Developing a question prompt list for family caregivers concerning the progression and palliative care needs of nursing home residents living with dementia.

Objective: Communication around a palliative approach to dementia care often is problematic or occurs infrequently in nursing homes (NH). Question prompt lists (QPLs), are evidence-based lists designed to improve communication by facilitating discussions within a specific population. This study aimed to develop a QPL concerning the progression and palliative care needs of residents living with dementia. Methods: A mixed-methods design in 2 phases. In phase 1, potential questions for inclusion in the QPL were identified using interviews with NH care providers, palliative care clinicians and family caregivers. An international group of experts reviewed the QPL. In phase 2, NH care providers and family caregivers reviewed the QPL assessing the clarity, sensitivity, importance, and relevance of each item. Results: From 127 initial questions, 30 questions were included in the first draft of the QPL. After review by experts, including family caregivers, the QPL was finalized with 38 questions covering eight content areas. Conclusion: Our study has developed a QPL for persons living with dementia in NHs and their caregivers to initiate conversations to clarify questions they may have regarding the progression of dementia, end of life care, and the NH environment. Further work is needed to evaluate its effectiveness and determine optimal use in clinical practice. Innovation: This unique QPL is anticipated to facilitate discussions around dementia care, including self-care for family caregivers.

Connecting Through Conversation: A Novel Video-Feedback Intervention to Enhance Long-Term Care Aides' Person-Centred Dementia Communication.

Objective: To pilot test a novel communication intervention incorporating a video-feedback component on the person-centred dementia communication skills of long-term care aides. Methods: Effectiveness was assessed using a single group pre-test/post-test design. 11 care aide-resident dyads participated in the study. Objective outcomes included provider statements demonstrating linguistic (i.e., reciprocity, clarity/coherence, and continuity categories) and relational elements of person-centred dementia communication, measured via video-recorded observations of usual care interactions. Subjective outcomes of care aide communication confidence/competence, satisfaction with the resident relationship, relationship closeness, and self-reflection at work were measured using self-report questionnaires. Results: In respect to observed person-centred dementia communication skills, there was an increase in the use of linguistic statements in the reciprocity and continuity categories, as well as total linguistic statements overall. Relational statements and overall person-centred dementia communication (i.e., linguistic plus relational strategies) increased. Care aide-reported communication confidence and competence, relationship closeness with the resident, and self-reflection at work also increased after the communication intervention. Discussion: The communication intervention showed promise as an effective approach to enhance person-centred dementia communication behaviours in care aides. These results support undertaking a larger trial to examine the intervention's effectiveness more fulsomely.

Expanding the conversation: A Person-centred Communication Enhancement Model.

The intricacy and impact of human communication has long captured the attention of philosophers, scholars and practitioners. Within the realm of care and service provision, efforts to maximize outcomes through optimal person-provider communication have drawn research and clinical focus to this area for several decades. With the dawning of the person-centred care movement within healthcare, and in particular long-term care home and dementia care settings, improvement in care providers' use of person-centred communication strategies and enhancement of relationships between residents, their families and care providers are desired outcomes. Thus, several person-centred care and communication theoretical perspectives have been employed to ground study in this field. However, a comprehensive theoretical position to underpin person-centred communication in dementia and older adult research does not exist to our knowledge. To offer expansion to the theoretical work in this emerging field, a Person-Centred Communication Enhancement Model for long-term care and dementia care is proposed, as well as rationale for its development. This discussion will also provide an overview and critique of the extant philosophies, theories, frameworks and models that have been utilized in the study of person-centred communication within the context of long-term care and dementia care.

More than just a task: intimate care delivery in the nursing home.

