Perceptions, knowledge and attitudes towards the concept and approach of palliative care amongst caregivers: a cross-sectional survey in Karachi, Pakistan

The World Health Organization (WHO) defines palliative care (PC) as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” [1]. Furthermore, this approach extends to include the family members not just during the life, but also after the death of the patient. The PC approach, given its holistic nature, is multi-disciplinary and is based on a team that includes physicians, nurses, social workers and many other allied health care workers. In addition, family members often take on an increasingly integral role as caregivers as disease progresses.

For purposes of clarity, the caregiver/s, are defined as a person/s who gives help and protection to someone such as a child, an old person, or someone who is sick [2]. The primary caregiver is usually the family member who spends the most time with the patient and is involved in the day to day care of the patient. However, there may be other paid caregivers who would also be in communication with physicians and nurses involved in patient care. In the context of PC in Pakistan - as in the rest of the world - this would be any individual who takes care of the patient, such as feeding, dressing or cleaning and making relevant day to day decisions. This person may also be involved in discussing patient condition or disease progress with the medical team or distant family members. In the Pakistani socio-cultural system, this is usually one or more close family member/s such as spouse, children, and/or siblings. However, occasionally, this individual may be a trained attendant, nurse or nursing assistant. The team addresses and prioritises the patient’s needs pertaining to physical, emotional, social, and spiritual dimensions of PC on a continuum while coordinating this care with all concerned [3].

By 2060, 83% of deaths worldwide due to health-related suffering will occur in low-income and middle-income countries which constitute about 47% of the world’s population [4]. Cancer is the second leading cause of deaths globally, 70% of which occur in low and middle income countries like Pakistan [4]. An ongoing study that is monitoring the development of palliative care services globally with the aim to categorize countries to levels of palliative care development, placed Pakistan in category 3a (Isolated palliative care provision) in 2017 [5]. It also notes that 47.5% of the world’s population belongs to countries that fall within this category [5]. In Pakistan, there are only a handful of medical institutes that offer palliative care [6]. Given these circumstances, there is a great need to develop and integrate palliative care into health systems at a public health level.

Among several challenges to developing a public health approach, one is the paucity of public awareness of palliative care, as demonstrated by numerous international surveys [7‐10]. Moreover, the understanding of the situation is complicated by limited research in this relatively new field in Pakistan [6, 11, 12]. Lack of comprehension of the concept and scope of PC and misconceptions about it are a barrier to the uptake and meaningful utilisation of this comprehensive approach by patients and families [5, 11‐13]. Misperceptions are common in the public and amongst caregivers and can adversely impact the uptake of this beneficial service even when it is available [10]. This compounds the stress and burden of all caregivers looking after terminally ill patients. To ensure meaningful and successful uptake, potential caregivers, whether family members or professionals, need to have knowledge and understanding of the benefits of this approach in the care of their patients [14‐18]. The objectives of this study, therefore, were to determine knowledge, in terms of perceptions and attitudes of caregivers, about the concept and principles of palliative care. The findings will help to inform interventions to enhance knowledge and address misperceptions, as palliative care becomes more widely available in Pakistan.

The sample size estimate was based on knowledge of PC and anticipated as 50% with 5% level of significance, 6.5% precision and 10% incompleteness or refusal to participate. The study participants were recruited from the in-patient cancer, neurology, pulmonary and cardiac wards, outpatient consultant clinics, and patients’ homes during home visits. The inclusion criteria were any person (female or male) over the age of 18 years who was taking care of a patient suffering from a terminal illness, was aware of the diagnosis and the prognosis, who conformed to the operational definition of caregiver, and who gave informed consent. The three exclusion criteria were those under 18 years of age, those who refused consent, and/or those who did not conform to the operational definition of primary caregivers. A questionnaire was developed in both Urdu and English which was cross validated and piloted on a sample drawn from the same study population, meeting the same inclusion criteria, before being used for data collection.

To ensure face and content validity, the team providing palliative care reviewed papers describing similar surveys [19, 20] assessing knowledge, believes and attitudes about PC. This was followed by a further review by the palliative care team to ensure that the questions covered aspects of palliative care comprehensively. The questions were further screened to make sure that they were relevant to the Pakistani context and setting. Some of the questions were generic in terms of the meaning and principles of PC whereas others were regarding attitudes towards core concepts of PC. A section covering demographic and social aspects such as, gender, educational qualifications, and relationship with the patient was included. The questionnaire was then reviewed by the statistician. The questionnaire was first developed in English and then translated into Urdu and back-translated into English by different people for cross validation. The questionnaire was piloted on the same population before data collection. A few modifications were made after it was piloted. All study participants were approached by the nursing staff or the home-based family physician in the selected study sites. All those who met the inclusion criteria were asked to complete the questionnaire till the sample size was reached. All participants were able to read and write in at least one of the two languages. To ensure confidentiality, the names of the participants were replaced by numbers throughout analysis. The original hard copy questionnaires were stored in a locked filing cabinet with only the principle investigator having access to them.

