The Difficulties of Managing Pain in People Living with Frailty: The Potential for Digital Phenotyping.

Pain and frailty are closely linked. Chronic pain is a risk factor for frailty, and frailty is a risk factor for pain. People living with frailty also commonly have cognitive impairment, which can make assessment of pain and monitoring of pain management even more difficult. Pain may be sub-optimally treated in people living with frailty, people living with cognitive impairment and those with both these factors. Reasons for sub-optimal treatment in these groups are pharmacological (increased drug side effects, drug-drug interactions, polypharmacy), non-pharmacological (erroneous beliefs about pain, ageism, bidirectional communication challenges), logistical (difficulty in accessing primary care practitioners and unaffordable cost of drugs), and, particularly in cognitive impairment, related to communication difficulties. Thorough assessment and characterisation of pain, related sensations, and their functional, emotional, and behavioural consequences ("phenotyping") may help to enhance the assessment of pain, particularly in people with frailty and cognitive impairment, as this may help to identify who is most likely to respond to certain types of treatment. This paper discusses the potential role of "digital phenotyping" in the assessment and management of pain in people with frailty. Digital phenotyping is concerned with observable characteristics in digital form, such as those obtained from sensing-capable devices, and may provide novel and more informative data than existing clinical approaches regarding how pain manifests and how treatment strategies affect it. The processing of extensive digital and usual data may require powerful algorithms, but processing these data could lead to a better understanding of who is most likely to benefit from specific and targeted treatments.

Healthcare professionals' perceptions of dignity-preserving care for older home-dwelling women with incurable cancer in Norway.

Municipal end-of-life care for older home-dwelling patients with cancer is a complex matter requiring healthcare professionals (HCPs) to recognize gender differences in a social, historical and organizational context. A qualitative approach was chosen to explore and identify HCPs value-based principles and organizational conditions promoting dignity-preserving care practice for these women. HCPs recognized the importance of sheltering the women's identity, their sense of being home and acknowledged their personal preferences as value-based principles, whereas creating a flexible culture of care, establishing a functional professional collaboration and developing individualized plans of care, were crucial organizational conditions influencing the practice of dignity-preserving care.

Pain, Complex Chronic Conditions and Potential Inappropriate Medication in People with Dementia. Lessons Learnt for Pain Treatment Plans Utilizing Data from the Veteran Health Administration.

Alzheimer's disease and related dementias (ADRD), pain and chronic complex conditions (CCC) often co-occur leading to polypharmacy and with potential inappropriate medications (PIMs) use, are important risk factors for adverse drug reactions and hospitalizations in older adults. Many US veterans are at high risk for persistent pain due to age, injury or medical illness. Concerns about inadequate treatment of pain-accompanied by evidence about the analgesic efficacy of opioids-has led to an increase in the use of opioid medications to treat chronic pain in the Veterans Health Administration (VHA) and other healthcare systems. This study aims to investigate the relationship between receipt of pain medications and centrally (CNS) acting PIMs among veterans diagnosed with dementia, pain intensity, and CCC 90-days prior to hospitalization. The final analytic sample included 96,224 (81.7%) eligible older veterans from outpatient visits between October 2012-30 September 2013. We hypothesized that veterans with ADRD, and severe pain intensity may receive inappropriate pain management and CNS-acting PIMs. Seventy percent of the veterans, and especially people with ADRD, reported severe pain intensity. One in three veterans with ADRD and severe pain intensity have an increased likelihood for CNS-acting PIMs, and/or opioids. Regular assessment and re-assessment of pain among older persons with CCC, patient-centered tapering or discontinuation of opioids, alternatives to CNS-acting PIMs, and use of non-pharmacological approaches should be considered.

Dignity of older home-dwelling women nearing end-of-life: Informal caregivers' perception.

