| 1. |
- Carlsson, Maria E., et al.
(författare)
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Predictors for Development of Pressure Ulcer in End-of-Life Care : A National Quality Register Study
- 2017
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Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 20:1, s. 53-58
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Tidskriftsartikel (refereegranskat)abstract
- Background: The scientific knowledge about pressure ulcers (PUs) is growing, but there is a shortage of studies of PUs at end of life. The recommendations regarding PU prevention in palliative care (PC) are based on consensus documents. Aim: To use data from a national register to identify predictors for development of PUs at the end of life. Design: A retrospective, descriptive, and comparative study design was used. Setting/Participants: All deceased patients over 17 years old (n = 60,319) and registered in the Swedish Register of Palliative Care (SRPC) during 2014 were included. Statistical Analysis: Logistic regression. Results: In the full model, all health units except general palliative home care had a significantly higher incidence of PUs than did the nursing homes. The well-known predictors of PUs in general, diabetes, post-fracture state, infections, and multiple sicknesses, are predictors even in dying patients. Dementia was significantly associated with lower likelihood of PUs, while pain was associated with more PUs. Intravenous drip or enteral feeding was associated with a significantly decreased likelihood of developing PUs. Conclusions: The SRPC could be a unique resource for quality improvement and research. The present study cannot prove causation, but it can report correlations between background variables and PU prevalence. More studies, with different designs, are warranted to establish the roles of risk factors for PU in end-of-life care.
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| 2. |
- Erichsén, Eva, et al.
(författare)
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Constipation in specialized palliative care : prevalence, definition and patient perceived symptom distress
- 2015
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Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert. - 1096-6218 .- 1557-7740. ; 18:7, s. 585-592
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Tidskriftsartikel (refereegranskat)abstract
- Context: The prevalence of constipation among patients in palliative care has varied in prior research, from 18-90 %, depending on different study factors.Objectives: The aim of this study was to describe and explore the prevalence and symptom distress of constipation, using different definitions of constipation, in patients admitted to specialized palliative care settings.Methods: Data was collected in a cross-sectional survey from 485 patients in 38 palliative care units in Sweden. Variables were analyzed using logistic regression and summarized as odds ratio (OR).Result: The prevalence of constipation varied between 7 – 43 %, depending on the definition used. Two constipation- groups were found: (i) Medical constipation- group (MCG; ≤ 3 defecations/week n=114; 23%); (ii) Perceived constipation- group (PCG; Patients with a perception of being constipated the last two weeks; n= 171; 35%). Three sub-groups emerged: patients with (a) only medical constipation (7 %), (b) only perceived constipation (19 %), and (c) with both medical and perceived constipation (16%). There were no differences in symptom severity between groups; 71% of all constipated patients had severe constipation.Conclusion: The prevalence of constipation may differ, depending on the definition used and how constipation is assessed. In this study we found two main groups and three sub-groups, analyzed from the definitions of frequency of bowel movements and experience of being constipated. To be able to identify constipation, the patients’ definition has to be further explored and assessed.
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| 3. |
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| 4. |
- Hjelmfors, Lisa, et al.
(författare)
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Patient-Nurse Communication about Prognosis and End-of-Life Care
- 2015
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Ingår i: Journal of Palliative Medicine. - : MARY ANN LIEBERT, INC. - 1096-6218 .- 1557-7740. ; 18:10, s. 865-871
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Tidskriftsartikel (refereegranskat)abstract
- Background: Although several studies advise that discussions about prognosis and end-of-life care should be held throughout the whole heart failure (HF) trajectory, data is lacking on the prevalence and practice of such discussions in HF care. Objective: The study objective was to explore how often and why HF nurses in outpatient clinics discuss prognosis and end-of-life care in the context of patient education. Methods: This was a descriptive and comparative study. Participants were HF nurses from Swedish and Dutch HF outpatient clinics. Measurements were taken via a survey for both quantitative and qualitative data. Additional data was collected via open-ended questions and analyzed with content analysis. Results: Two hundred seventy-nine nurses registered 1809 patient conversations using a checklist. Prognosis and end-of-life care were among the least frequently discussed topics, whereas symptoms of HF was discussed most often. Prognosis was discussed with 687 patients (38%), and end-of-life care was discussed with 179 patients (10%). Prognosis and end-of-life care were discussed more frequently in The Netherlands than in Sweden (41% versus 34%, pless than0.001, 13% versus 4%, pless than0.001). The nurses did not always recognize prognosis and end-of-life care discussions as a part of their professional role. Conclusions: Currently, patient-nurse communication about prognosis and end-of-life care does not seem to be routine in patient education in HF clinics, and these discussions could be included more often. The reasons for nurses to discuss these topics were related to clinical routines, the patients situation, and professional responsibilities. To improve future care, communication with patients needs to be further developed.
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| 5. |
- Holm, Maja, et al.
