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1.
BMC Palliat Care ; 23(1): 135, 2024 May 28.
Article in English | MEDLINE | ID: mdl-38802846

ABSTRACT

BACKGROUND: WHO stated the environment is an important factor affecting the development of hospice care. The environment is the sum of factors affecting behavior besides the individual factors. Currently, a scale to comprehensively assess the hospice environment of nurse is still lacking. This study aimed to develop an instrument to investigate the environmental factors affecting hospice care of nurses. METHODS: Literature review and a semi-structured interview were conducted to form the items pool of the Hospice Care Environment Scale. Two rounds of Delphi expert consultation were conducted by 16 experts to revise the scale dimensions and entries to form the Hospice Care Environment Scale. A psychometric evaluation was then performed among 530 oncology nurses in a large tertiary oncology hospital in Hubei Province. The 500 valid questionnaires were randomly divided into two groups in a 1:1 ratio, sample 1 (n1 = 250) for item screening and sample 2 (n2 = 250) for quality evaluation of the resulting scale. Item analysis, reliability analysis, validity analysis and acceptability analysis were performed. RESULT: The Hospice Care Environment Scale consists of two dimensions and 13 entries. The Cronbach's α coefficient of the Hospice Care Environment Scale was 0.970, and the Cronbach's α coefficient of the two dimensions were 0.952 and 0.969, respectively, with the Item-content validity index and average Scale- content validity index of the scale was both 1.000. The validation factor analysis showed the standardized path coefficients of each item were basically above 0.5, and the factor structure model was stable and suitable. The average completion time of the scale was about 3 min, which had good feasibility. CONCLUSION: The Hospice Care Environment Scale to assess the environment of hospice care services, has good content and construct validity and reliability. This scale can provide guidance to evaluate the hospice care environment.


Subject(s)
Delphi Technique , Hospice Care , Psychometrics , Humans , Reproducibility of Results , Psychometrics/instrumentation , Psychometrics/methods , Surveys and Questionnaires , Hospice Care/standards , Hospice Care/methods , Female , Male , Adult , Middle Aged , China
2.
BMC Palliat Care ; 23(1): 111, 2024 Apr 30.
Article in English | MEDLINE | ID: mdl-38689262

ABSTRACT

BACKGROUND: In response to the rapid aging population and increasing number of cancer patients, discussions on dignified end-of-life (EoL) decisions are active around the world. Therefore, this study aimed to identify the differences in EoL care patterns between types of hospice used for cancer patients. METHODS: In this population-based cohort study, the Korean National Health Insurance Service cohort data containing all registered cancer patients who died between 2017 and 2021 were used. A total of 408,964 individuals were eligible for analysis. The variable of interest, the type of hospice used in the 6 months before death, was classified as follows: (1) Non-hospice users; (2) Hospital-based hospice single users; (3) Home-based hospice single users; (4) Combined hospice users. The outcomes were set as patterns of care, including intense care and supportive care. To identify differences in care patterns between hospice types, a generalized linear model with zero-inflated negative binomial distribution was applied. RESULTS: Hospice enrollment was associated with less intense care and more supportive care near death. Notably, those who used combined hospice care had the lowest probability and frequency of receiving intense care (aOR: 0.18, 95% CI: 0.17-0.19, aRR: 0.47, 95% CI: 0.44-0.49), while home-based hospice single users had the highest probability and frequency of receiving supportive care (Prescription for narcotic analgesics, aOR: 2.95, 95% CI: 2.69-3.23, aRR: 1.45, 95% CI: 1.41-1.49; Mental health care, aOR: 3.40, 95% CI: 3.13-3.69, aRR: 1.35, 95% CI: 1.31-1.39). CONCLUSION: Our findings suggest that although intense care for life-sustaining decreases with hospice enrollment, QoL at the EoL actually improves with appropriate supportive care. This study is meaningful in that it not only offers valuable insight into hospice care for terminally ill patients, but also provides policy implications for the introduction of patient-centered community-based hospice services.


