ABSTRACT
Background
Decisions related to artificial nutrition and hydration (ANH) provision for patients with terminal cancer are a complex topic that can affect the patients’ quality of life (QoL). This study aimed to investigate the knowledge, attitudes and practices of healthcare professionals (HCPs) in South Africa concerning the provision of ANH for patients with terminal cancer.
Methods
This descriptive, cross‐sectional study with an analytical component, involved doctors, nurses and dietitians experienced in caring for patients with terminal cancer. Data were collected via an electronic platform (n = 151), utilising a validated questionnaire with close‐ended questions. Statistical analysis was performed using Statistica Version 14.0, with p < 0.05 indicating statistical significance.
Results
Notable disparities were observed in HCPs’ knowledge, attitudes and practices related to ANH provision. Participants demonstrated a high level of knowledge about palliative care (PC) (92%) but scored lower for ANH provision (56%). Most participants were aware of the burdens associated with ANH provision (mean score: 4.1 ± 0.7 [5‐point Likert scale]), yet optimism emerged regarding its perceived psychological benefits. Factors such as patient autonomy (4.5 ± 0.8) and communication between the medical team and patients (4.4 ± 1.0) appeared to influence HCPs’ practices. Furthermore, a notable difference was observed in knowledge scores and attitudes based on certain socio‐demographic variables.
Conclusion
This study suggests that HCPs have inadequate knowledge about, and contradictory attitudes toward, ANH provision in patients with terminal cancer. The study highlights the need for targeted education on terminal care, thereby informing efforts to improve the overall quality of care of these patients.
Keywords: artificial nutrition and hydration, attitudes, healthcare professionals, knowledge, practices, terminal cancer
Summary
Participants were knowledgeable about PC but had inadequate knowledge about ANH provision to patients with terminal cancer.
HCPs had contradictory attitudes towards the potential benefits and burdens of ANH provision for this patient population as participants expected ANH to alleviate psychological symptoms for patients but they were also aware of the potential physiological burdens associated with ANH provision during the terminal stage of illness.
Significant differences were identified in both knowledge scores and attitudes of participants based on their healthcare sector, unit of employment and profession.
Dietitians had significantly lower ANH knowledge scores and exhibited greater optimism regarding the advantages of ANH provision for patients with terminal cancer.
1. Introduction
Cancer is one of the leading causes of death globally, with incident rates rising yearly [1]. In 2022, South Africa, alone, experienced over 100,000 new cancer cases [2]. As cancer progresses, patients often experience a decline in their quality of life (QoL), which is accompanied by fatigue, anorexia and constipation. This can lead to decreased oral intake and weight loss [3, 4, 5].
For patients with cancer, poor nutritional status and weight loss are negatively associated with QoL and survival [6]. The evidence is clear that early implementation of nutrition support, when the cancer diagnosis is made, is crucial in alleviating nutrition impact symptoms (NIS) and improving QoL and survival [6, 7]. However, the provision of artificial nutrition and hydration (ANH) during the terminal stage of cancer is controversial. It is evident that there is discord in the literature regarding the provision of ANH during this stage, and practices are often based on low‐quality evidence [8, 9]. For the purpose of this study, ANH refers to the provision of water or nutrients through enteral, subcutaneous or intravenous (IV) delivery [3].
There appears to be consensus that ANH is a crucial aspect of palliative care (PC) for patients with cancer when the aim is to prolong life or increase QoL [10]. During the advanced stages of cancer, ANH may be beneficial if patients are more likely to die from starvation than the disease itself [10]. Once they reach the terminal stage of cancer, however, their condition deteriorates; QoL decreases, and they become dependent on medical interventions to sustain life [5]. Using artificial means to feed patients with terminal cancer may result in more burdens than benefits [11]. In patients with terminal cancer, ANH has demonstrated no beneficial impact on QoL or life expectancy [7, 12, 13, 14].
Despite the lack of evidence supporting the use of ANH in patients with terminal cancer, healthcare professionals (HCPs) continue prescribing it to those nearing the end of their lives, with in‐hospital rates of provision reaching up to 88% [15]. The literature indicates that HCPs have a good understanding of the potential pulmonary and gastrointestinal burdens associated with ANH provision in cancer patients who are terminally ill [16, 17]. Despite this, many continue to provide these patients with ANH [17, 18]. This discrepancy between knowledge and practice may be because HCPs perceive ANH to be clinically and psychologically beneficial or because of their own cultural and religious convictions [19, 20]. Additionally, both doctors and nurses acknowledge that ANH is often administered during the final stages of care, with the aim of preventing patients and their families from feeling abandoned [16, 21].
It is the healthcare team's responsibility, throughout the disease trajectory, to provide evidence‐based recommendations to patients and their families regarding feeding options. Therefore, HCPs must possess comprehensive knowledge about the provision of ANH for patients with terminal cancer, to ensure the best possible QOL and death for these patients. However, inadequate ANH‐related knowledge among HCPs persists with studies primarily evaluating nurses’ knowledge, despite doctors having significant influence in decision‐making [17, 18, 22]. Dietitians are viewed as experts in the field of human nutrition and are key in providing evidence‐based nutrition support, yet their role in decision‐making is frequently unrecognised [23].
While numerous international guidelines highlight the significance of a patient‐centred approach and multidisciplinary collaboration during terminal care, HCPs often find it challenging to communicate with patients and their families about end‐of‐life care, as highlighted in numerous South African studies [21, 24, 25, 26, 27, 28, 29].
