OBJECTIVE: to identify, in scientific productions, nursing interventions in palliative care in children and adolescents with cancer.
METHOD: integrative review of the literature through the databases: CINAHL, MEDLINE, IBECS, LILACS and SCIELO, carried out in October and November 2017.
RESULTS: we analyzed 18 articles that met the inclusion criteria. The results showed that, among the articles selected, Brazil is the country with the largest number of publications and that interventions such as music therapy, massage, ludic application, early consultation of palliative care, social interventions and physical exercises aimed at the resolution of a specific symptom obtained better results when compared to interventions that aimed at the comprehensiveness of palliative care.
FINAL CONSIDERATION: we conclude that greater emphasis should be given to palliative care in academic and professional training and that further studies in search of the best evidence should be conducted to support nursing Evidence-Based Practices.
OBJECTIVE: To select outcomes and indicators of the Nursing Outcomes Classification (NOC), in order to assess patients with cancer under palliative care with Acute and Chronic Pain Nursing Diagnoses; and to construct the conceptual and operational definitions of the indicators.
METHOD: Expert opinion study and literature review. The sample consisted of 13 experts. The data collection was in own tool applied in face-to-face meeting and by e-mail. In the analysis of the data, it was considered between 75% and 100% of agreement.
RESULTS: Eight outcomes and 19 indicators were selected. The results with higher scores were Pain Level, Pain Control and Client Satisfaction: Pain Management. For all indicators selected, conceptual and operational definitions were constructed.
CONCLUSION: The selection of results and priority indicators for the assessment of pain in palliative care, as well as the construction of its definitions, will support clinical practice.
OBJECTIVE: Qualitatively evaluate the operation of a palliative care service in oncology.
METHODOLOGY: Qualitative study conducted in a service in southern Brazil based on a fourth generation evaluation. Between September 2014 and June 2015, 460 hours of operation were observed, and 45 semi-structured interviews and five negotiation meetings were conducted; data were analyzed using the constant comparative method.
RESULTS: Potential services are: provision of outpatient palliative care, home and inpatient care provided by a multidisciplinary and support team, meeting the patient's biological, psychological, social and spiritual needs. Study limitations: ineffective communication between clinical and surgical oncology and palliative care sectors, lack of specialized training for professionals and in interpersonal relationship issues among team members.
FINAL CONSIDERATION: For palliative care progress in the service, some arrangements are required to enhance integrality of care.
BACKGROUND: The European Association for Palliative Care White Paper defined optimal palliative care in dementia based on evidence and expert consensus. Yet, we know little on how to achieve this for people with dementia living and dying at home.
AIMS: To examine evidence on home palliative care interventions in dementia, in terms of their effectiveness on end-of-life care outcomes, factors influencing implementation, the extent to which they address the European Association for Palliative Care palliative care domains and evidence gaps.
DESIGN: A systematic review of home palliative care interventions in dementia.
DATA SOURCES: The review adhered to the PRISMA guidelines and the protocol was registered with PROSPERO (CRD42018093607). We searched four electronic databases up to April 2018 (PubMed, Scopus, Cochrane library and CINAHL) and conducted lateral searches.
RESULTS: We retrieved eight relevant studies, none of which was of high quality. The evidence, albeit of generally weak quality, showed the potential benefits of the interventions in improving end-of-life care outcomes, for example, behavioural disturbances. The interventions most commonly focused on optimal symptom management, continuity of care and psychosocial support. Other European Association for Palliative Care domains identified as important in palliative care for people with dementia, for example, prognostication of dying or avoidance of burdensome interventions were under-reported. No direct evidence on facilitators and barriers to implementation was found.
CONCLUSIONS: The review highlights the paucity of high-quality dementia-specific research in this area and recommends key areas for future work, for example, the need for process evaluation to identify facilitators and barriers to implementing interventions.
BACKGROUND: Cytochrome P450 3A is the most relevant drug-metabolizing enzyme in humans as it is involved in the elimination of 50% of marketed drugs. Nothing is known about the activity of cytochrome P450 3A in palliative care patients who have complicated symptoms often associated with a terminal illness.