BACKGROUND: Most older people wish to live in the familiar surroundings of their own home until they die. Knowledge concerning dignity and dignity loss of home-dwelling older women living with incurable cancer should be a foundation for quality of care within municipal healthcare services. The informal caregivers of these women can help increase the understanding of sources related to dignity and dignity loss. AIM: The aim of this study was to explore informal caregivers' perceptions of sources related to dignity and dignity loss in end-of-life of older home-dwelling women with incurable cancer. RESEARCH DESIGN AND METHOD: The study was founded upon Gadamer's philosophical hermeneutics. In-depth interviews with 13 informal caregivers were carried out, and four participant observations were performed during home meetings. ETHICAL CONSIDERATION: The study was based on voluntary participation, informed consent, confidentiality and the opportunity to withdraw at any time. The Norwegian Social Science Data Services approved the study. RESULTS: Three main sources important in preserving the older women's dignity were identified: maintaining one's self-concept, remaining hopeful and sustaining freedom of choice. We also identified three main sources that lead to dignity loss: Sensing loss of human value, experiencing absence of gentleness and feelings of being treated as an object. DISCUSSION AND FINAL CONSIDERATIONS: On the individual level, the opportunity to maintain one's self-concept and control in life, preserved dignity, while feelings of existential loneliness led to dignity loss. On the relational level, being confirmed as worthy human beings promoted the women's dignity, whereas dignity loss was related to uncaring behaviours from healthcare professionals. On the societal level, individual decisions concerning travel situations and the place to stay when nearing end-of-life were of crucial importance. Constituting these women's living space, these perspectives should be emphasized in healthcare professionals' educational training and in the municipal end-of-life care of these patients.

Dignity and loss of dignity: Experiences of older women living with incurable cancer at home.

In this study, we explored and identified crucial experiences that constitute dignity and loss of dignity among older women living with incurable cancer at home. In-depth interviews with 13 women, and participant observations of five of these women, were performed. Hermeneutical interpretations of interview texts and field notes were conducted. Crucial experiences that preserved the women's dignity included having a sense of control, making one's own decisions, experiencing hope and meaningfulness, feeling valued as a human being and having the opportunity to be in a treasured and nurturing environment. Dignity loss was related to losing the opportunity for self-determination, sensing hopelessness and worthlessness in a shroud of illness, experiencing violation of their personal life and being situated in surroundings that enhanced their sense of disconnection and alienation. Quality of care was experienced as more important than the physical place in which to spend their final stage of life. The findings suggest that dignity preservation should be a core dimension in care for older women living with incurable cancer at home. Future research should investigate how dignity-preserving care can be organized and practiced within municipal palliative care services.

General practitioners' provision of end-of-life care and associations with dying at home: a registry-based longitudinal study.

BACKGROUND: General practitioners (GPs) may play an important role in providing end-of-life care to community-dwelling people. OBJECTIVE: To investigate patients' contacts with GPs, GPs' interdisciplinary collaboration, out-of-hours services and hospitalizations in the last 13 weeks of life and associations with dying at home. Second, investigate whether GP contacts were associated with fewer out-of-hours contacts or days hospitalized. METHODS: Individually linked data from the Norwegian Cause of Death Registry, Norwegian Patient Registry, Statistics Norway and Control and Payment of Reimbursement to Health Service Providers database for all 80 813 deceased people in Norway within 2012-13. Outcomes were analyzed with logistic regression and negative binomial multilevel mixed-effect models. RESULTS: Overall, 1% of people received GP home visits in Week 13 and 4.6% in the last week before death. During the last 4 weeks of life, 9.2% received one or more GP home visits. Altogether, 6.6% received one or more home visits when the GP had one or more interdisciplinary collaborations during the last 4 weeks, of which <3% died at home. GP office consultations decreased towards the end of life. The likelihood of home death versus another location increased in relation to GP home visits [one home visit odds ratio (OR) 1.92, confidence interval (CI) 1.71-2.15; two or more OR 3.49, CI 3.08-3.96] and GP interdisciplinary collaboration (one contact OR 1.76, CI 1.59-1.96; two or more OR 2.52, CI 2.32-2.74). CONCLUSIONS: GPs play a role in enabling people to die at home by performing home visits and collaborating with other health care personnel. Only a minority received such services in Norway.