Purpose: Intimate care procedures, such as bathing and toileting, are often regarded as simple, humble tasks. However, the provision of such care transforms a very private, personal activity into a social process. Understanding this complex process and the psychological impact it has on those providing and receiving care is critical in order to mitigate potential distress. The purpose of this study to examine the experience of delivering and receiving intimate personal care in the NH.Methods: A focused ethnographic approach with participant observation, semi-structured interviews, focus groups and drop-in sessions, document review, and field notes. Data were analysed using constant comparative analysis.Results: Quality care in this context is predicated on the care provider recognition of the emotional impact of care delivery on the care recipient. Our analysis identified that the overarching theme, of providing quality person-centred intimate care, requires creating and maintaining a relational space that promotes integrity.Conclusions: The provision of intimate personal care consists of a complex interplay at the level of resident/care provider interaction (micro level); health care organization (meso level); and policy (macro level). Each of these levels interacts with and influences the other two. The components identified in our model may provide the basis from which to further examine resident experiences of quality intimate personal care.

No Other Safe Care Option: Nursing Home Admission as a Last Resort Strategy.

BACKGROUND AND OBJECTIVES: Nursing homes are intended for older adults with the highest care needs. However, approximately 12% of all nursing home residents have similar care needs as older adults who live in the community and the reasons they are admitted to nursing homes is largely unstudied. The purpose of this study was to explore the reasons why lower-care nursing home residents are living in nursing homes. RESEARCH DESIGN AND METHODS: A qualitative interpretive description methodology was used to gather and analyze data describing lower-care nursing home resident and family member perspectives regarding factors influencing nursing home admission, including the facilitators and barriers to living in a community setting. Data were collected via semistructured interviews and field notes. Data were coded and sorted, and patterns were identified. This resulted in themes describing this experience. RESULTS: The main problem experienced by lower-care residents was living alone in the community. Residents and family members used many strategies to avoid safety crises in the community but experienced multiple care breakdowns in both community and health care settings. Nursing home admission was a strategy used to avoid a crisis when residents did not receive the needed support to remain in the community. DISCUSSION AND IMPLICATIONS: To successfully remain in the community, older adults require specialized supports targeting mental health and substance use needs, as well as enhanced hospital discharge plans and improved information about community-based care options. Implications involve reforming policies and practices in both hospital and community-based care settings.

Video feedback: A novel application to enhance person-centred dementia communication.

AIM: A discussion of the use of video feedback as an effective and feasible method to promote person-centred communication approaches within dementia care and long-term care. BACKGROUND: Effective strategies to integrate person-centred approaches into health care settings have attracted global attention and research in the past two decades. Video feedback has emerged as technique to enhance reflective learning and person-centred practice change in some care settings; however, it has not been tested in the context of person-centred dementia communication in long-term care. DESIGN: Discussion paper. DATA SOURCES: Articles dating from 1995 to 2018 retrieved via searches of the SCOPUS, CINAHL, MEDLINE and Cochrane Systematic Review databases. IMPLICATIONS FOR NURSING: Inclusion of video feedback in a person-centred dementia communication intervention for nurses and other health care providers may effectively fill a gap evident in the literature. This intervention can offer feedback of enhanced quality and enduring impact on behaviour change relative to traditional training. CONCLUSION: A critical review of empirical and theoretical evidence supports video feedback as a potential means to enhance person-centred communication within the context of dementia and long-term care. The promising benefits of video feedback present a novel research opportunity to pilot its use to enhance person-centred communication between nurses/health care providers and persons with dementia in long-term care.

Critical nursing and health care aide behaviors in care of the nursing home resident dying with dementia.

