Delirium in advanced cancer: a psychoeducational intervention for family caregivers

Delirium, a global brain dysfunction, develops frequently in advanced cancer. It is a leading source of distress for family caregivers. Following recommendations from palliative care professionals and caregivers for terminally ill cancer patients, a psychoeducational intervention was implemented in a palliative care hospice to help family caregivers cope with delirium and, eventually, to contribute to early detection. Prior to receiving information on delirium, the majority of the family caregivers did not know what it was or that it could be treated. Few knew that patients in terminal care could become delirious. For caregivers, receiving the intervention increased their confidence they were making good decisions, and the majority felt that all family caregivers should be informed on the risk of delirium (p < 0.009). A specific intervention on delirium, tailored to the needs of the family caregivers, seems beneficial for caregivers and for patients.     

Sources of Palliative Care Knowledge Among Patients With Advanced or Metastatic Gynecologic Cancer

ContextA minority of patients with advanced or metastatic gynecologic cancer utilize palliative care and lack of knowledge may be a barrier to receiving palliative care services.ObjectivesTo identify sources used by patients with advanced or metastatic gynecologic cancer to learn about palliative care and evaluate for differences in knowledge about palliative care and palliative care utilization by knowledge source.MethodsPatients with gynecologic cancer receiving treatment for advanced or metastatic gynecologic cancer at a single academic medical center were surveyed about their awareness of and knowledge about palliative care. Medical chart review was conducted.ResultsOf the 111 women surveyed, 70 had heard of palliative care (63%). Sixty-eight specified from where they learned of palliative care: cancer care (n = 28; 41.2%), word of mouth (n = 26; 38.2%), work (n = 6; 8.8%), self-education (n = 4; 5.9%), personal experience (n = 2; 2.9%), or do not know (n = 2; 2.9%). Knowledge about palliative care (P = 0.35) and palliative care utilization (P = 0.81) did not differ by awareness of palliative care.ConclusionMost women receiving treatment for advanced gynecologic cancer have heard of palliative care from sources other than their cancer care providers. Knowledge about palliative care and source of knowledge about palliative care were not associated with palliative care utilization. Awareness of palliative care and palliative care utilization may be improved by increasing the low rate of health provider-based education and engaging cancer patients' social networks.     

Abhängigkeitssyndrom und Hyperalgesie durch Opioide bei kurativ behandelbaren Schmerzen

Opioids are an essential part of cancer pain management but particularly in this patient group physicians could misinterpret opioid-induced potentially life-threatening side effects within the central nervous system (CNS) or hyperalgesia as a consequence of tumor progression. In this case increasing the opioid dose or switching to rapidly acting opioids may trigger a vicious circle. We describe a case report of a male patient who was treated with high doses of transdermal and endonasal fentanyl 2 years after pancreatomy due to cancer. The patient was referred to the palliative care unit presenting with delirious behavior and 30-40 severe abdominal pain attacks/day. After withdrawal of the opioid medication all CNS symptoms disappeared. Further diagnostics revealed multiple incisional hernia as the reason of the pain syndrome. The patient recovered after herniotomy and has now been pain free without any pain medication for more than 16 months. This case report underlines again the necessity of pain diagnostics also in assumed palliative patients with the risks of high dose opioid treatment.     

Appropriateness and Reliability Testing of the Modified Richmond Agitation-Sedation Scale in Spanish Patients With Advanced Cancer