Associations between home deaths and end-of-life nursing care trajectories for community-dwelling people: a population-based registry study.

BACKGROUND: Few studies have estimated planned home deaths compared to actual place of death in a general population or the longitudinal course of home nursing services and associations with place of death. We aimed to investigate trajectories of nursing services, potentially planned home deaths regardless of place of death; and associations of place of death with potentially planned home deaths and nursing service trajectories, by analyzing data from the last 90 days of life. METHODS: A retrospective longitudinal study with data from the Norwegian Cause of Death Registry and National registry for statistics on municipal healthcare services included all community-dwelling people who died in Norway 2012-2013 (n = 53,396). We used a group-based trajectory model to identify joint trajectories of home nursing (hours per week) and probability of a skilled nursing facility (SNF) stay, each of the 13 weeks leading up to death. An algorithm estimated potentially planned home deaths. We used a multinomial logistic regression model to estimate associations of place of death with potentially planned home deaths, trajectories of home nursing and short-term SNF. RESULTS: We identified four home nursing service trajectories: no (46.5%), accelerating (7.6%), decreasing (22.1%), and high (23.5%) home nursing; and four trajectories of the probability of a SNF stay: low (69.0%), intermediate (6.7%), escalating (15.9%), and increasing (8.4%) SNF. An estimated 24.0% of all deaths were potentially planned home deaths, of which a third occurred at home. Only high home nursing was associated with increased likelihood of a home death (adjusted relative risk ratio (aRRR) 1.29; CI 1.21-1.38). Following any trajectory with elevated probability of a SNF stay reduced the likelihood of a home death. CONCLUSIONS: We estimated few potentially planned home deaths. Trajectories of home nursing hours and probability of SNF stays indicated possible effective palliative home nursing for some, but also missed opportunities of staying at home longer at the end-of-life. Continuity of care seems to be an important factor in palliative home care and home death.

Comorbid Dementia and Cancer in Residents of Nursing Homes: Secondary Analyses of a Cross-Sectional Study.

BACKGROUND: Life expectancy is increasing continuously, which increases the likelihood of developing dementia or cancer. Both dementia and cancer are serious conditions that give manifold symptoms. The interaction of these conditions is however complex and less explored. OBJECTIVES: The aim of this study was to identify the prevalence of cancer and differences regarding neuropsychiatric symptoms (NPS) and medication among nursing home (NH) patients with and without dementia and cancer. METHODS: This is a cross-sectional study of Norwegian NH patients (N = 1825). Participants were categorized according to degree of dementia (Clinical Dementia Rating > 1) and cancer diagnoses. Differences in NPS and other symptoms, as well as the use of medication, were explored. RESULTS: Eighty-four percent of NH patients had dementia, and 5.5% had comorbid dementia and cancer. Patients with comorbid dementia and cancer received significantly more analgesics compared with patients without cancer but with dementia (P < .05). Compared with patients without dementia but with cancer, patients with comorbid dementia and cancer had significantly more NPS, including sleep disturbances and agitation. CONCLUSIONS: Patients with comorbid dementia and cancer receive more analgesics than patients with dementia but still display more agitation and sleep disturbances than patients with cancer and patients with neither dementia nor cancer, suggesting that symptoms may not be treated adequately. IMPLICATIONS FOR PRACTICE: The results indicate a considerable strain for patients with comorbid dementia and cancer and highlight essential challenges for the clinician who is responsible for treatment and care. Nurses should pay attention to agitation and sleep disturbances among patients with comorbid dementia and cancer.

The Liverpool Care Pathway: discarded in cancer patients but good enough for dying nursing home patients? A systematic review.