Subject(s)
Hospice Care , Neoplasms , Terminal Care , Humans , Male , Female , Neoplasms/therapy , Retrospective Studies , Middle Aged , Aged , Terminal Care/methods , Terminal Care/standards , Terminal Care/statistics & numerical data , Republic of Korea , Cohort Studies , Hospice Care/statistics & numerical data , Hospice Care/methods , Hospice Care/standards , Adult , Aged, 80 and over , Hospices/statistics & numerical data , Hospices/methods
3.
J Hosp Palliat Nurs ; 26(3): 122-131, 2024 Jun 01.
Article in English | MEDLINE | ID: mdl-38648625

ABSTRACT

Constipation is a distressing symptom that has a high prevalence in patients receiving hospice and palliative care services, particularly in cases of opioid use. A thorough assessment, root cause analysis, monitoring, and prophylactic approach are essential for symptom management and quality of life. This rapid review assessed studies published between 2018 and 2023 to identify strategies implemented by health care professionals to prevent and/or mitigate this distressing symptom. We identified 12 articles that addressed constipation in palliative and end-of-life settings and reported on the need for multifactorial management approaches with a focus on patient-centered care that includes the caregiver(s). Bedside nurses play a key role in assessing, identifying, and managing constipation. Proper documentation and communication with the interdisciplinary team help direct earlier intervention and ongoing awareness of constipation issues. Additional research is needed on specific tools and enhanced guidelines to ensure constipation is frequently addressed and preemptively managed.


Subject(s)
Constipation , Palliative Care , Humans , Constipation/therapy , Constipation/complications , Palliative Care/methods , Palliative Care/standards , Hospice Care/methods , Hospice Care/standards
4.
J Hosp Palliat Nurs ; 26(3): 116-121, 2024 Jun 01.
Article in English | MEDLINE | ID: mdl-38483165

ABSTRACT

The adult/gerontology (gero) nurse practitioner (NP) delivers primary and/or specialty palliative care to persons and their families who live each day with a myriad of serious illnesses. In this role, the adult/gero NP uses their skill set to address the whole person (physical, psychological, social, and spiritual/existential) to improve the quality of life for persons they care for. This article is the fourth in a series of 6 highlighting the different roles of the adult/gero NP and the advanced certified hospice and palliative registered nurse, and how these 2 roles overlap. The purpose of this article was to provide details of education and certification pathways for these NP roles, describe the overlaps in clinical care, and illustrate how the adult/gero NP in palliative and hospice care can contribute to leadership in program development for care of persons and their families who live with serious illness.


Subject(s)
Nurse Practitioners , Nurse's Role , Palliative Care , Humans , Nurse Practitioners/trends , Nurse Practitioners/standards , Palliative Care/methods , Palliative Care/standards , Adult , Hospice Care/methods , Hospice Care/standards
5.
J Gen Intern Med ; 39(6): 893-901, 2024 May.
Article in English | MEDLINE | ID: mdl-38240917

ABSTRACT

BACKGROUND: Under traditional Medicare, accountability measures are specific to each healthcare setting. With the growth of alternative payment models such as Medicare Advantage, the focus of accountability measures can be on the longitudinal episode of care. OBJECTIVE: Using the last month of life as the episode of care, examine bereaved family member perceptions of the quality of care by site of death and inpatient palliative/hospice care. DESIGN: Retrospective cohort study using the National Health Aging Trends Study waves 3-11. SUBJECTS: US decedents age 65 and older with family member or close friend survey response. MAIN MEASURES: Overall rating of the quality of care, perceptions of symptom management, being treated with respect, emotional/spiritual support, communication, and receipt of care that the decedent did not want. KEY RESULTS: Among 2796 interviews (weighted N = 12.6 million), 25.7% died at home with hospice, 10.9% at home without hospice, 10.0% in the ICU, 6.4% at a palliative care unit (PCU), 6.4% at a hospice IPU, 9.1% at hospital without inpatient palliative care, 13.2% at a nursing home without hospice, 9.8% in a nursing home with hospice, 4.1% at a hospice residence, and 4.4% at other locations without hospice. Dying at home with hospice received the highest rating of quality of care (60.2% stated excellent care) while the adjusted marginal differences in sites of death with inpatient palliative care services were rated lower: hospice residence 25.6% points lower (95% CI (-13.7%, -37.5%)) and a freestanding IPU was 16.9% points lower (95% CI (- 4.9%, -29.0%)). CONCLUSION: Examining the episode of care as the last month of life, hospice at home is associated with higher rating of the quality of care while inpatient palliative care services in hospital, hospice residence, or hospice IPU settings are rated lower.