ContextA tool to quantify agitation severity and sedation level in patients with advanced cancer is needed.ObjectivesTo test the appropriateness and reliability of the Richmond Agitation-Sedation Scale (RASS) in Spanish patients with advanced cancer.MethodsThe original RASS was translated into Spanish according to the standard guidelines. Face validity was assessed by members of the palliative care team, and interrater reliability was assessed, using a weighted kappa, from observations of patients admitted to the palliative care unit. The association between scores of the RASS, Ramsay Sedation Scale, and Glasgow Coma Scale was evaluated using Spearman's ρ.ResultsThree hundred twenty-two observations were performed in 156 patients: 116 observations were performed for delirious patients, 76 observations for sedated patients, and 130 observations for patients admitted for other symptom control. The weighted kappa values were practically equal to or greater than 0.90 between nurses and nurses and physicians. The agreement level between observers for each RASS score was roughly 90%. The correlation between the RASS and the Ramsay and Glasgow Scale values was analyzed for 196 observations recorded in 80 patients. The sedation scale of the RASS had a strong correlation with both the Ramsay (Spearman's ρ, ?0.89; P < 0.001) and the Glasgow Coma Scales (Spearman's ρ, 0.85; P < 0.001).ConclusionThese data support the use of the RASS in Spanish patients with advanced cancer.     

人文关怀结合姑息护理在晚期癌症患者中的应用研究

目的探究与分析人文关怀结合姑息护理在晚期癌症患者中的应用研究。方法选取我院收治的60例晚期癌症患者为研究对象,随机分为观察组和对照组,每组各30例。观察组采用人文关怀结合姑息护理的治疗方案;对照组采用常规护理方式。观察并分析两组患者经不同方案治疗后的临床疗效。结果观察组患者在癌症中的不适反应如疼痛、焦虑、抑郁、食欲不振等较对照组患者少,并且对本组护理工作的满意度较对照组高(P0.05),具有统计学意义。结论在对晚期癌症患者的治疗过程中,人文关怀结合姑息护理治疗方案较不采用任何关怀的方案效果更加显著,不仅能够大大减轻癌症带来的痛苦,还能改善患者生活质量与心理状况,因此在临床上具有一定的积极意义。     

Involvement of general practitioners in palliative cancer care: a qualitative study

Purpose

General practitioners play an important role in palliative care for cancer patients. The intensity of care and its medical complexity make palliative care a demanding task for general practitioners. This study explored general practitioners' perceptions of their involvement in palliative cancer care and the constraints they confront.

Methods

We conducted semi-structured interviews with 13 German general practitioners. Recruitment occurred by means of purposeful sampling to secure maximum heterogeneity. The interviews were electronically recorded, transcribed, and then analyzed using qualitative content analysis according to Mayring.

Results

A number of themes were identified. General practitioners describe being intensely involved in the final phase of their patients' lives. When providing home-based end-of-life care to cancer patients, general practitioners become aware of the limitations in their medical skills and knowledge and their ability to provide round-the-clock care. They find it helpful and satisfying to collaborate with trusted care providers and seek to cooperate with specialized palliative care services for outpatients.

Conclusions

The substantial involvement of general practitioners in end-of-life care for cancer patients pushes them to their limits because of the major time commitment required, and the need for special skills for which they have received no training. It will be a challenge to provide general practitioners with the structural and personal support they need to provide home-based palliative care for their cancer patients at end of life.     

A case study: Concurrent palliative care based on SENS‐structure for patients with advanced prostate cancer

On an acute urological ward, it is challenging to meet all needs of patients with life‐limiting progressive cancer disease in complex situations. The focus shifts from curation to the holistic palliative approach aiming at patients' and their families' needs and planning care in advance with an interprofessional attitude. Based on a patient with castration refractory prostate carcinoma with multiple metastasis, the aim of this case study is to describe the palliative care approach, using the established so‐called SENS‐structure (Symptoms, End‐of‐life decisions, Network and Support of the carer) in which the bio‐, psycho‐, social and spiritual needs are addressed. We report on our practice experience using the SENS‐structure, in which the team discusses palliative care interventions with patients and their family: management of (potential) symptoms and self‐supporting strategies, expectations and end‐of‐life decisions including advance care planning, evaluation of patients' social and professional network and setting up additional support. The palliative care team provides advice to the treating team on future treatment strategies and care activities. The complex situation of a patient with metastatic prostate cancer and his personal sufferings illustrate the interprofessional use and person‐centred focus of the SENS‐structure. Important in this phase is—next to the family carers—the involvement of all professions and disciplines to break down the complexity of the situation into manageable proportions. Early involvement of palliative care for patients with advanced cancer is highly recommended. The SENS‐structure helps to prioritize and include the personalized approach which is strongly supported by nurses.     