The rise in cancer cases in South Africa has resulted in an increased demand for end‐of‐life and terminal care, yet PC remains poorly integrated into healthcare facilities, with NGO‐managed PC and hospice services struggling to address resource constraints [30]. Consequently, patients especially in rural areas rely on acute care hospitals that often lack dedicated palliative or oncology wards, leading to ICU and general ward admissions for managing acute conditions alongside terminal illnesses [30, 31].
The National Policy Framework and Strategy on Palliative Care currently provides guidance for strengthening the provision of PC in South Africa and identifying barriers to its implementation [32]. Local postgraduate diplomas in palliative medicine and research programmes on PC have become more readily available in the last two decades [30, 33].
As the significance of PC is increasingly recognised in South Africa, it is imperative to assess the current attitudes and level of knowledge of local HCPs and to consider the difference in attitudes and knowledge scores based on certain socio‐demographic factors. This evaluation can help identify HCPs’ misconceptions about ANH and knowledge gaps concerning the care of cancer patients who are terminally ill. Additionally, this evaluation may enhance training in PC that has a specific focus on terminal care. By identifying HCPs’ practices and the factors that could influence these in ANH provision, it is possible to gain valuable insight into the quality of care that terminally ill patients receive. To the best of the researchers’ knowledge, no studies have evaluated South African HCPs’ knowledge, attitudes and practices pertaining to the provision of ANH in patients with terminal cancer.
2. Methods
2.1. Study Design and Participants
This was a descriptive cross‐sectional study with an analytical component. The study included doctors, nurses and dietitians practising in South Africa, who have experience caring for patients with terminal cancer. Both purposive and convenience sampling were used. A total of 176 participants were included in the study. Of these, 25 exited the questionnaire after completing the ‘Knowledge’ section, resulting in 151 participants completing the full questionnaire. Data were collected from April to May 2022 through a self‐administered electronic questionnaire.
2.2. Instrument
A previously validated questionnaire assessed the knowledge, attitudes and practices of HCPs pertaining to the provision of ANH in patients with terminal cancer [17]. The original authors granted approval to use the questionnaire. This questionnaire was adapted for the South African context by removing questions irrelevant to South African HCPs and incorporating items exploring doctors’ and nurses’ attitudes towards the role of dietitians in PC.
The first part of the questionnaire elicited the participants’ socio‐demographic data, such as their age, gender, religion, education and years of clinical experience. Screening questions were included to assess whether participants met the study's inclusion criteria. These pertained, in part, to the participants’ experience with terminal cancer patients. The exclusion criteria included HCPs who did not provide consent, other allied health professionals, and medical doctors, registered nurses and dietitians without experience in caring for patients with terminal cancer. From the second part onwards, the adapted version of the previously validated questionnaire was used.
The adapted version of the questionnaire consisted of five sections, which addressed knowledge of PC (5 items), attitudes about the dietitian's role in PC (3 items), knowledge about ANH for patients with terminal cancer (13 items), attitudes about the benefits and burdens of ANH (14 items), and factors that could influence HCPs’ attitudes and practices (19 items). The sections on ‘Knowledge assessment’ utilised ‘True’, ‘False’ or ‘Do not know’ scoring. The level of knowledge was defined and interpreted according to university examination standards, that is: poor knowledge was defined as a score of less than 50%, average knowledge as 50%–64%, good knowledge as 65%–74% and excellent knowledge as 75% or above.
The ‘Attitude’ section was divided into two subscales, namely ‘Benefits’ and ‘Burdens’ of providing ANH for patients with terminal cancer. Both subscales utilised a 5‐point Likert scale, with options from ‘Strongly disagree’ (1) to ‘Strongly agree’ (5), to assess attitudes. Reverse scoring was applied to all items under the ‘Benefits’ subscale. An average total attitude score was calculated with a range of 1–5. A score above 3 indicated a negative attitude, meaning participants were against providing ANH for patients with terminal cancer. Additional analyses of the ‘Benefits’ and ‘Burdens’ subscales were performed separately. The scores also ranged from 1 to 5. A score above 3 indicated an unoptimistic attitude about the benefits of ANH provision for patients with terminal cancer and a higher recognition of the possible burdens thereof. Additionally, a second Likert scale was provided, ranging from ‘Very unimportant’ (1) to ‘Very important’ (5), to deduce beliefs about these items. The ‘Beliefs’ section was used to support the interpretation of the ‘Attitude’ section. Factors that could influence practices were assessed using 5‐point Likert‐type items, ranging from ‘Strongly disagree’ (1) to ‘Strongly agree’ (5), followed by a multiple‐choice question.
As the questionnaire was previously validated, a pilot study was conducted to assess whether the content was appropriate within the South African context. To assess this, a doctor and dietitian who work with oncology patients were asked to comment on the feasibility and precision of each item within the scope of providing care to patients with terminal cancer in South Africa. Face validity was also assessed by six undergraduate dietetic students from [removed for blind peer review]. The face validity assessment was conducted in the same manner as that of the main study to ensure that the electronic programme functioned optimally. Minor adjustments were made to the final questionnaire based on the feedback received.
2.3. Data‐Collection Procedure
After receiving ethical approval, the research team approached various relevant associations, organisations and facilities within South Africa to obtain permission to distribute the questionnaire among their members. Participant anonymity was ensured by identifying a contact person within each association, organisation and facility and then distributing an invitation e‐mail, with the link to the questionnaire, on behalf of the principal researcher. The link to the questionnaire was also shared via nursing, dietetic and PC WhatsApp groups. A Stellenbosch University‐hosted electronic programme, SUNSurvey, automatically captured the data obtained from the participants’ answers.