Subject(s)
Bereavement , Palliative Care , Quality of Health Care , Terminal Care , Humans , Palliative Care/standards , Male , Aged , Female , Retrospective Studies , Aged, 80 and over , Terminal Care/standards , Inpatients , Cohort Studies , Hospice Care/standards , Hospice Care/statistics & numerical data , United States , Hospitalization/statistics & numerical data
6.
J Am Geriatr Soc ; 70(1): 243-250, 2022 01.
Article in English | MEDLINE | ID: mdl-34585735

ABSTRACT

BACKGROUND: The Department of Veterans Affairs (VA)'s home-based primary care (HBPC) program provides coordinated, interdisciplinary care to seriously ill and disabled veterans, but few evaluations have considered end-of-life (EOL) care in this population. The aim of this study was to describe veterans' use of community-based hospice services while enrolled in HBPC and their associations with bereaved families' perceptions of care. METHODS: This study was a retrospective analysis of electronic medical record and bereaved family survey (BFS) data for veterans who died while enrolled in VA's HBPC program between October 2013 and September 2019. Seven regional VA networks called Veteran Integrated Service Networks participated in BFS data collection. The final sample included 3967 veterans who were receiving HBPC services at the time of death and whose next-of-kin completed a BFS. The primary outcome was the BFS global rating of care received in the last 30 days of life. Adjusted proportions for all BFS outcomes were examined and compared between those who received community-based hospice services and those who did not. RESULTS: Overall, 52.6% of BFS respondents reported that the care received by HBPC-enrolled veterans in the last 30 days of life was excellent using the BFS global rating. Among families of HBPC-enrolled veterans who received community-based hospice services, the BFS global rating was roughly eight percentage points higher than those who did not (55.7 vs. 47.0%, p < 0.001). On 12 of the 14 secondary BFS outcomes, veterans who received hospice scored higher than those who did not. CONCLUSIONS: Receipt of hospice services while enrolled in HBPC was associated with higher ratings of EOL care by bereaved family members. Integration of community hospice partners for qualifying veterans who are enrolled in the HBPC program represents a potential opportunity to improve the overall experience of EOL care for veterans and their families.


Subject(s)
Home Care Services/standards , Hospice Care/standards , Veterans/statistics & numerical data , Aged , Aged, 80 and over , Family , Female , Home Care Services/organization & administration , Humans , Male , Retrospective Studies , Surveys and Questionnaires , United States
7.
J Am Heart Assoc ; 10(15): e020949, 2021 08 03.
Article in English | MEDLINE | ID: mdl-34308687

ABSTRACT

Background Patients with left ventricular assist devices (LVADs) implanted as destination therapy may receive suboptimal preparation for and care at the end of life, but there is limited understanding of the reasons for these shortcomings. Exploring perceptions of individuals (caregivers and clinicians) who are closely involved in the end-of-life experience with patients with destination therapy LVADs can help identify key opportunities for improving care. Methods and Results We conducted semistructured qualitative interviews with 7 bereaved caregivers of patients with destination therapy LVADs and 10 interdisciplinary LVAD clinicians. Interviews explored perceptions of preparing for end of life, communicating about end of life, and providing and receiving end-of-life care, and were analyzed using a 2-step team-based inductive approach to coding and analysis. Six themes pertaining to end-of-life experiences were derived: (1) timing end-of-life discussions in the setting of unpredictable illness trajectories, (2) prioritizing end-of-life preparation and decision-making, (3) communicating uncertainty while providing support and hope, (4) lack of consensus on responsibility for end-of-life discussions, (5) perception of the LVAD team as invincible, and (6) divergent perceptions of LVAD withdrawal. Conclusions This study revealed 6 unique aspects of end-of-life care for patients with destination therapy LVADs as reported by clinicians and caregivers. Themes coalesced around communication, team-based care, and challenges unique to patients with LVADs at end of life. Programmatic changes may address some aspects, including training clinicians in LVAD-specific communication skills. Other aspects, such as standardizing the role of the palliative care team and developing practical interventions that enable timely advance care planning during LVAD care, will require multifaceted interventions.


Subject(s)
Caregivers/psychology , Heart Failure , Heart-Assist Devices , Quality of Life , Social Perception , Terminal Care , Advance Care Planning/organization & administration , Attitude of Health Personnel , Female , Health Services Needs and Demand , Heart Failure/epidemiology , Heart Failure/psychology , Heart Failure/therapy , Heart-Assist Devices/ethics , Heart-Assist Devices/psychology , Hospice Care/ethics , Hospice Care/psychology , Hospice Care/standards , Humans , Male , Middle Aged , Palliative Care/methods , Palliative Care/standards , Patient Care Team/standards , Qualitative Research , Quality Improvement , Terminal Care/ethics , Terminal Care/psychology , Terminal Care/standards , United States , Withholding Treatment/ethics
9.
Curr Hematol Malig Rep ; 16(2): 117-125, 2021 04.
Article in English | MEDLINE | ID: mdl-33864180

