The Prevalence of Bowel Problems Reported in a Palliative Care Population

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1 Vol. 43 No. 6 June 2012 Journal of Pain and Symptom Management 993 Original Article The Prevalence of Bowel Problems Reported in a Palliative Care Population Katherine Clark, MB BS, MMed, FRACP, FAChPM, Joanna M. Smith, BPsych, and David C. Currow, BMed MPH, FRACP Department of Palliative Care (K.C.), Calvary Mater Newcastle, Waratah, and School of Medicine and Public Health (K.C.), University of Newcastle, Callaghan, New South Wales; Silver Chain Nursing Association (J.M.S.), Perth, Western Australia; and Discipline, Palliative and Supportive Services (D.C.C.), Flinders University, Daw Park, South Australia, Australia Abstract Context. Constipation and other disturbances of bowel function are distressing problems for people with specialist palliative care needs. Recent observations suggest that such problems may worsen as people become more unwell, but the changes in intensity over time are not well documented. Objectives. The objectives of this work were to understand the prevalence, intensity, and progression of self-reported bowel disturbances across a community palliative care population, which included people with cancer and noncancer diagnoses. Methods. All people referred to a community-based palliative care service over a period of 6.3 years had their bowel problem scores reported, using a numerical rating score at every clinical encounter until their death, at four discrete time points, namely, 90, 60, 30, and seven days before death. This allowed change over three time periods to be considered. At the same time, other symptom scores were collected including nausea, fatigue, pain, appetite problems, and breathing problems. Patients were categorized according to the underlying disease that accounted for their referral to palliative care, namely, cancer diagnoses (upper gastrointestinal cancers, lower gastrointestinal cancers, cancers of the associated digestive organs, and other cancers) and nonmalignant diagnoses. Group differences over the time periods were assessed using analysis of variance. Bivariate analysis was used to explore the relationship between bowel disturbances and other symptoms using Spearman s Rho correlation. Results. For 7772 patients, data were collected an average of 22.5 times, generating 174,783 data collection points over an average of 98.6 days on the service. At the time of referral to the service, 3248 (42.4%) people had disturbed bowel scores, 548 (7.2%) of whom described these as severe. Only 1020 (13.1%) people never described disturbed bowel function over their time in palliative care. At each time point, approximately one-third were experiencing disturbed bowel function, with proportionally greater numbers of people experiencing more Address correspondence to: Katherine Clark, MB BS, Department of Palliative Care, Calvary Mater Newcastle, Edith Street, Waratah, New South Crown Copyright Ó 2012 Published by Elsevier Inc. on behalf of U.S. Cancer Pain Relief Committee. All rights reserved. Wales 2298, Australia. katherine.clark@ calvarymater.org.au Accepted for publication: July 12, /$ - see front matter doi: /j.jpainsymman

2 994 Clark et al. Vol. 43 No. 6 June 2012 significant problems as death approached (X 2 (9) ¼ 119.3; P < 0.001). Most referrals to the service were because of cancer diagnoses, with no significant differences noted between the bowel disturbance scores of those with cancer diagnoses compared with those with nonmalignant disease. Associations between bowel problem score and appetite problems, nausea, breathing problems, fatigue, and pain were explored. Although weak, there were statistically significant associations between all symptoms and bowel problem scores except for breathing problems. Conclusion. In conclusion, disturbed bowel function consistently remains a problem for people under the care of palliative care services, with the proportion of people with severe problems increasing as death approaches. This is despite the time and number of interventions currently used to palliate these problems. J Pain Symptom Manage 2012;43:993e1000. Crown Copyright Ó 2012 Published by Elsevier Inc. on behalf of U.S. Cancer Pain Relief Committee. All rights reserved. Key Words Bowel problems, prevalence, intensity, palliative care Introduction The prevalence of constipation is quoted to be between 30% and 90% in palliative care patients, with such wide ranges likely to be reflective of several issues including the lack of agreed definition of constipation between health professionals and patients, 1 and the fact that most reports do not define the stage of