2.4. Ethical Considerations
Ethics approval was granted by Stellenbosch University Health Research Ethics Committee (reference number: S21/09/180). Subsequently, written approval was granted by various associations, organisations and facilities to distribute the invitation e‐mail, with the link to the questionnaire, on their platforms and to their registered members, on behalf of the researcher. Consent was obtained from potential participants before participation and they were assured of privacy and confidentiality.
2.5. Data Analysis
Data were analysed using Statistica Version 14.0 (http://tibco.com). Descriptive statistics were used to describe participants’ socio‐demographic characteristics, knowledge of PC and ANH, and attitudes and beliefs about ANH provision as well as the factors that could influence HCPs’ practices. Frequency distributions were presented in tables or histograms. Medians and means were utilised as the measures of central tendency and standard deviations and range as indicators of spread. Reverse scoring was applied exclusively to descriptive statistics to enable the combination of the ‘Benefits’ and ‘Burdens’ subscales to derive an overall ‘Attitude’ score. For inferential statistics reverse scoring was not utilised as the ‘Benefits’ and ‘Burdens’ subscales were analysed without being combined. Associations between nominal variables were explored using contingency tables and chi‐squared tests. Continuous knowledge scores and attitudes versus binary nominal variables were investigated using the pooled t‐test or, if the variances between the groups differed significantly, the Welch's t‐test. An ANOVA test and its non‐parametric equivalents (the Mann–Whitney U or Kruskal–Wallis H tests) were used to compare continuous response variables to nominal input variables. A p‐value of p < 0.05 represented statistical significance in hypothesis testing.
3. Results
3.1. Socio‐Demographic Characteristics
Table 1 is a summary of the study participants’ socio‐demographic characteristics. The characteristics are reported as frequencies and percentages (n, %), means and standard deviations (means ± SD), or medians and ranges (median, range). The mean age of the participants was 46.5 years (SD = 3.2), with the majority being female (n = 144, 81.8%). Most participants were medical doctors (n = 79, 44.9%), and more than half had a bachelor's degree (n = 94, 53.4%). The average number of years in overall clinical experience was 20.8 years (SD = 12.7). Most participants worked in the private sector (n = 115, 65.3%), and ‘Other’ was indicated as the most common working unit (n = 54, 30.1%). Private practice and work in a sub‐acute/frail‐care setting were the most frequent responses given for unit ‘Other’. The average number of years of clinical experience in caring for patients with terminal cancer was 11.9 years (SD = 10.0), and most of the participants received PC education in the past (n = 118, 67.0%). In‐service training had been received by 51.7% (n = 61) of participants, while 65.3% (n = 77) had received training at a postgraduate level, and only 26.3% (n = 31) had received PC education at an undergraduate level. In the past year, 71% (n = 125) of participants had cared for patients with terminal cancer who were receiving ANH. Enteral nutrition was the most common type of artificial nutrition used (n = 89, 71.2%), followed by total parenteral nutrition (n = 68, 54.4%) and supplemental parenteral nutrition (n = 63, 50.4%). IV fluids were administered by 66.4% (n = 83) of participants.
Table 1.
Socio‐demographic characteristics (N = 176).
| Variable | Mean ± SD | Median, range |
|---|---|---|
| Age, years | 46.5 ± 13.2 | 46, 24–84 |
| Years of total clinical experience | 20.8 ± 12.7 | 20, 2–55 |
| Years of experience in terminal cancer | 11.9 ± 10.0 | 10, 1–48 |
| Variable | n (%) | |
|---|---|---|
| Gender | ||
| Female | 144 (81.8) | |
| Male | 32 (18.2) | |
| Profession | ||
| Dietitian | 32 (18.2) | |
| Doctor | 79 (44.9) | |
| Nurse | 65 (36.9) | |
| Education level | ||
| Bachelor's | 94 (53.4) | |
| Diploma | 28 (15.9) | |
| Master's | 47 (26.7) | |
| Nursing school | 2 (1.2) | |
| PhD | 5 (2.8) | |
| Religious preferences | ||
| Atheist | 17 (9.6) | |
| Christian | 133 (75.6) | |
| Do not wish to specify | 6 (3.4) | |
| Hinduism | 5 (2.8) | |
| Islam | 11 (6.3) | |
| Other | 10 (5.7) | |
| Healthcare sector (multiple choices allowed) | ||
| Educational | 23 (13) | |
| Other | 17 (9.6) | |
| Private | 115 (65.3) | |
| Public | 59 (33.5) | |
| Working unit (multiple choices allowed) | ||
| Hospice | 23 (13.1) | |
| ICU | 47 (26.7) | |
| Medical | 39 (22.2) | |
| Oncology | 50 (28.4) | |
| Other | 54 (30.1) | |
| PC | 35 (19.9) | |
| Surgical | 26 (14.8) | |
| PC education | ||
| Yes | 118 (67.0) | |
| No | 58 (29.0) | |
| Experience in ANH | ||
| Yes | 125 (71.0) | |
| No | 51 (29.0) | |
| Request by terminal patient to provide ANH | ||
| Always | 10 (5.7) | |
| Often | 43 (24.2) | |
| Sometimes | 85 (48.3) | |
| Never | 38 (21.6) | |
| Request by family to provide ANH | ||
| Always | 17 (9.6) | |
| Often | 76 (43.2) | |
| Sometimes | 67 (38.1) | |
| Never | 16 (9.1) | |
Abbreviations: ANH, artificial nutrition and hydration; ICU, intensive care unit; PC, palliative care; SD, standard deviation.
