Ultimate journey of the terminally ill: Ways and pathways of hope.

OBJECTIVE: To better understand the role of hope among terminally ill cancer patients. DESIGN: Qualitative analysis. SETTING: A tertiary specialized cancer centre in Canada. PARTICIPANTS: Cancer patients in palliative care with an estimated remaining life expectancy of 12 months or less (N = 12) and their loved ones (N = 12) and treating physicians (N = 12). METHODS: Each patient underwent up to 3 interviews and identified a loved one who participated in 1 interview. Treating physicians were also interviewed. All interviews were fully transcribed and analyzed by at least 2 investigators. Interviews were collected until saturation occurred. MAIN FINDINGS: Seven attributes describe the experiences of palliative cancer patients and their caregivers: hope as an irrational phenomenon that is a deeply rooted, affect-based response to adversity; initial hope for miraculous healing; hope as a phenomenon that changes over time, evolving in different ways depending on circumstances; hope for prolonged life when there is no further hope for cure; hope for a good quality of life when the possibility of prolonging life becomes limited; a lack of hope for some when treatments are no longer effective in curbing illness progression; and for others hope as enjoying the present moment and preparing for the end of life. CONCLUSION: Approaches aimed at sustaining hope need to reflect that patients' reactions might fluctuate between despair and a form of acceptance that leads to a certain serenity. Clinicians need to maintain some degree of hope while remaining as realistic as possible. The findings also raise questions about how hope influences patients' perceptions and acceptance of their treatments.

The Canadian STOP-PAIN project - Part 1: Who are the patients on the waitlists of multidisciplinary pain treatment facilities?

PURPOSE: The Canadian STOP-PAIN Project assessed the human and economic burden of chronic pain in individuals on waitlists of Multidisciplinary Pain Treatment Facilities (MPTF). This article presents the patients' bio-psycho-social profile. METHODS: A sample of 728 patients was recruited from waitlists of eight university-affiliated MPTFs across Canada. Subjects completed validated questionnaires to: 1) assess the characteristics and impact of their pain; and 2) evaluate their emotional functioning and quality of life (QoL). Follow-up questionnaires were completed by a subgroup of 271 patients three months later. RESULTS: Close to 2/3 of the participants reported severe pain (> or = 7/10) that interfered substantially with various aspects of their daily living and QoL. Severe or extremely severe levels of depression were common (50.0%) along with suicidal ideation (34.6%). Patients aged > 60 yr were twice as likely to experience severe pain (> or = 7/10) as their younger counterparts (P = 0.002). Patients with frequent sleep problems were more at risk of reporting severe pain (P < or = 0.003). Intense pain was also associated with a greater tendency to catastrophize (P < 0.0001) severe depressive symptoms (P = 0.003) and higher anger levels (P = 0.016). Small but statistically significant changes in pain intensity and emotional distress were observed over a three-month wait time (all P < 0.05). CONCLUSION: This study highlights the severe impairment that patients experience waiting for treatment in MPTFs. Knowing that current facilities cannot meet the clinical demand, it is clear that effective prevention/treatment strategies are needed earlier in primary and secondary care settings to minimize suffering and chronicity.

The Canadian STOP-PAIN project - Part 2: What is the cost of pain for patients on waitlists of multidisciplinary pain treatment facilities?

PURPOSE: The Canadian STOP-PAIN Project was designed to document the human and economic burden of chronic pain in individuals on waitlists of Multidisciplinary Pain Treatment Facilities (MPTF). This paper describes the societal costs of their pain. METHODS: A subgroup of 370 patients was selected randomly from The Canadian STOP-PAIN Project. Participants completed a self-administered costing tool (the Ambulatory and Home Care Record) on a daily basis for three months. They provided information about publicly financed resources, such as health care professional consultations and diagnostic tests as well as privately financed costs, including out-of-pocket expenditures and time devoted to seeking, receiving, and providing care. To determine the cost of care, resources were valued using various costing methods, and multivariate linear regression was used to predict total cost. RESULTS: Overall, the median monthly cost of care was $1,462 (CDN) per study participant. Ninety-five percent of the total expenditures were privately financed. The final regression model consisted of the following determinants: educational level, employment status, province, pain duration, depression, and health-related quality of life. This model accounted for 35% of the variance in total expenditure (P < 0.001). CONCLUSION: The economic burden of chronic pain is substantial in patients on waitlists of MPTFs. Consequently, it is essential to consider this burden when making decisions regarding resource allocation and waitlist assignment for a MPTF. Resource allocation decision-making should include the economic implications of having patients wait for an assessment and for care.

