Browsing by Subject "Palliative care"

Sort by: Order: Results:

Now showing items 1-12 of 12
  • Hui, David; Mori, Masanori; Meng, Yee-Choon; Watanabe, Sharon M.; Caraceni, Augusto; Strasser, Florian; Saarto, Tiina; Cherny, Nathan; Glare, Paul; Kaasa, Stein; Bruera, Eduardo (2018)
    Palliative care referral is primarily based on clinician judgment, contributing to highly variable access. Standardized criteria to trigger automatic referral have been proposed, but it remains unclear how best to apply them in practice. We conducted a Delphi study of international experts to identify a consensus for the use of standardized criteria to trigger automatic referral. Sixty international experts stated their level of agreement for 14 statements regarding the use of clinician-based referral and automatic referral over two Delphi rounds. A consensus was defined as an agreement of ae70% a priori. The response rate was 59/60 (98%) for the first round and 56/60 (93%) for the second round. Twenty-six (43%), 19 (32%), and 11 (18%) respondents were from North America, Asia/Australia, and Europe, respectively. The panel reached consensus that outpatient palliative care referral should be based on both automatic referral and clinician-based referral (agreement = 86%). Only 18% felt that referral should be clinician-based alone, and only 7% agreed that referral should be based on automatic referral only. There was consensus that automatic referral criteria may increase the number of referrals (agreement = 98%), facilitate earlier palliative care access, and help administrators to set benchmarks for quality improvement (agreement = 86%). Our panelists favored the combination of automatic referral to augment clinician-based referral. This integrated referral framework may inform policy and program development.
  • Heinonen, T.; Loimu, V.; Saarilahti, K.; Saarto, T.; Mäkitie, A. (2018)
    Studies on palliative care of head and neck cancer (HNC) patients are scarce although the affected patient population is quite large. To evaluate the role of a specialised palliative-care pathway of HNC patients. Data on all HNC patients who were treated at the Helsinki University Hospital Palliative Care Center during 1 year were retrospectively reviewed. The analysis comprised 60 patients (49 males; mean age 67 years; range 28-88). All patients had a minimum follow-up of 1 year or until death. Fifty-nine (98%) out of the 60 patients died during the follow-up period. Median survival after diagnosis was 11 months (range 3 weeks-11.9 years) and after withholding disease-specific therapies 3 months (range 0-16). Thirty-three (55%) patients received palliative radiotherapy, 27 (45%) had PEG tube and 17 (28%) tracheostomy. Thirty-seven (66%) patients visited an emergency department (ED) (median 1.3 visits; range 0-6) and 21 (35%) were hospitalised at the university hospital during the palliative period. The most common severe complications were infection (also the most common reason for ED visits and hospitalisation), bleeding (four massive airway bleedings with one death), delirium and airway obstruction (one emergency tracheostomy). Twelve (35%) out of the 34 patients who were referred to specialised home care died at home as compared with three (12%) out of the 26 patients not supported by a specialised home-care team. Severe complications leading to an emergency unit visit and hospitalisation are common among HNC patients in their relatively short palliative period reflecting the need for early-integrated palliative care. Collaboration with a specialised palliative home-care team seems to increase end-of-life care at home.