3.2. HCPs’ Knowledge of PC
The mean score for correctly answered items related to PC concepts was 4.6/5 (SD = 0.7), indicating an excellent level of knowledge among participants, with an accuracy rate of 92.0%. Notably, the item with the highest accuracy rate pertained to respecting the autonomy of patients who are terminally ill (n = 171, 97.2%). Conversely, the item with the lowest score was the following: ‘Throughout all the stages of PC, appropriate consideration should be given to the provision of artificial hydration and artificial nutrition replacements based on the needs of patients’ (n = 151, 85.8%). These data are illustrated in Table 2.
Table 2.
Knowledge of palliative care (N = 176).
| Label | Item (score range for each item: 0–1) | Answered correctly, n (%) | Answered incorrectly, n (%) | Do not know, n (%) |
|---|---|---|---|---|
| 1 | End‐of‐life care and terminal care are included in palliative care. | 170 (96.6) | 2 (1.1) | 4 (2.3) |
| 2 | The main aim of palliative care is to improve the quality of life of terminally ill patients. | 156 (88.6) | 19 (10.8) | 1 (0.6) |
| 3 | Throughout all the stages of palliative care, appropriate consideration should be given to the provision of artificial hydration and artificial nutrition replacements based on the needs of patients. | 151 (85.8) | 19 (10.8) | 6 (3.4) |
| 4 | Palliative care respects the autonomy of terminally ill patients. | 171 (97.2) | 3 (1.7) | 2 (1.1) |
| 5 | Palliative care does not administer unnecessary tests or treatments. | 165 (93.7) | 1 (5.7) | 1 (0.6) |
3.3. HCPs’ Knowledge of ANH in Terminal Cancer Care
Regarding knowledge of ANH provision for patients with terminal cancer, the overall mean score was 7.3/13 (SD = 4.3), indicating an average level of knowledge (55.8%). The item with the highest accuracy rate (n = 117, 70.1%) was related to the beneficial effects of ANH for cancer patients who are terminally ill (as shown in Table 3). Two items had the lowest score, namely ‘ANH replacement is necessary in preventing dysphagic terminally ill patients from starving to death’ (n = 70, 41.9%) and ‘Ketoacidosis as a consequence of aphagia often results in an increase in physical pain in terminally ill patients’ (n = 70, 41.9%).
Table 3.
Knowledge of the provision of artificial nutrition and hydration for patients with terminal cancer (n = 167).
| Label | Item (score range for each item: 0–1) | Answered correctly, n (%) | Answered incorrectly, n (%) | Do not know, n (%) |
|---|---|---|---|---|
| A. About the administration and treatment aims of artificial nutrition and hydration | ||||
| 1 | ANH replacement is beneficial for all terminally ill patients. | 117 (70.1) | 36 (21.6) | 14 (8.4) |
| 2 | ANH replacement can improve the strength of all terminally ill patients. | 95 (56.9) | 48 (28.7) | 24 (14.4) |
| 3 | ANH replacement is necessary in preventing dysphagic terminally ill patients from starving to death. | 70 (41.9) | 83 (49.7) | 14 (8.4) |
| 4 | ANH replacement signifies empathy and care for the patient from medical personnel and family members. | 75 (44.9) | 79 (47.3) | 13 (7.8) |
| B. Physiological metabolism of, and nutrition provision for, patients with terminal cancer | ||||
| 5 | Cachexia in terminal cancer patients clinically manifests as decreased protein synthesis and increased degradation, decreased carbohydrate tolerance, and increased lipolysis; therefore, major nutritional support, such as total parenteral nutrition, should be provided to replace the energy required for metabolism. | 100 (59.9) | 45 (26.9) | 22 (13.2) |
| 6 | In terminal cancer patients, due to abnormalities in carbohydrate, protein and fat metabolism, even aggressive nutritional support will not be able to improve patient nutritional status and weight. | 112 (67.1) | 35 (20.9) | 20 (12.0) |
| 7 | In terminal cancer patients, chronic starvation results in lipolysis, with subsequent ketoacidosis and anorexia; therefore, nutritional support, such as nasogastric feeding, should be provided to improve malnutrition resulting from anorexia. | 105 (62.9) | 44 (26.3) | 18 (10.8) |
| C. Links between dehydration, hunger and comfort in patients who are terminally ill | ||||
| 8 | The sensation of mouth dryness and thirst in terminally ill patients is mainly caused by dehydration. | 88 (52.7) | 68 (40.7) | 11 (6.6) |
| 9 | Artificial hydration can improve the sensation of mouth dryness and thirst in all terminally ill patients. | 96 (57.5) | 51 (30.5) | 20 (12.0) |
| 10 | Terminally ill patients are often hungry from dysphagia and aphagia. | 99 (59.3) | 47 (28.1) | 21 (12.6) |
| 11 | Artificial nutrition replacement can improve hunger status in all terminally ill patients. | 96 (57.5) | 56 (33.5) | 15 (9.0) |
| 12 | Aggressive nutritional support by tube feeding cannot change the nutritional status or weight of terminally ill patients. | 88 (52.7) | 56 (33.5) | 23 (13.8) |
| 13 | Ketoacidosis, as a consequence of aphagia, often results in an increase in physical pain in terminally ill patients. | 70 (41.9) | 50 (30.0) | 47 (28.1) |
Abbreviation: ANH, artificial nutrition and hydration.