illness that people are in when data collection was undertaken. To improve the quality of information that describes bowel problems in palliative care, these and other issues require greater clarification. Like other symptoms, the experience of constipation is highly personal. However, it is often not clear from reports as to whether the incidence and prevalence figures have been extrapolated from self-reporting symptom scales, criteria such as Rome criteria, 2 the frequency with which bowel movements are charted, or, most simply, the number of laxatives prescribed. As noted, the experience of bowel disturbances is highly subjective, suggesting that the optimal approach to define the scope of the problem is from the patient s perspective. Like some other symptoms, recent observations suggest that, as people become sicker, bowel problems, particularly constipation, may become more problematic. 3,4 In some respects, this is unsurprising as the numbers of factors that may contribute to bowel problems are likely to be numerous in any individual receiving palliative care at any one time point in their disease trajectory. The evidence that underlies risk factors for bowel problems in palliative care is robust for opioids but less so for other factors. 5 Medications with anticholinergic adverse effects have been identified as increasing the likelihood that more laxatives will be prescribed. 6 Other factors include deteriorating performance status, 7 reduced oral intake, 8 metabolic disturbances, 9,10 and the sites of the primary cancer and metastases. Constipation and other disturbances of bowel function have been identified as problems that may lead to considerable distress for the individual. Furthermore, bowel care has been identified as a task that occupies significant amounts of palliative care health professionals time. 11 These observations suggest that the problem requires careful examination with well-executed studies to 1) objectively define the magnitude of the problem, 2) define the success or otherwise of symptom relief interventions, and 3) allow informed workforce planning. The first aim of this study was to better understand whether self-reports of bowel disturbances change as death approaches, in a consecutive cohort of people cared for by a large regional metropolitan palliative care service. The second aim was to begin exploration, using bivariate analysis, of whether there were associations between constipation and other factors

3 Vol. 43 No. 6 June 2012 Bowel Problems: Prevalence and Intensity 995 including stage of illness and other symptoms: pain, breathing problems, nausea, and fatigue. The objectives of the study were to understand the prevalence, intensity, and progression of self-reported bowel problems across a community palliative care population, which included people with cancer and noncancer diagnoses. The primary null hypothesis was that there were no differences in the way that bowel problems were experienced over the time that people spent under the care of a palliative care team. The secondary null hypothesis was that there is no relationship between the other symptoms and bowel problems. Methods Study Setting Silver Chain Hospice Care Service (SCHCS) is the sole regional community palliative care program covering all the metropolitan area of Perth, Western Australia. The SCHCS uses an interdisciplinary model of care provision. The team comprises general practitioners, registered nurses, care aides, volunteers, counselors, and pastoral care workers. Registered nurses are available 24 hours per day, seven days per week, with support available after hours from the general practitioners and clinical nurse consultants. The service receives approximately 1500 referrals annually for palliative care and is free of charge to patients with life-limiting illnesses (charges covered by state and federal health care funds). Study Population The study used data from a consecutive cohort of 7772 patients seen by SCHCS over a period of 6.3 years (until April 2010). The study was approved by the Silver Chain Human Research Ethics Committee. Data Collection From SCHCS Records All data were collected contemporaneously as part of routine practice for each face-toface visit by a health professional. Deidentified data used for this project included demographic characteristics (age, gender, and date of death), clinical data describing the primary illness that accounted for referral to specialist palliative care, and clinical data recorded at each contact with the patient. Patient-reported symptom scores for bowel problems, pain, insomnia, nausea, breathing problems, appetite problems, and fatigue were collected using the validated Symptom Assessment Scale. 