Background
Before the invention of dialysis treatment in 1960s, suffering from an end-stage renal disease (ESRD) was considered a slow inescapable death sentence [
1,
2]. Even after initiation of haemodialysis treatment, it was not made available to every patient due to the scarcity of personnel and machines. But it was made available only to those with acute kidney failure to avoid death and to non-diabetic, fit and young patients who could easily be treated and return to their normal condition with less demand of the already limited resources [
3]. By 1960, Belding Scribner and his colleagues discovered a shunt which helped long-term dialysis of ESRD patients [
4]. The discovery held back the notion that dialysing ESRD patient is “unethical” or “cruel” [
5]. The lifespan and quality of life of ESRD patients can now be extended but is it the same for developing countries like Tanzania.
Among the three types or modalities of renal replacement therapy: haemodialysis, peritoneal dialysis and kidney transplantation; haemodialysis (HD) is the most preferable option for many developing countries [
6]. Patients receiving chronic haemodialysis (CHD) treatment are dialyzed three times per week with each dialysis session lasting up to four hours [
7] during which excess body fluid and toxic components such as urea are removed out of the body [
6]. On the other hand, peritoneal dialysis especially Continuous Ambulatory Peritoneal Dialysis (CAPD) has received varied acceptance among African countries due to high costs of peritoneal fluids [
8,
9]. Furthermore, high rates of infection among patients using peritoneal dialysis raises a concern for those in Africa where most of the people still reside in unhygienic environments which lack clean water, low electric supply and limited sanitary education [
10]. Although most of the developing countries including Tanzania view CHD as a cheaper alternative compared to other types of renal replacement therapy but majority of ESRD patients remain untreated [
10].
According to Moosa and Kidd, access to CHD services is largely determined by social factors than medical factors [
11]. For this study, the term access is not merely an entry into the health system but also an opportunity to use dialysis services and have patients’ needs for services satisfied [
12]. Most of non-medical factors that hold ground in Africa when determining adequate ESRD patients for CHD are implicit or inconsistent and have been abandoned by most of the developed countries [
13]. In Tanzania, a negligible number of patients receive CHD services, up to 2015 at least 267 patients were on CHD services [
14]. Although the actual data on the prevalence of ESRD among Tanzanians is scarce, more than 83.7% of adult diabetic patients have renal disease which marks them as possible victims for ESRD [
15]. Given the evolving demographics of ESRD population, the annual increase of ESRD patients and increasing costs of CHD treatment in Africa, non-medical facilitators and barriers experienced by ESRD patients have to be explored and the ethical challenges have to be made explicit. This necessitated this study to be conducted.
Methods
The study employed the phenomenological study design with qualitative approach [
16] to explore non-medical facilitators, barriers and associated ethical challenges during access of chronic haemodialysis (CHD) services at Muhimbili National Hospital. Muhimbili is the largest and only government-owned hospital offering haemodialysis services in Dar es Salaam. It has a total of 16 working dialysis machines. Generally, 75% of all haemodialysis services in Tanzania are offered in Dar es Salaam region [
17].
During the two month period (April to June 2017) data were collected and analyzed simultaneously. Data were extracted from two purposively sampled groups of key informants [
18]: Healthcare providers and patients. The major selection criterion for health care providers was at least 2 years of work experience at the dialysis unit whereas for ESRD patients at least 3 months of dialysis. There are reasons for not interviewing ESRD patients not receiving CHD treatment. The main one being the absence of contact details at the unit and none existence of national ESRD repository for none dialysed patients. Additionally, the chance of finding such patients alive in a hospital ward was slim due to death or discharge. Unlike their counterparts, patients receiving CHD are suitable to elicit experiences and hurdles they go through to receive dialysis, they also offer an inside experience on how treatment is provided at the unit. Their views were further harmonized by the health social worker who deals with social concerns for patient’s access to dialysis. The social worker was interviewed twice for clarity on how patients are enrolled in CHD treatment.