3.4. Attitudes about ANH in Patients with Terminal Cancer
The mean total score for HCPs’ attitudes about ANH was 3.6 (SD = 0.7). This reveals a mostly unoptimistic attitude towards ANH provision for patients with terminal cancer. However, a certain degree of ambivalence was evident in the participants’ answers to the questions about benefits and burdens. While some participants were optimistic about the benefits of ANH provision in patients with terminal cancer (2.8 ± 1.0), many were aware of the burdens associated with ANH provision for these patients (4.1 ± 0.7).
These findings indicate that the provision of ANH is influenced by a psychological component, as most participants felt optimistic and believed that ANH provision could reduce anxiety in patients and their families and foster trust between patients and the HCPs (median = 2). The findings also revealed optimism and a strong belief that ANH provision can reduce dehydration‐induced delirium in patients with terminal illness (median = 2). Most participants agreed with all the items under the ‘Burdens’ subscale, indicating a high level of awareness of the potential burdens associated with providing ANH to patients with terminal cancer (Table 4).
Table 4.
Attitudes towards artificial nutrition and hydration provision in patients with terminal cancer (n = 151).
| A. Benefits of providing artificial nutrition and hydration | Agreement (attitude) | Importance (belief) | |||
|---|---|---|---|---|---|
| Label | Item (score range for each item: 1–5) | Mean ± SD | Median, range | Mean ± SD | Median, range |
| 1a | It can reduce dehydration‐induced delirium in terminally ill patients. | 2.4 ± 1.2 | 2, 1–5 | 2.5 ± 1.3 | 2, 1–5 |
| 2a | It can prolong the life of terminally ill patients. | 3.2 ± 1.4 | 3, 1–5 | 3.2 ± 1.4 | 3, 1–5 |
| 3a | It reduces the feeling of abandonment in terminally ill patients. | 3.0 ± 1.4 | 3, 1–5 | 2.6 ± 1.3 | 3, 1–5 |
| 4a | It improves mouth dryness and thirst in terminally ill patients. | 3.0 ± 1.3 | 3, 1–5 | 2.7 ± 1.2 | 3, 1–5 |
| 5a | The provision of ANH lowers the anxiety of patients and their family members and aids in developing trust from terminally ill patients and their family members. | 2.6 ± 1.3 | 2, 1–5 | 2.4 ± 1.3 | 2, 1–5 |
| 6a | By providing ANH, family members can express their care for terminally ill patients. | 2.8 ± 1.5 | 3, 1–5 | 2.5 ± 1.3 | 2, 1–5 |
| Total benefit score | 2.8 ± 1.0 | 2.6 ± 1.0 | |||
| B. Burdens of providing artificial nutrition and hydration | Agreement (attitude) | Importance (belief) | |||
|---|---|---|---|---|---|
| 7 | As a medical treatment, total parenteral nutrition is a high‐cost therapy. | 4.4 ± 1.0 | 5, 1–5 | 3.8 ± 1.2 | 4, 1–5 |
| 8 | Invasive procedures, such as the placement of central venous catheters, cause pain in terminally ill patients. | 4.2 ± 1.1 | 5, 1–5 | 3.9 ± 1.2 | 4, 1–5 |
| 9 | Placement of invasive catheters increases the risk of infection in terminally ill patients. | 4.5 ± 0.9 | 5, 1–5 | 4.1 ± 1.2 | 4.5, 1–5 |
| 10 | Activities of terminally ill patients are restricted by in‐dwelling tubing. | 4.0 ± 1.2 | 4, 1–5 | 3.9 ± 1.2 | 4, 1–5 |
| 11 | Nausea and vomiting can occur in terminally ill patients due to increased digestive tract secretions. | 3.9 ± 1.1 | 4, 1–5 | 3.9 ± 1.1 | 4, 1–5 |
| 12 | Fluid overload, such as ascites or peripheral oedema, can occur in terminally ill patients receiving intravenous infusions. | 4.1 ± 1.2 | 4, 1–5 | 4.1 ± 1.1 | 4, 1–5 |
| 13 | In terminally ill patients, increased respiratory tract mucous production may result from intravenous infusions, with the subsequent need for suction. | 3.7 ± 1.3 | 4, 1–5 | 3.9 ± 1.1 | 4, 1–5 |
| 14 | In terminally ill patients, fluid overload is likely to result in pleural effusion or pulmonary oedema. | 3.9 ± 1.2 | 4, 1–5 | 3.9 ± 1.1 | 4, 1–5 |
| Total burden score | 4.1 ± 0.7 | 3.9 ± 0.8 | |||
Abbreviations: ANH, artificial nutrition and hydration; SD, standard deviation.
Reverse scoring was applied, meaning a score below three indicates an optimistic attitude.
3.5. HCPs’ Attitudes about the Role of Dietitians in Providing ANH to Patients Who Receive PC
Most of the doctors and nurses who participated in this study believed that it is important for a dietitian to be involved in discussions with patients (diagnosed with a life‐threatening illness) pertaining to their ANH options (median = 4, range: 1–5, respectively). Furthermore, they believe that dietitians should play a role in the decision‐making process related to ANH provision for patients who are terminally ill (median = 4, range: 1–5, respectively). Notably, 69.7% (n = 99) of doctors and nurses reported referring patients with a life‐threatening illness to dietitians. The most common reason for referral cited in the questionnaire was the presence of NIS (n = 73, 73.7%), as indicated in Figure 1.
Figure 1.
Stages during which referral to a dietitian takes place (n = 99). NIS, nutrition impact symptoms.
