is known as ‘protective buffering’ when patients or caregivers—hiding their suffering from their family to protect them. Two patients preferred to suffer alone to avoid criticism or blame (table 2, theme C, pcQ3–4). Several caregivers kept their suffering hidden: ‘not showing relatives the weakness that you have, because if you fall, your family could also fall’ (table 2, theme C, pcQ5).

Faith-based coping mechanisms and use of traditional remedies were reported. Catholic patients and caregivers mentioned that suffering had ‘brought them closer to God,’ perceiving faith in God as a refuge and prayer as ‘a spiritual quality that helps nourish the soul’ and that can be ‘stronger than medicine’ (table 2, theme C, pcQ6-7). Moreover, participants mentioned that the Catholic Church prohibits euthanasia; a patient and a caregiver expressed they were also against it, while one caregiver favoured it (table 2, theme C, pcQ8).

Several patients and caregivers commented on traditional remedies, such as purifications by healers and shamans, holy water and herbs for pain relief. Some described trying them, while others thought that their use was part of ‘the Mexican culture of the quick remedy’ and that many people used such remedies without being properly informed (table 2, theme C, pcQ9–11).

Theme D: need and perceived importance of relief from suffering

All participants agreed on the importance of alleviating suffering to (1) reduce pain, (2) improve their psychological and social well-being, (3) address their families’ suffering and (4) have guidance on coping strategies (table 3, theme D, pQ1–4 and cQ1-2). Most patients—but less than half of caregivers—rated alleviation of suffering as more important than life-prolonging treatments. Seventeen caregivers and nine patients rated both treatments as equally important, and two caregivers considered that treatment prolonging life was more important (table 3, theme D, pcQ1–3).

Theme E: barriers to accessing services to relieve suffering

Most participants were unfamiliar with palliative care, understanding it as complementary medicine. Pain clinic patients and caregivers believed palliative care was for pain relief. Most interviewees noted that they had not received palliative care and considered that lacking knowledge and information were significant barriers to accessing such services (table 3, theme E, pcQ1–3). In addition, lack of referral to palliative care services and other services delays were reported (table 3, theme E, pcQ4–5). Furthermore, most interviewees stated that the disruption of health services during the COVID-19 pandemic and the fear of contagion were barriers to accessing palliative care (table 3, Theme E, pcQ6–7 and pcQ8–9).

Theme F: demand for the health sector’s active and humane role in addressing suffering

SHS relief was seen as a duty of IMSS and the health sector (table 4, theme F, pcQ1–2). More than half of the participants asserted that IMSS should provide more humane care and shared unsatisfactory experiences (table 4, theme F, pcQ1–4). They reported shortages of pain relief medications, which they had to buy at private pharmacies, and demanded the health sector accountability for ensuring access to medicines (table 4, theme F, pcQ5–7).

Table 4

Demand for the health sector’s active and humane role in addressing suffering and need for comprehensive care for relief from suffering

Theme G: preferences and needs for comprehensive care for relief from suffering

Participants—especially patients with low education—had difficulty expressing their preferences and needs for comprehensive care to alleviate suffering. Some patients and caregivers agreed that health professionals should work together to improve patients’ well-being (table 4, theme G, pcQ1). They also called for pain clinics in all primary care facilities and hospitals (table 4, theme G, pcQ2), and personalised home care (table 4, theme G, pcQ3). In addition, caregivers expressed their need for guidance in their roles (table 4, theme G, cQ4) and for psychological support (table 4, theme G, cQ5).

Discussion

This study provides evidence on SHS’s complexity and the need for comprehensive palliative care for patients and caregivers. It also offers recommendations on responding to the SHS burden.

Experience of suffering and coping strategies

Consistent with the integrated model of suffering that recognises its multidimensional and dynamic nature,27 study participants described physical, emotional, empathetic, cognitive, spiritual, economic and social affectations and unsatisfactory interactions with health providers as elements of SHS.

The results align with the concept of reciprocal suffering28 and the theory of social suffering, which indicates that disease-related ‘pain and suffering are not limited to the individual who suffers it but extend to the family and their social network’.29 Caring for a sick family member can lead to depression, anxiety, absenteeism, disruption and loss of employment and interferes with social life.30 31 Counting on family companionship was the primary coping strategy for alleviating suffering. This strategy is consistent with the concept of familism in Latino cultures, characterised by strong family identification, interconnection, mutual support.32 Familism prompts individuals to fulfil the caregiver role.33 Therefore, family-centred interventions to relieve SHS might be pertinent in Mexico.