ABSTRACT

PURPOSE OF REVIEW: The medical field has a critical role not only in prolonging life but also in helping patients achieve a good death. Early studies assessing end-of-life quality indicators to capture if a good death occurred demonstrated low rates of hospice use and high rates of intensive healthcare utilization near death among patients with hematologic malignancies, raising concerns about the quality of death. In this review, we examine trends in end-of-life care for patients with hematologic malignancies to determine if we are close to the goal of a good death. RECENT FINDINGS: Several cohort studies show that patients with blood cancers are often inadequately prepared for the dying process due to late goals of care discussions and they experience low rates of palliative and hospice care. More recent analyses of population-based data demonstrate some improvements over time, with significantly more patients receiving palliative care, enrolling in hospice, and having the opportunity to die at home compared to a decade ago. These encouraging trends are paradoxically accompanied by concomitant increases in late hospice enrollment and intensive healthcare utilization near death. Although we are closer to the goal of a good death for patients with hematologic malignancies, there is ample room for growth. To close the gap between the current state of care and a good death, we need research that engages patients, caregivers, hematologic oncologists, and policy-makers to develop innovative interventions that improve timeliness of goals of care discussions, expand palliative care integration, and increase hospice use.


Subject(s)
Hematologic Neoplasms/therapy , Terminal Care/methods , Terminal Care/standards , Caregivers , Critical Care , Factor Analysis, Statistical , Goals , Hematologic Neoplasms/diagnosis , Hospice Care/methods , Hospice Care/standards , Humans , Outcome Assessment, Health Care , Patient Acceptance of Health Care , Quality of Life , Research , Terminal Care/trends
10.
Laryngoscope ; 131(8): 1769-1773, 2021 08.
Article in English | MEDLINE | ID: mdl-33491219

ABSTRACT

OBJECTIVE/HYPOTHESIS: Despite the importance of symptom management and end-of-life (EOL) care in head and neck cancers (HNC), there is little literature on care practices in this population. This study examines EOL care practice patterns using nationally established metrics. STUDY DESIGN: Retrospective chart review. METHODS: Review of HNC patients who were actively followed and treated (defined as one clinic note within 90 days, two within preceding 9 months, and having received treatment at our institution) and died between January 1, 2017 and December 31, 2018. The cohort was reviewed for performance on Quality Oncology Practice Initiative (QOPI®) and other metrics. RESULTS: Of 133 patients identified, 52 met inclusion criteria. The average age at death was 69.8 years. About 59% had distant metastases, 30% had locoregional disease, 11% were undergoing primary treatment. Twenty-three percentage received chemotherapy within the last 14 days of life. Fifty percentage of patients were admitted in the last 30 days of life, and 33% died in the hospital. Fifty-four percentage of patients had either Physician Orders for Life-Sustaining Treatment or Advanced Directive on file. Eighty-one percentage of patients had any type of goals of care discussion documented. Sixty-five percentage of all patients received referrals to palliative care and 46% of all patients enrolled in hospice. The median days in hospice was 12. Having a goals of care discussion was significantly associated with utilization of palliative and hospice care. CONCLUSIONS: Provider-documented goals of care discussions were strongly correlated to referrals and enrollment in palliative and hospice care. Areas for improvement include better documentation of treatment directives and reducing low-utility treatments. LEVEL OF EVIDENCE: 4 Laryngoscope, 131:1769-1773, 2021.


Subject(s)
Head and Neck Neoplasms/therapy , Hospice Care/statistics & numerical data , Palliative Care/statistics & numerical data , Practice Patterns, Physicians'/statistics & numerical data , Terminal Care/statistics & numerical data , Aged , Documentation/standards , Documentation/statistics & numerical data , Female , Head and Neck Neoplasms/mortality , Hospice Care/standards , Hospitalization/statistics & numerical data , Humans , Male , Palliative Care/standards , Quality of Health Care/statistics & numerical data , Referral and Consultation/standards , Referral and Consultation/statistics & numerical data , Retrospective Studies , Terminal Care/standards
11.
Rev. clín. esp. (Ed. impr.) ; 221(1): 33-44, ene. 2021. tab
Article in Spanish | IBECS | ID: ibc-225675