Initial validation of the Mini-Mental Adjustment to Cancer (Mini-MAC) scale: Study of Portuguese end-of-life cancer patients

BackgroundThe Mini-Mental Adjustment to Cancer Scale (Mini-MAC) is a 29-item instrument designed to evaluate the responses developed by cancer patients during their mental adjustment to diagnosis and treatment.Purpose of the researchThis study aims to validate the Mini-Mental Adjustment to Cancer Scale (Mini-MAC) translated and adapted to the Portuguese language and culture, in end-of-life cancer patients receiving palliative care.Methods and designThe instrument was administered to 346 Portuguese end-of-life cancer patients, receiving care through outpatient visits or admitted into palliative care units, without cognitive symptoms and with symptoms under control. A cross-sectional validation study using orthogonal rotation through the varimax method followed by convergent and discriminant validity.Key resultsThe analysis of the main components confirms the existence of five factors, demonstrating the validity of the construct, with good internal consistency in the subscales and Cronbach's alpha values between 0.78 and 0.93. Good test-retest reliability was also found, and r values for subscales ranged from 0.62 to 0.99.ConclusionsThe instrument proved to be a reliable, valid and sensitive measure in the study of mental adjustment of Portuguese end-of-life patients with cancer receiving palliative care.Relevance to practiceNurses can use the Mini-MAC Scale in research and clinical practice in order to evaluate the mental adjustment of Portuguese end-of-life cancer patients receiving palliative care.     

Barriers to referral to inpatient palliative care units in Japan: a qualitative survey with content analysis

Objectives We investigated the barriers to referral to inpatient palliative care units (PCUs) through a qualitative study across various sources of information, including terminal cancer patients, their families, physicians, and nurses. Materials and methods There were 63 participants, including 13 advanced cancer patients, 10 family members, 20 physicians, and 20 nurses in palliative care and acute care cancer settings from five regional cancer institutes in Japan. Semi-structured interviews were conducted regarding barriers to referral to PCU, and data were analyzed by content analysis method. Results A total of 21 barriers were identified by content analysis. The leading barriers were (1) a negative image of PCUs by patients and families (n = 39), (2) delay of termination of anti-cancer treatment by physicians in the general wards (n = 24), (3) unwillingness to end anti-cancer treatment and denial of the fatal nature of the disease by patients and families (n = 22), (4) patient’s wish to receive care from familiar physicians and nurses (n = 20), and (5) insufficient knowledge of PCUs by medical staff in general wards (n = 17). Conclusions To correct these unfavorable images and misconceptions of PCUs, it is important to eliminate the negative image of PCUs from the general population, patients, families, and medical staffs. In addition, early introduction of palliative care options to patients and communication skills training regarding breaking bad news are relevant issues for a smooth transition from anti-cancer treatment to palliative care.     

Depression in cancer patients

Depression in cancer patients is common and occurs throughout the course of cancer illness. We review diagnosing, treatment and palliative care issues as well as epidemiology and etiology of major depression in cancer patients. The prevalence of major depression in cancer patients was reported to range from 6 to 42%. It reflects various cancer related variables, such as pain and low performance status as well as risks for major depression. To avoid under-diagnosing depression in cancer patient, it should include not only psychological symptoms, but also physical symptoms. The treatment includes patient education, counseling, behavioral techniques and antidepressant medications. In palliative care setting, life review interview would be effective for depression.     