AIM: In order to improve drug dosing in end-of-life care and to avoid drug interactions, cytochrome P450 3A activity was determined in patients of a palliative care unit under real-life clinical conditions.
DESIGN: As midazolam is an established marker substance for cytochrome P450 3A activity, this single-arm prospective trial was designed to obtain a 4-h pharmacokinetic profile of midazolam after oral administration of a 10-µg dose from each enrolled patient. Plasma concentrations of midazolam and its primary metabolite 1'-hydroxy-midazolam were quantified by mass spectrometry techniques. Cytochrome P450 3A activity was calculated as partial metabolic clearance from a limited sampling area under the curve. All other drugs taken by the participating patients were considered, as well as recent blood test results and patients' diagnoses. The trial was registered at German Clinical Trials Register ( www.drks.de ): DRKS00011753.
SETTING/PARTICIPANTS: The trial was carried out at a university palliative care unit under real-life clinical conditions. Every patient admitted to the ward was screened for possible participation, independent of the individual performance status.
RESULTS: Partial metabolic clearance of midazolam in palliative care patients was 31.7 ± 32.1 L/h. This was a highly significant 40% reduction (p < 0.0001) in comparison with the cytochrome P450 3A activity of healthy subjects.
CONCLUSION: Dosing of cytochrome P450 3A substrate drugs (e.g. macrolide antibiotics, benzodiazepines, calcium channel blockers) needs to be adjusted in palliative care patients; otherwise, escalation of debilitating symptoms due to drug interactions might occur.
OBJECTIVE: To assess differences in prolonged grief, depression, posttraumatic stress and sleep disturbances in bereaved parents across years since loss (1-5 years) and by gender, and to assess potential interactive effects of time since loss and gender on bereavement outcomes.
METHODS: This study examined symptom levels of Prolonged Grief Disorder, depression, posttraumatic stress and insomnia in bereaved parents. A sample, including 133 mothers and 92 fathers who had lost a child to cancer 1-5 years previously, subdivided to five subsamples, one for each year since loss. ANOVA was used to assess differences in symptom levels, related to years since loss and gender.
RESULTS: Regardless of how many years had passed since the loss, symptom levels of prolonged grief, depression, posttraumatic stress symptoms and insomnia, were elevated in all subsamples. Mothers showed higher symptom levels of prolonged grief, depression and posttraumatic stress than fathers. However, no significant interaction effects were found between years since loss and gender on any of the symptom levels.
CONCLUSIONS: Cancer-bereaved mothers and fathers are vulnerable to prolonged grief and psychological symptoms up to five years after the death of their child. Findings highlight that bereaved parents may need long-term support and the results deserve further attention in research and clinical care.
BACKGROUND: A child's death affects not only family members but also healthcare professionals involved in patient care. However, the education system for bereavement care in Japan is not systematically established, and care provided is based on healthcare professionals' experiences. We aimed to investigate pediatricians' recognition of and actual circumstances involved in bereavement care in Japan.
METHODS: A qualitative descriptive study was conducted at four facilities in Japan. Data collected with semi-structured interviews of 11 pediatricians were assessed using inductive qualitative analysis.
RESULTS: Pediatricians' recognition of bereavement care was categorized as follows: (1) developing relationships with families before a child's death is important in bereavement care; (2) after the child dies, family involvement is left to the doctor's discretion; (3) coping with a child's death myself through past experience is essential; (4) doctors involved in a child's death also experience mental burden; and (5) a system for the family's bereavement care must be established. Two categories were established according to actual circumstances involved in bereavement care: (1) attention must be given to the emotions of the families who lost a child; (2) doctors' involvement with bereaved families depends on doctors' recognition and expertise.
CONCLUSION: Japanese pediatricians provided bereavement care to families who lost their children in a non-systemized manner. This is necessitates improvement of the self-care of healthcare professionals for grief by improving bereavement care-related education. Additionally, healthcare professionals must be trained, and a national-level provision system must be established to provide high-quality bereavement care for families who lose a child.