ABSTRACT

Objetivo Establecer recomendaciones de consenso sobre normas de buena práctica clínica en la atención a los pacientes al final de la vida. Métodos Un comité de 12 expertos españoles y portugueses propuso 37 recomendaciones. Se realizó un Proceso Delphi a dos rondas, con participación de 105 panelistas incluyendo internistas, otros médicos clínicos, enfermeras, enfermos, juristas, expertos en bioética, gestores sanitarios, políticos y periodistas. Para cada recomendación se envió un cuestionario con cinco respuestas tipo Likert. Se definió consenso fuerte cuando > 95% de las respuestas estaban totalmente de acuerdo o > 90% estaban de acuerdo y totalmente de acuerdo; consenso débil cuando > 90% estaban totalmente de acuerdo o > 80% estaban de acuerdo y totalmente de acuerdo. Resultados El panel abordó siete áreas específicas con 37 recomendaciones que abarcaban: Identificación de los pacientes; Conocimiento, valores y preferencias del paciente; Información; Necesidades del paciente; Atención y cuidados; Sedación paliativa y Atención tras la muerte. Conclusiones Un Proceso Delphi con participación multidisciplinar ha permitido establecer normas de buena práctica clínica en la atención al final de la vida con consenso de enfermos, agentes sociales y profesionales sanitarios (AU)


Aim To develop consensus recommendations about good clinical practice rules for caring end-of-life patients. Methods A steering committee of 12 Spanish and Portuguese experts proposed 37 recommendations. A two rounds Delphi method was performed, with participation of 105 panelists including internists, other clinicians, nurses, patients, lawyers, bioethicians, health managers, politicians and journalists. We sent a questionnaire with 5 Likert-type answers for each recommendation. Strong consensus was defined when > 95% answers were completely agree or > 90% were agree or completely agree; and weak consensus when > 90% answers were completely agree or > 80% were agree or completely agree. Results The panel addressed 7 specific areas for 37 recommendations spanning: identification of patients; knowledge of the disease, values and preferences of the patient; information; patient's needs; support and care; palliative sedation, and after death care Conclusions The panel formulated and provided the rationale for recommendations on good clinical practice rules for caring end-of-life patients (AU)


Subject(s)
Humans , Hospice Care/methods , Hospice Care/standards , Societies, Medical , Internal Medicine , Portugal , Spain
12.
Am J Phys Med Rehabil ; 100(2): 189-192, 2021 02 01.
Article in English | MEDLINE | ID: mdl-32541344

ABSTRACT

ABSTRACT: Physiatrists care for patients and families with complex medical needs, and primary palliative care is an important part of the comprehensive rehabilitation care plan. Palliative care improves patient and family quality of life and reduces healthcare costs. Clinical care guidelines for several physiatry patient populations now include the provision of palliative care.Current Accreditation Council for Graduate Medical Education physiatry residency program requirements include foundational palliative care skills. Similarly, current clinical palliative care practice guidelines enumerate standards that apply to the rehabilitation setting. However, there is a dearth of literature on the current state of palliative care training within physiatry programs, and hospice and palliative medicine remains one of the least subscribed physiatry subspecialties.In this article, we describe palliative care, highlight existing literature on palliative care needs within physiatry patient populations, and identify a core physiatry-palliative care skillset. We look both within physiatry and across other specialties to guide recommendations for palliative care education within physiatry residency programs. We also describe opportunities for post-residency fellowship training in hospice and palliative medicine.


Subject(s)
Hospice Care/standards , Palliative Care/standards , Palliative Medicine/education , Physical and Rehabilitation Medicine/education , Education, Medical, Graduate , Humans , United States
13.
J Am Geriatr Soc ; 69(4): 900-907, 2021 04.
Article in English | MEDLINE | ID: mdl-33165965

ABSTRACT

OBJECTIVES: Assess whether frequently-used claims-based end-of-life (EOL) measures are associated with higher ratings of care quality. DESIGN: Retrospective cohort study. SETTING/PARTICIPANTS: Deceased fee-for-service Medicare beneficiaries with cancer who underwent chemotherapy during July 2016 to January 2017 and died within 12 months and their caregiver respondents to an after-death survey (n = 2,559). MEASUREMENTS: We examined claims-based measures of EOL care: chemotherapy 14 days or more before death; inpatient admissions, intensive care unit (ICU) use, and emergency department (ED) visits 30 days or more before death; hospice election and the timing of election before death. Primary outcomes are family ratings of "excellent" care in the last month of life and reports that hospice care began "at the right time." Associations were assessed with logistic regression, adjusted by patient characteristics. RESULTS: Family rated EOL care as excellent less often, if within 30 days before death the cancer patient had inpatient admissions (1 hospitalization = 41.5% vs 51.5% none, adjusted difference -10.1 percentage points), ICU use (38.6% for any ICU use vs 47.4% none; adjusted difference -8.8 percentage points), ED visits (41.0% 1 visit vs 51.6% no visits; adjusted difference -10.6 percentage points), or elected hospice within 7 days before death. Among hospice enrollees, family more often reported that hospice began at the right time if it started at least 7 days before death (hospice 1-2 days before death 60.2% vs hospice 7-13 days 74.9%; adjusted difference +14.7 percentage points). CONCLUSIONS: Claims-based measures of EOL care for cancer patients that reflect avoidance of hospital-based care and earlier hospice enrollment are associated with higher ratings of care quality by bereaved family members.