Participants’ coping strategies give insight into the role of cultural beliefs in alleviating suffering. Faith-based and spiritual support approaches can promote a sense of meaning and purpose, an acceptance of death34 (and rejection of euthanasia),35 an ability to maintain satisfactory social roles,36 and a perception of better health.37 Trust in traditional remedies is based on beliefs in mystical causes of diseases not treatable by conventional medicine.38 Protective buffering–concealing illness-related concerns from others—is another strategy influenced by cultural beliefs; yet, this strategy can cause distress and harm to relationships and decrease patient and caregiver self-efficacy.39

Gender, age and socioeconomic inequities influence suffering experiences. Commonly accepted gender norms of machismo and marianismo in Latin America define men as strong, fearless breadwinners who do not experience pain and women as submissive, family-oriented and sensitive. These concepts influence patient and caregiver expressions of pain and suffering40 and contextualise gender-based differences in Mexico. Similar to our findings, older patients with cancer receiving palliative care in high-income countries have reported better emotional health and less pain41 42 and feel more prepared for death than young people.43 Furthermore, inequities in suffering relief based on socioeconomic status is a widespread challenge reported in China, Sri Lanka, India, Vietnam, Myanmar, Canada and Denmark.44–46

Health system responsiveness

Access to palliative care is essential for SHS relief.47 Consistent with previous evidence on the relevance of palliative care,8 47 patients and caregivers placed high importance on relief from SHS in terms of symptoms management and overall improvement of their physical, psychological and social well-being.48 However, most participants were not knowledgeable about palliative care. Lack of awareness of palliative care is a widespread barrier to seeking and accessing services, also found in high-income countries.49 In one study, between 17% and 53.2% of respondents in the USA, Sweden, Italy, Canada and Ireland had not heard of palliative care and between 49% and 73% in the USA, Korea and Scotland could not define it.49 The level of awareness of palliative care in low-income and middle-income countries is unknown. Education and awareness programmes are necessary to improving public knowledge of palliative care. Furthermore, improving access requires addressing opioid supply shortages and barriers to prescribing medicines to alleviate suffering.1

In Mexico, the COVID-19 pandemic disrupted the delivery of multiple health services due to the redistribution of resources towards COVID-19 patient care, and efforts to reduce overcrowded health facilities.50 This study corroborated the disruption and need to maintain and recover palliative care services amid ongoing surges of COVID-19 cases.

The opinions of patients and caregivers serve to guide palliative care priority-setting. Mexican patients considered SHS relief to be more important than treatment to prolong life, while caregivers felt that both interventions were equally important. Differences in treatment preferences between patients and caregivers have been previously reported.51 A study from Singapore focused on patients with advanced cancer found discordance in 60% of patient–caregiver dyads; “caregivers wanted a balance between prolonging life and symptom control, while patients preferred life-prolonging treatment”.51 This discrepancy affects the burden on caregivers’ time and health.51 Health professionals should encourage communication and ensure that caregivers better understand patient preferences on treatment to alleviate SHS.

Participants favoured continuous, comprehensive, family-centred care to alleviate SHS. They explicitly requested improved collaboration between health professionals to promote patients’ well-being, the availability of pain clinics in all health facilities, provision of home-based personalised care and psychological support. These preferences coincide with the WHO recommendation of integrating palliative services into primary care52 to ensure universal access while respecting patient preferences. For primary care workers, providing SHS care requires basic training in palliative care and the availability of effective and low-cost drugs.52 Official standards should be established that would enable primary care physicians to easily transfer patients to a higher level of care to alleviate refractory suffering.52

Unsatisfactory interaction between health personnel, patients and caregivers is an additional facet of suffering. Patients with cancer and diabetes have identified insufficient knowledge and a lack of training among health professionals on alleviating SHS.53 In addition, a recent systematic review54 of health professionals during the COVID-19 pandemic identified increases in emotional exhaustion, depersonalisation and compassion fatigue. Compassion and empathy are necessary for understanding and responding to suffering. To this aim, health organisations must foster a culture of compassion to provide safe, high-quality, user-centred care.

Most participants in this study suggested that the health sector and IMSS were responsible for improving alleviation of SHS, with more humanity and access. This finding is consistent with the resolution of the World Health Assembly,55 which indicates that the integration and provision of palliative care, including people-centred care and access to medicines, is an ethical responsibility of public health systems.

Based on our findings, the strategies for strengthening the Mexican health system to address the SHS burden should (1) prioritise the alleviation of SHS alongside life-prolonging intervention; (2) promote policies for the advancement of palliative care research and practice; (3) integrate palliative care into primary care to guarantee access to services that alleviate SHS; (4) secure the availability of effective and low-cost drugs for relief from SHS; (5) improve health system preparedness to avoid or minimise service disruptions during public health emergencies as much as possible, (6) ensure personalised care focused on the biopsychosocial and spiritual needs and preferences of patients and their families; (7) provide patients with evidence-based information on complementary and complementary medicine; (8) train healthcare professionals on the provision of comfort and compassionate care and effective communication and information sharing with patients and caregivers: (9) facilitate communication between patients and informal caregivers; (10) develop effective protocols to address health workforce burn-out, including in the context of public health emergencies; (10) explore further the relationship between SHS and the concept of social suffering; (11) investigate the implications of caring for patients with SHS from a health system perspectiv and (12) focus research on people experiencing SHS who do not have social security and live across different Mexican states. These strategies can be also relevant for other Latin American countries in similar situations.