BACKGROUND: With the aging of the population, dying with dementia will become one of the most common ways in which older adults will end their final years of life, particularly for those living in a nursing home. Though individuals living with dementia have complex care needs and would benefit from a palliative approach to care, they have traditionally not been recipients of such care. An important aspect of determining quality in end-of-life care is the identification of expert practices, processes or behaviors that may help achieve this care. However, for those living with dementia in nursing homes, we have a limited understanding of how to best support expert end of life care. To redress this gap in knowledge, the purpose of this study was to examine and describe expert care of the individual with dementia approaching death from the perspective of nurses and health care aides (HCAs) identified by their peers as having special expertise in caring for this population. METHODS: A qualitative research design known as Interpretative Description was used to conduct the study. Expert nurses and HCAs were identified through a two-phase nomination process. Individual semi-structured interviews were conducted with consenting participants. Data were analyzed using constant comparative analysis to determine the key critical behaviors. RESULTS: Analysis of data collected from expert nurses (n = 8) and HCAs (n = 7) revealed six critical behaviors when caring for residents dying with dementia. All nurses and HCAs unanimously endorsed that the overarching goal of care is similar for all residents who are actively dying; to achieve comfort. The six critical behaviors in caring for residents dying with dementia included: 1) recognizing and responding to changes in a resident's pattern of behavior; 2) attending to the person; 3) working with the family; 4) engaging with others; 5) responding after the death has occurred; and 6) having a positive attitude toward care of the dying. CONCLUSIONS: The critical behaviors described by nurses and HCAs in this study provides emerging evidence of best practices in care of those with dementia and their families, particularly near the end of life within the nursing home setting.

Ethical and moral considerations of (patient) centredness in nursing and healthcare: Navigating uncharted waters.

This discussion paper aims to explore potential ethical and moral implications of (patient) centredness in nursing and healthcare. Healthcare is experiencing a philosophical shift from a perspective where the health professional is positioned as the expert to one that re-centres care and service provision central to the needs and desires of the persons served. This centred approach to healthcare delivery has gained a moral authority as the right thing to do. However, little attention has been given to its moral and ethical theoretical grounding and potential implications for nurses, persons served and the healthcare system. Based upon a review of academic and grey literature, centredness is proposed as a value-laden concept in nursing inquiry. Potential moral and ethical implications of centredness on nurses/healthcare providers, persons served and the healthcare system are discussed. These challenges are then considered within the context of normative and relational ethical theories. These perspectives may offer guidance relative to how one should act in those circumstances as well as an understanding as to how interdependency and engagement with the other person(s) can help navigate the challenges of a centred care approach. Viewing centredness through an ethical theoretical lens provides a valuable discourse to nursing in efforts to expand the knowledge base and integrate centred approaches into practice and policy.

Meaningful connections in dementia end of life care in long term care homes.

BACKGROUND: Most persons with dementia die in long term care (LTC) homes, where palliative approaches are appropriate. However, palliative approaches have not been widely implemented and there is limited understanding of staff and family experiences of dying and bereavement in this context. METHOD: This descriptive qualitative study explored family and staff experiences of end of life and end of life care for persons with dementia in LTC homes. Eighteen focus groups were conducted with 77 staff members and 19 relatives of persons with dementia at four LTC homes in four Canadian provinces. RESULTS: Three themes emerged: knowing the resident, the understanding that they are all human beings, and the long slow decline and death of residents with dementia. DISCUSSION: Intimate knowledge of the person with dementia, obtained through longstanding relationships, was foundational for person-centred end of life care. Health care aides need to be included in end of life care planning to take advantage of their knowledge of residents with dementia. There were unmet bereavement support needs among staff, particularly health care aides. Persons with dementia were affected by death around them and existing rituals for marking deaths in LTC homes may not fit their needs. Staff were uncomfortable answering relatives' questions about end of life. CONCLUSIONS: Longstanding intimate relationships enhanced end of life care but left health care aides with unmet bereavement support needs. Staff in LTC homes should be supported to answer questions about the trajectory of decline of dementia and death. Further research about residents' experiences of deaths of other residents is needed.

Assessing Symptoms, Concerns, and Quality of Life in Noncancer Patients at End of Life: How Concordant Are Patients and Family Proxy Members?