Subject(s)
Antineoplastic Agents/therapeutic use , Caregivers/psychology , Hospice Care , Neoplasms/therapy , Quality of Health Care , Terminal Care , Time-to-Treatment/statistics & numerical data , Aged , Aged, 80 and over , Family Health , Female , Hospice Care/methods , Hospice Care/standards , Hospitalization/statistics & numerical data , Humans , Insurance Claim Review , Male , Medicare/statistics & numerical data , Quality of Health Care/standards , Quality of Health Care/statistics & numerical data , Terminal Care/psychology , Terminal Care/standards , United States
14.
J Palliat Med ; 24(1): 46-52, 2021 01.
Article in English | MEDLINE | ID: mdl-32614634

ABSTRACT

Background: Although access to advance care planning (ACP), palliative care, and hospice has increased, public attitudes may still be barriers to their optimal use. Purpose: To synthesize empirical research from disparate sources that describes public perceptions of ACP, palliative care, and hospice in ways that could inform public messaging. Data Sources: Searches of PubMed and other databases were made from January 2011 to January 2020. Study Selection: Studies reporting survey or interview data with the public that asked specifically about awareness and attitudes toward ACP, palliative care, or hospice were included. Data Extraction and Synthesis: Two reviewers independently screened citations, read full texts, and performed data abstraction. Twelve studies met inclusion criteria and included >9800 participants. For ACP, 80% to 90% of participants reported awareness, and a similar proportion considered it important, but only 10% to 41% reported having named a proxy or completed a written document. For palliative care, 66% to 71% of participants reported no awareness of palliative care, and those who reported awareness often conflated it with end-of-life care. However, after being prompted with a tested definition, 95% rated palliative care favorably. For hospice, 86% of participants reported awareness and 70% to 91% rated it favorably, although 37% held significant misconceptions. Limitations: A limited number of studies met inclusion criteria, and some were published in nonpeer reviewed sources. The studies reflect public perceptions pre-COVID-19. Conclusion: Consumer perceptions of ACP, palliative care, and hospice each have a distinct profile of awareness, perceptions of importance, and reports of action taking, and these profiles represent three different challenges for public messaging.


Subject(s)
Advance Directives/psychology , COVID-19 , Hospice Care/psychology , Hospice Care/standards , Palliative Care/psychology , Palliative Care/standards , Patients/psychology , Adult , Advance Directives/statistics & numerical data , Aged , Aged, 80 and over , Female , Health Knowledge, Attitudes, Practice , Humans , Male , Middle Aged , Patients/statistics & numerical data , SARS-CoV-2 , Surveys and Questionnaires , United States , Young Adult
15.
BMJ Support Palliat Care ; 11(2): 188-199, 2021 Jun.
Article in English | MEDLINE | ID: mdl-32680891

ABSTRACT

BACKGROUND: Guidelines recommend an early access to specialised palliative medicine services for patients with cancer, but studies have reported a continued underuse. Palliative care facilities deliver early care, alongside antineoplastic treatments, whereas hospice care structures intervene lately, when cancer-modifying treatments stop. AIM: This review identified factors associated with early and late interventions of specialised services, by considering the type of structures studied (palliative vs hospice care). DESIGN: We performed a systematic review, prospectively registered on PROSPERO (ID: CRD42018110063). DATA SOURCES: We searched Medline and Scopus databases for population-based studies. Two independent reviewers extracted the data and assessed the study quality using Joanna Briggs Institute critical appraisal checklists. RESULTS: The 51 included articles performed 67 analyses. Most were based on retrospective cohorts and US populations. The median quality scores were 19/22 for cohorts and 15/16 for cross-sectional studies. Most analyses focused on hospice care (n=37). Older patients, men, people with haematological cancer or treated in small centres had less specialised interventions. Palliative and hospice facilities addressed different populations. Older patients received less palliative care but more hospice care. Patients with high-stage tumours had more palliative care while women and patients with a low comorbidity burden received more hospice care. CONCLUSION: Main disparities concerned older patients, men and people with haematological cancer. We highlighted the challenges of early interventions for older patients and of late deliveries for men and highly comorbid patients. Additional data on non-American populations, outpatients and factors related to quality of life and socioeconomic status are needed.


