Do Correlates of Pain-Related Stoicism and Cautiousness Differ in Younger and Older People With Advanced Cancer?

Age differences are not evident in pain-related stoicism and cautiousness in people with cancer pain. Little is known about the factors associated with these pain-related attitudes or age-related patterns in these associations. The present cross-sectional study investigated the biopsychosocial correlates of the attitudes in younger and older patients with advanced cancer. Pain-related stoicism (fortitude, concealment, superiority) and cautiousness (self-doubt, reluctance) were assessed using the Pain Attitudes Questionnaire-Revised (PAQ-R). Participants, 155 younger (younger than 60 years old) and 114 older (60 years old or older) patients with advanced cancer completed the PAQ-R and measures of sociodemographic and medical characteristics, pain intensity, cognitive-affective pain-related responses, physical functioning, psychological distress and well-being, and psychosocial functioning. Backwards regression analyses identified correlates for each PAQ-R factor separately for younger and older patients. Activity engagement was a frequent correlate, but its relationship with concealment was the only association common to both age groups. Younger and older patients exhibited different avoidance-related constructs suggesting relational challenges in the former group (avoidant attachment) and intrapersonal fear in the latter (cognitive avoidance). Medical correlates also showed age differences: younger patients showed symptom-focused correlates, whereas older patients showed aging-related correlates. Findings support a biopsychosocial framework of cancer-pain adaptation incorporating a lifespan-developmental perspective. PERSPECTIVE: To our knowledge, this article is the first to identify biopsychosocial correlates of stoic and cautious attitudes toward cancer pain in younger and older patients with advanced cancer. Findings highlight possible age-related motivations for greater pain-related stoicism or cautiousness and can potentially inform interventions addressing challenges in cancer-pain adaptation in advanced cancer.

Psychometric Evaluation of the Pain Attitudes Questionnaire-Revised for People With Advanced Cancer.

Pain-related stoicism and cautiousness are theorized to be more prevalent in older than younger patients and to lead to greater pain under-reporting and consequently inadequate pain management in older patients. The Pain Attitudes Questionnaire-Revised (PAQ-R), which measures 5 pain-related stoicism (fortitude, concealment, superiority) and cautiousness (self-doubt, reluctance) factors in chronic pain, can help test this hypothesis in advanced cancer but requires validation. We conducted a psychometric evaluation of the PAQ-R in 155 younger (younger than 60 years) and 114 older (aged 60 years and older) patients with advanced cancer. Participants showed disagreement with self-doubt items and floor effects with the subscale. Confirmatory factor analyses revealed good fit of the PAQ-R's 5 factors to younger and older groups' data but collinearity between fortitude and concealment. Multisample confirmatory factor analyses supported partial scalar invariance between age groups. Few hypothesized age-related differences were observed. Younger patients reported higher superiority scores than older patients. Whereas older patients showed greater fortitude and superiority with lower average pain intensity, younger patients showed greater concealment or fortitude with greater worst and average pain intensity. Furthermore, whereas older patients displayed greater superiority with lower interference in relations with others, younger patients displayed greater concealment and superiority with greater interference in walking ability and greater concealment and self-doubt with more interference in relations with others. Cross-validation of the PAQ-R's factor structure and identification of pathways to the factors and effect on pain-related outcomes using multivariate approaches are warranted. PERSPECTIVE: This article presents the psychometric properties of a measure of 2 particular pain-related attitudes. The measure can help clarify whether these attitudes adversely influence pain reporting in older patients with advanced cancer as hypothesized and, in turn, explain the inadequate pain management frequently reported with this clinical group.

Validation of the short-form McGill pain questionnaire-2 in younger and older people with cancer pain.