Role of health care professionals in multidisciplinary pain treatment facilities in Canada.

PURPOSE: To examine the role of health care professionals in multidisciplinary pain treatment facilities (MPTF) for the treatment of chronic pain across Canada. METHODS: MPTF were defined as clinics that advertised specialized multidisciplinary services for the diagnosis and management of chronic pain, and had staff from a minimum of three different health care disciplines (including at least one medical specialty) available and integrated within the facility. Administrative leaders at eligible MPTF were asked to complete a detailed questionnaire on their infrastructure as well as clinical, research, teaching and administrative activities. RESULTS: A total of 102 MPTF returned the questionnaires. General practitioners, anesthesiologists and physiatrists were the most common types of physicians integrated in the MPTF (56%, 51% and 32%, respectively). Physiotherapists, psychologists and nurses were the most common nonphysician professionals working within these MPTF (75%, 68% and 57%, respectively), but 33% to 56% of them were part-time staff. Only 77% of the MPTF held regular interdisciplinary meetings to discuss patient management, and 32% were staffed with either a psychologist or psychiatrist. The three most frequent services provided by physiotherapists were patient assessment, individual physiotherapy or exercise, and transcutaneous electrical nerve stimulation. The three most common services provided by psychologists were individual counselling, cognitive behavioural therapy and psychodynamic therapy. The major roles of nurses were patient assessment, assisting in interventional procedures and patient education. CONCLUSION: Different health care professionals play a variety of important roles in MPTF in Canada. However, few of them are involved on a full-time basis and the extent to which pain is assessed and treated in a truly multidisciplinary manner is questionable.

Primum non nocere: could the health care system contribute to suffering? In-depth study from the perspective of terminally ill cancer patients.

OBJECTIVE: To explore terminally ill patients' perceptions of their own suffering in order to describe, from these patients' perspective, some elements of health care providers' response to suffering. DESIGN: Qualitative study using content analysis methods suited to a grounded theory approach. SETTING: Teaching and nonteaching hospital oncology clinics, palliative care services (both ambulatory and in-unit), and family practices. PARTICIPANTS: Twenty-six patients diagnosed with terminal cancer. METHODS: Interviews were audiotaped and transcribed verbatim. Data from each interview were coded and categorized to identify and define themes. Themes were discussed and refined until those rating them agreed on them. Data were collected until saturation of emerging issues was reached. MAIN FINDINGS: In our health care system, patients are caught in a pervasive pattern of suffering avoidance, which in turn contributes to increased suffering. Health care services are perceived as a battlefield where physicians and patients are engaged in a losing struggle to ward off illness and death. Both physicians and patients engage in avoiding skepticism and muffling distress. The unavoidable avowal of powerlessness in the face of terminal disease is perceived as capitulation and therapeutic abandonment. Budgetary restraints and understaffing, along with a pervasive culture that implicitly denies death, produce an environment conducive to the avoidance of suffering. To counter this, health care practices that foster increased overlap and continuity between the spheres of oncology, palliative care, and family medicine seem worth developing. CONCLUSION: The suffering of gravely ill patients might be hard to alleviate in the context of modern health care organizations. In some cases, health care delivery directly contributes to increased suffering. Providing support while also helping patients and their families to face upcoming harsh realities is a delicate balancing act that needs to be further explored.

Management of chronic neuropathic pain with methadone: a review of 13 cases.