During patients’ selection, a list of names was obtained from the nurse in charge with the permission from the head of the dialysis unit. The list highlighted the time for dialysis and day of patient attendance. On each day of the interview, patients were approached by the researcher and voluntarily asked to participate in the study. Those who agreed to participate were free to choose to be interviewed before or after dialysis sessions. Most of the patients chose to be interviewed prior to commencing the dialysis due to the fact that after dialysis they feel weak and lightheaded. For the healthcare providers, names and contact details were obtained from the head of the dialysis unit. Some of them were contacted physically and others were called to ask for their participation. Those who agreed were free to decide on the time, date and place of interview.
Each group was assigned to its own interview guide (Additional file
1). The interview guides where pilot tested with few patients and a healthcare provider and questions rephrased. Each interview guide had three open-ended questions with subsequent probing questions. The questions were tailored to answer the three study objectives regarding non-medical facilitators, non-medical barriers and ethical challenges towards accessing CHD services at Muhimbili National Hospital. Interviews were conducted by the researcher in a separate and an isolated room away from the earshot of the healthcare providers and other patients. This was done so as to maintain the privacy of key informants and confidentiality of the information shared with the researcher. Additionally, the researcher ensured that questions are fully exhausted by participants and data collection stopped when all the themes became saturated. With permission from key informants, interviews were audio recorded. Furthermore, field notes were taken for each interview to assist the analysis.
Qualitative data analysis
Content analysis was used to analyse data guided by deductive and inductive approaches. The rationale for using the two approaches based on the desire to minimise weaknesses which are visible once a single approach is used [
19].
With the aid of F4 version 3.0.3 computer program, the audio taped data were transcribed verbatim into a Microsoft word document by the researcher. All transcripts were translated from Swahili to English language by the bilingual expert. Then the transcripts were read and re-read to familiarize and gain more understanding of the concepts portrayed by key informants. The identified concepts were then coded by using pre-determined codes and emergent codes. Pre-determine codes were obtained from various studies centred around barriers and access to health care services or CHD services in developed and developing countries [
17,
20‐
27]. For the information which did not fit within the pre-determined codes, a new code was formulated to accommodate them. Both emerging and pre-determined codes were grouped into 9 meaningful clusters named as sub-themes. Due to the differences and similarities, sub-themes were further reduced into 3 main themes namely: non-medical barriers towards accessing CHD services, non-medical facilitators towards accessing CHD services and ethical challenges associated with accessing CHD services. The three sub-themes: availability of CHD resources, acceptability of treatment procedures and treatment disparity were not formulated from existing literature but from text data during analysis. Although it clearly extrapolated the strength of using both inductive and deductive content analysis methods, the process of data collection and analysis was iterative.
Moreover, the whole process of assigning texts into codes, assigning codes into sub-themes and grouping sub-themes into main themes was systematically and logically made with inference to the coding scheme which was modified whenever new information arose. Due to a large volume of text data NVivo version 10 computer software was used to organize text data into respective codes and themes.
Discussion
Receiving chronic haemodialysis (CHD) treatment as a means to combat the carnage of end-stage renal disease continues to be a challenge in Tanzania and Africa as a whole. This qualitative study focused on exploring non-medical facilitators and barriers towards accessing CHD and associated ethical challenges at one of the referral government-owned hospital in Tanzania. Three major themes were explored: non-medical facilitators towards accessing CHD services, non-medical barriers towards accessing CHD services and ethical challenges associated with accessing CHD services.
Possession of health insurance emerged as a major facilitator through which a patient can timely and conveniently access CHD at the dialysis unit. Thus for insured patients, it was easy to receive CHD than uninsured patients. Unfortunately, in Tanzania, access to health insurance remains confined to the people employed in formal sectors and wealthy individuals. Also, most the health insurance companies largely operate in urban areas [
29]. Rural population employed in the informal sector are covered by the Community Health Fund (CHF) which cannot cover any referral costs beyond district level. Sadly, almost all dialysis services are provided in referral hospitals which appear to be above what CHF can cover. This leaves patients coming from rural areas and patients with deprived economical status vulnerable to the sufferings of end-stage renal disease (ESRD). Also, inconvenient dialysis schedule leaves uninsured patients with two options at hand: to quit or postpone treatment. Quitting or postponing haemodialysis for ESRD patients entails inescapable death. The undue influence from insurance companies which forces the rearrangement of dialysis schedules at the dialysis unit in order to suit their clients (insured patients) is a result of competition in the healthcare market. The findings are supported by Miller who reported that, the ability of patients to obtain appointments at the time they desire is highly controlled by an aspect of competition in health care [
30]. This implies failure of the government to implement universal access as a result implicating the survival of unhealthy and uninsured patients at the dialysis unit.