UNLABELLED: Pain is among the most common symptoms of cancer. Because cancer can occur at any age, it is imperative that pain assessment tools are valid for use across the adult lifespan. The Short-Form McGill Pain Questionnaire-2 (SF-MPQ-2) is a valid and reliable tool for the assessment of the multidimensional qualities of pain in people with chronic nonmalignant pain, but its psychometric properties in people with cancer pain and in older versus younger people require investigation. This study evaluated age differences in the validity, reliability, and use of the SF-MPQ-2 in 244 people with advanced cancer and pain. We confirmed the previously reported 4-factor solution in older (≥ 60 years) and younger (<60 years) patients. Internal consistency reliability and convergent validity were similar across age groups, although the SF-MPQ-2 sensory subscales were correlated with mental health quality of life in older, but not younger, patients. Older and younger patients selected the same words with the same intensity to describe their pain. The most commonly selected words in both age groups were aching, tiring-exhausting, sharp, and dull. These results demonstrate that the SF-MPQ-2 is appropriate for use across the adult lifespan in people with cancer pain. PERSPECTIVE: This study demonstrated that the SF-MPQ-2 is valid for use in older and younger people with advanced cancer and pain. This measure could improve cancer pain assessment across the adult lifespan, which may lead to improved pain management.

Not just little adults: palliative care physician attitudes toward pediatric patients.

BACKGROUND: Palliative care physicians are increasingly being asked to provide end-of-life (EOL) care for children. Yet very little is known about physicians' level of comfort and willingness to do so. OBJECTIVES: This study assessed the attitudes of palliative care physicians toward providing care for pediatric patients and to describe the supports they desire in order to do so. METHODS: An online questionnaire was e-mailed to all physicians in the Division of Palliative Care at the University of Toronto. The questionnaire explored perceptions, attitudes, and level of comfort caring for pediatric patients. Results are reported using frequencies, ratios, and other descriptive analyses. RESULTS: Forty-four physicians of the 74 (59%) surveyed responded. On average, physicians cared for fewer than one child per each year of practice. Although the majority of respondents perceived their pediatric training to be inadequate, 70% were willing to provide care to children. Respondents felt at ease applying their knowledge and skills in some aspects of pediatric care (e.g., principles of pain and symptom management, communication about EOL issues) but less so in others (e.g., medication dosing, ethical issues unique to pediatrics). All respondents welcomed opportunities for additional training, but a third felt it was not essential. In particular, the most frequently expressed need was for mentorship by pediatric palliative care specialists. CONCLUSIONS: Palliative physicians tend to be willing to care for children, but perceive their level of training to be insufficient. Although additional training is endorsed, physicians favored real-time support and mentorship from a pediatric expert.

Facilitators of and barriers to advance care planning in adult congenital heart disease.

BACKGROUND: Most adults with congenital heart disease (CHD) are interested in discussing matters related to advance care planning (ACP) early in the disease course, yet few such conversations actually occur. We aimed to evaluate factors that impact these discussions between patients and adult CHD providers. METHODS: Two hundred adult CHD outpatients completed a survey that included factors that might impact ACP discussions with their doctors. In parallel, forty-eight providers within the Canadian Adult Congenital Heart Network completed a similar online survey. Responses were compared between the groups. RESULTS: Most providers (85%) worried that they were unable to reliably estimate life expectancy and believed that patients were not ready for end-of-life discussions if their estimated life expectancies were beyond 5 years (63%) or beyond 10 years (79%). In contrast, only 24% of patients, independent of disease complexity, thought they were not ready to talk about ACP. Most providers (83%) reported that greater certainty about patients' prognoses would help them discuss ACP. Patients thought that such discussions were best facilitated when they had trust in their doctors (85%) and believed their doctors are good at taking care of patients with CHD (78%). CONCLUSION: Despite the fact that challenges to prognostication exist, discussions about ACP should not be reserved for patients with a severely reduced life expectancy. Most patients want these discussions regardless of the complexity of their disease. The trusting and close patient-doctor relationship in adult CHD, often evolving over many years, may provide an excellent platform from which to initiate such discussions.

The communal coping model and cancer pain: the roles of catastrophizing and attachment style.