OBJECTIVE: Clinicians frequently overestimate survival time among seriously ill patients, and this can result in medical treatment at end of life that does not reflect the patient's preferences. Little is known, however, about the sources of clinicians' optimistic bias in survival estimation. Related work in social networks and experimental psychology demonstrates that psychological states-such as optimism-can transfer from one person to another.
METHODS: We directly observed and audio recorded 189 initial inpatient palliative care consultations among hospitalized patients with advanced cancer. Patients self-reported their level of trait optimism and expectations for survival prognosis prior to the palliative care consultation, and the palliative care clinicians rated their expectations for the patient's survival time following the initial conversation with the patient. We followed patient mortality for 6 months.
RESULTS: Patient optimism was associated with clinician overestimation of their survival in a dose-response relationship. Clinicians were approximately three times as likely to overestimate the survival of patients endorsing both high trait optimism and optimistic ratings of their survival time compared with neither (OR: 2.95; 95% CI: 1.24-7.02). This association was not attenuated by adjustment for age, gender, race, ethnicity, education, income, cancer type, functional status, quality of life, or white blood cell count (ORadj : 3.45; 95% CI: 1.24-9.66).
CONCLUSION: Patients' optimism may have some influence over their clinicians' prognostic judgments.
BACKGROUND: Drug use beyond the licence (off-label use, off-label drug use) is a common practice in palliative care and respective recommendations can often be identified in the literature. It is both risky and offers opportunities at the same time and, therefore, requires special attention in clinical practice.
AIM: To determine the prevalence of off-label drug use in palliative care and to identify, evaluate and critically appraise studies describing the clinical practice, healthcare professionals' awareness, knowledge and attitudes towards off-label-use and management strategies.
DESIGN: Systematic literature review following the guidance of the Centre for Reviews and Dissemination.
DATA SOURCES: Medline, Embase, Web of Science and Current Contents Connect were searched in July 2018 as well as hand searches. The reference lists of pertinent studies were screened for further relevant publications, and citation tracking was performed.
RESULTS: Eight studies met the inclusion criteria. Due to the variety in study designs and settings, no meta-analysis or meaningful statistical analysis was possible and a narrative synthesis of the data was performed. Frequency of off-label drug use ranged from 14.5% to 35%. Up to 97% of palliative care units did not have any policy or guidance on handling off-label drug use. About 20% of prescribers never obtain consent in the context of off-label use.
CONCLUSION: Off-label use is common in palliative care with up to one-third of prescriptions affected. Challenges are often related to obtaining informed consent. Little is known about the decision-making process. More information and guidance for the prescribers are needed to enable safe handling of drugs outside their licence in palliative care.
Healthcare professionals are often confronted with situations that increase their levels of stress and emotional fatigue, particularly in hospice or palliative care, because of direct contact with dying patients that can contribute to risk of burnout. Psychological support for doctors and nurses is crucial to voice any anxiety or distress experienced.This pilot study aimed to evaluate the effectiveness of a short-term psychotherapeutic group implemented for doctors and nurses of a Hospice in southern Europe. Burnout and alexithymia were measured at the beginning and at the end of a psychotherapeutic group conducted with the Photolangage method which encourages sharing of emotional experiences by the medium of a photo.Significant differences between pre- and post-evaluation were observed in the scores for alexithyimia (measured with TAS-20) and burnout (measured with MBI). This is suggestive of the effectiveness of this group intervention in reducing risk of burnout and increasing awareness of emotions experienced during daily work at the hospice.
BACKGROUND: Inadequate description of palliative care cancer patients in research studies often leads to results having limited generalizability. To standardize the description of the sample, the European Association for Palliative Care basic data set was developed, with 31 core demographic and disease-related variables.
AIM: To pilot test the data set to check acceptability, comprehensibility and feasibility.
DESIGN: International, multi-centre pilot study at nine study sites in five European countries, using mixed methods.
SETTING/PARTICIPANTS: Adult cancer patients and staff in palliative care units, hospices and home care.