A total of (n = 250) primary caregivers completed the self-administered questionnaire. More than 60% of them were 40 years old or less and the majority were males. More than 85% of them were at least graduates. More than 50% of the caregivers were close family members, such as a spouse or a child. About 45% (95% C.I.: 39.03, 51.37%) of the study respondents had a reasonable amount of knowledge about palliative care. The caregivers who were found to have significantly better comprehension about palliative care were young individuals aged < 40 years, those with an education level of up to grade 10, and/or children of the patient. (Table 1) More than half of them agreed that the person receiving palliative care should be encouraged to carry out normal routine activities or to fulfill their wishes. Approximately 70% of the respondents agreed with the statement that the person suffering from cancer should be informed about the diagnosis and disease progression. (Table 2) A little less than half 113 (45.2%) agreed with the statement describing palliative care in the questionnaire, while 103 (41.2%) did not know and 34 (13.6%) disagreed with the statement. The majority agreed with the statement about the meaning of palliative care.

Differences in the mean scores of knowledge of different aspects of palliative care by age, gender, level of education and relationship with the patient were observed. (Table 3).

The concept of PC as a formal approach is relatively new to Pakistan, within the community as well as amongst its physicians. Just a handful of studies have been done on this concept in Pakistan [6, 11, 12]. Aga Khan University Hospital set up a formal palliative care program in 2012 consisting of a section of palliative medicine in the department of oncology, with dedicated clinics and home-based care services. Simultaneously, an online course and workshops on PC were developed for health care professionals [21]. However, awareness in the community at large appears to be limited as it remains a new concept in Pakistan. All the respondents in this study were caring for patients with terminal illnesses and were, therefore, able to assess the needs of these patients in terms of symptom relief. They were also aware of the care and treatment being provided for the patient whether in hospital, at home or in the outpatient clinics. The vast majority, 223 (89%) out of the total 250 study participants, were young adults up to 50 years old, whereas the remaining few were 50 to 60 years old. This is in keeping with the fact that caregivers are more likely to be younger and able-bodied, as caring for palliative care patients can be increasingly demanding as the patient’s condition progresses. More than half of the caregivers were male which is in contrast with international studies that have repeatedly found that the majority of caregivers are female [22].

This can be explained by the patriarchal structure of Pakistani culture including its households [23]. The survey was done on patients accessing a relatively expensive private pay hospital in Karachi, which has a literacy rate of over 75% [24]. However, the fact that all of the respondents were literate, in a country where the adult literacy rate (over 15 years) was 59% in 2017 and the majority of the study participants were at least graduates, may have had a bearing on the levels of awareness and knowledge about PC [25]. A study in the US found a similar association [18].

In this sample, half the caregivers were close relatives of the patient, such as wife, husband, sister or brother in almost equal numbers, while the remaining were nurses, nursing attendants or distant relatives. This matches findings in international studies where close family members take on the role of caregiver when a spouse, parent, child or relative falls ill [26, 27] (Table 1).

Just over half (54.8%) did not know or did not comprehensively understand the concept of PC while less than half of the caregivers had enhanced understanding of the basic concept of PC. It is noteworthy that these numbers are comparable to a large study done in the US in 2019, because the same percentage of caregivers (55%), had never heard of PC, whereas 19.2% knew what PC was and believed they would be able to explain it to someone else [18, 28]. A study done on the general population in the US, found misperceptions and negative attitudes towards palliative care even though palliative care is more widely available there [29].

The PC approach works in tandem with the ‘patient centered approach’ that is based on the principle that the patient should be given every opportunity to be involved in all aspects of care starting from complete information about the terminal illness to decision making about treatment options, unless the patient forgoes this right or defers it to a family member [30‐32]. These principles underpin the ethical and professional obligations of this approach [33]. In keeping with this, the majority of the respondents believed that the patient should be informed about the diagnosis of a terminal illness, which matches the findings reported in an earlier paper done in the community health center of the same hospital and international studies done in hospitals and the community [30, 32, 33]. This finding should give more confidence to physicians to ask the patient if s/he wants to know the diagnosis and discuss management options. This is especially relevant when relatives insist that it should not be disclosed or discussed with the patient, fulfilling the ethical principle of patient autonomy [30‐32]. Similarly, the majority of the respondents believed that patients should be encouraged to carry out routine activities and be facilitated to fulfill their wishes. This is in accordance with the PC approach wherein patients are enabled to live normal lives and every effort is made to fulfill their wishes to prevent helplessness and suffering [1, 19] (Table 2).