  • Augustine, Erika F.; Adams, Heather R.; de los Reyes, Emily; Drago, Kristen; Frazier, Margie; Guelbert, Norberto; Laine, Minna; Levin, Tanya; Mink, Jonathan W.; Nickel, Miriam; Peifer, Danielle; Schulz, Angela; Simonati, Alessandro; Topcu, Meral; Turunen, Joni A.; Williams, Ruth; Wirrell, Elaine C.; King, Sharon (2021)
    Background: CLN1 disease (neuronal ceroid lipofuscinosis type 1) is a rare, genetic, neurodegenerative lysosomal storage disorder caused by palmitoyl-protein thioesterase 1 (PPT1) enzyme deficiency. Clinical features include developmental delay, psychomotor regression, seizures, ataxia, movement disorders, visual impairment, and early death. In general, the later the age at symptom onset, the more protracted & nbsp;Pediatric Neurology 120 (2021) 38e51 the disease course. We sought to evaluate current evidence and to develop expert practice consensus to support clinicians who have not previously encountered patients with this rare disease. Methods: We searched the literature for guidelines and evidence to support clinical practice recommendations. We surveyed CLN1 disease experts and caregivers regarding their experiences and recommendations, and a meeting of experts was conducted to ascertain points of consensus and clinical practice differences. Results: We found a limited evidence base for treatment and no clinical management guidelines specific to CLN1 disease. Fifteen CLN1 disease experts and 39 caregivers responded to the surveys, and 14 experts met to develop consensus-based recommendations. The resulting management recommendations are uniquely informed by family perspectives, due to the inclusion of caregiver and advocate perspectives. A family-centered approach is supported, and individualized, multidisciplinary care is emphasized in the recommendations. Ascertainment of the specific CLN1 disease phenotype (infantile-, late infantile-, juvenile-, or adult-onset) is of key importance in informing the anticipated clinical course, prognosis, and care needs. Goals and strategies should be periodically reevaluated and adapted to patients' current needs, with a primary aim of optimizing patient and family quality of life. (c) 2021 The Authors. Published by Elsevier Inc. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).
  • Rajala, K.; Lehto, J. T; Sutinen, E.; Kautiainen, H.; Myllärniemi, M.; Saarto, T. (BioMed Central, 2018)
    Abstract Background Idiopathic pulmonary fibrosis (IPF) is a chronic disease with a high symptom burden and poor survival that influences patients’ health-related quality of life (HRQOL). We aimed to evaluate IPF patients’ symptoms and HRQOL in a well-documented clinical cohort during their last two years of life. Methods In April 2015, we sent the Modified Medical Research Council Dyspnea Scale (MMRC), the modified Edmonton Symptom Assessment Scale (ESAS) and a self-rating HRQOL questionnaire (RAND-36) to 300 IPF patients, of which 247 (82%) responded. Thereafter, follow-up questionnaires were sent every six months for two years. Results Ninety-two patients died by August 2017. Among these patients, HRQOL was found to be considerably low already two years before death. The most prominent declines in HRQOL occurred in physical function, vitality, emotional role and social functioning (p < 0.001). The proportion of patients with MMRC scores ≥3 increased near death. Breathlessness and fatigue were the most severe symptoms. Symptom severity for the following symptoms increased significantly and reached the highest mean scores during the last six months of life (numeric rating scale/standard deviation): breathlessness (7.1/2.8), tiredness (7.0/2.3), dry mouth (6.0/3.0), cough (5.8/2.9), and pain with movement (5.0/3.5). Conclusions To our knowledge this is the first study demonstrating, that IPF patients experience remarkably low HRQOL already two years before death, especially regarding physical role. In addition, they suffer from severe breathlessness and fatigue. Furthermore, physical, social and emotional wellbeing deteriorate, and symptom burden increases near death. Regular symptom and HRQOL measurements are essential to assess palliative care needs in patients with IPF.