The synthetic opioid methadone has generated much interest in recent years among clinicians involved in the management of intractable chronic cancer pain. Its use as an analgesic is starting to extend to the treatment of noncancer pain, particularly neuropathic pain. Unfortunately, the evidence for its use in the management of neuropathic pain is limited to a few case studies. We examined retrospectively during a 12-month study period the clinical response of all 13 patients at our pain clinic who were prescribed methadone in an attempt to control neuropathic pain resistant to conventional analgesics. A questionnaire was also administered to the 9 patients who continued to take methadone at 12 months posttreatment. A total of 4 patients (31%) discontinued it by the end of the 12-month study period. Patients discontinued methadone due to the absence of pain relief and due to various intractable, undesirable side effects. Somnolence was the most common adverse effect reported, followed by nausea, constipation, and vomiting. All patients took coanalgesics (eg, amitriptyline, gabapentin) or other analgesics (eg, morphine, nonsteroidal anti-inflammatory drugs) during methadone treatment to control pain. The 9 patients who continued to take methadone at 12 months reported experiencing on average 43% pain relief (range 0-80%), 47% improvement in quality of life (range 0-100%), and 30% improvement in quality of sleep (range 0-60%). Methadone was effective at relieving pain and ameliorating quality of life and sleep in 62% of patients. These findings suggest that methadone can offer an acceptable success rate for the treatment of neuropathic pain. Prospective randomized, placebo-controlled studies are now needed to examine more rigorously the benefits of methadone for this type of pain.

The nature of suffering and its relief in the terminally ill: a qualitative study.

The essential mandate of medicine is the relief of suffering. However, the quest for an integrated model towards a conceptualization of suffering is still ongoing and empirical studies are few. Qualitative inquiry using 31 in-depth interviews and content analysis was carried out between 1999 and 2001 in 26 patients diagnosed with terminal cancer. The suffering experience was described through a multiplicity of heterogenous elements from the physical, psychological, and social spheres. Systematic synthesis of interview material yielded three apparently irreducible core dimensions. Respondents defined their suffering in terms of 1) being subjected to violence, 2) being deprived and/or overwhelmed, and 3) living in apprehension. Cassell wrote, in 1991, that to know the suffering of others demands an exhaustive understanding of what makes them the individuals they are (1). Our model can be of use in structuring and eliciting this necessary information. Understanding how a particular patient feels harmed, deprived or overburdened, and overtaken by fear, provides a lever for action tailored to the specifics of that person's experience.

The Canadian STOP-PAIN project: the burden of chronic pain-does sex really matter?

OBJECTIVES: The Canadian STOP-PAIN Project assessed the human and economic burden of chronic pain (CP) in individuals on waitlists of Canadian multidisciplinary pain treatment facilities. This article focuses on sex differences. Objectives were to (1) determine the pain characteristics and related biopsychosocial factors that best differentiated women and men with CP; and (2) examine whether public and private costs associated with CP differed according to sex. MATERIALS AND METHODS: Sample consisted of 441 women and 287 men who were evaluated using self-administered questionnaires and a structured interview protocol. A subsample (233 women and 137 men) recorded all pain-related expenditures in a comprehensive diary over 3 months. RESULTS: Results revealed that the burden of illness associated with CP was comparable in both sexes for average and worst pain intensity, pain impact on daily living, quality of life, and psychological well-being. The same was true for pain-related costs. The results of a hierarchical logistic regression analysis, in which sex was treated as the dependent variable, showed that factors that differentiated men and women were: work status, certain circumstances surrounding pain onset, present pain intensity, intake of particular types of pain medication, use of certain pain management strategies, pain beliefs, and utilization of particular health care resources. DISCUSSION: This study suggests that women and men who are referred to multidisciplinary pain treatment facilities do not differ significantly in terms of their pain-related experience. However, the aspects that differ may warrant further clinical attention when assessing and managing pain.

A systematic literature review of 10 years of research on sex/gender and experimental pain perception - part 1: are there really differences between women and men?