CONTEXT: It has become commonplace to use family caregivers as proxy responders where patients are unable to provide information about their symptoms and concerns to health care providers. OBJECTIVES: The objective of this study was to determine the degree of concordance between patients' and family members' reports of patient symptoms and concerns at end of life. METHODS: Sample dyads included a mix of patients residing at home, in a nursing home, in a long-term care facility, or in hospice. Diagnoses included patients with amyotrophic lateral sclerosis (n = 75), chronic obstructive pulmonary disease (n = 52), end-stage renal disease (n = 42), and institutionalized, cognitively intact frail elderly (n = 49). Dyads completed the Patient Dignity Inventory (PDI), the modified Structured Interview Assessment of Symptoms and Concerns in Palliative Care, and Graham and Longman's two-item Quality of Life Scale. RESULTS: Concordance was less than 70% for seven of the 25 PDI items, with the lowest concordance (65.1%) for the item "not being able to continue with my usual routines." For all but one PDI item, discordance was in the direction of family members reporting that the patient was worse off than the patient had indicated. Where discordance was observed on the Structured Interview Assessment of Symptoms and Concerns in Palliative Care and Quality of Life Scales, the trend toward family members overreporting patient distress and poor quality of life continued. CONCLUSION: Understanding discordance between patients and family member reports of symptoms and concerns is a valuable step toward minimizing patient and family burden at end of life.

Developing and testing a nursing home end -of -life care chart audit tool.

BACKGROUND: Nursing home (NH) administrators need tools to measure the effectiveness of care delivered at the end of life so that they have objective data on which to evaluate current practices, and identify areas of resident care in need of improvement. METHODS: A three-phase mixed methods study was used to develop and test an empirically derived chart audit tool aimed at assessing the care delivered along the entire dying trajectory. RESULTS: The Auditing Care at the End of Life (ACE) instrument contains 27 questions captured across 6 domains, which are indicative of quality end-of-life care for nursing home residents. CONCLUSIONS: By developing a brief chart audit tool that captures best practices derived from expert consensus and the research literature, NH facilities will be equipped with one means for monitoring and assessing the care delivered to dying residents.

Pain Trajectories of Nursing Home Residents Nearing Death.

BACKGROUND/OBJECTIVES: Although examining point in time prevalence of pain among nursing home (NH) residents has value, there is a lack of evidence describing the actual changes (ie, trajectories) in pain that take place during their last 6 months of life. The main objective of this study is to describe the major pain trajectories experienced by NH residents during their last 6 months of life. DESIGN: Secondary analysis of Resident Assessment Instrument-Minimum Data Set (MDS) 2.0 data captured as part of the longitudinal Translating Research in Elder Care data repository. SETTING: Twenty-seven urban NHs in Western Canada. PARTICIPANTS: A total of 962 NH residents who died, had an MDS assessment completed within 30 days of death, and resided in a NH for at least 6 months. Pain trajectories were stratified by residents who were not severely cognitively impaired [Cognitive Performance Scale (CPS) ≤3] and those with severe impairment (CPS ≥4) at death. MEASUREMENTS: MDS-Pain Scale; CPS. RESULTS: In the 6 months before death, 60.1% of residents without severe cognitive impairment experienced consistently low pain; 34.6% reported experiencing either moderate to severe pain or significant increases in pain during this same period of time, and only 5.3% experienced any degree of pain improvement. When the trajectories were examined, most residents without severe cognitive impairment experienced no to mild pain in the time before their death (65.5%); however, we identified a group of residents who exhibited a pattern of pain that worsened or remained consistently high right until death (38.2%). Although the proportion of residents with "low/mild" pain trajectories was statistically greater among those who were severely impaired vs those without severe cognitive impairment, across both cognitive impairment groups, the general trend in pain trajectories is similar; with about 60% of residents experiencing either consistent low or mild pain in their last 6 months of life, and about 34% experiencing either substantially high or increasing pain levels. CONCLUSIONS: Although a majority of NH residents experienced consistently low or improved pain levels in their last 6 months of life, a substantial number experienced consistently high or substantially worsening pain levels during this same time period. These results highlight the need to better manage pain levels for some NH residents during this important period of time.