3.6. Factors That Could Influence HCPs’ Practices
The aim of this section of the questionnaire was to identify factors that might influence HCPs’ practices related to the provision of ANH for patients with terminal cancer. Patient autonomy (median = 5, range: 1–5) as well as the obligation of HCPs to provide transparency (median = 5, range: 1–5) and open communication (median = 5, range: 1–5) were found to be highly influential factors in HCPs’ decision‐making process regarding ANH provision. Despite the weight of these ethical aspects and HCPs’ responsibilities, the opinions of doctor and nursing colleagues were also considered important (median = 4, range: 1–5, respectively), highlighting the complexity of various influential factors. When asked who the most influential person in the decision‐making process is, patient influence (n = 90, 59.6%) greatly exceeded the influence of HCPs (n = 50, 33.1%) and family members (n = 11, 7.3%).
3.7. Difference In Knowledge Scores Based on Socio‐Demographic Characteristics
Results revealed significant differences in ANH knowledge scores based on the healthcare sector and unit in which HCPs were employed, as shown in Table 5. HCPs working in the public sector and those who selected ‘Sector other’ (which mostly referred to nongovernmental organisations) demonstrated significantly higher mean ANH knowledge scores compared to those outside these sectors (p = 0.012, p = 0.023, respectively). HCPs working in PC and hospice units had significantly higher mean ANH scores (p < 0.001, p < 0.001, respectively), while those working in intensive care units (ICUs) had significantly lower ANH scores (p = 0.025). There were also significant differences in knowledge scores based on profession (p < 0.001), with doctors obtaining higher mean ANH scores (8.6 ± 0.5) than dietitians (6.5 ± 0.8) and nurses (6.0 ± 0.5). Additionally, participants who received PC education had significantly higher mean ANH scores (p < 0.001) but not PC scores. Those with ANH experience had substantially higher ANH knowledge scores (p = 0.001). However, there was no significant difference in mean PC and ANH knowledge scores based on education level.
Table 5.
Difference in knowledge and attitudes about artificial nutrition and hydration provision based on socio‐demographic variables (n = 151).
| Knowledge about PC | Knowledge about ANH | Benefits of ANH | Burdens of ANH | |||||
|---|---|---|---|---|---|---|---|---|
| Variable | Mean ± SD | p value | Mean ± SD | p value | Mean ± SD | p value | Mean ± SD | p value |
| Gender | ||||||||
| Male | 4.5 ± 0.7 | 0.115 | 5.4 ± 4.0 | 0.013* | 2.5 ± 1.0 | 0.054 | 4.1 ± 0.6 | 0.862 |
| Female | 4.7 ± 0.7 | 7.7 ± 4.3 | 2.9 ± 1.0 | 4.1 ± 0.7 | ||||
| Profession | ||||||||
| Doctor | 4.7 ± 0.7 | 0.123 | 8.6 ± 4.2 | < 0.001 | 3.0 ± 1.0 | < 0.001 † | 4.3 ± 0.6 | 0.021** |
| Nurse | 4.7 ± 0.6 | 6.0 ± 4.4 | 3.2 ± 1.1 | 4.0 ± 0.7 | ||||
| Dietitian | 4.4 ± 0.8 | 6.5 ± 3.3 | 3.7 ± 0.6 | 4.0 ± 0.6 | ||||
| Healthcare sector (multiple choices allowed) | ||||||||
| Public | 4.7 ± 0.5 | 0.670 | 8.3 ± 4.5 | 0.012* | 3.0 ± 1.1 | 0.188 | 4.3 ± 0.5 | < 0.001* |
| Private | 4.6 ± 0.8 | 0.814 | 7.2 ± 4.3 | 0.659 | 3.1 ± 1.0 | 0.636 | 4.1 ± 0.7 | 0.524 |
| Educational | 4.6 ± 0.7 | 0.595 | 8.3 ± 4.3 | 0.193 | 3.0 ± 1.0 | 0.363 | 4.1 ± 0.7 | 0.795 |
| Other | 4.8 ± 0.8 | 0.231 | 9.4 ± 3.8 | 0.023* | 2.7 ± 1.0 | 0.059 | 4.0 ± 0.7 | 0.323 |
| Education level | ||||||||
| Diploma | 4.7 ± 0.6 | 0.711 | 6.5 ± 4.6 | 0.415 | 3.1 ± 1.1 | 0.470 | 4.0 ± 0.7 | 0.098 |
| Nursing school | 5.0 ± 0.0 | 6.0 ± 7.1 | 2.5 ± 1.2 | 3.5 ± 1.2 | ||||
| Bachelor's | 4.6 ± 0.8 | 7.2 ± 4.4 | 2.7 ± 1.0 | 4.1 ± 0.7 | ||||
| Master's | 4.7 ± 0.5 | 8.2 ± 3.9 | 3.0 ± 1.0 | 4.2 ± 1.0 | ||||
| PhD | 4.4 ± 1.0 | 5.2 ± 4.0 | 2.5 ± 1.2 | 3.5 ± 0.3 | ||||
| Religious preference | ||||||||
| Christian | 4.7 ± 1.0 | 0.075 | 7.1 ± 4.3 | 0.040 † | 2.8 ± 1.0 | 0.338 | 4.1 ± 0.7 | 0.175 |
| Atheist | 4.6 ± 0.9 | 7.8 ± 1.7 | 2.7 ± 0.8 | 4.1 ± 0.8 | ||||
| Islam | 4.5 ± 0.7 | 8.2 ± 5.4 | 2.5 ± 1.1 | 4.6 ± 0.4 | ||||
| Hinduism | 4.4 ± 0.5 | 8.2 ± 5.4 | 2.6 ± 1.0 | 4.3 ± 0.7 | ||||
| Do not wish to specify | 4.8 ± 0.4 | 11.0 ± 1.7 | 3.7 ± 0.7 | 3.9 ± 0.5 | ||||
| Other | 3.8 ± 1.0 | 5.3 ± 6.8 | 2.3 ± 1.1 | 3.9 ± 1.0 | ||||
| Working unit (Multiple choices allowed) | ||||||||
| Medical | 4.9 ± 0.7 | 0.642 | 7.3 ± 4.1 | 0.896 | 3.27 ± 1.01 | 0.536 | 4.2 ± 0.6 | 0.576 |
| Surgical | 4.5 ± 0.7 | 0.582 | 7.9 ± 4.0 | 0.440 | 3.39 ± 0.96 | 0.241 | 4.0 ± 0.7 | 0.595 |
| ICU | 4.5 ± 0.7 | 0.136 | 6.1 ± 3.7 | 0.025 † | 3.6 ± 0.9 | < 0.001* | 4.0 ± 0.7 | 0.259 |
| PC | 4.6 ± 0.7 | 0.973 | 9.3 ± 3.4 | < 0.001a | 2.8 ± 1.0 | 0.033* | 4.2 ± 0.7 | 0.680 |