RESULTS: In all, 191 patients (544 screened) and 190 health care personnel were included. Median time to fill in the patient form was 5 min and the health care personnel form was 7 min. Ethnicity was the most challenging item for patients and requires decisions at a national level about whether or how to include. Health care personnel found weight loss, principal diagnosis, additional diagnoses and stage of non-cancer diseases most difficult to respond to. Registration of diagnoses will be changed from International Statistical Classification of Diseases and Related Health Problems, 10th version code to a predefined list, while weight loss and stage of non-cancer diseases will be removed. The pilot study has led to rewording of items, improvement in response options and shortening of the data set to 29 items.
CONCLUSION: Pilot testing of the first version of the European Association for Palliative Care basic data set confirmed that patients and health care personnel understand the questions in a consistent manner and can answer within an acceptable timeframe. The pilot testing has led to improvement, and the new version is now subject to further testing.
Background: Pain remains one of the most common and debilitating symptoms of advanced cancer. To date, there is a lack of studies on pain and its treatment among Malaysian palliative care patients.
Objective: This study aimed to explore the prevalence of pain and its treatment outcomes among adult cancer patients admitted to a palliative care unit in Sabah, Malaysia.
Methods: Of 327 patients screened (01/09/15-31/12/17), 151 patients with assessed self-reported pain scores based on the numerical rating scale of 0-10 (current, worst and least pain within the past 24 hours) upon admission (baseline), 24, 48 and 72 hours post-admission and discharge were included. Pain severity and pain score reductions were analysed among those who experienced pain upon admission or in the past 24 hours. Treatment adequacy was measured by the Pain Management Index (PMI) among discharged patients. The PMI was constructed upon worst scores categorised as 0 (no pain), 1 (1-4, mild pain), 2 (5-6, moderate pain), or 3 (7-10, severe pain) which is then subtracted from the most potent level of prescribed analgesic drug scored as 0 (no analgesia), 1 (non-opioid), 2 (weak opioid) or 3 (strong opioid). PMI =0 indicated adequate treatment.
Results: Upon admission, 61.1% [95%CI 0.54:0.69] of 151 patients presented with pain. Of 123 patients who experienced pain upon admission or in the past 24 hours, 82.1% had moderate to severe worst pain. Throughout patients' ward stay until discharge, there was an increased prescribing of analgesics and adjuvants compared to baseline, excluding weak opioids, with strong opioids as the mainstay treatment. For all pain score types (current, worst and least pain within the past 24 hours), means decreased at each time point (24, 48 and 72 hours post-admission and discharge) from baseline, with a significant decrease at 24 hours post-admission (p<0.001). Upon discharge (n=100), treatment adequacy significantly improved (PMI=0 100% versus 68% upon admission, p<0.001).
Conclusions: Accounting for pain's dynamic nature, there was a high prevalence of pain among cancer patients in the palliative care unit. Continuous efforts incorporating comprehensive pain assessments, evidence-based treatments and patient education are necessary to provide adequate pain relief and end-of-life comfort care.
BACKGROUND: Patients with multiple myeloma, an incurable haematological cancer, often receive palliative care only late in their trajectory. Criteria for early referral are lacking.
AIM: To identify which patients might benefit from early integration, by identifying trajectories of health-related quality of life and the determinants for declining or poor Health related quality of life .
DESIGN: Prospective, longitudinal cohort study.
PARTICIPANTS: Multiple myeloma patients at all stages (newly diagnosed, first-line or second-line treatment, early or later treatment-free interval, refractory disease) from in- and outpatient units at 14 hospitals in England were recruited. In addition to clinical information and standardised Health related quality of life and psychological aspects, the Myeloma Patient Outcome Scale (MyPOS) measured palliative care concerns.
RESULTS: A total of 238 patients were recruited, on average 3.5 years (SD: 3.4) post-diagnosis. Latent mixture growth models identified four Health related quality of life trajectories. Classes 3 and 4 represent trajectories of stable poor Health related quality of life or declining Health related quality of life over an 8-month period. The strongest predictors of poor outcome at the end of follow-up were general symptom level (odds ratio (OR): 1.3, 95% CI: 1.0–1.6, p = 0.028), presence of clinically relevant anxiety (OR: 1.2, 95% confidence interval (CI): 1.0–1.4, p = 0.019), and presence of pain (OR: 1.02, 95% CI: 1.0–1.1, p = 0.018), all being more predictive than demographic or clinical characteristics.