The purpose of this systematic review was to summarize and critically appraise the results of 10 years of human laboratory research on pain and sex/gender. An electronic search strategy was designed by a medical librarian and conducted in multiple databases. A total of 172 articles published between 1998 and 2008 were retrieved, analyzed, and synthesized. The first set of results (122 articles), which is presented in this paper, examined sex difference in the perception of laboratory-induced thermal, pressure, ischemic, muscle, electrical, chemical, and visceral pain in healthy subjects. This review suggests that females (F) and males (M) have comparable thresholds for cold and ischemic pain, while pressure pain thresholds are lower in F than M. There is strong evidence that F tolerate less thermal (heat, cold) and pressure pain than M but it is not the case for tolerance to ischemic pain, which is comparable in both sexes. The majority of the studies that measured pain intensity and unpleasantness showed no sex difference in many pain modalities. In summary, 10 years of laboratory research have not been successful in producing a clear and consistent pattern of sex differences in human pain sensitivity, even with the use of deep, tonic, long-lasting stimuli, which are known to better mimic clinical pain. Whether laboratory studies in healthy subjects are the best paradigm to investigate sex differences in pain perception is open to question and should be discussed with a view to enhancing the clinical relevance of these experiments and developing new research avenues.

A systematic literature review of 10 years of research on sex/gender and pain perception - part 2: do biopsychosocial factors alter pain sensitivity differently in women and men?

This systematic review summarizes the results of 10 years of laboratory research on pain and sex/gender. An electronic search strategy was designed by a medical librarian to access multiple databases. A total of 172 articles published between 1998 and 2008 were retrieved, analyzed, and synthesized. The second set of results presented in this review (129 articles) examined various biopsychosocial factors that may contribute to differences in pain sensitivity between healthy women and men. The results revealed that the involvement of hormonal and physiological factors is either inconsistent or absent. Some studies suggest that temporal summation, allodynia, and secondary hyperalgesia may be more pronounced in women than in men. The evidence to support less efficient endogenous pain inhibitory systems in women is mixed and does not necessarily apply to all pain modalities. With regard to psychological factors, depression may not mediate sex differences in pain perception, while the role of anxiety is ambiguous. Cognitive and social factors appear to partly explain some sex-related differences. Finally, past individual history may be influential in female pain responses. However, these conclusions must be treated with much circumspection for various methodological reasons. Furthermore, some factors/mechanisms remain understudied in the field. There is also a need to assess and improve the ecological validity of findings from laboratory studies on healthy subjects, and perhaps a change of paradigm needs to be considered at this point in time to better understand the factors that influence the experience of women and men who suffer from acute or chronic pain.

Challenges in accessing multidisciplinary pain treatment facilities in Canada.

PURPOSE: The objective of this survey was to examine the services offered by multidisciplinary pain treatment facilities (MPTFs) across Canada and to compare access to care at these MPTFs. METHODS: A MPTF was defined as a clinic that advertised specialized multidisciplinary services for the diagnosis and management of patients with chronic pain, having a minimum of three different health care disciplines (including at least one medical speciality) available and integrated within the facility. The search method included approaching all hospital and rehabilitation centre administrators in Canada, the Insurance Bureau of Canada, the Workplace Safety and Insurance Board or similar body in each province. Designated investigators were responsible for confirming and supplementing MPTFs from the preliminary list for each province. Administrative leads at each eligible MPTF were asked to complete a detailed questionnaire regarding their MPTF infrastructure, clinical, research, teaching and administrative activities. RESULTS: Completed survey forms were received from 102 MPTFs (response rate 85%) with 80% concentrated in major cities, and none in Prince Edward Island and the Territories. The MPTFs offer a wide variety of treatments including non-pharmacological modalities such as interventional, physical and psychological therapy. The median wait time for a first appointment in public MPTFs is six months, which is approximately 12 times longer than non-public MPTFs. Eighteen pain fellowship programs exist in Canadian MPTFs and 64% engage in some form of research activities CONCLUSION: Canadian MPTFs are unable to meet clinical demands of patients suffering from chronic pain, both in terms of regional accessibility and reasonable wait time for patients' first appointment.