  • Rajala, K.; Lehto, J. T.; Sutinen, E.; Kautiainen, H.; Myllärniemi, M.; Saarto, T. (2018)
    BackgroundIdiopathic pulmonary fibrosis (IPF) is a chronic disease with a high symptom burden and poor survival that influences patients' health-related quality of life (HRQOL). We aimed to evaluate IPF patients' symptoms and HRQOL in a well-documented clinical cohort during their last two years of life.MethodsIn April 2015, we sent the Modified Medical Research Council Dyspnea Scale (MMRC), the modified Edmonton Symptom Assessment Scale (ESAS) and a self-rating HRQOL questionnaire (RAND-36) to 300 IPF patients, of which 247 (82%) responded. Thereafter, follow-up questionnaires were sent every six months for two years.ResultsNinety-two patients died by August 2017. Among these patients, HRQOL was found to be considerably low already two years before death. The most prominent declines in HRQOL occurred in physical function, vitality, emotional role and social functioning (p
  • Mroueh, R.; Haapaniemi, A.; Saarto, T.; Grönholm, L.; Grénman, R.; Salo, T.; Mäkitie, A. A. (2019)
    PurposeLate-stage OTSCC is associated with poor overall survival (OS). Non-curative treatment approach aims to improve quality of life and prolong survival of patients deemed incurable. The purpose of this study was to investigate the used non-curative treatment modalities for OTSSC and patient survival.MethodsAll patients diagnosed with OTSCC and treated with non-curative intent at the HUS Helsinki University Hospital (Helsinki, Finland) during the 12-year period of 2005-2016 were included. Survival analysis after the non-curative treatment decision was conducted using the Kaplan-Meier method in this population-based study.ResultsEighty-two patients were identified. A non-curative treatment decision was made at presentation without any previous treatment in 26 patients (7% of all patients diagnosed with OTSCC during the study period). Palliative radiotherapy was administered to 24% of all patients. The average survival time after the non-curative treatment decision was 3.7months (median 2 and range 0-26).ConclusionsDue to the short mean survival time after decision for treatment with non-curative intent, and the notable symptom burden in this patient population, a prompt initiation of all non-curative measures is warranted.
  • Hirvonen, Outi M.; Leskela, Riikka-Leena; Gronholm, Lotta; Haltia, Olli; Voltti, Samuli; Tyynelä-Korhonen, Kristiina; Rahko, Eeva K.; Lehto, Juho T.; Saarto, Tiina (2020)
    Background In order to avoid unnecessary use of hospital services at the end-of-life, palliative care should be initiated early enough in order to have sufficient time to initiate and carry out good quality advance care planning (ACP). This single center study assesses the impact of the PC decision and its timing on the use of hospital services at EOL and the place of death. Methods A randomly chosen cohort of 992 cancer patients treated in a tertiary hospital between Jan 2013 -Dec 2014, who were deceased by the end of 2014, were selected from the total number of 2737 identified from the hospital database. The PC decision (the decision to terminate life-prolonging anticancer treatments and focus on symptom centered palliative care) and use of PC unit services were studied in relation to emergency department (ED) visits, hospital inpatient days and place of death. Results A PC decision was defined for 82% of the patients and 37% visited a PC unit. The earlier the PC decision was made, the more often patients had an appointment at the PC unit (> 180 days prior to death 72% and <14 days 10%). The number of ED visits and inpatient days were highest for patients with no PC decision and lowest for patients with both a PC decision and an PC unit appointment (60 days before death ED visits 1.3 vs 0.8 and inpatient days 9.9 vs 2.9 respectively, p <0.01). Patients with no PC decision died more often in secondary/tertiary hospitals (28% vs. 19% with a PC decision, and 6% with a decision and an appointment to a PC unit). Conclusions The PC decision to initiate a palliative goal for the treatment had a distinct impact on the use of hospital services at the EOL. Contact with a PC unit further increased the likelihood of EOL care at primary care.
  • Hirvonen, Outi M; Leskelä, Riikka-Leena; Grönholm, Lotta; Haltia, Olli; Voltti, Samuli; Tyynelä-Korhonen, Kristiina; Rahko, Eeva K; Lehto, Juho T; Saarto, Tiina (BioMed Central, 2020)
    Abstract Background In order to avoid unnecessary use of hospital services at the end-of-life, palliative care should be initiated early enough in order to have sufficient time to initiate and carry out good quality advance care planning (ACP). This single center study assesses the impact of the PC decision and its timing on the use of hospital services at EOL and the place of death. Methods A randomly chosen cohort of 992 cancer patients treated in a tertiary hospital between Jan 2013 –Dec 2014, who were deceased by the end of 2014, were selected from the total number of 2737 identified from the hospital database. The PC decision (the decision to terminate life-prolonging anticancer treatments and focus on symptom centered palliative care) and use of PC unit services were studied in relation to emergency department (ED) visits, hospital inpatient days and place of death. Results A PC decision was defined for 82% of the patients and 37% visited a PC unit. The earlier the PC decision was made, the more often patients had an appointment at the PC unit (> 180 days prior to death 72% and < 14 days 10%). The number of ED visits and inpatient days were highest for patients with no PC decision and lowest for patients with both a PC decision and an PC unit appointment (60 days before death ED visits 1.3 vs 0.8 and inpatient days 9.9 vs 2.9 respectively, p < 0.01). Patients with no PC decision died more often in secondary/tertiary hospitals (28% vs. 19% with a PC decision, and 6% with a decision and an appointment to a PC unit). Conclusions The PC decision to initiate a palliative goal for the treatment had a distinct impact on the use of hospital services at the EOL. Contact with a PC unit further increased the likelihood of EOL care at primary care.