Palliative care in chronic obstructive pulmonary disease

Chronic obstructive pulmonary disease (COPD) is the only major worldwide cause of mortality that is currently increasing in prevalence. Furthermore, COPD is incurable, and the only therapy that has been shown to increase survival is oxygen therapy in selected patients. Compared to patients with cancer, patients with COPD experience similar levels of pain, breathlessness, fatigue, depression, and anxiety and have a worse quality of life but have comparatively little access to palliative care. When these patients do receive palliative care, they tend to be referred later than patients with cancer. Many disease, patient-, and provider-related factors contribute to this phenomenon, including COPD's unpredictable course, misperceptions of palliative care among patients and physicians, and lack of advance care planning discussions outside of crisis situations. A new paradigm for palliative care would introduce palliative treatments alongside, rather than at the exclusion of disease-modifying interventions. This integrated approach would circumvent the issue of difficult prognostication in COPD, as any patient would receive individualized palliative interventions from the time of diagnosis. These points will be covered in this review, which discusses the challenges in providing palliative care to COPD patients, the strategies to mitigate the challenges, management of common symptoms, and the evidence for integrated palliative care models as well as some suggestions for future development.     

The development of use of oral morphine within the last 10 years in Japan

Japan's national cancer relief programme was initiated with a field-test of the WHO guidelines for cancer pain management in 1982. It revealed in an excellent result that 87% of 156 cancer patients could be completely relieved of their persistent pain, but this result were ignored by most Japanese health professionals, because of their lack of interest in cancer pain relief. The WHO guidelines were published in 1986 and made quite an impact on those health professionals in Japan. In 1987, a special research team appointed by the Ministry of Health and Welfare of Japan (MOHW) initiated discussion on the philosophy of palliative care in Japan. According to the recommendations made by this research team, the MOHW established a new policy on palliative care, edited manuals on palliative care for terminally ill cancer patients which included guidelines on cancer pain management, and revised narcotics control measures by 1992 in order to much improve the accessibility of opioid analgesics to cancer patients who need them for effective pain relief. The annual consumption of morphine for medical purposes was only 65 kg in 1986 in Japan, but it rose to 973 kg in 1999. Currently, morphine is mostly given by mouth and two-thirds of morphine preparations consumed are MS Contin Tablets. However, the current morphine consumption per capita in Japan is still less than one-sixth of the consumption in the United States.In order to achieve further improvement, educational effort should be much emphasized. In the 1990s, approximately 70% of medical and nursing schools in Japan have initiated their educational curriculum for cancer pain relief and palliative care. There have been government-sponsored, medical, nursing and pharmaceutical societies-sponsored seminar courses on appropriate morphine use in cancer pain management, palliative care and opioid availability, all of which have increasingly strengthened postgraduate education.     

A cluster randomized trial of a primary palliative care intervention (CONNECT) for patients with advanced cancer: Protocol and key design considerations

BackgroundThe addition of specialty palliative care to standard oncology care improves outcomes for patients with advanced cancer and their caregivers, but many lack access to specialty care services. Primary palliative care—meaning basic palliative care services provided by clinicians who are not palliative care specialists—is an alternative approach that has not been rigorously evaluated.MethodsA cluster randomized, controlled trial of the CONNECT (Care management by Oncology Nurses to address supportive care needs) intervention, an oncology nurse-led care management approach to providing primary palliative care for patients with advanced cancer and their family caregivers, is currently underway at 16 oncology practices in Western Pennsylvania. Existing oncology nurses are trained to provide symptom management and emotional support, engage patients and families in advance care planning, and coordinate appropriate care using evidence-based care management strategies. The trial will assess the impact of CONNECT versus standard oncology care on patient quality of life (primary outcome), symptom burden, and mood; caregiver burden and mood; and healthcare resource use.DiscussionThis trial addresses the need for more accessible models of palliative care by evaluating an intervention led by oncology nurses that can be widely disseminated in community oncology settings. The design confronts potential biases in palliative care research by randomizing at the practice level to avoid contamination, enrolling patients prior to informing them of group allocation, and conducting blinded outcome assessments. By collecting patient, caregiver, and healthcare utilization outcomes, the trial will enable understanding of the full range of a primary palliative care intervention's impact.     