| Oncology | 4.6 ± 0.8 | 0.957 | 7.6 ± 4.3 | 0.544 | 3.0 ± 1.0 | 0.242 | 4.2 ± 0.7 | 0.119 |
| Hospice | 4.6 ± 0.7 | 0.786 | 10.8 ± 3.1 | < 0.001 † | 2.2 ± 0.8 | < 0.001* | 4.3 ± 0.6 | 0.248 |
| Other | 4.8 ± 0.5 | 0.020 † | 7.1 ± 4.6 | 0.736 | 3.2 ± 1.0 | 0.869 | 4.1 ± 0.6 | 0.841 |
| Received PC education | 4.6 ± 0.8 | 0.795 | 8.3 ± 4.3 | < 0.001 † | 2.9 ± 1.0 | < 0.001* | 4.2 ± 0.7 | 0.033* |
| Experience in ANH in the past year | 4.6 ± 0.8 | 0.975 | 8.0 ± 4.0 | 0.001* | 2.9 ± 1.0 | 0.033* | 4.1 ± 0.7 | 0.426 |
Abbreviations: ANH, artificial nutrition and hydration; ICU, intensive care unit; PC, palliative care.
p value statistically significant at p < 0.05 using Mann–Whitney U test.
p value statistically significant at p < 0.05 using Kruskal‐Wallis test.
p value statistically significant at p < 0.05 using Welch's t‐test.
3.8. Difference in Attitudes Based on Socio‐Demographic Characteristics
A statistically significant difference was observed in HCPs’ attitudes towards the provision of ANH, based on their healthcare sector and working unit. HCPs working in the public sector expected a significantly higher burden of ANH compared to those not working in the public sector (p < 0.001). Participants who worked in PC and hospice units were more in agreement that there were limited benefits to providing ANH to cancer patients who are terminal (p = 0.033, p < 0.001, respectively), while HCPs who worked in ICU were significantly more optimistic about the potential benefits of ANH provision for cancer patients who are terminal (p < 0.001).
A significant difference was also observed between profession and benefit and burden attitudes (p < 0.001, p = 0.021, respectively). Results revealed that most dietitians exhibited greater optimism towards the potential benefits of ANH provision in terminal cancer care (3.7 ± 0.6), whereas most doctors agreed on the burdens of ANH provision (4.3 ± 0.6). Participants who received previous education on PC were less optimistic about the potential benefits of ANH provision and had a significantly higher burden perception of ANH provision compared to those who did not receive education on PC (p = 0.033). Participants who had experience with ANH in the past year agreed significantly less with the benefits of ANH provision (p = 0.033), but they did not have a significantly higher burden perception.
Overall, there was no statistically significant difference between religious preferences and benefits and burdens. However, a post hoc analysis indicated that Islamic participants agreed significantly more with the possible burdens of ANH than Christian participants (p = 0.021).
4. Discussion
HCPs in South Africa have demonstrated commendable comprehension of general PC principles. However, their knowledge of ANH provision in patients with terminal cancer was found to be suboptimal. In comparison to previous studies employing the same questionnaire, this study revealed that South African HCPs’ knowledge of PC and ANH was similar to that of Taiwanese HCPs [17]. and better than that of HCPs in Jordan [18]. The participants in this study demonstrated notably inadequate knowledge scores in the section addressing the administration and treatment objectives of ANH in patients with terminal cancer. Similar results were observed in an Italian study that was conducted among nurses, utilising the same data‐collection tool [16]. This lack of knowledge could be because ANH is viewed as a multifaceted intervention and the topic of ANH provision may not be included in basic PC education [34]. However, given that a significant proportion of participants in the present study had experience in providing care to patients with terminal cancer who received ANH, it is imperative to address this topic in PC education.
Despite a generally unoptimistic attitude towards ANH provision for patients with terminal cancer, participants expressed optimism regarding the potential psychological benefits of ANH provision for these patients. ANH can serve as a tangible means for HCPs to demonstrate care and support towards patients who are approaching the end of their lives. A common misconception among participants was that ANH could reduce dehydration‐induced delirium in patients with terminal cancer, which is not supported by the literature [8, 35].
Unlike previous international studies, a large proportion of the participants in this study demonstrated an awareness of the physiological changes that occur during the terminal stage of cancer and recognised that ANH is unlikely to improve the nutritional status of these patients [17, 18]. Participants were aware of the risks associated with the invasiveness of ANH and strongly agreed on its potential complications.