12 This scale uses a numeric rating scale score to report the severity of symptoms experienced, where 0 ¼ no problems experienced and 10 ¼ the worst imaginable problems experienced. The Symptom Assessment Scale does not provide an indepth assessment of individual symptoms but serves as a screening tool to identify troublesome symptoms that warrant more attentive and immediate clinical investigation and comprehensive assessment. 13 Other clinical data were collected at contacts with patients that took place during each phase of illness. Illness phase is a validated descriptive tool to communicate how stable or otherwise a person is in his/her disease trajectory; four clinical phases have been identified: stable, unstable, deteriorating, and terminal. Definitions are summarized in Table Data Analyses The demographic data are reported using descriptive statistics. To conduct a longitudinal analysis, the time points of interest were calculated backward from death. This allowed data to be analyzed at the same points before death regardless of the time before death the patients were referred to the palliative care service. This also allowed prevalence and incidence of reports of disturbed bowel habits to be charted at discrete time points, permitting changes over time to be evaluated. Four time points were chosen as this resulted in three discrete time periods over which to consider change with sufficient numbers of people alive at each point to have data available. The discrete time points were 90, 60, 30, and seven days from death, with symptom scores incorporated into the analysis if 1) a visit had occurred exactly on the day that proved to be 90, 60, 30, or seven days from death, and 2) a visit had occurred three days either side of the day that proved to be 90, 60, 30, or seven days from death. The intensity of bowel problems also was plotted backward from death using a numerical zero to 10 score where 0 ¼ no symptoms and 10 ¼ the worst imaginable problem. The intensity was substratified into four levels:

4 996 Clark et al. Vol. 43 No. 6 June 2012 Phase Type Stable Unstable Deteriorating Terminal Table 1 Phase Definitions 14 Phase Description Symptoms are adequately controlled by established management. Further interventions to maintain symptom control and quality of life have been planned. The situation of the family/carers is relatively stable, with no new issues apparent. The patient experiences the development of a new unexpected problem or a rapid increase in the severity of existing problems, either of which requires an urgent change in management or emergency treatment. The family/carers experience a sudden change in their situation requiring urgent intervention by members of the multidisciplinary team. The patient experiences a gradual worsening of existing symptoms or the development of new but expected problems. These require the application of specific plans of care and regular review but not urgent or emergency treatment. The family/carers experience gradually worsening distress and other difficulties, including social and practical difficulties, as a result of the illness of the person. Death is likely in a matter of days and no acute intervention is planned or required. Typically in this phase, people are weak, essentially bedbound, drowsy for extended periods, disoriented for time and have a severely limited attention span, increasingly disinterested in food and drink, often finding it difficult to swallow medication. This requires the use of frequent, usually daily, interventions aimed at physical, emotional, and spiritual issues. 0 (none), 1e3 (mild), 4e6 (moderate), and 7e10 (severe). Group differences were assessed using analysis of variance. Bivariate analysis was used to explore the relationship between bowel problem scores and other symptoms, using Spearman s Rho correlation. Analyses between the bowel problem score and each of the symptoms at each time point were undertaken separately. Data were analyzed using Stata 11.2 software (StataCorp LP, College Station, TX). Results Descriptive Data All referrals to SCHCS were included except those clients who had received this service for less than two weeks before death. These people were omitted from the analysis. The resulting sample included the records for 7772 clients. On average, patients were seen 22.5 times between referral and death by the community palliative care team, with the average time from referral to death being 98.6 days (SD 106.5; range 14e1530), thus generating 174,783 data collection points. Demographics are summarized in Table 2. Just over half the people referred were male, with the mean age at referral being 68.7 