Subject(s)
Hospice Care/statistics & numerical data , Hospice Care/standards , Neoplasms/therapy , Palliative Care/statistics & numerical data , Palliative Care/standards , Practice Guidelines as Topic , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Qualitative Research , Retrospective Studies
16.
J Hosp Palliat Nurs ; 22(6): 489-494, 2020 12.
Article in English | MEDLINE | ID: mdl-33044418

ABSTRACT

Agitation is a common, treatable symptom that profoundly impacts quality of life and exacerbates caregiver fatigue in the hospice setting for patients with dementia. The objective of this study was to analyze the efficacy of tailored nonpharmacological interventions for mitigation of unwanted behaviors in the population of patients with behavioral and psychological symptoms in dementia while receiving hospice care. The 4-domain Pittsburgh Agitation Scale (PAS; Motor, Verbal, Aggressive, Resistance to Care) was used for multiple baseline and posttest measurements of agitation. Effectiveness of nonpharmacological interventions was evaluated using analysis of variance for repeated measures for the total PAS score. Motor agitation was the presenting problem with highest-rated severity compared with Verbal, Aggression, and Resistance to Care domains. Analysis of variance demonstrated no difference between baseline referral and pretest total PAS measures (P = .8), but a significant drop in total PAS agitation after intervention (P < .001). The best outcomes, however, were with patients receiving both nonpharmacological and standard pharmacological interventions as opposed to nonpharmacological interventions alone (P = .034). For patients with dementia presenting with behavioral and psychological symptoms, selected nonpharmacological interventions provide significant mitigation of agitation.


Subject(s)
Behavioral Symptoms/therapy , Dementia/complications , Hospice Care/standards , Aged , Aged, 80 and over , Behavioral Symptoms/psychology , Dementia/psychology , Female , Hospice Care/methods , Hospice Care/trends , Humans , Male , Pilot Projects , Psychomotor Agitation/psychology , Psychomotor Agitation/therapy
17.
Nurs Child Young People ; 32(6): 14-18, 2020 Nov 10.
Article in English | MEDLINE | ID: mdl-32964704

ABSTRACT

In England, a child death review process must be undertaken when a child dies, regardless of the cause of death. Scotland and Wales have their own version of the child death review process, while it is the author's understanding that Northern Ireland are still developing their process. An important aspect of this process is family engagement and bereavement support. This article is an introduction to the bereavement support standards developed by the National Children's Hospitals Bereavement Network, a newly formed group of specialist children's nurses and allied health professionals interested in bereavement care. These standards translate the statutory requirements into practical guidance for healthcare professionals working in children's hospitals in the UK or district general hospitals that offer services for children and families. They also apply to NHS trusts that care for children and need to develop a local policy and workforce with the appropriate skills to provide bereavement care, thereby improving the experiences of families and healthcare professionals. The standards would also be applicable to other NHS trusts and healthcare services in the UK who want to develop an approach to bereavement care and support for families.


Subject(s)
Hospice Care/methods , Standard of Care/trends , Adaptation, Psychological , Attitude to Death , Child Health/standards , Child Health/trends , Hospice Care/psychology , Hospice Care/standards , Hospitals, Pediatric/organization & administration , Hospitals, Pediatric/trends , Humans , Social Support , United Kingdom
18.
Midwifery ; 91: 102841, 2020 Dec.
Article in English | MEDLINE | ID: mdl-32956983

ABSTRACT

BACKGROUND: Pregnancy loss and the death of their baby can be overwhelming for families, especially when the loss is unexpected. The standard of bereavement care families receive around the time of pregnancy or early infant loss can have a significant impact on their psychological recovery. At times external inquiries are carried out to identify issues in the maternity care provided and make recommendations to improve its' standard. OBJECTIVE: This study aims to describe the impact of bereavement care provided to families around the time of pregnancy and/or early infant loss as stated in ten published inquiry reports related to Irish maternity services. METHODS: Using thematic analysis, issues with care encountered by bereaved parents as outlined in the reports were identified. These focussed around five main themes (communication, healthcare staff skills, maternity unit environment, post-mortem/coronial process, local incident reviews). FINDINGS: Bereavement care, as described by families in the ten reports, was not consistently individualised or respectful, resulting in additional feelings of anger and upset. Problems with clear communication of complex issues, in a manner that is understandable to bereaved families, were identified in several reports. Recommendations from the inquiry reports included that experienced and skilled staff should always be available to provide immediate support to bereaved families as appropriate, and assist families in understanding and processing information around the time of their loss. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: Consistent, individualised bereavement care facilitates a seamless transition for bereaved families from diagnosis through the hospital stay to discharge and follow-up, allowing them to focus on their baby, their bereavement and their family's wellbeing. The process of consent for a perinatal post-mortem and associated concerns have evolved over the timeframe of the ten inquiries. We reflect further on this and the impacts of the other issues highlighted, as well as discussing possible improvements to address them as described in the scientific literature.