Additionally, family readiness to support their patient was a facilitator to easily and timely access CHD. For CHD being a long-term and lifestyle changing treatment, patients become economically dependent on their families and to family resources. However, there are times when families abandon their patients and this causes psychological disturbance to patients. Similar findings have been reported by Thong et al.
, who noted that dialysis patients who perceived of not receiving enough social support be it from family members, spouse and colleagues had high mortality out of which lack of daily emotional support contributed up to 10% increase in mortality [
31]. If family members are not empowered enough to care for their patients receiving CHD, efforts of health care providers to restore the patient’s medical condition using scarce resources available is likely to be wasted.
Non-medical barriers towards accessing chronic haemodialysis (CHD) were also explored. Key informants named overwhelming costs as a major barrier in receiving CHD services whereby a patient has to pay almost three hundred thousand Tanzanian shillings (136 US Dollars) for single haemodialysis session, that is if the patient is not in the exemption payment system. Given that more than one-third of Tanzanians earn less than 1$ per day it is clear that, without exemption, most of the patients will never afford the current CHD services [
17]. Similarly, this is evident in many developing countries especially in sub-Saharan Africa where more than 90% of ESRD patients remain untreated [
10,
32]. CHD being among the most expensive yet long-term treatment, paying out of pocket is likely to make the financial status of ESRD patients worse than a normal population. For that reason creating a new circle of poverty exacerbated by increased health care expenses.
The patient’s geographical location especially distance from the dialysis centre also emerged as a barrier for ESRD patients to access CHD. It is a barrier with a geographical bias for ESRD patients of the same country. Patients without relatives in Dar es Salaam have to rent places to stay near the hospital as a result, incurring rent costs. Renting a house raises a concern of whether patients are committed to undergo haemodialysis for the rest of their lives. Renting a house implies being far from family members and friends. Renting a house creates additional increase in treatment expenses compared to the patients dwelling in Dar es Salaam. With such emotional and financial difficulties many patients will fail to carry CHD treatment in a long term. Some patients despite renting or staying with their relatives still travelled more than 37 miles to reach the dialysis unit; this threatened the increase in mortality risk. Similarly, Tonelli et al.
, found out that, haemodialysis patients who stayed more than 31 miles away from the dialysis unit had higher mortality compared to patients who stayed less than 31 miles to the dialysis unit [
33]. Similar findings have also been reported by Thompson et al., and Moist et al., [
26,
34]. Patients residing outside of Dar es Salaam or in regions without dialysis centres are forced to travel to Dar es Salaam or accept death as their fate. Such unnecessary deaths could be avoided if dialysis centres were increased and distributed evenly throughout the country.
Additionally, limited availability of chronic haemodialysis (CHD) resources emerged as a barrier hindering access to CHD services. The number of renal experts including nurses and nephrologists was surprisingly too small and overwhelmed by the daily increasing number of end-stage renal disease (ESRD) patients in the unit. Similar findings have been reported by Katz et al., who noted that the number of nephrologists compared to the general population was less than 1 per million population (pmp) or even absent in most African countries [
21]. Such overload hinders adequate prescription of treatment since doctors not often see their patient or spend time with them. Moreover, if the shortage of haemodialysis machines persists, the opportunity to obtain haemodialysis treatment remains slim, appointment schedules frequently rearranged and length of stay at the unit waiting for dialysis increased.