HCPs agreed that dietitians have a role in decisions regarding ANH provision and should be included in discussions with patients. Given that ANH is considered a medical intervention, clear goals are required before implementation [36]. Dietitians can contribute to discussions by presenting the potential benefits and expected burdens of ANH to patients and their families and can design appropriate nutritional care plans based on an interprofessional and patient‐centred approach [19]. This study found that compared to doctors, dietitians were more optimistic about the benefits of ANH provision for patients with terminal cancer and had lower ANH knowledge scores. These findings underscore the potential necessity for incorporating further education on this topic within the curriculum of dietetics undergraduate programmes in South Africa, and that it should also be included as a key component of post‐graduate programmes and emphasised through ongoing in‐service training.
Participants expressed a strong sense of duty to communicate with patients and their families throughout the disease trajectory. However, previous studies conducted in South Africa have shown that patients and their families often experience a lack of communication from HCPs regarding their prognosis and care plan [29, 37]. Despite agreeing on the importance of transparency, HCPs may struggle to communicate effectively due to the emotional weight of these topics. This lack of communication could inadvertently exacerbate emotional distress in patients and their loved ones, despite the HCPs’ intentions to minimise suffering [37]. The fact that participants valued the opinions of their colleagues (which could influence their practices) can be used to encourage a multidisciplinary approach to managing patients with terminal cancer. The different perspectives and expertise of the specialities in a multidisciplinary team could offer diverse insights during the decision‐making process [38].
The findings of this study demonstrate a significant difference in both knowledge scores and attitudes among participants based on their healthcare sector and unit of employment. Notably, participants in the public sector exhibited higher ANH knowledge scores and higher burden awareness. This may be attributed to limited access to hospice services or lack of awareness of the hospice services available in certain rural and remote areas of South Africa, resulting in a higher proportion of terminally ill patients seeking care at public clinics or hospitals [39]. As a result, HCPs working in the public sector may have greater exposure to patients with terminal cancer and be more familiar with the potential benefits and burdens associated with ANH in this patient population.
HCPs working in ICU had lower knowledge scores and were more optimistic about the benefits of ANH compared to HCPs working in palliative and hospice settings. This difference could be attributed to the distinct treatment goals and principles followed in each setting, with ICUs prioritising the saving and prolonging of life and PC and hospice units prioritising less invasive methods of symptom management and comfort care [32]. This study also demonstrated the effectiveness of education, as participants who had previously received PC education had significantly higher knowledge scores and more appropriate attitudes towards ANH provision in terminal cancer care. Ke et al. reported that participants in their study who received education on ‘critical thinking of providing ANH in terminal cancer patients’ displayed significantly higher knowledge scores and were less optimistic about ANH provision [40], indicating the value of education in improving the knowledge and attitudes of HCPs.
5. Conclusions, Limitations and Recommendations for Future Research
This study offers valuable insight into the knowledge, attitudes and practices of HCPs in South Africa concerning the provision of ANH for patients with terminal cancer. The results revealed that participants had inadequate knowledge of ANH provision and contradictory attitudes towards the potential benefits and burdens of ANH provision for this patient population. The misconceptions and lack of knowledge among HCPs can adversely impact the quality of care provided to cancer patients who are terminal. The study identified significant differences in knowledge scores and attitudes based on certain socio‐demographic factors, which suggests that resource distribution should focus on education in certain healthcare sectors and units to equip HCPs with up‐to‐date evidence and guidelines. Healthcare organisations and professional bodies should collaborate to develop clear and standardised national guidelines for ANH provision in terminal cancer patients. These guidelines should address indications for ANH provision, ethical considerations, informed consent procedures and a step‐by‐step decision‐making process.
The relatively smaller study sample and the use of purposive and convenience sampling may have an impact on the generalisability of the findings. Nevertheless, the study makes a novel contribution in terms of exploring aspects related to the provision of ANH for patients with terminal cancer in South Africa.
Various aspects of physical, psychosocial and spiritual support should be taken into consideration when providing care to cancer patients who are terminally ill. Since this study focuses on the ANH aspect of terminal care, further research is necessary to assess the knowledge, attitudes and practices of HCPs regarding (a) oral nutrition and hydration for cancer patients who are terminally ill and (b) patients who voluntarily stop eating and drinking, to gain a deeper understanding of the quality to terminal care delivered to South Africans. As the study was quantitative in nature, future research endeavours would benefit from incorporating a qualitative design to enhance the quality and depth of the information obtained from participants. This would allow for a more complete understanding of the participants’ attitudes and practices, thereby strengthening the validity and generalisability of the study's findings.
Author Contributions
Beatri Coetzee: conceptualisation, exploration, interpreting of data, writing of script. Janicke Visser: conceptualisation, writing – review and editing of script. Daan G. Nel: analysed the data.
Ethics Statement
Ethics approval was granted by the Stellenbosch University Health Research Ethics Committee (reference number: S21/09/180).
Conflicts of Interest
The authors declare no conflicts of interest.
1. Peer Review
The peer review history for this article is available at https://www.webofscience.com/api/gateway/wos/peer-review/10.1111/jhn.70060.
Acknowledgements
The authors would like to thank the associations, organisations and facilities that were willing to distribute the questionnaire among their members and employees. They would also like to thank all the HCPs who took the time to complete the questionnaire. The authors received no specific funding for this work.
Data Availability Statement
The data that support the findings of this study are available from the corresponding author upon reasonable request.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
The data that support the findings of this study are available from the corresponding author upon reasonable request.