Constipation Management in Palliative Care: A Survey of Practices in the United Kingdom

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1 238 Journal of Pain and Symptom Management Vol. 29 No. 3 March 2005 Original Article Constipation Management in Palliative Care: A Survey of Practices in the United Kingdom Margaret Goodman, RN, DipNurs, MA, MSc, Joe Low, BSc, MSc, PhD, and Susie Wilkinson, PhD, MSc, RN, RM, RNT, RCNT Marie Curie Palliative Care Research & Development Unit, Royal Free & University College Medical School, London, United Kingdom Abstract Fifty percent of patients admitted to hospices cite constipation as a concern. This study evaluates how constipation was managed in 11 hospices. Patients and nurses completed questionnaires at two time points: baseline and 7-10 days later. Outcomes were evaluated using a Constipation Visual Analogue Scale and a satisfaction with management of constipation questionnaire. A total of 475 patients participated; 413 completed both assessments. Forty-six percent of patients reported no constipation and 15% of patients reported severe constipation. For 75% of patients, no change in the perception of constipation was observed over the study period. Patients expressed satisfaction with their constipation management. The severity of constipation was overestimated by nurses in many patients. The findings indicate that constipation was being prevented or reasonably well managed. However, severe constipation continues to be a problem. Assessment of patients bowel function needs to be more rigorous and those identified as severely constipated need daily monitoring. J Pain Symptom Manage 2005;29: U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Constipation management, laxatives, palliative medicine, hospice care, nursing Introduction Constipation is a side effect of many of the drugs used to manage symptoms in palliative care and about 50% of patients admitted to British hospices cite it as a major concern. 1,2 Constipation has even been identified as the Address reprint requests to: Susie Wilkinson, PhD, Marie Curie Palliative Care Research & Development Unit, Royal Free & University College Medical School, Department of Mental Health Sciences, Rowland Hill Street, London NW3 2PF, United Kingdom. Accepted for publication: June 5, U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved. most troublesome side effect of pain management. 3,4 However, there has been little evaluation of the effectiveness of constipation management or the effect constipation has on quality of life. Similarly, there is little evidence to determine whether patients perception of bowel function differs from those caring for them. Constipation can cause a variety of physical symptoms, and in terminal illness, may be a cause of restlessness. In addition, there are significant psychological and social consequences associated with constipation that have the potential to reduce an individual s quality of life /05/$ see front matter doi: /j.jpainsymman

2 Vol. 29 No. 3 March 2005 Constipation Management in Palliative Care 239 The consequences of constipation are not limited to those being experienced by patients. It has been found that 80% of community nurses can spend up to half a day a week treating patients with constipation. 5 Furthermore, a significant number of calls to an out-of-hours district nursing service (5.5%) were directly related to constipation. 6 This is likely to be an under-representation since constipation is also identified during planned visits or other calls. These figures are likely to be higher in palliative care settings because of increased risk factors for constipation. The relative effects of various laxatives such as senna, 7 docusate, 8 Co-Danthrusate 9 and polyethylene glycol 10 in the management of constipation have been examined. Some studies have been in a palliative care setting. However, findings are inconclusive and collectively there is no evidence to date to suggest that one laxative is superior to another. The studies have tended to concentrate on the effectiveness of interventions to prevent or relieve constipation and used definitions that primarily focused on frequency of bowel action rather than a patientidentified concept of constipation and effectiveness of treatment. This study investigates the prevalence of constipation in patients receiving palliative care and evaluates patients and health professionals perception of the patients bowel function and their satisfaction with how it is managed. Methods A prospective survey used a questionnaire to determine patients perception of their bowel function, constipation symptoms, and constipation management at two time points. The questionnaire comprised two parts. To evaluate the patients constipation status, a Constipation Visual Analogue Scale (CVAS) was constructed. This was an 8-point scale, where a score of 0-1 indicates no constipation, 2-4 indicates constipation and 5-7 indicates severe constipation. This was used by the patients and nurses caring for them. The research nurse gave both the patients and their nurses an explanation as to how to interpret the scores of the CVAS. For the management of patients