Identifying Markers of Dignity-Conserving Care in Long-Term Care: A Modified Delphi Study.

Ensuring that people living in nursing homes (NHs) are afforded with dignity in their daily lives is an essential and humane concern. Promoting dignity-conserving care is fundamentally important. By nature, however, this care is all-encompassing and holistic, and from current knowledge it is challenging to create explicit strategies for measuring dignity-conserving care. In practice the majority of current NH indicators of quality care are derived from information that is routinely collected on NH residents using the RAI-Minimum Data Set (MDS). In this regard, issues that are more tangible to resident dignity such as being treated with respect, compassion, and having opportunities to engage with others are not adequately captured in current NH quality of care indicators. An initial set of markers was created by conducting an integrative literature review of existing markers and indicators of dignity in the NH setting. A modified Delphi process was used to prioritize essential dignity-conserving care markers for use by NH providers, based on factors such as the importance to fostering a culture of dignity, the impact it may have on the residents, and how achievable it is in practice. Through this consensus building technique, we were able to develop a comprehensive set of markers that capture the range and diversity of important dignity-conserving care strategies for use in NHs. The final 10 markers were judged as having high face validity by experts in the field and have explicit implications for enhancing the provision of daily dignified care to NH residents. These markers make an important addition to the traditional quality indicators used in the NH setting and as such, bridge an important gap in addressing the psychosocial and the less easily quantified needs of NH residents.

Impact of Symptoms and Care Practices on Nursing Home Residents at the End of Life: A Rating by Front-line Care Providers.

OBJECTIVES: Burdensome symptoms and potentially inappropriate care practices are common at the end of life for nursing home residents. Appropriately managing symptoms and limiting aggressive care practices is key to high-quality end-of-life care. Little research is available, however, on the opinions of nursing home care providers about the impact of symptoms and practices for both residents and care facilities. Our objectives were to (1) identify common burdensome symptoms and potentially inappropriate practices at the end of life for nursing home residents, (2) develop and assess the feasibility of a procedure to have various groups of nursing home care providers rate impact of symptoms and practices, and (3) generate recommendations for action and further research, with key policy and decision makers. DESIGN: Proof-of-concept study. Partnered research by researchers, health professionals, and decision makers to identify and explore the impact of burdensome symptoms and potentially inappropriate care practices for nursing home residents at the end of life. SETTING: Thirty-six nursing homes from Alberta, Manitoba, and Saskatchewan. PARTICIPANTS: A total of 6007 residents (prevalence rating); 4 medical directors, 5 directors of care, 4 nurse practitioners, 4 registered nurses, 5 licensed practical nurses, 5 care aides (impact rating); and 13 key policy or decision makers from Alberta, British Columbia, and Manitoba (expert panel). METHODS: Based on a literature search and data in the Resident Assessment Instrument-Minimum Data Set (RAI-MDS) 2.0, we generated lists of burdensome symptoms and potentially inappropriate care practices for nursing home residents at the end of life. We rated prevalence of those symptoms and practices in the last quarter before death as high, medium, or low. Care providers rated the burden of symptoms and inappropriateness of practices as high, medium, or low. Directors of care rated the unnecessary cost of those symptoms and practices to a nursing home as high, medium, or low. We ranked symptoms and practices based on those ratings. We discussed our findings in an interactive expert panel and generated recommendations for action and further research. MEASUREMENTS: RAI-MDS 2.0 (symptom prevalence rating); online survey to rate symptoms and practices (impact rating). RESULTS: The 3 most prevalent symptoms were urinary incontinence (79.7%), fecal incontinence (66.7%), and responsive behaviors (63%). The 3 most prevalent practices were polypharmacy (9+ medications; 55.2%), antipsychotic use with no diagnosis of psychosis (29.2%), and physical restraint use (18.7%). The symptoms rated as having highest overall impact were pain, responsive behaviors, and urinary incontinence. Practices rated as having the most impact were polypharmacy, hospital and emergency department transitions, and antipsychotic use with no diagnosis of psychosis. CONCLUSION: Burdensome symptoms and inappropriate care practices near the end of life for residents in nursing homes are highly prevalent. Attending to those symptoms and practices is necessary to improve the quality of dying for nursing home residents. Our study provides preliminary demonstration of the feasibility and importance of engaging the spectrum of care providers in assessing the impact of symptoms and care practices on resident experience. Experiences of this proof-of-concept study will be the basis for the development of an indicator profile to monitor and improve quality of end-of-life care in nursing homes in the future.