CONCLUSION: General symptom level, pain and presence of anxiety predict declining Health related quality of life in multiple myeloma. Identification of patients with palliative care needs should focus on assessing patient-reported symptoms and psychosocial well-being for identifying those at risk of deterioration.
Background: An international panel achieved consensus on 9 need-based and 2 time-based major referral criteria to identify patients appropriate for outpatient palliative care referral. To better understand the operational characteristics of these criteria, we examined the proportion and timing of patients who met these referral criteria at our Supportive Care Clinic.
Methods: We retrieved data on consecutive patients with advanced cancer who were referred to our Supportive Care Clinic between January 1, 2016, and February 18, 2016. We examined the proportion of patients who met each major criteria and its timing.
Results: Among 200 patients (mean age 60, 53% female), the median overall survival from outpatient palliative care referral was 14 (95% confidence interval 9.2, 17.5) months. A majority (n = 170, 85%) of patients met at least 1 major criteria; specifically, 28%, 30%, 20%, and 8% met 1, 2, 3, and = 4 criteria, respectively. The most commonly met need-based criteria were severe physical symptoms (n = 140, 70%), emotional symptoms (n = 36, 18%), decision-making needs (n = 26, 13%), and brain/leptomeningeal metastases (n = 25, 13%). For time-based criteria, 54 (27%) were referred within 3 months of diagnosis of advanced cancer and 63 (32%) after progression from = 2 lines of palliative systemic therapy. The median duration from patient first meeting any criterion to palliative care referral was 2.4 (interquartile range 0.1, 8.6) months.
Conclusions: Patients were referred early to our palliative care clinic and a vast majority (85%) of them met at least one major criteria. Standardized referral based on these criteria may facilitate even earlier referral.
PURPOSE: This study aimed to determine the impact of advanced care planning (ACP) on potentially avoidable hospital admissions at the end of life (EOL) among a sample of hospice-referred patients with cancer, in order to present actionable considerations for the practicing clinician.
METHODS: This study was designed as a retrospective cohort using electronic health record data that assessed likelihood of hospital admissions in the last 30 days of life for 1185 patients with a primary diagnosis of cancer, referred to hospice between January 1, 2014, and December 31, 2015, at a large academic medical center. Inverse probability treatment weighting based on calculated propensity scores balanced measured covariates between those with and without ACP at baseline. Odds ratios (ORs) were calculated from estimated potential outcome means for the impact of ACP on admissions in the last 30 days of life.
RESULTS: A verified do-not-resuscitate (DNR) order prior to the last 30 days of life was associated with reduced odds of admission compared to those without a DNR (OR = 0.30; P < .001). An ACP note in the problem list prior to the last 30 days of life was associated with reduced odds of admission compared to those without an ACP note (OR = 0.71, P = .042), and further reduced odds if done 6 months prior to death (OR = 0.35, P < .001).
CONCLUSIONS: This study shows that dedicated ACP documentation is associated with fewer admissions in the last 30 days of life for patients with advanced cancer referred to hospice. Improving ACP processes prior to hospice referral holds promise for reducing EOL admissions.
BACKGROUND: The Physician Orders for Life-Sustaining Treatment (POLST) Paradigm is an effective advance care planning tool. However, barriers to implementation persist. In the United States, POLST program development occurs at the state-level. Substantial differences between states has left POLST implementation largely unstandardized. No peer-reviewed studies to date have evaluated state-based POLST program development over time.
OBJECTIVE: To assess and learn from the successes and barriers in state-based POLST program development over time to improve the reach of POLST or similar programs across the United States.
DESIGN: An exploratory, prospective cohort study that utilized semistructured telephone interviews was conducted over a 3-year period (2012-2015). Stakeholder representatives from state POLST coalitions (n = 14) were repeatedly queried on time-relevant successes, barriers, and innovations during POLST program development with levels of legislative and medical barriers rated 1 to 10. Interviews were transcribed and analyzed using techniques grounded in qualitative theory.