BACKGROUND: The Liverpool Care Pathway (LCP) is an interdisciplinary protocol, aiming to ensure that dying patients receive dignified and individualized treatment and care at the end-of-life. LCP was originally developed in 1997 in the United Kingdom from a model of cancer care successfully established in hospices. It has since been introduced in many countries, including Norway. The method was withdrawn in the UK in 2013. This review investigates whether LCP has been adapted and validated for use in nursing homes and for dying people with dementia. METHODS: This systematic review is based on a systematic literature search of MEDLINE, CINAHL, EMBASE, and Web of Science. RESULTS: The search identified 12 studies, but none describing an evidence-based adaption of LCP to nursing home patients and people with dementia. No studies described the LCP implementation procedure, including strategies for discontinuation of medications, procedures for nutrition and hydration, or the testing of such procedures in nursing homes. No effect studies addressing the assessment and treatment of pain and symptoms that include dying nursing home patients and people with dementia are available. CONCLUSION: LCP has not been adapted to nursing home patients and people with dementia. Current evidence, i.e. studies investigating the validity and reliability in clinically relevant settings, is too limited for the LCP procedure to be recommended for the population at hand. There is a need to develop good practice in palliative medicine, Advance Care Planning, and disease-specific recommendations for people with dementia.

Prevalence of the Use of Opioids for Treatment of Pain in Persons with a Cognitive Impairment Compared with Cognitively Intact Persons: A Systematic Review.

AIM: To describe the prevalence of opioid use in persons with a cognitive impairment compared with cognitively intact persons and to explore factors associated with opioid prescription. METHOD: A search was made in PubMed (Medline), Embase, Cochrane, Central, Cinahl, PsychInfo and Web of Science and additional articles were identified by manual search of reference lists. Titles and abstracts were screened and eligible articles reviewed in full-text. A citation check was performed on the included articles for a complete search. Risk of bias of the included studies was assessed using an appropriate tool. RESULTS: The search yielded 610 unique hits and an additional 33 records were identified via reference checking. After screening, 23 studies were included. A citation tracking was performed for these 23 articles using Web of Science, which yielded an additional 421 articles for a second screening. After the second screening, 24 studies were included. Opioid use was divided into three classes: weak, strong, and weak and strong combined. In several articles there were more than one study conclusion on different opioid classes or in a different setting. Analysis was performed on the prevalence of opioid use (prescription rates) and the dosage of opioids. The 24 studies yielded a total of 35 study conclusions related to prescription rates and dosage. Of these, four showed a higher use of opioids in persons with a cognitive impairment, 14 an equal distribution, and 17 showed lower opioid use in cognitively impaired persons. CONCLUSION: This systematic review provides evidence for general undertreatment of pain with opioids in persons with a cognitive impairment.

Signs of Imminent Dying and Change in Symptom Intensity During Pharmacological Treatment in Dying Nursing Home Patients: A Prospective Trajectory Study.

OBJECTIVES: To investigate whether it is possible to determine signs of imminent dying and change in pain and symptom intensity during pharmacological treatment in nursing home patients, from day perceived as dying and to day of death. DESIGN: Prospective, longitudinal trajectory trial. SETTING: Forty-seven nursing homes within 35 municipalities of Norway. PARTICIPANTS: A total of 691 nursing home patients were followed during the first year after admission and 152 were assessed carefully in their last days of life. MEASUREMENTS: Time between admission and day of death, and symptom severity by Edmonton symptom assessment system (ESAS), pain (mobilization-observation-behavior-intensity-dementia-2), level of dementia (clinical dementia rating scale), physical function (Karnofsky performance scale), and activities of daily living (physical self-maintenance scale). RESULTS: Twenty-five percent died during the first year after admission. Increased fatigue (logistic regression, odds ratio [OR] 1.8, P = .009) and poor appetite (OR 1.2, P = .005) were significantly associated with being able to identify the day a person was imminently dying, which was possible in 61% of the dying (n = 82). On that day, the administration of opioids, midazolam, and anticholinergics increased significantly (P < .001), and was associated with amelioration of symptoms, such as pain (mixed-models linear regression, 60% vs 46%, P < .001), anxiety (44% vs 31%, P < .001), and depression (33% vs 15%, P < .001). However, most symptoms were still prevalent at day of death, and moderate to severe dyspnea and death rattle increased from 44% to 53% (P = .040) and 8% to 19% (P < .001), respectively. Respiratory symptoms were not associated with opioids or anticholinergics. CONCLUSION: Pharmacological treatment ameliorated distressing symptoms in dying nursing home patients; however, most symptoms, including pain and dyspnea, were still common at day of death. Results emphasize critical needs for better implementation of guidelines and staff education. TRIAL REGISTRATION: ClinicalTrials.govNCT01920100.