In contrast to a focused medical approach, the goals of palliative care, therefore, are to ease the suffering of the patient and the family across all its domains, while remembering to reassess at every step to ensure that futile treatments and false hope are avoided [1]. While PC can be provided in hospital, it can also be provided at home, in clinics and hospice (a place where people with terminal illnesses can pass their last months of life) [34]. Younger caregivers were aware of this, probably because this group was more likely to have greater exposure to multiple sources of information, even if they had been less likely to have had any personal experience of caring for a relative suffering from a terminal illness [19, 29]. Similarly, the oldest age group also had an enhanced understanding and knowledge of the concept and principles of PC.

The obvious explanation is their greater experience and therefore first-hand learning regarding this aspect of life, because by this stage in their lives they would have been more likely to have observed and/or been involved in the care of a family member or a friend suffering from a terminal illness. All age groups believed that an essential aspect of PC was fulfilling the needs of patients suffering from a terminal illness (Table 3).

Participants educated up to grade 10 at the time of data collection were younger and had greater knowledge and correct perceptions of PC, whereas respondents with a higher level of education were older and had a limited understanding of the concept. Better knowledge and awareness in younger individuals has also been noted in a study from the US [29]. That there was less variation in accurate perceptions about these aspects of PC across gender is understandable as both have equal opportunity to care for a palliative patient, regardless of age and relationship with patient. However, males had a better comprehension of the focus of PC whereas more females had enhanced knowledge about where PC can be provided.

Children had significantly more information about PC compared to a spouse, again comparable internationally [29]. This is likely because younger caregivers have increased access to information technology, along with the education and skills to use it, relative to most patients’ spouses. This is possibly because, although affected emotionally, children take on more responsibility in the practical and medical aspects of caring for their parents as patients, are more involved in discussions and management aspects with the medical team, and therefore actively seek information to enhance and improve the care of their affected parent, sparing the other parent of this difficult task. This can also be considered reflective of traditional Pakistani cultural practices and the dearth of nursing homes and hospices such that children often take on the responsibility of caring for parents as they age and/or when they are sick [35‐37] Table 3.

As the study setting has a gradually expanding PC program, the caregivers in the study sample may have acquired some information about the concept of PC during their interactions with the nurses and physicians. The results, therefore, should be generalized with caution to caregivers providing PC in settings without formal programs. This study was done on caregivers associated with a single hospital with a nascent palliative care program in a big city and the results are not generalizable to the rest of the country. All the respondents were literate, with majority of the caregivers educated at least up till grade 10, and so the perceptions, knowledge and attitudes of caregivers with less schooling than that - which in the Pakistani context is a sizeable majority - is not known [27]. Most of the respondents in the sample were males and may not be representative of the actual gender distribution in other samples and international populations where studies have shown that most caregivers are female. Additionally, this does not necessarily imply that most caregivers in this setting are male, so it may also not be representative of the actual gender distribution in this population of caregivers. Further studies assessing this aspect will make it clear.

Nearly half of the caregivers had partial understanding of the holistic PC approach in terms of perceptions in this limited study. The respondents showed consistent understanding of two foundational aspects indicating correct knowledge across age groups, gender, education level, and relationship with the patient. Firstly, that PC should be offered to everyone suffering from terminal illness [20] and, secondly, that this approach encompasses not just physical, but also psychological and social needs. In Pakistan PC is not available in the public health system unlike in developed countries. Education and training about PC are not part of medical education in the large majority of medical institutions in the country. It has been established by the WHO and noted repeatedly in the literature that knowledge deficits and misunderstandings are amongst the main challenges in providing PC [37‐39]. Thus, it is necessary to assess perceptions and knowledge of PC in caregivers on a wider scale as palliative care programs are established, while simultaneously incorporating training in PC in the health care professions within a public health system [36, 37, 39].

This study’s findings will enable the development of focused education strategies to fill the knowledge gaps in the Pakistani context. Even when health care providers or physicians are reluctant to offer PC as an option due to feelings of failure or lack of information, they will be more likely to offer PC if caregivers or the patient are knowledgeable about it and request it [13, 14]. It is essential to increase awareness and enhance knowledge about PC in both patients and caregivers while simultaneously dispelling misperceptions as PC services are developed at a public health level [14, 32, 38, 39].