The palliative care in the clinical oncology

With the development of the medical oncology, the progress of the diagnosis and the treatment for cancer patients have provided the improvement of overall survival rates. Furthermore, the importance of the palliative care, which give the relief of the pain and maintain or improve quality of life in cancer patients, has become to be recognized recently. Because the palliative care aims to provide the cancer patients and families with the relief of "total pain", which means the complex etiology of pain, including its physical, emotional, social, economic, and spiritual components, it has been adapted not only at the terminally period but also at the beginning of the cancer treatment. Therefore, an interdisciplinary collaboration with a variety of experts is required for palliative care. Although there is a lot of problem to be solved for palliative care in Japan, each expert should investigate his own speciality but also collaborate with another.     

Anxiety Levels in Patients With Malignant Disease

Spielberger State and Trait anxiety scores are reported for 378 cancer patients and 379 matched relatives. Anxiety scores are given by demographic and clinical characteristics. Analysis of variance with the Scheffe procedure indicates but one substantive distinguishing characteristic: treatment status. Patients receiving palliative care displayed significantly higher anxiety scores than did patients under active treatment or follow-up care. Correlations between patients’ state and trait scores increased according to whether patients were receiving follow-up, active, or palliative care. The correlation between state and trait scores for patients under palliative care (r?=?.78) is so high as to suggest that the measures of state (transient) and trait (permanent) mood status are essentially identical. The high level of anxiety displayed by patients under palliative treatment suggests the need for intervention such as that provided by hospice care, and indicates that anti-anxiety medication may be underutilized.     

Mapping the clinical care pathways for advanced stage non-small cell lung cancer patients in Victoria: A retrospective cohort study of supportive and palliative care

The lung cancer Optimal Care Pathway recommends supportive care and palliative care integration throughout its various steps, with early referral to appropriate services improving the quality of life in advanced stage non-small cell lung cancer patients. Using Victorian Lung Cancer Registry data and linked administrative datasets, this retrospective cohort study mapped clinical care pathways of 525 Stage III–IV non-small cell lung cancer patients in Victoria to 11 recommendations in the Optimal Care Pathway, identifying unwarranted variations in clinical care. Supportive care and palliative care delivery were further examined to understand the involvement and timing of specialist care teams. Our findings showed that palliative care utilization is highest at the time of treatment, despite recommendations that it should be provided early after diagnosis to improve patient outcomes and satisfaction. Early supportive care screening was observed in half the cohort and almost three-quarters of the patients had been presented at a multidisciplinary meeting. Multidisciplinary meeting presentations and supportive care provide an opportunity to improve communication about palliative care needs and integration into routine clinical practice, such as at the time of treatment planning.     

Caring for patients with terminal delirium: palliative care unit and home care nurses' experiences

AIM: To explore palliative care unit and home care nurses' experiences of caring for patients with terminal delirium. DESIGN: A qualitative exploratory design using individual interviews. SAMPLE: Participants included five nurses working in an interdisciplinary palliative care unit located in a large Canadian city hospital, and four nurses from a palliative home care nursing team located in the same city. RESULTS: Nurses in both sites experienced multiple challenges caring for delirious patients. Additional education on delirium and collaborative teamwork were viewed as key factors in enhancing their ability to care for and support this patient and family population. Four core themes reflected the participants' perceptions and experiences: experiencing distress; the importance of presence; valuing the team; and the need to know more. CONCLUSION: Findings suggest the need for interdisciplinary educational initiatives focused on the identification and management of terminal delirium, and targeted to the specific context in which nurses practise.     