years (SD 14.1; range 0e104 years). Most people referred had a cancer diagnosis (94%), with most of these cancers arising from outside the gastrointestinal (GI) tract. Disturbed Bowel Function at Referral to Palliative Care From the total population of people referred to this palliative care service, at the time of referral, 42.2% (n ¼ 3248) had disturbed bowel function, as summarized by the bowel scores. Of these, 548 (7.2%) described the bowel disturbance as severe. Regardless of the time referred before death, people with cancers arising from the lower GI tract had significantly higher bowel problem scores on admission than the other groups examined. Prevalence and Severity of Bowel Disturbances Over Time Of the cohort of people who survived 90 days while under the care of the palliative care Variable Age at referral Time of referral until death (days) Table 2 Demographic Details Descriptive Statistics Mean 68.7, SD 14.1, minimum 0, maximum 105 Mean 98.6, SD 106.5, minimum 14, maximum 1530 Number of visits Mean 22.5, SD 24, minimum 1, maximum 634 Gender, n (%) Female 3411 (43.9) Male 4356 (56.1) Not specified 5 (0.1) Diagnosis, n (%) Noncancer 473 (6.1) Cancer 7299 (93.9)

5 Vol. 43 No. 6 June 2012 Bowel Problems: Prevalence and Intensity 997 Fig. 1. Collated bowel problem scores over time. service, only 13% (n ¼ 1020) consistently had scores of zero over this period. Ninety days before death, 2274 bowel problem symptom scores were collected. Of these, 26.8% (n ¼ 602) were experiencing bowel symptoms of any severity. At 60 days before death, 28.24% (n ¼ 928) were reporting bowel problems of any severity. Between 30 days before death and seven days before death, the total numbers of people with any problems rose to the almost identical figures of 33.7% (n ¼ 1875) and 35.2% (n ¼ 1920), respectively (Fig. 1). Although the total percentages of people reporting any bowel disturbance remained reasonably consistent, closer examination of these figures revealed that the proportion of visits where people were reporting bowel disturbances in the moderate-to-high range increased as people neared death, with a smaller proportion of people reporting zero and a higher proportion of people scoring moderate-to-high scores (Χ 2 (9) ¼ 119.3; P < 0.001) (Fig. 1). When only the severe bowel problem symptom scores were examined from individual visits, at 90 days before death, 2.33% (n ¼ 53) described such problems. At 60 days, this rose to 2.5% (n ¼ 83). This figure continued to climb, as people being visited became weaker, to 3.9% at 30 days and 4.1% at seven days before death. This is highlighted in Fig. 2, where the trajectory of severe scores is remarkably consistent over time. It is notable from this graph that the numbers of those experiencing severe scores do not trend downward like the mild-to-moderate scores. Disturbed Bowel Function by Diagnosis Most referrals to this palliative care service were because of a cancer diagnosis. Overall, there was no significant difference in the severity of bowel disturbances experienced by those with cancer compared with those with nonmalignant disease. The cancer diagnoses were broken down into subgroups. There were cancers deemed most likely to affect the gut, that is, cancers of GI origin and the affiliated organs of digestion, such as pancreatic cancers or cancers of the liver and biliary tree, and other cancers arising external to any part of the GI tract. Fig. 2. Trajectory of Symptom Assessment Scale bowel problems from 90 days until death in each category.

6 998 Clark et al. Vol. 43 No. 6 June 2012 Fig. 3. Change in Symptom Assessment Scale bowel problem score (range 0e10) over time by diagnosis. GI ¼ gastrointestinal. At referral to the service, it was notable that the group statistically most likely to have higher bowel problem scores compared with the other cancer and noncancer diagnoses were those recorded from people with lower GI cancers (P ¼ 0.003). A similar observation was noted from visits made at 60 days before death. However, at 30 days and seven days before death, the mean bowel problem scores for both upper and lower GI cancer stabilized, whereas the other diagnoses scores continued to rise (Fig. 3). Bivariate Analysis Associations between bowel problem scores and appetite problems, nausea, breathing problems, fatigue, pain, and phase change were explored. Not surprisingly, this was a symptomatic group of people with the most frequently reported symptom being fatigue, regardless of the time before death (Table 3). There was a statistically significant association between each of the symptoms and bowel problems, except for breathing problems. Although statistically significant, the