Dying in a nursing home: treatable symptom burden and its link to modifiable features of work context.

IMPORTANCE: High-quality care at the end of life supports freedom from pain and other potentially burdensome symptoms. Lowering symptom burden at the end of life is an urgent and achievable goal in delivering services in nursing home settings. Few published reports describe symptom burden among older adults in nursing homes; none examine links between symptom burden and modifiable features of nursing home organizational context (work environment). OBJECTIVES: To examine the influence of organizational context on symptom burden and to compare symptom burden in the last year of life between nursing home residents with and without dementia. DESIGN: Retrospective analysis of longitudinal survey data. SETTING: A stratified random sample of 36 nursing homes in the Canadian provinces of Alberta, Manitoba, and Saskatchewan. PARTICIPANTS: A total of 2635 residents with dementia and 1012 without dementia; 1381 front-line care staff. MEASUREMENTS: (1) Trajectories of 6 symptoms (dyspnea, pain, pressure ulcers, urinary tract infections, challenging behavior, delirium), assessed with the Resident Assessment Instrument-Minimum Data Set, version 2.0, between 2008 and 2012. All residents received assessments in each quarter of the year before death. (2) Modifiable organizational context, assessed with the Alberta Context Tool. Hierarchical mixed model, repeated measures regression, to simultaneously evaluate effects of time, dementia, and context on symptom trajectories. RESULTS: For all residents, prevalence of symptoms increased over time. In the last quarter before death, challenging behavior was the most frequent symptom in the dementia group (40.2%), delirium the most frequent symptom in the nondementia group (31.0%), and urinary tract infections least frequent (9.0% to 10.0%). Facilities with more favorable context had significantly higher prevalence of challenging behavior and delirium and significantly lower use of antipsychotics without diagnosis of psychosis. CONCLUSION: Symptom burden increases as the end of life approaches but differs between high- and low-context facilities and between residents with and without dementia. Trajectories of treatable, burdensome symptoms at the end of life in nursing homes should be a priority focus for quality improvement. Modifiable features of organizational context that are linked to symptom burden offer new potential strategies and interventions for quality improvement.

Understanding the needs of family caregivers of older adults dying with dementia.

OBJECTIVES: A challenge in understanding the needs of dementia family caregivers (DFC) within the purview of dementia as a terminal illness rests on the fact that literature in this area is dispersed across disciplines and not specifically grounded within the realm of palliative care. The objective of this paper is to describe the domains of DFC needs and their impact on the delivery of palliative care services. METHODS: A literature search pertaining to dementia family caregivers and palliative/end-of-life care was conducted using the databases Medline, CINHAL, Ageline, PsychInfo, and Scopus for articles published in the English language between 1997 and 2011. RESULTS: Supporting family caregivers of individuals with dementia throughout the disease trajectory requires consideration of caregivers : (1) physical, emotional, and psychological needs; (2) information and decisional support needs; and (3) instrumental support needs. The unique nature and prolonged duration of these needs directly influences the palliative care services and supports required by these family caregivers. SIGNIFICANCE OF RESULTS: Understanding the scope of DFC needs help further our understanding of how these needs may impact the delivery of palliative care services, and assists in developing a model of care for those dying from dementia and for their family caregivers.

Understanding bereaved family members' dissatisfaction with end-of-life care in nursing homes.