Subject(s)
Abortion, Spontaneous/therapy , Family/psychology , Hospice Care/standards , Social Work/standards , Abortion, Spontaneous/psychology , Hospice Care/methods , Hospice Care/psychology , Humans , Ireland , Maternal Health Services , Social Work/methods , Social Work/statistics & numerical data
19.
BMC Palliat Care ; 19(1): 128, 2020 Aug 17.
Article in English | MEDLINE | ID: mdl-32807160

ABSTRACT

BACKGROUND: To understand the status of residents' awareness of and demand for hospice care services in Hangzhou and to provide a reference for promoting the formulation of hospice care-related policies in China. METHODS: A small cross-sectional survey of 519 adults aged over 40 years old living in the rural-urban fringe and urban area of Xihu District, Hangzhou City, was conducted using convenience sampling and a self-designed questionnaire. The measures assessed awareness of hospice care (13-item scale), attitudes towards life support therapy (3-item scale), and demand for hospice care services (9-item scale). RESULTS: The rate of awareness of hospice care among community residents was 50.30%. A total of 51.0% of residents wanted only comfortable life-sustaining treatment at the end of their lives. The acceptance of hospice care was positively correlated with the degree of understanding (x2 = 18.382, P = 0.001), and residents in the urban area were more likely to prefer hospice care than residents in the urban-rural fringe (x2 = 7.186, P = 0.028). Elderly residents showed a stronger tendency to prefer comfortable life support therapy (x2 = 12.988, P < 0.001). A total of 83.04% of the residents accepted the current necessity for hospice care to be provided in medical institutions. The preferred locations were professional hospice care institutions or general hospitals. A total of 93.64% of the residents agreed that the number of beds in hospice care wards should not exceed 2. In addition, the residents could afford part of the out-of-pocket expenses for hospice care services, with the ability to pay under 200 yuan per day, and the improvement of facilities was expected. CONCLUSIONS: To improve public awareness and acceptance of hospice care and promote healthy development in China, it is necessary to promote hospice care education for everyone.


Subject(s)
Health Knowledge, Attitudes, Practice , Hospice Care/standards , Residence Characteristics/statistics & numerical data , Adult , Aged , Aged, 80 and over , China , Cross-Sectional Studies , Female , Hospice Care/organization & administration , Hospice Care/statistics & numerical data , Humans , Male , Middle Aged , Surveys and Questionnaires
20.
J Hosp Palliat Nurs ; 22(5): 383-391, 2020 10.
Article in English | MEDLINE | ID: mdl-32826543

ABSTRACT

Effective communication is the foundation of quality care in palliative nursing. As frontline palliative home care providers, nurses could foster more effective bereavement coping skills through therapeutic conversations. The purpose of this study was to evaluate the impact of a nursing intervention offered to bereaved family cancer caregivers. This was a quasi-experimental design, with a posttest-only comparison of the intervention and control groups receiving usual care. Bereaved caregivers (n = 51) receiving services from a specialized palliative home care unit participated and completed measures of depression, anxiety, stress, and grief reactions 3, 5, and 6 months after their close relative had died.There was a significant decrease in anxiety symptoms in the intervention group compared with the control group across all 3 time points. Anxiety and stress symptoms also decreased over time in the 2 groups combined, but this decrease was not observed for depression. When evaluating grief reactions, the intervention group had a lower mean of controlled grief responses, across the posttest period, than the control group.Results demonstrate that providing bereaved family caregivers the opportunity to participate in a therapeutic conversation intervention might reduce distressing symptoms in early bereavement.


Subject(s)
Caregivers/psychology , Hospice Care/standards , Professional-Family Relations , Adult , Aged , Caregivers/statistics & numerical data , Depression/etiology , Depression/psychology , Depression/therapy , Female , Hospice Care/methods , Hospice Care/psychology , Humans , Male , Middle Aged , Neoplasms/complications , Neoplasms/psychology , Neoplasms/therapy , Psychometrics/instrumentation , Psychometrics/methods
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