RESULTS: All coalition representatives reported continuous POLST expansion with improved outreach and community partnerships. Significant barriers to expansion included difficulty in securing funding for training and infrastructure, lack of statewide metric systems to adequately assess expansion, lack of provider support, and legislative concerns. Medical barriers (mean [standard deviation]: 5.0 [0.2]) were rated higher than legislative (3.0 [0.6]; P < .001).
CONCLUSION: POLST programs continue to grow, but not without barriers. Based on the experiences of developing coalitions, we were able to identify strategies to expand POLST programs and overcome barriers. Ultimately the "lessons learned" in this study can serve as a guide to improve the reach of POLST or similar programs.
OBJECTIVE: To identify common themes and topics that patients nearing the end of life want to discuss when sharing their life stories.
METHODS: Twenty audio-recorded transcripts of open-ended interviews of patients cared for by a palliative care team when approaching the end of life were analyzed using a qualitative analysis.
RESULTS: Qualitative analysis revealed that the primary contextual factors that patients drew upon to generate his or her life story are life events (including upbringing, job, education, travel, trauma, hardships, special events, military history, and hobbies), family and support system, and values and beliefs. Participants used their current medical condition, which included mortality, morbidity, and prognosis, to frame their life story.
CONCLUSION: Patients facing serious illness incorporate four major themes when reflecting upon their lives to create their personal life story: life events, family and support system, values and beliefs, and current medical condition.
JM is a 32-year-old primagravida with polycystic ovary disease. She had extreme difficulty conceiving and was started on clomiphene 6 months ago by her fertility specialist. After doubling the dose on the sixth cycle, she successfully became pregnant. On her second prenatal visit at 12 weeks gestation, an ovarian cyst was detected. Ultrasound showed a complex ovarian mass with nodules on the bowel and abdominal wall. There was mild-to-moderate peritoneal fluid. Cytology showed adenocarcinoma of ovarian origin. Further workup demonstrated advanced stage III epithelial ovarian cancer. JM was referred to GYN-oncology who felt pregnancy-sparing debulking was not an option. The oncologist recommended termination of pregnancy due to the risks of delaying chemotherapy. JM refused, citing her fertility difficulties in the past and her desire to carry the pregnancy to term "even if it kills me." She tells the oncologist she cannot bear the thought of terminating her pregnancy under any circumstances. The oncologist wants to comply with her wishes but feels the patient is making a choice that would result in harm to herself. The oncology team requests an ethics consult.
BACKGROUND: Palliative care is aimed at improving the quality of life of an individual with chronic noncommunicable disease and their care partners. Limitations in the provision of palliative care are mainly lack of knowledge and experience by nurses, fear of treating palliative persons, loss of control over treatment and fear of providing poor-quality palliative care to persons and care partners.
AIM: The aim of this study was to investigate the perception, knowledge and attitudes of palliative care by nurses who use palliative care approaches in practice, as well as the difference in perception, knowledge and attitudes of palliative care between nurses in Slovenia and Finland.
METHODS: We conducted a cross-sectional descriptive study. The survey included 440 nurses in clinical environments in Slovenia and Finland with a completed bachelor, master or doctoral level of education.
RESULTS: We found statistically significant differences between both countries in the perception of palliative care. Differences between the two countries in the knowledge of palliative care were not confirmed. We confirmed statistically significant differences between both countries in the attitudes of palliative nursing care.
CONCLUSION: Early person-centred palliative care is an important part of the holistic and integrative treatment of a person who has a disease with disturbing symptoms. For such an approach, it is important to educate nurses about knowledge, expectations, values and beliefs in developing a concept of person-centred palliative care to improve quality of life. The better perception, knowledge and attitudes of palliative care by nurses may help persons to improve and raise their quality of life, as well as diminish stress in their care partners and improve quality of life.
Palliative care concentrates on preventing and relieving suffering by reducing the severity of disease symptoms. Consistent treatment of pain and distress must therefore be an integral component of every palliative care concept. In this review non-pharmacological and pharmacological measures for pain and distress management in the context of palliative neonatal care are summarised. Furthermore, recommendations are given focusing on two special palliative neonatal care settings: compassionate extubation and withdrawing artificial nutrition and hydration.