UNLABELLED: Pain is among the most common symptoms of cancer, with impacts on multiple domains of well-being. Biopsychosocial factors play an important role in adjustment to cancer pain. The Communal Coping Model (CCM), which may elucidate the social context of cancer pain, suggests that people catastrophize to convey distress and elicit support. Attachment style, one's ability to elicit and respond to available support, may be an important factor, but this has not been tested in people with cancer pain. This study examined pain catastrophizing, attachment style and relational context in relation to perceived solicitous, distracting, and punishing responses of significant others to pain in 191 patients with advanced cancer. Consistent with the CCM, higher pain catastrophizing was related to more frequent solicitous and distracting responses. Pain catastrophizing, attachment anxiety, and significant other type interacted in relation to punishing responses. Higher pain catastrophizing was related to less frequent punishing responses only in anxiously attached patients who identified their spouse/partner as their significant other. These results provide support for the CCM of cancer pain, and contribute to refinement of the model. Future research that includes patients and their caregivers is required to further explicate the social context of cancer pain. PERSPECTIVE: This article investigates the Communal Coping Model in people with cancer pain. In partial support of the model, we found that pain catastrophizing was related to more frequent solicitous and distracting responses but less frequent punishing responses only in anxiously attached patients who identified their spouse/partner as their significant other.

Knowledge of and preference for advance care planning by adults with congenital heart disease.

Congenital heart disease (CHD) is a chronic illness. Few adults with CHD are cured and those with disease of moderate or great complexity remain at risk of premature death. Current adult CHD guidelines recommend that providers encourage their patients to complete advance directives. We evaluated the prevalence of completed advance directives by and the preference for information about life expectancy of outpatients at a large adult CHD program. Two hundred patients with CHD (52% men, 35 ± 15 years old, range 18 to 79, 81% with disease of moderate or great complexity) completed a survey that assessed knowledge of advance directives and nature of and preferences for advance care planning. Only 5% of patients reported that they had completed advance directives; 56% had never heard of them. However, most patients (87%) reported that they would prefer to have an advance directive available if they were dealing with their own dying and were unable to speak for themselves. Patients who had formally identified substitute decision makers (n = 34) were typically older (47 ± 16 vs 33 ± 13 years, p <0.001) and more likely to have partners (30% vs 6%, p <0.001). Most patients (70%) reported that they wanted general information about the average life expectancy for patients with their heart condition. In conclusion, in contrast to recommendations from published guidelines, advance care planning documents are infrequently completed by outpatients. Health care providers caring for patients with CHD should educate their patients about advance directives and assist them in preparing formal end-of-life-planning documents.

Health system characteristics of quality care delivery: a comparative case study examination of palliative care for cancer patients in four regions in Ontario, Canada.

BACKGROUND: A number of palliative care delivery models have been proposed to address the structural and process gaps in this care. However, the specific elements required to form competent systems are often vaguely described. AIM: The purpose of this study was to explore whether a set of modifiable health system factors could be identified that are associated with population palliative care outcomes, including less acute care use and more home deaths. DESIGN: A comparative case study evaluation was conducted of 'palliative care' in four health regions in Ontario, Canada. Regions were selected as exemplars of high and low acute care utilization patterns, representing both urban and rural settings. A theory-based approach to data collection was taken using the System Competency Model, comprised of structural features known to be essential indicators of palliative care system performance. Key informants in each region completed study instruments. Data were summarized using qualitative techniques and an exploratory factor pattern analysis was completed. RESULTS: 43 participants (10+ from each region) were recruited, representing clinical and administrative perspectives. Pattern analysis revealed six factors that discriminated between regions: overall palliative care planning and needs assessment; a common chart; standardized patient assessments; 24/7 palliative care team access; advanced practice nursing presence; and designated roles for the provision of palliative care services. CONCLUSIONS: The four palliative care regional 'systems' examined using our model were found to be in different stages of development. This research further informs health system planners on important features to incorporate into evolving palliative care systems.

Resource use and costs of end-of-Life/palliative care: Ontario adult cancer patients dying during 2002 and 2003.