constipation, four further questions were asked to determine the advice provided, satisfaction with treatment, explanation of need for laxatives and patient preference for laxatives. Patients use of medication, specifically laxatives, opioids and other constipating medication, was collected from the patient records. Data Analysis All data were entered into SPSS version 10. Descriptive statistics (frequency and percentages) were used to describe patients constipation, the assessment and management of constipation and the types of laxative being taken during the study period. Efficacy of interventions was calculated by evaluating the change in patients perception of their constipation between the two questionnaires and conducting a paired t-test looking at patients perceptions. Comparison was made between patients and nurses on levels of agreement on bowel status. Ethical approval was obtained from the Manchester Multi-Centre Research Ethics Committee. Procedure Recruitment began in May 2001 and continued until September The research nurse spent a two-week period at each center. All inpatients or patients attending palliative care day services (PCDS) in 11 UK-wide specialist palliative care centers (SPCC) during a defined two-week period were eligible for recruitment to the study. Each patient was approached for inclusion by the research nurse. Participating patients gave informed written consent before completing the baseline questionnaire (t1). They were then required to complete the second questionnaire 7 10 days later (t2). Patients notes were also reviewed for demographic and drug data after completion of each questionnaire. In addition, patients were asked if they were happy for their named nurse to participate in a parallel study. If consent was given, the nurse was invited to participate in the study and to complete the relevant questionnaires at baseline (t1) and 7-10 days later (t2). Results Recruitment Six hundred and eighteen patients were eligible for recruitment and 475 agreed to participate, giving a recruitment rate of 77%. Patient

3 240 Goodman et al. Vol. 29 No. 3 March 2005 exclusion was primarily due to patient illness (59), cognitive impairment/confusion (45), intestinal obstruction (17), refusal (16), imminent transfer to other care settings (4), and language difficulties (2). Generally, inpatients were six times more likely to be excluded than PCDS patients. Of the 475 patients recruited, 413 (87%) completed the questionnaires at both time points: 207 inpatients and 206 PCDS patients. The main reasons for patient non-completion were patient death (24/62); patient being too ill (20/62); patient not attending PCDS (6/62); or patient discharged (6/62). Nurse questionnaires at baseline were completed for 449 (95%) patients, while 346 (84%) patients had nurse questionnaires completed at both time points. There was little difference in the rates of completion between inpatient and PCDS nurses. Reasons for non-completion included the pressure of work; absence of the named nurse; and lack of sufficient knowledge of the patient. This latter reason was usually given when nurses were requested to complete questionnaires relating to newly admitted patients or if the nurse had only returned to duty after days off. The decrease in numbers of completed follow-up nurse questionnaires for the study population was linked with patient discharges and a reluctance of some nurses to complete a second questionnaire on the same patient. Demographic Characteristics The patient sample consisted of 215 (45%) males and 260 (55%) females, with a mean age of 68.5 years (SD 13.8 years). The patients were predominantly white. Patients were equally matched for age and gender, though the PCDS sample had proportionally more people from ethnic minority groups than the inpatients. Four hundred and fifty-five (96%) recruited patients had a cancer diagnosis, with no differences in the pattern of cancer diagnosis between the inpatient and PCDS populations. There were, however, more non-cancer patients in PCDS than in the inpatient population. Concomitant Medication/Opioids Patients were taking a wide range of medication: 77% (319/413) were taking analgesics, of which 165 were using opioids; 41% (167/413) were on steroids; 37% (153/413) were on antiemetics, 32% (131/413) were on anxiolytics; 29% (121/413) were on antidepressants; and 15% (62/413) were on anticonvulsants. A comparison showed that inpatients were taking more medication than PCDS patients. Patients Constipation Status Thirty-nine percent of patients perceived themselves to be constipated at baseline, with 15% perceiving themselves as severely constipated; 46% of patients did not feel they were constipated (Table 1). Further comparison found that the proportion of patients who perceived themselves to be either constipated or not constipated changed little between the two questionnaires. A comparison of how nurses assessed patients constipation with patients own perceptions is demonstrated in Table 2. Over half the nurses (193/359) matched the constipation ratings given by their patients. Overall, the level of agreement between nurses and their patients was poor (K 0.097). Generally, nurses