  • Melender, Hanna-Leena; Hökkä, Minna; Saarto, Tiina; Lehto, Juho T. (2020)
    Background Although statements on the competencies required from physicians working within palliative care exist, these requirements have not been described within different levels of palliative care provision by multi-professional workshops, comprising representatives from working life. Therefore, the aim of this study was to describe the competencies required from physicians working within palliative care from the perspectives of multi-professional groups of representatives from working life. Methods A qualitative approach, using a workshop method, was conducted, wherein the participating professionals and representatives of patient organizations discussed the competencies that are required in palliative care, before reaching and documenting a consensus. The data (n = 222) was collected at workshops held in different parts of Finland and it was analyzed using a qualitative content analysis method. Results The description of the competencies required of every physician working within palliative care at the general level included 13 main categories and 50 subcategories in total. 'Competence in advanced care planning and decision-making' was the main category which was obtained from the highest number of reduced expressions from the original data (f = 125). Competence in social interactions was another strong main category (f = 107). In specialist level data, six main categories with 22 subcategories in total were found. 'Competence in complex symptom management' was the main category which was obtained from the biggest number of reduced expressions (f = 46). A notable association between general level and specialist level data was related to networking, since one of the general level categories was 'Competence in consultations and networking' (f = 34) and one of the specialist level categories was 'Competence to offer consultative and educational support to other professionals' (f = 30). Moreover, part of the specialist level results were subcategories which belonged to the main categories produced from the general level data. Conclusions The competencies described in this study emphasize decision-making, social interactions and networking. It is important to listen to the voices of the working-life representatives when planning curricula. Moreover, the views of the working-life representatives inform how the competencies gained during their education meet the challenges of the ordinary work.
  • Melender, Hanna-Leena; Hökkä, Minna; Saarto, Tiina; Lehto, Juho T (BioMed Central, 2020)
    Abstract Background Although statements on the competencies required from physicians working within palliative care exist, these requirements have not been described within different levels of palliative care provision by multi-professional workshops, comprising representatives from working life. Therefore, the aim of this study was to describe the competencies required from physicians working within palliative care from the perspectives of multi-professional groups of representatives from working life. Methods A qualitative approach, using a workshop method, was conducted, wherein the participating professionals and representatives of patient organizations discussed the competencies that are required in palliative care, before reaching and documenting a consensus. The data (n = 222) was collected at workshops held in different parts of Finland and it was analyzed using a qualitative content analysis method. Results The description of the competencies required of every physician working within palliative care at the general level included 13 main categories and 50 subcategories in total. ‘Competence in advanced care planning and decision-making’ was the main category which was obtained from the highest number of reduced expressions from the original data (f = 125). Competence in social interactions was another strong main category (f = 107). In specialist level data, six main categories with 22 subcategories in total were found. ‘Competence in complex symptom management’ was the main category which was obtained from the biggest number of reduced expressions (f = 46). A notable association between general level and specialist level data was related to networking, since one of the general level categories was ‘Competence in consultations and networking’ (f = 34) and one of the specialist level categories was ‘Competence to offer consultative and educational support to other professionals’ (f = 30). Moreover, part of the specialist level results were subcategories which belonged to the main categories produced from the general level data. Conclusions The competencies described in this study emphasize decision-making, social interactions and networking. It is important to listen to the voices of the working-life representatives when planning curricula. Moreover, the views of the working-life representatives inform how the competencies gained during their education meet the challenges of the ordinary work.