relationships were weak (Table 3), with the strongest relationships noted for appetite problems and nausea. As seen in Fig. 4, bowel problem scores were significantly higher when patients were in an unstable phase compared with the other phases (F (3, 161,187) ¼ 884.3; P > 0.001). This was apparent for both GI cancers and other diagnoses. Additionally, on average, clients with GI cancers had significantly higher bowel scores at each phase except for the terminal phase, where clients with other diagnoses were noted to have significantly higher mean bowel disturbance scores (Fig. 4). Table 3 P Scores for Correlation Between SAS Bowel Scores and Other SymptomsdAll Patients P Scores for Correlation Between SAS Bowel Problem Scores and Other SymptomsdAll Patients Seven Days % Experiencing Symptom of Any Severity Seven Days P Scores for Correlation Between SAS Bowel Score Problem and Other SymptomsdAll Patients 30 Days % Experiencing Symptom of Any Severity 30 Days P Scores for Correlation Between SAS Bowel Problem Scores and Other SymptomsdAll Patients 60 Days % Experiencing Symptom of Any Severity 60 Days P Scores for Correlation Between SAS Bowel Problem Scores and Other SymptomsdAll Patients 90 Days % Experiencing Symptom of Any Severity 90 Days Symptom Appetite problems a a a a Nausea a a a a Breathing problems Fatigue a a a a Pain a a a a SAS ¼ Symptom Assessment Scale. a P <

7 Vol. 43 No. 6 June 2012 Bowel Problems: Prevalence and Intensity 999 Fig. 4. Mean bowel problem score by phase of illness. GI ¼ gastrointestinal. Discussion These findings reflect the prevalence and intensity of self-reported bowel problems in people under the care of a specialist palliative care team over time. Regardless of the time before death, the data presented here consistently suggest that approximately one-third of the population suffered at least a degree of bowel problems. Furthermore, as people became sicker and more unstable, those who were experiencing bowel symptoms were more likely to report these as more severe than those they had experienced at other times in their disease trajectory. This is concerning as it suggests that, despite the amount of time and number of interventions routinely prescribed, people continue to have bowel disturbance symptoms. Given the detrimental effects that such symptoms may have on overall quality of life, there is an imperative to explore ways to better palliate these problems. The descriptive data presented here offer little insight as to why bowel symptoms worsen rather than improve over time. It is highly likely, however, that the reasons are multitude. Other data report that as people become more unwell, the number of medications prescribed that impose anticholinergic effects increases. 15,16 Furthermore, people become less independent, less mobile, and their oral intake tends to lessen considerably. 17 Whatever the causes, it is still unclear how reversible or otherwise these changes in bowel function are, what interventions are likely to afford the best palliation, and for how long clinicians should persist in trying to restore bowel function as life shortens. At the time of referral to palliative care services, it was interesting to note that people with lower GI cancers had significantly higher bowel scores. However, closer to death, the problems became more pronounced in upper GI cancers. It is not possible to comment on whether this is an inherent feature of upper GI cancers or whether this is secondary to other problems likely to be experienced by people with upper GI cancers such as nausea, anorexia, and weight loss. However, it was notable that the data confirmed an association between bowel disturbance symptoms and reports of nausea and impaired appetite. These preliminary observations of symptom clustering around GI problems require greater scrutiny. In particular, there is a need to explore how each individual symptom in this group may impact on the other symptoms. This becomes even more important when the possibility that modifying one problem may beneficially impact another, allowing exploration of alternative therapeutic approaches. The challenge when exploring this further will be to understand to what degree gut disturbances occur in context with other symptoms, what the impact is of the adverse effects of medications on the development of new symptoms, and which symptoms occur as a result of the underlying disease that resulted in referral to palliative care. The highest scores overall for bowel disturbances were reported when people were reported as unstable. This is not surprising as unstable phases are a time where existing symptoms worsen or new symptoms develop. However, as previously observed, it