The objective of this study is to estimate the direct medical cost of end-of-life and palliative (EOL/PAL) care for cancer patients during the last six months of their lives--or, during the period from diagnosis to death, if briefer--in 2002 and 2003, in Ontario, Canada. A linkage of cancer registry and administrative data is used to determine the costs of health care resources used during the EOL/PAL care period. Costs are analyzed by cancer diagnosis, location of death, and type of service. The total Ontario Ministry of Health-funded cost of EOL/PAL care for cancer patients is estimated to be about CAD$544 million per year, with an average per patient cost of about $25,000 in 2002-2003. Our results suggest that acute care consumes 75 percent of EOL/PAL funding and that only a small proportion of health care services used by EOL/PAL care cancer patients is likely to be formal palliative care.

Supporting children's grief within an adult and pediatric palliative care program.

"What about the kids?" is a dominant and consuming question for caregivers supporting children/youth around the dying and death of a family member. The concerns and fears encompassed in this question can overwhelm caregivers as they put vast amounts of energy into trying to protect children/youth from the suffering and pain that awaits them. Perhaps the hardest lesson these caregivers must learn is that they cannot protect their child/youth from the death any more than they can stop the death from happening. Instead, what is needed most from children/youth is to be included, prepared, and provided with a safe place for emotional expression. Children, as well as adults, will grieve in their own specific way, mediated by their developmental level, circumstances of the illness and death, and protective factors available to them. Providing comprehensive, whole-person care to palliative patients with children/youth in their care ought to include psychoeducation and support for all members of the family. Our communities' bereaved children/youth will be impacted by the death of their family members in countless ways throughout their lives. As professionals caring for people who are dying, we have a responsibility to mediate this impact to the best of our ability.

Methylnaltrexone in the treatment of opioid-induced constipation in cancer patients receiving palliative care: willingness-to-pay and cost-benefit analysis.

CONTEXT: When laxative regimens have failed, methylnaltrexone may be indicated for the relief of opioid-induced constipation (OIC) in patients with advanced illness receiving palliative care. OBJECTIVES: A cost-benefit analysis (CBA), based on a willingness-to-pay (WTP) approach, was performed to determine if methylnaltrexone should be added to the formulary list of drugs being reimbursed by third-party payers in Canada for the treatment of cancer patients in palliative care suffering from OIC. METHODS: The WTP study had two components: a decision board explaining treatment options (Component A) and a questionnaire to measure individual WTP using a bidding game approach (Component B). Component A had two options: Option 1 (laxatives only) and Option 2 (laxatives+methylnaltrexone injection). Only participants choosing Option 2 were invited to complete Component B. The results of the WTP survey were then incorporated into a CBA. Within a hypothetical cohort, additional monthly premiums that individuals were willing to pay for methylnaltrexone were compared with the monthly costs to the insurer for providing methylnaltrexone to all patients who would potentially be using it. RESULTS: Four hundred one Canadians, of age 18 years and older, were surveyed and yielded a WTP in additional monthly insurance premiums of Canadian dollar (CAD) $8.65 (95% confidence interval: CAD$6.17-CAD$11.13). The CBA resulted in additional CAD$89,307 with a cost of CAD$139,840 and benefits of CAD$229,147. A set of 10,000 Monte Carlo simulations resulted in average CBA savings of CAD$145,011 with a 99.86% probability of dominance. CONCLUSION: The present CBA provides pharmacoeconomic evidence for the adoption of methylnaltrexone for treating OIC in terminally ill cancer patients.

Palliative care and oncology: integration leads to better care.

The timely integration of palliative care services into standard oncology care is essential to providing comprehensive individualized care for patients with advanced and incurable cancer and their families. Herein we discuss five important areas in which this integration is critical to optimize management, namely: symptom management, transitioning from disease-focused care to palliative care, discussing goals of care and advance care planning, community care, and psychosocial support for the patient and family.

Consensus recommendations for the management of constipation in patients with advanced, progressive illness.