Regarding the acceptability of dialysis treatment procedures, some patients believed that prayers are enough to heal the kidney and relieve them from the sufferings of ESRD. Similar findings have been reported in a few studies about ESRD patients considering religion to be a healing factor whereby having faith in God is a cure for their illness [
35,
36]. Given that, it is from cultural and religious beliefs that people find the meaning of life and comfort, care models highlighting the integration of religion or cultural beliefs and care for end-stage renal disease ought to be established.
Apart from non-medical facilitators and barriers, ethical challenges associated with accessing CHD services have also been explored: the dual role of health care providers, respect for patient autonomy in decision making and treatment disparity. Health care providers found themselves uncomfortable when they had to play a dual role that is as a gatekeeper to hospital resources and at the same time to advocate patient’s interests. ESRD being a potential killer disease most patients suffering from it would opt to be treated and more surprisingly to be treated for free. If that happens, with the current limited financial support from the government, the dialysis unit is most likely to collapse. For that reason, health care providers act with caution in making sure that the hospital incurs minimum financial losses and if possible none. For healthcare providers not being able to fulfil their oath core obligations [
37], leaves them feeling guilty and blameworthy. This is supported by a study conducted among Norwegian general practitioners which found out that it was difficult to refuse treating a patient in front of them instead they referred patients to third parties or they appealed to available guidelines to make decisions [
38]. But for the country like Tanzania whose government is still reluctant to make treatment against ESRD a priority, most of the healthcare providers are destined to remain conflicted yet uncomfortable with the gatekeeper role of institutional or social resources.
Also respecting patient autonomy in decision making was a challenge not only to health care providers but also to patients. Decisions made by a patient can be overruled if the patient fails to financially support their own treatment. This subjects the patient’s autonomy into jeopardy. Moreover, it calls for more evaluation and understanding of boundaries for the patient’s autonomy. But financial ability as a boundary to patient’s autonomy seems inescapable with the current commoditization of health care services, CHD being one. Rowe and Moodley express their concern about the amendments to the South Africa National Health Act which ought to recognize patients legally as consumers that is.
“
If the patient is considered a ‘consumer’ of healthcare…the doctor takes on the role of ‘provider’ or ‘supplier’ of the ‘commodity’ or ‘product’ of health care. This role-shifting could result in the replacement of professional ethics with marketplace or business ethics” [
39].
If the autonomy of ESRD patients seeking CHD remains financially handicapped, only the needs of wealthier patients will be taken care of.
Also, key informants reported about treatment disparities and privileges between health insured patients and uninsured patients paying under the exemption. The disparities were evident in the number of dialysis sessions, medication prescribed and appointment schedules. Uninsured patients are only dialyzed twice a week compared to insured patients who are dialyzed thrice a week. This difference in dialysis sessions mirrors the differences in removal of toxins and other body wastes. This means that uninsured patients who received few dialysis sessions per week could be left with a higher level of toxins compared to their counterparts. Similarly, a cross-sectional study involving patients on haemodialysis conducted in Iran found out that the required urea clearance level is likely to be achieved with more dialysis sessions [
40]. Likewise, Chowdhury et al.
, noted that limiting the number of dialysis sessions leave most patients displaying uremic symptoms, this results in heightened mortality and morbidity risk [
41]. Apart from the difference in dialysis sessions, medications like Erythropoietin (EPO), the highly recommended drug for haemodialysis patients with the anaemic condition are made available to uninsured patients only if they can pay for it. If CHD services are not fully funded through health insurance, the everyday widening gap of inequality between ESRD patients is there to stay.
No research if any goes without limitations; thus due to qualitative nature, the study cannot be generalized to other dialysis units inside or outside of Tanzania due to context specificity. But still, the study brings out the valuable knowledge and awareness in the fight against an increasing burden of end-stage renal disease (ESRD) for low-income countries. Another limitation was the inability of the researcher to track and interview none dialyzed ESRD patients who could have contributed new insights into resolving the problem. The researcher proposes comprehensive research which can utilize mixed-study design employing qualitative and quantitative approaches to be able to understand the depth and magnitude of the problem countrywide and elsewhere.