Strengths and limitations

To ensure the methodological rigour and transparency of our study we followed consolidated criteria for reporting qualitative research.56 To ensure credibility, we performed qualitative data analysis through investigator triangulation (SVD, DP-M and IPM-V). In addition, the study included participants with diverse age, schooling and clinical characteristics, which allowed for a comprehensive understanding of this problem. However, our study was limited to patients affiliated with IMSS and receiving care in three healthcare facilities in Mexico City; as a result, our findings are probably not entirely transferable to those consulting other healthcare providers in Mexico or in other countries. According to Lincoln et al,57 “the degree of transferability is a direct function of the similarity between two or more contexts”. A reasonable expectation of this study is that their results can be transferable to SHS patients and their family caregivers who use IMSS health facilities, as most primary and pain clinics at IMSS have similar infrastructure and are ruled by the same clinical standards. In addition, it can also be transferred to other similar settings in low-income and middle-income countries; in this case, as Lincoln et al pointed “the judgement on transferability should be performed by readers, as they are more familiar with their situation and can infer if the transfer is reasonable and if the results of the research would be similar to their context”.57

Conclusion

The multifaceted nature of SHS challenges the health system to provide holistic, high-quality palliative care. Policies directed towards expanding access to palliative care should consider integration into primary care, ensuring personnel are trained and medicines are safely accessible and redesigning services to satisfy the needs of both patient and caregiver.

Data availability statement

Data sharing not applicable as no datasets generated and/or analysed for this study.

Ethics statements

Patient consent for publication

Ethics approval

This study involves human participants and was approved by the Research and Ethics Committees of the IMSS (registration number R-2020-785-037). Participants gave informed consent to participate in the study before taking part.

Acknowledgments

The authors would like to thank the Chief of the IMSS Pain and Palliative Care Clinic of the Oncology Hospital of the Siglo XXI. Dr José de Jesús Salvador Villafaña Tello, Dr Lidia Barrios of the IMSS Family Medicine clinic Number 15 and Dr Gloria Mara Pimentel Redondo of the IMSS Family Medicine clinic Number 26 for their support during the study fieldwork. The authors also thank the staff of the Health Services Research Unit CMN Siglo XXI and the students of the Gerontology and Nursing department of the Universidad Autónoma del Estado de México (UAEM), who completed social service in the Epidemiological and Health Services Research Unit CMN Siglo XXI during 2021–2022, for their support in interviews transcript. Finally, the authors thank The University of Miami Institute for Advanced Study of the Americas for supporting this study.

References

Supplementary materials

  • Supplementary Data

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Footnotes

  • Contributors The concept of this study was conceived by FK and AB as part of broader research on understanding the value of alleviating SHS and as part of follow-up research to the Lancet Commission on Global Access to Palliative Care and Pain Relief. The methodology and protocol with related instruments for the broader study were primarily designed by AB and adapted for Mexico by SVD, a principal investigator for the country-specific research presented in this manuscript. SVD prepared the Mexican version of the study protocol and registered it with IMSS IRB. SVD also led the supervision of the fieldwork, conducted data analysis and wrote the first draft of the paper with edits over various iterations by AB and FK. IPM-V conducted in-depth interviews. DP-M and IPM-V participated in data analysis and interpretation. NG-C prepared a list of the study participants, participated in the field work, critically reviewed the manuscript. SVD is responsible for the overall content as guarantor, accepting full responsibility for the present work, and controlling the decision to publish. All authors reviewed the final version of the paper before submission.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests During the 36 months prior to publication, AB was a recipient of the Fulbright U.S. Scholar Teaching and Research Award from the Bureau of Educational and Cultural Affairs, U.S. Department of State for work inclusive of palliative care outside the submitted work; AB reports consulting fees through a research grant from the Medical Research Council to the University of Edinburgh and from the University of Miami for work related to palliative care outside the submitted work.

    SVD reports consulting fees from the University of Miami for work related to palliative care outside the submitted work.

    FK had research grant funding from Medical Research Council to the University of Miami and Funsalud (Mexican Health Foundation) for work related to palliative care; a research grant from the US Cancer Pain Relief funding to the University of Miami for work related to palliative care; research grant funding to Tómatelo a Pecho, AC outside of the scope of current work from Merck Sharp & Dohme; research grant funding to the University of Miami outside of the scope of current work from Merck KGaA/EMD Serono; research grant funding to Tómatelo a Pecho, AC outside of the scope of current work from Avon Cosmetics, S. de R. L. de C. V. and personal fees from Merck KGaA/EMD Serono. In addition, FK has been a Member of the Board of Directors of the International Association for Hospice and Palliative Care since 2020 (not compensated). No other competing interests were declared.

  • Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.