Constipation is a highly prevalent and distressing symptom in patients with advanced, progressive illnesses. Although opioids are one of the most common causes of constipation in patients with advanced, progressive illness, it is important to note that there are many other potential etiologies and combinations of causes that should be taken into consideration when making treatment decisions. Management approaches involve a combination of good assessment techniques, preventive regimens, appropriate pharmacological treatment of established constipation, and frequent monitoring. In this vulnerable patient population, maintenance of comfort and respect for individual preferences and sensitivities should be overriding considerations when making clinical decisions. This consensus document was developed by a multidisciplinary group of leading Canadian palliative care specialists in an effort to define best practices in palliative constipation management that will be relevant and useful to health care professionals. Although a wide range of options exists to help treat constipation and prevent its development or recurrence, there is a limited body of evidence evaluating pharmacological interventions. These recommendations are, therefore, based on the best of the available evidence, combined with expert opinion derived from experience in clinical practice. This underscores the need for further clinical evaluation of the available agents to create a robust, evidence-based foundation for treatment decisions in the management of constipation in patients with advanced, progressive illness.

Factors Associated with End-of-Life Health Service Use in Patients Dying of Cancer.

This study describes acute care hospital death, physician house calls and home care near the end of life among patients who died of cancer and the factors that are associated with these events and services. It is a population-based retrospective study that uses linked administrative healthcare data. The cohort includes all patients who died of cancer between 2000 and 2004 in Ontario, Canada.Fifty-five per cent of patients died in acute care hospital, 68% received home care in the last 6 months of life and 24% received at least one physician house call in the last 2 weeks of life. Increased age was associated with a decreased likelihood of each event or service. Women were less likely to die in acute care and more likely to receive home care. Residents in low-income neighbourhoods were less likely to receive house calls or home care. Patients who received home care or house calls were less likely to die in acute care.Our observations add to those in the literature, suggesting a need to increase the use of supportive care services at the end of life in hopes of decreasing the need for acute care. They also serve as a baseline for future comparison, which is of particular interest since new government policies directed at end-of-life care were recently introduced.

Healthcare integration: the study of the toronto central regional hospice palliative care "system" and its integration challenges.

The Ontario Ministry of Health and Long-Term Care's End-of-Life strategy did not result in integrated hospice palliative care (HPC) systems. Consequently, HPC has evolved differently across the 14 local health integration networks. In the Toronto Central Local Health Integration Network, the HPC sector lacks foundational systems integration elements: infrastructure and tools that can ensure optimal access and delivery; centralized data capture and management resources to support delivery and planning; and central planning and performance authority that will further improvements in systems delivery, planning and accountability. The sector has been able to function because of inter-organizational initiatives and system linkage tools.

Women experience higher levels of fatigue than men at the end of life: a longitudinal home palliative care study.

Few studies have evaluated sex differences in the prevalence, severity, and correlates of fatigue at the end of life. The Brief Fatigue Inventory, McGill Quality of Life (MQOL) Questionnaire, and Karnofsky Performance Scale were administered at two-week intervals to 102 patients in a home palliative program. Outcomes in the sample and a regional palliative database (n=3,096) were analyzed. Cancer was the diagnosis in 96% of patients enrolled. Prevalence (P=0.0091) and severity of fatigue (P<0.001) were higher in women at entry and in a repeated measures analysis over time (severity, P=0.0048). Performance status did not explain this difference. MQOL scores were inversely correlated to fatigue (Spearman coefficient=-0.48, P<0.0001), but did not differ by sex. There was no difference in fatigue interference with MQOL in women and men. Although depression was higher in women (P=0.042) and related to fatigue at entry, it did not explain the sex difference in fatigue scores. Of the sociodemographic variables examined, neither education nor living situation contributed to the fatigue difference. This study shows a sex effect in the fatigue experienced by patients with advanced illnesses, which is not explained by baseline differences in performance, depression, MQOL, education, or living situation. That fatigue interference with MQOL is the same for men and women suggests that higher fatigue scores in women reflect not only a difference in the dimension of fatigue severity, but are also relevant in relation to impact on QOL. Assessment of fatigue should include the dimension of QOL important for both women and men.

Models, standards, guidelines.

This article reviews the current illness experience for elders, highlights key issues that cause suffering and affect the quality of life of elders in our society, and reviews the definition and the process for providing palliative care. A consensus-building process is described, which any hospice or palliative care organization can use to adapt existing consensus and evidence-based models, standards of practice, and preferred practice guidelines and engage all staff and stakeholders in the development of an organizational model to guide day-to-day practices and improve the quality of all its activities.