With increasing numbers of older adults identifying a nursing home (NH) as their final place of care, it is important to assess the quality of dying in this setting and understand factors that impact family members' dissatisfaction with end-of-life care. A retrospective bereaved family member survey (N = 208) was conducted in 21 NHs located in urban areas of central Canada. Bereaved family members who were dissatisfied with care identified significantly more concerns in all domains assessed and were more likely to have problems with: (a) receiving confusing information from nursing staff about the resident's care, including medical treatments; (b) receiving inadequate information from nursing staff; and (c) feeling that end-of-life care was different than they had expected. Since the quality of communication between nurses, residents, and family members is the main factor that determines families' dissatisfaction with care, strategies and interventions aimed at reducing unmet information needs will be vital to improving end-of-life care in NHs.

How respect and kindness are experienced at the end of life by nursing home residents.

Respect and kindness are core principles of nursing practice, yet little is known about how they are experienced by nursing home (NH) residents at the end of life. The aim of this study was to examine the factors associated with being treated with respect and kindness in the last month of life as an NH resident. A retrospective survey of 208 bereaved family members was conducted in 21 NHs located in a city in central Canada. The majority of participants indicated that the resident had always been treated with respect or kindness. However, significant differences emerged, with not all family members believing that their loved one had always been treated with respect or kindness. The apparent lapses in care practices are troubling and indicate that steps must be taken to address them.

Reducing the potential for suffering in older adults with advanced cancer.

OBJECTIVE: To deliver quality care at the end of life, understanding the impact of various changes and life transitions that occur in older age is essential. This review seeks to uncover potential sources of distress in an elder's physical, psychological, social, and spiritual well-being to shed light on the unique challenges and needs facing this age group. METHODS: Papers relating to older adults (aged 65 years and older or a mean age of 65 years and older) with advanced/terminal cancer receiving palliative, hospice, or end-of-life care published after 1998 were reviewed. RESULTS: Older adults with advanced cancer have unique needs related to changes in their physical, psychological, social, and spiritual well-being. Changes in each of these domains offer not only the risk of causing distress but also the potential for growth and development during the final stages of advanced cancer. SIGNIFICANCE OF RESULTS: Being aware of the various changes that occur with aging will help health care professionals tailor interventions to promote dignity-conserving care and greatly reduce the potential for suffering at the end of life.

Prognostic acceptance and the well-being of patients receiving palliative care for cancer.

PURPOSE: To identify the impact of prognostic acceptance/nonacceptance on the physical, psychological, and existential well-being of patients with advanced cancer. PATIENTS AND METHODS: A Canadian multicenter prospective national survey was conducted of patients diagnosed with advanced cancer with an estimated survival duration of 6 months or less (n = 381) receiving palliative care services. RESULTS: Of the total number of participants, 74% reported accepting their situation and 8.6% reported accepting with "moderate" to "extreme" difficulty. More participants with acceptance difficulties than without acceptance difficulties met diagnostic criteria for a depressive or anxiety disorder (chi(2) = 8.67; P < .01). Nonacceptors were younger (t = 4.13; P < .000), had more than high school education (chi(2) = 4.69; P < .05), and had smaller social networks (t = 2.53; P < .05) than Acceptors. Of the Nonacceptors, 42% described their experience as one of "moderate" to "extreme" suffering compared with 24.1% of Acceptors (chi(2) = 5.28; P < .05). More than one third (37.5%) of Nonacceptors reported feeling hopeless compared with 8.6% who had no difficulty accepting (chi(2) = 24.76; P < .000). Qualitatively, participants described active and passive coping strategies that helped them accept what was happening to them, as well as barriers that made it difficult to come to terms with their current situation. CONCLUSION: The challenge of coming to terms with a terminal prognosis is a complex interplay between one's basic personality, the availability of social support, and one's spiritual and existential views on life. Nonacceptance appears to be highly associated with feelings of hopelessness, a sense of suffering, depression, and anxiety, along with difficulties in terms of social-relational concerns.