Dedicated multidisciplinary pain management centres for children in Canada: the current status.

PURPOSE: The objective of this study was to examine the services currently offered by multidisciplinary pain treatment facilities (MPTFs) dedicated for pediatric chronic pain management across Canada. METHODS: A MPTF was defined as a clinic that advertised specialized multidisciplinary services for the diagnosis and management of chronic pain and had a minimum of three different health care disciplines (including at least one medical speciality) available and integrated within the facility. The search method was previously described in an accompanying article. Designated investigators were responsible for confirming and supplementing MPTFs from the preliminary list in their respective provinces. Administrative leads at each eligible MPTF were asked to complete a detailed questionnaire on their infrastructure, clinical, research, teaching and administrative activities. Only MPTFs dedicated to pediatric populations were included. RESULTS: Only five centres surveyed had dedicated pediatric MPTFs, all located in major cities in five different provinces. While the median wait time was four weeks, it could be as long as nine months in one MPTF. Headache and neuropathic pain were the most commonly treated pain syndromes. All MPTFs included physicians, nurses and psychologists, and used a rehabilitation model that incorporated a wide variety of pharmacological, psychological and physical therapies. All centres provided training for medical and other healthcare professionals, and three of the five centres conducted research. Government funding was the major source of funding for patient services and overhead costs. CONCLUSIONS: There are very few pediatric MPTFs in Canada. These facilities exist in five of ten provinces, each within large urban centres. Limited accessibility leads to variable and prolonged wait times for pediatric patients suffering from chronic pain.

The treatment of chronic pain in Québec: a study of hospital-based services offered within anesthesia departments.

PURPOSE: Little or no information exists on the services that are currently available for the treatment of chronic pain across the different regions of Canada. As a first step, this study documented the hospital-based resources and services offered for the management of chronic non-cancer pain within anesthesia departments in Québec. METHODS: In collaboration with the Association of Anesthesiologists of Québec and the Société québécoise de la douleur, a provincial survey was conducted to assess the availability of services for chronic pain management within hospital-based anesthesia departments along with the volume of clinical activities, staff composition, treatments offered and space facilities. RESULTS: The response rate was 100%. Fifty of the 69 departments (73%) offered services for the management of chronic non-cancer pain but the services were often limited. Twenty-six percent (13/50) of the departments provided some form of multidisciplinary assessment and treatment but only three had a core team comprised of an anesthesiologist, a nurse, a psychologist, and a physical therapist. Examination of patient waiting lists of the surveyed departments revealed disturbing results: approximately 4,500 patients were waiting for their first appointment to see a pain consultant, and nearly 3,000 (67%) had been waiting for nine months or more. CONCLUSION: Although this survey did not include the services offered in departments other than anesthesia, the results show the extent to which the province of Québec is under-resourced for the management of chronic pain patients both in terms of access to treatment and quality of the services offered.

Disclosure of Alzheimer's disease. Senior citizens' opinions.

OBJECTIVE: To determine the proportion of elderly people without dementia who would want disclosure of a diagnosis of Alzheimer's disease (AD), for themselves or for their spouses, and to verify whether the availability of medication would influence their decision. DESIGN: A cross-sectional survey with a semistructured questionnaire completed during face-to-face interviews. SETTING: Medical and surgical outpatient clinics in St Mary's Hospital Center. PARTICIPANTS: 204 subjects 65 years or older with at most mild cognitive impairment. MAIN OUTCOME MEASURES: Percentage of positive responses for disclosure of a diagnosis of AD to self or to spouse, with or without medication. RESULTS: Nearly all (98%) subjects wanted disclosure for themselves. Most (78%) wanted disclosure for their potentially afflicted spouses when medication was said to be unavailable. This proportion increased to 97%, however, if medication was available. CONCLUSION: Most participants requested honesty for themselves. Most wanted disclosure to a potentially affected spouse when medication is said to be available.