is worrying that all these problems exist in people under the care of teams whose main role is to minimize the impact of symptoms (physical, psychological, and spiritual) on the lives of people with advanced and incurable illnesses. Strengths This study was conducted with data prospectively collected at each clinical encounter using validated tools that allow people to selfreport their problems. As this was routine data collection, it allowed data to be compared at discrete time points before death regardless of the time before death people entered the service. This study offers a unique longitudinal assessment of self-reported problems, which could then be analyzed in the framework of the patient s illness phase. This not only allows the trends over time to be mapped but also

8 1000 Clark et al. Vol. 43 No. 6 June 2012 takes into account how the patient s changing physical status may impact the severity of symptoms experienced. Limitations Although phase data were included in this analysis, a measure of performance status was not. Whereas analyzing people within the illness phase allows a degree of comparison of like with like, including an objective measure of performance status would strengthen this approach. Furthermore, the data presented here are routine point-of-care data that do not codify potential contributing etiologies. However, the data presented here continue to strengthen the base from which other research to better quantify the impact of factors likely to impair bowel function may be conducted. Implications for Research There remains a need to better understand how the physiology of the colon and other structures of defecation change with progressive illness. There is still very little understanding of how much changed bowel function reflects the use of medications and how much other factors such as diet and functional status impact the problems that people experience; therefore, it remains difficult to more clearly define the problems. Further research is needed to develop an unambiguous definition of the problem and tailor treatments. References 1. Clark K, Urban K, Currow D. Current approaches to diagnosing and managing constipation in advanced cancer and palliative care. J Palliat Med 2010;13:473e Longstretch G, Thompson W, Chey W. Functional bowel disorders. Gastroenterology 2006;130: 1480e Fallon MT, Hanks GW. Morphine, constipation and performance status in advanced cancer patients. Palliat Med 1999;13:159e Clark K, Lam L, Currow DC. Exploring the relationship between the frequency of documented bowel movements and prescribed laxatives in hospitalized palliative care patients. Am J Hosp Palliat Care 2011;28:258e Davis MP. Cancer constipation: are opioids really the culprit? Support Care Cancer 2008;16: 427e Clark K, Lam L, Agar M, Chye R, Currow DC. Retrospective analysis of contributing factors to laxative prescription in hospitalized palliative care patients. Palliat Med 2010;24:410e Fallon M. Constipation in cancer patients: prevalence, pathogenesis, and cost-related issues. Eur J Pain 1999;3(Suppl 1):3e7. 8. Leung F. Etiologic factors of chronic constipation: review of the scientific evidence. Dig Dis Sci 2007;52:313e Camilleri M. Gastrointestinal problems in diabetes. Endocrinol Metab Clin North Am 1996;25: 361e Wu MJ, Chang CS, Cheng CH, et al. Colonic transit time in long-term dialysis patients. Am J Kidney Dis 2004;44:322e Wee B, Adams A, Thompson K, et al. How much does it cost a specialist palliative care unit to manage constipation in patients receiving opioid therapy? J Pain Symptom Manage 2010;39:644e Eagar K, Green J, Gordon R. An Australian casemix classification for palliative care: technical development and results. Palliat Med 2004;18:217e Samar M, Monteresso L, Kristjanson L, McConigley R. Measuring symptom distress in palliative care: psychometric properties of the Symptom Assessment Scale. J Palliat Med 2011;14:315e Palliative Care Outcomes Collaborative (PCOC). PCOC data definitions and guidelines, version 2. Wollongong, NSW, Australia: University of Wollongong, Available from Accessed May 14, Agar M, Currow D, Plummer J, et al. Changes in anticholinergic load from regular prescribed medications in palliative care as death approaches. Palliat Med 2009;23:257e Agar M, To T, Plummer J, Abernethy A, Currow DC. Anti-cholinergic load, health care utilization, and survival in people with advanced cancer: a pilot study. J Palliat Med 2010;13:745e Clark K, Lam LT, Agar M, Chye R, Currow DC. The impact of opioids, anticholinergic medications and disease progression on the prescription of laxatives in hospitalized palliative care patients: a retrospective analysis. Palliat Med 2010;24:410e418.