tended to overestimate: a) the number of patients who were constipated and b) the severity of those who were constipated. Forty-four percent (157/ 359) of nurses rated their patients as not constipated compared with 61% (218/359) of their patients. Likewise, 16% (56/359) of nurses rated their patients as being severely constipated compared with 7% (25/359) of their patients. Patterns of Laxative Use in the Management of Constipation Laxatives were being used by over half the patient sample during the two-week duration of the study. Overall, 265/400 (57%) patients at baseline and 221/393 (56%) patients were using laxatives (Table 3). Further analysis on Table 1 Patients Perceived Constipation By Assessment Time (using CVAS) Time of assessment Follow-up No. of patients with Baseline patients patients No constipation 211 (46%) 197 (49%) Constipation 177 (39%) 154 (39%) Severe constipation 70 (15%) 49 (12%) Total number of patients

4 Vol. 29 No. 3 March 2005 Constipation Management in Palliative Care 241 Table 2 Comparison of Patients Ratings with Nurses Ratings of Patients Level of Constipation Patients constipation rating Nurses constipation rating No constipation Constipation Severe constipation Total No constipation Constipation Severe constipation the 386 patients who had complete data on laxative use revealed that 150 (39%) patients were not taking any laxatives at either time point. There was little variation in the types of laxatives being taken by patients over the study period. Stimulant laxatives were the most commonly used group of laxatives followed by osmotic laxatives. By contrast, very few patients (3%) were taking fecal softeners, bowel cleansing solutions or bulk-forming laxatives (Table 3). More detailed analysis showed that danthron was the most commonly prescribed laxative, followed by lactulose and senna. However, the patterns of laxative use varied between the SPCCs. Do Patients Show Improvement in Their Constipation Status Following a 7 10 Day Period of Care from a Specialist Palliative Care Center? Most patients (75%) recorded no change in their constipation following a 7 10 day period of care in a SPCC. Fifteen percent of patients thought that their constipation had improved during this time period, while 10% felt that it Table 3 Pattern of Laxative Prescription (n 413) Laxative group Baseline Follow-up Stimulants 171 (41%) 172 (42%) Osmotics 105 (25%) 107 (26%) Combination of laxatives 61 (15%) 69 (17%) (laxatives prescribed from different laxative groups) Bulkers 7 (2%) 7 (2%) Bowel cleansers 4 (1%) 3 (1%) Softeners 2 (0%) 1 (0%) Number of patients who 228 (55%) 221 (54%) have taken any laxative Number of patients not taking any laxatives Missing Total sample had gotten worse (Table 4). A breakdown of results into the two care settings showed two main findings. First, a higher proportion of inpatients (25%) perceived that their constipation had improved following the period of care from a SPCC compared with PCDS patients. Second, proportionally more PCDS patients (93%) perceived no change in their constipation compared with the inpatient group. An analysis was carried out to evaluate the impact of a 10-day period of care in a SPCC on the 388 patients who completed the CVAS at both time points. This found that patients CVAS scores decreased by a mean of 0.2 points, which indicated a slight, statistically significant but not clinically significant improvement in patients constipation (t 2.477, P 0.014). Is the Use of Laxatives Effective in the Management of Constipation? There was little change in constipation status between users and non-users of laxatives from the first to the second assessment. A mean difference of 0.06 points (95% CI: 0.40, 0.28) in CVAS scores between the mean change scores of the two groups (t 0.34, P 0.734) indicated that there was no clinical or statistically significant difference between them in terms of constipation improvement. Most of the patients who were constipated at the follow-up questionnaire (68% of constipated and 80% of severely constipated) were taking laxatives. However, 43% of non-constipated patients were also taking laxatives (Table 5). There was little difference in the patterns of laxative use between patients with improved or worsening constipation. Generally laxative use between these two groups was equally balanced, though patients with improved constipation were more likely to be using laxatives such as lactulose, Co-Danthramer, Co-Danthramer