  • Lamppu, Pauli J.; Laurila, Jouko; Finne-Soveri, Harriet; Laakkonen, Marja-Liisa; Kautiainen, Hannu; Pitkälä, Kaisu H. (2019)
    Key summary pointsAimWe present the design, intervention, baseline findings and feasibility of a randomized, controlled trial examining the effectiveness of staff training in palliative care on nursing home residents' hospitalizations and health-related quality-of-life.FindingsMost staff members participated in the training sessions and they gave good feedback. Our patient groups are fairly well balanced in their characteristics.MessageIf our further trial shows patient-related benefits, we will have a well-defined model for improving palliative care in nursing homes. AbstractPurposeWe aim to describe the design, educational intervention, baseline findings and feasibility of our training intervention. Our trial will aim to improve the residents' health-related quality of life (HRQOL) and to reduce unnecessary hospitalizations.MethodsWe recruited 340 residents from 20 nursing home wards in Helsinki, and they were randomized into intervention and control groups. At baseline, all the participants were assessed for demographics, medical history, medication, HRQOL, symptoms, hospitalizations, advance care plans, and proxies' satisfaction with care. The staff in the intervention wards were offered four 4-h educational sessions on the principles of palliative care (advance care planning, the adverse effects of hospitalizations, symptom management, communication, giving support to proxies and challenging situations). The sessions were based on constructive learning methods and patient cases.ResultsThe mean age of residents was 84years and 76% were women. The intervention and control groups did not differ with respect to demographics, terminal diseases, comorbidities, nutritional status, cognition or the use of palliative medication. However, the control residents were more likely to be bed-bound and to have a do-not-resuscitate order on their medical chart. Of about 180 staff members, 132 completed the educational intervention. The discussions in the training sessions were lively and the participants gave an overall rating of 4.6/5 for the education.ConclusionsWe have successfully randomized nursing home wards in this trial and completed staff training with very positive feedback. If our trial shows resident-related benefits, we will have a well-defined model for improving palliative care in nursing homes. The study was registered in the Australian New Zealand Clinical Trials Registry under the intervention code: ACTRN12617001040358.
  • Lehto, Juho T.; Hakkarainen, Kati; Kellokumpu-Lehtinen, Pirkko-Liisa; Saarto, Tiina (2017)
    Background: Education in palliative medicine (PM) at medical schools reveals wide variation despite the increasing importance of palliative care. Many universities present poor description of the benefits and detailed content of the total curriculum in PM. Using the recommendations of European Association for Palliative Care (EAPC) as a reference, we evaluated the content and outcomes of the curriculum in PM at the University of Tampere, Finland. Methods: We searched for a PM curriculum by examining the teaching offered by every specialty and compared it to EAPC recommendations. Students' knowledge was evaluated using a progress test over three consecutive years. Results: We found 53.5 teaching hours addressing PM issues, which exceeds the recommendation of the EAPC. Basics, symptom management, ethics, and communication skills were well established, while education in psychosocial/spiritual aspects, teamwork and self-reflection failed to reach the recommendations. Out of the maximum of 4.0, the progress test mean scores in PM among the third, fourth, fifth and sixth year students were 0.1 (SD 0.71), 0.69 (SD 1.28), 1.38 (SD 1.46) and 2.53 (SD 1.26), respectively (p <0.001). This growing knowledge was associated with the timely increase in teaching provided through the PM discipline. In addition, the students who completed the optional PM course achieved better mean scores (2.66; SD 1.27) than the others (1.33; SD 1.43) (p <0.001). Conclusions: The curriculum in PM at the University of Tampere is integrated into the teaching of many disciplines and complied well with the EAPC recommendations. This education led to increasing knowledge in PM among medical students.