Predictive Factors For Do-Not-Resuscitate Designation Among Terminally Ill Cancer Patients Receiving Care From a Palliative Care Consultation Service

ContextSince the development of palliative care in the 1980s, “do not resuscitate” (DNR) has been promoted worldwide to avoid unnecessary resuscitation in terminally ill cancer patients.ObjectivesThis study aimed to evaluate the effect of a palliative care consultation service (PCCS) on DNR designation and to identify a subgroup of patients who would potentially benefit from care by the PCCS with respect to DNR designation.MethodsIn total, 2995 terminally ill cancer patients (with a predicted life expectancy of less than six months by clinician estimate) who received care by the PCCS between January 2006 and December 2010 at a single medical center in Taiwan were selected. Among these, the characteristics of 2020 (67.4%) patients who were not designated as DNR at the beginning of care by the PCCS were retrospectively analyzed to identify variables pertinent to DNR designation.ResultsA total of 1301 (64%) of 2020 patients were designated as DNR at the end of care by the PCCS. Male gender and primary liver cancer were characteristics more predominantly found among DNR-designated patients who also had worse performance status, higher prevalence of physical distress, and shorter intervals from palliative care referral to death than did patients without DNR designation. On univariate analysis, a higher probability of DNR designation was associated with male gender, duration of care by the PCCS of more than 14 days, patients' prognostic awareness, family's diagnostic and prognostic awareness, and high Palliative Prognostic Index (PPI) scores. On multivariate analysis, duration of care by the PCCS, patients' prognostic awareness, family's diagnostic and prognostic awareness, and a high PPI score constituted independent variables predicting DNR-designated patients at the end of care by the PCCS.ConclusionDNR designation was late in terminally ill cancer patients. DNR-designated cancer patient indicators were high PPI scores, patients' prognostic awareness, family's diagnostic and prognostic awareness, and longer durations of care by the PCCS.     

Providing a "good death" for oncology patients during the final hours of life in the intensive care unit

Cancer is a leading cause of death in the United States. Aggressiveness of cancer care continues to rise in parallel with scientific discoveries in the treatment of a variety of malignancies. As a result, patients with cancer often require care in intensive care units (ICUs). Although growth in hospice and palliative care programs has occurred nationwide, access to these programs varies by geographic region and hospital type. Thus, critical care nurses may be caring for patients with cancer during the final hours of life in the ICU without the support of palliative care experts. This article provides an overview of the meaning of the final hours of life for cancer patients and uses principles of a "good death" and the tenets of hospice care to organize recommendations for critical care nurses for providing high quality end-of-life care to patients with cancer in the ICU.     

Fatigue in palliative care patients -- an EAPC approach

Fatigue is one of the most frequent symptoms in palliative care patients, reported in .80% of cancer patients and in up to 99% of patients following radio- or chemotherapy. Fatigue also plays a major role in palliative care for noncancer patients, with large percentages of patients with HIV, multiple sclerosis, chronic obstructive pulmonary disease or heart failure reporting fatigue.This paper presents the position of an expert working group of the European Association for Palliative Care (EAPC), evaluating the available evidence on diagnosis and treatment of fatigue in palliative care patients and providing the basis for future discussions. As the expert group feels that culture and language influence the approach to fatigue in different European countries, a focus was on cultural issues in the assessment and treatment of fatigue in palliative care. As a working definition, fatigue was defined as a subjective feeling of tiredness, weakness or lack of energy. Qualitative differences between fatigue in cancer patients and in healthy controls have been proposed, but these differences seem to be only an expression of the overwhelming intensity of cancer-related fatigue. The pathophysiology of fatigue in palliative care patients is not fully understood. For a systematic approach, primary fatigue, most probably related to high load of proinflammatory cytokines and secondary fatigue from concurrent syndromes and comorbidities may be differentiated. Fatigue is generally recognized as a multidimensional construct, with a physical and cognitive dimension acknowledged by all authors. As fatigue is an inherent word only in the English and French language, but not in other European languages, screening for fatigue should include questions on weakness as a paraphrase for the physical dimension and on tiredness as a paraphrase for the cognitive dimension. Treatment of fatigue should include causal interventions for secondary fatigue and symptomatic treatment with pharmacological and nonpharmacological interventions. Strong evidence has been accumulated that aerobic exercise will reduce fatigue levels in cancer survivors and patients receiving cancer treatment. In the final stage of life, fatigue may provide protection and shielding from suffering for the patient and thus treatment may be detrimental. Identification of the time point, where treatment of fatigue is no longer indicated is important to alleviate distress at the end of life.