5 242 Goodman et al. Vol. 29 No. 3 March 2005 Table 4 Change in Patients Constipation Status Between the Questionnaires Less constipation Same constipation Worse constipation ( 7 to 2 CVAS) ( 1, 0, 1 CVAS) (2 to 7 CVAS) CVAS total (n 388) 59 (15%) 291 (75%) 38 (10%) CVAS in-patient (n 199) 50 (25%) 114 (57%) 35 (18%) CVAS PCDS (n 189) 9 (5%) 177 (93%) 3 (2%) Forte and Fybogel (Table 6). Interestingly, 29% of this particular patient sample was not taking any laxatives, while a further 23% could not remember what they were taking (Table 6). Are Laxatives Prescribed for Patients Using Opioids? Table 7 illustrates that 74% of patients (165/ 223) using strong opioids were using laxatives at follow-up. It also shows that patients not taking strong opioids or laxatives (73/104; 70%) were less likely to be constipated than patients on strong opioids with laxatives (32/58; 55%), but no statistical difference existed between these two groups (χ , d.f 1, P 0.055). Likewise, patients taking strong opioids with laxatives (30/165; 18%) were more likely to be more severely constipated than patients using strong opioids without laxatives (7/58; 12%), but there were no statistical differences between these two groups on their level of severe constipation (χ , d.f 1, P 0.163). Patients and Nurses Perception of Constipation Management Eighty-two percent of patients were at least moderately satisfied with the way their constipation was being dealt with in the SPCCs. However, only 56% of patients could recall being asked about their bowel habits by a health professional at admission. Furthermore, 66% of patients had not recently been given any advice about how to avoid constipation. Few patients (28%) could recall any discussion with a health professional about preference for particular laxatives and only 51% of patients (of those who felt this was an appropriate question) were given an explanation of why they needed laxatives. An analysis of nurses perceptions of bowel management of their patients showed a similar trend, with at least 87% of nurses being at least moderately satisfied with the advice and care that they were providing on constipation avoidance. Furthermore, 81% of nurses had asked patients about their bowel habits at admission to the SPCC. However, only 39% of nurses had discussed with their patients their preference for particular laxatives and 21% of nurses were unable to identify whether any health professional had explained the need for laxatives. Discussion Previous studies have suggested that 95% of cancer patients cite constipation as a major problem. 3 This study, however, found that 54% of patients perceived themselves to be constipated, of whom 15% were severely constipated. These prevalence rates are consistent with other studies of palliative care populations, which have cited a 50% prevalence of constipation. 1,2 Our findings suggest that for the majority of specialist palliative care patients, constipation was being prevented or reasonably well managed. Most patients expressed a degree of satisfaction with the way their constipation was managed. However, constipation continued to be a major problem and a concern for a significant proportion of patients. In this subgroup, the perception of severe constipation persisted over the study period. A concern was raised by the fact that 26% of patients taking strong opioids were not using laxatives, a finding which Table 5 Number of Patients Taking Laxatives By Constipation Status (using CVAS) Not constipated Constipated Severely constipated Total Taking laxatives 77 (43%) 102 (68%) 37 (80%) 216 Not taking laxatives 102 (57%) 48 (32%) 9 (20%) 159 Total

6 Vol. 29 No. 3 March 2005 Constipation Management in Palliative Care 243 Table 6 Comparison of Laxative Use Between Patients With Improved or Worsening Constipation Constipation improved Constipation worsened (n 59) (n 38) Total (n 97) Lactulose 6 (10%) 2 (5%) 8 (9%) Co-Danthramer 4 (7%) 2 (5%) 6 (6%) Senna 3 (5%) 2 (5%) 5 (5%) Polyethylene glycols (Movicol) 3 (5%) 3 (8%) 6 (6%) Co-Danthramer forte 2 (3%) 0 2 (2%) Fybogel 3 (5%) 0 3 (3%) Fruit and fiber 1 (2%) 0 1 (1%) Arachis oil enema 0 1 (2%) 1 (1%) Combined stimulant and osmotics 3 (5%) 3 (8%) 6 (6%) Multiple stimulants 2 (3%) 0 2 (2%) Multiple osmotics 0 1 (2%) 1 (1%) Combined bulk-former and stimulant 1 (2%) 0 1 (1%) Combined bulk-former and osmotics 0 1 (2%) 1 (1%) Not applicable 16 (28%) 12 (33%) 28 (29%) Don t know 13 (22%) 9 (25%) 22 (23%) Missing 2 (3%) 2 (5%) 4 (4%) goes against recognized palliative care guidelines. 11 However, 55% of these patients did not perceive themselves to be constipated and so may have declined an ongoing laxative prescription. It was also interesting to find that severe constipation was proportionally more prevalent for patients taking strong opioids and using laxatives than for those not using laxatives. This supports a recent finding that factors other than opioid dose and physical functioning may make a significant contribution to continuing constipation in this group of patients. 12 There was little variation in the type of laxatives being used by patients, with stimulant and osmotic laxatives being the most common group, and danthron, lactulose and senna being the most commonly prescribed laxatives. Nevertheless, most patients showed no change in their constipation following a period of care in a SPCC and further analysis showed little Table 7 The Use of Laxatives in Patients on Strong Opioids at Follow-Up Strong opioids Yes No Total Patients not taking laxatives No constipation Constipation Severe constipation Total Patients taking laxatives No constipation Constipation Severe constipation Total relationship between laxative use and improvement in constipation. Patients whose constipation status worsened were often on similar laxative regimens to those whose constipation status improved. There also seemed to be some confusion