End-of-life palliative oral care in Norwegian health institutions. An exploratory study.

OBJECTIVE: To explore circumstances surrounding procedures and knowledge regarding oral care for terminal patients in Norwegian healthcare institutions. METHODS: A questionnaire was distributed to randomly selected hospitals (n = 19) and nursing homes (n = 57) in central and rural parts of Norway. The questionnaire included three closed-ended and three open-ended questions about oral care for terminal patients. If procedures existed, the respondents were asked to enclose or describe them. RESULTS: The response rate was 84% for hospitals and 79% for nursing homes. Of the responding institutions, 25% had no oral care procedures, nor did 48% recognise their importance. Insufficient knowledge about oral care was reported by 39%. Twenty-one different procedures were identified, and a great number of oral care products used. The most common was glycerol, used by 36% of the institutions. Only 2% used a concentration below 30% - the limit above which the glycerol has a desiccating rather than a moistening effect. The most common patient complaint was dry mouth (49%), followed by plaque, food particles and fungus infections, each experienced by 19%. The most common problem for the personnel was lack of knowledge (43%) and patient cooperation (38%). CONCLUSIONS: Some terminal patients do not receive adequate palliative oral care in Norwegian healthcare institutions. Those that do are exposed to a great number of undocumented procedures and sometimes harmful products. There is a need for evidence-based procedures for oral care for terminally ill patients in health institutions, establishing interprofessional palliative healthcare teams and in particular improved training of the nursing staff.

Cancer-related pain and symptoms among nursing home residents: a systematic review.

CONTEXT: Many older nursing home (NH) residents with cancer experience pain and distressing symptoms. Although some develop cancer during their time in the institution, an increasing number are admitted during their final stages of their lives. Numerous studies have evaluated various treatment approaches, but how pain and symptoms are assessed and managed in people with cancer with and without dementia is unclear. OBJECTIVES: The objective of this review was to summarize the evidence on cancer-related symptoms among NH residents with and without dementia. METHODS: We systematically searched the PubMed (1946-2012), Embase (1974-2012), CINAHL (1981-2012), AgeLine, and Cochrane Library (1998-2012) databases using the search terms neoplasms, cancer, tumor, and nursing home. The inclusion criteria were studies including NH residents with a diagnosis of cancer and outcome measures including pain and cancer-related symptoms. RESULTS: We identified 11 studies (cross-sectional, longitudinal, clinical trial, and qualitative studies). Ten studies investigated the prevalence and treatment of cancer-related symptoms such as vomiting, nausea, urinary tract infections, and depression. Studies clearly report a high prevalence of pain and reduced prescribing and treatment, regardless of the cognitive status. Only one small study included people with cancer and a diagnosis of dementia. Studies of new cancer diagnoses in NHs could not be identified. CONCLUSION: This review clearly reports a high prevalence of pain and reduced drug prescribing and treatment among NH residents with cancer. This issue appears to be most critical among people with severe dementia, emphasizing the need for better guidance and evidence on pain assessment for these individuals.