about the mode of action of laxatives, resulting in some patients taking more than one laxative from the same group. This study showed that 50% of palliative care nurses accurately assessed the constipation status of their patients, but that they also tended to overestimate the severity of patients constipation. Anecdotal evidence gained by the research nurse in talking with patients suggested that assessment of bowel function by healthcare practitioners was primarily related to frequency of bowel movements, and that patients were rarely asked about stool type and/or whether they were having any difficulty passing stools. In effect, assessment of bowel function by nurses was confined to frequency and not the more probing assessment that is required for good palliative care. 13 However, the study showed that most patients were at least moderately satisfied with the treatment of their constipation, although many did not remember a health professional giving them an explanation of a need for laxatives, advice on how to avoid constipation or any discussion about their preference for particular laxatives. Limited assessment of bowel function and ineffective advice on how to avoid becoming constipated may be compounded as patients transfer between care settings. If there is

7 244 Goodman et al. Vol. 29 No. 3 March 2005 an expectation that palliative care practitioners will be undertaking an impeccable assessment, that assessment must be detailed and patients given effective advice on how to avoid becoming constipated. The good response rate from both patients and nurses from the SPCCs makes it possible to generalize the conclusions of this study to the palliative care community. However, the use of a questionnaire format did not allow for an in-depth exploration of responses. By limiting the questions to the two weeks prior to the assessment, information about previous experiences of constipation was lost. This may mean that data on previous and now resolved constipation problems were not captured. There were also difficulties in getting nurses to send back their follow-up questionnaires. Some of the information obtained could have been acquired from the nurses notes and it may have been more effective to conduct semi-structured interviews with the nurses rather than asking them to complete two questionnaires. This study did not aim to explore laxative doses and further studies are needed which specifically look at this aspect of constipation management. This study has highlighted the fact that there is a need for more rigorous assessment of the bowel function of palliative care patients, especially when patients are severely constipated. Advice on the avoidance of constipation and how laxatives can be used most effectively has to be ongoing, linked to individual patient response and consistent across care settings. Finally, there is a need to ensure that the definition of constipation being used is common to patients and their caregivers, i.e., a frequency of bowel movements and easy passage of stool that maintains an individual s comfort. Acknowledgments The authors are grateful to Janssen Cilag Ltd. for their financial support for this study, and to the patients and staff of all the Marie Curie Cancer Care hospices for their assistance and support of this study. References 1. Fallon M, Walsh J. The management of gastrointestinal symptoms. In: Faull C, Carter Y, Woof R, eds. Handbook of palliative care. Oxford: Blackwell Science, 1998: Sykes NP. Constipation and diarrhoea. In: Doyle D, Hanks G, MacDonald N, eds. Oxford textbook of palliative medicine. Oxford: Oxford Medical Publications, 1993: Robinson C, Fritch M, Hullett L, et al. Development of a protocol to prevent opioid-induced constipation in patients with cancer - A research utilisation project. Clin J Oncol Nurs 2000;4(2): Miaskowski C. Putting the cancer pain guideline into practice. Capsules and Comments in Oncology Nursing 1995;3(1): Poulton B, Thomas S. The nursing cost of constipation. Prim Health Care 1999;9(9): Withnell B. A protocol for treating acute constipation in the community setting. Br J Community Nurs 2000;5(3): Agra Y, Sacristan A, Gonzalez M, et al. Efficacy of senna versus lactulose in terminal cancer patients treated with opioids. J Pain Symptom Manage 1998;15(1): Hurdon V, Viola R, Schroder C. How useful is docusate in patients at risk for constipation? A systematic review of the evidence in the chronically ill. J Pain Symptom Manage 2000;19: Sykes NP. A volunteer model for the comparison of laxatives in opioid-related constipation. J Pain Symptom Manage 1996;11: Culbert P, Gillett H, Ferguson A. Highly effective new oral therapy for faecal impaction. Br J Gen Pract 1998;48: Doyle D, Cherny N. Opioid analgesic therapy. In: Doyle D, Hanks G, MacDonald N, eds. Oxford textbook of palliative medicine, 2nd ed. Oxford: Oxford Medical Publications, 1998: Bennett M, Cresswell H. Factors influencing constipation in advanced cancer patients: A prospective study of opioid dose, danthron dose and physical functioning. Palliat Med 2003;17: WHO. National cancer control programs: policies and managerial guidelines, 2nd ed. Geneva: World Health Organization, 2002.