(författare)
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Associations between Predeath and Postdeath Grief in Family Caregivers in Palliative Home Care
- 2019
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Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert. - 1096-6218 .- 1557-7740. ; 22:12, s. 1530-1535
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Tidskriftsartikel (refereegranskat)abstract
- Background: Family caregivers in palliative care may be placed in a complicated emotional situation wherein they suffer the risk of grief reactions both pre- and postbereavement and may also experience symptoms of anxiety and depression. Objective: The aim of this study was to investigate (1) associations between predeath grief and postdeath grief and (2) whether these are moderated by symptoms of anxiety and depression. Design: This was a prospective correlational study. Linear regression analysis in three blocks was used to investigate associations between pre- and postdeath grief and moderation effects of anxiety and depression. Postdeath grief was used as the outcome variable and predeath grief was used as the explanatory variable in block I. The moderator variables, symptoms of anxiety, and symptoms of depression were added as covariates in block II. A multiplicative interaction term between predeath grief and anxiety/depression was added to the model in block III. Setting/Subjects: Data were collected at 10 facilities specialized in palliative home care where health care professionals provided advanced care to patients with various diagnoses in their own homes. Measurements: The anticipatory grief scale and the Texas Revised Inventory of Grief were used to measure pre- and postdeath grief, respectively. To measure symptoms of anxiety and depression, the Hospital Anxiety and Depression scale was used. Results: A total of 128 family caregivers were included. Significant associations were found between predeath grief and postdeath grief and this association remained when controlled against symptoms of anxiety or depression. We found no moderation effect of anxiety or depression on the association between pre- and postdeath grief. Conclusions: In conclusion, grief before and after an expected death can be regarded as parts of the same grief process. Hence, knowing the intensity of predeath grief could be a way to predict the levels of postdeath grief.
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| 6. |
- Jacob, Jean, et al.
(författare)
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End-of-life treatments in pediatric patients at a government tertiary cancer center in India
- 2018
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Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 21:7, s. 907-912
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Tidskriftsartikel (refereegranskat)abstract
- Aim: The primary objective of this study was to describe demographics and end-of-life treatments of children with cancer at a government tertiary cancer center in India. Methods: A retrospective review was undertaken of medical charts of all children younger than 18 years, who died as inpatients while undergoing treatment at the pediatric oncology department between April and September 2016. Data were collected on demographics, diagnosis, treatments, survival, palliative care involvement, and symptoms at end of life. Results: There were 44 pediatric oncology patients who died in the hospital during the study period. The most frequent diagnoses were hematological malignancies (n = 29). Tumor-specific treatment was given to 38/44 (86%) patients in the last 30 days of life, and 13 patients in the last day of life or 1 day before. Of all deaths, 23/44 (52%) occurred within 30 days of admission to the pediatric ward and 34/44 (77%) within 90 days. Of the 44 patients, 25 (57%) were referred to palliative care. The median number of days between referral and death was 14 (0-78) days. Frequent symptoms documented were bleeding (11/44), dyspnea (10/44), pain (7/44), seizures (7/44), and delirium (5/44), with each patient having one or more of these symptoms. Only patients with a palliative care referral received opioid analgesics or benzodiazepines at the end of life. Conclusions: This study highlights the demographics of suffering, death, and end-of-life care in children with cancer at a government tertiary cancer center in India.
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| 7. |
- Lundstrom, S
(författare)
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Do Not Assume!
- 2015
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Ingår i: Journal of palliative medicine. - : Mary Ann Liebert Inc. - 1557-7740 .- 1096-6218. ; 18:12, s. 996-996
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)
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| 8. |
- Lövgren, Malin, et al.
(författare)
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Care at end of life influences grief : A nationwide long-term follow-up among young adults who lost a brother or sister to childhood cancer
- 2018
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Ingår i: Journal of Palliative Medicine. - Larchmont, New York : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 21:2, s. 156-162
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: A majority of cancer-bereaved siblings report long-term unresolved grief, thus it is important to identify factors that may contribute to resolving their grief.OBJECTIVE: To identify modifiable or avoidable family and care-related factors associated with unresolved grief among siblings two to nine years post loss.DESIGN: This is a nationwide Swedish postal survey.MEASUREMENTS: Study-specific questions and the standardized instrument Hospital Anxiety and Depression Scale. Primary outcome was unresolved grief, and family and care-related factors were used as predictors.SETTING/PARTICIPANTS: Cancer-bereaved sibling (N = 174) who lost a brother/sister to childhood cancer during 2000-2007 in Sweden (participation rate 73%). Seventy-three were males and 101 females. The age of the siblings at time of loss was 12-25 years and at the time of the survey between 19 and 33 years.RESULTS: Several predictors for unresolved grief were identified: siblings' perception that it was not a peaceful death [odds ratio (OR): 9.86, 95% confidence interval (CI): 2.39-40.65], limited information given to siblings the last month of life (OR: 5.96, 95% CI: 1.87-13.68), information about the impending death communicated the day before it occurred (OR: 2.73, 95% CI: 1.02-7.33), siblings' avoidance of the doctors (OR: 3.22, 95% CI: 0.75-13.76), and lack of communication with family (OR: 2.86, 95% CI: 1.01-8.04) and people outside the family about death (OR: 5.07, 95% CI: 1.64-15.70). Depressive symptoms (OR: 1.27, 95% CI: 1.12-1.45) and time since loss (two to four years: OR: 10.36, 95% CI: 2.87-37.48 and five to seven years: OR: 8.36, 95% CI: 2.36-29.57) also predicted unresolved grief. Together, these predictors explained 54% of the variance of unresolved grief.CONCLUSION: Siblings' perception that it was not a peaceful death and poor communication with family, friends, and healthcare increased the risk for unresolved grief among the siblings.
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| 9. |
- Mansfeld, Annica, et al.
(författare)
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Palliative sedation via intraosseous vascular access : A safe and feasible way to obtain a vascular access end of life
- 2019
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Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 22:1, s. 109-111
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Tidskriftsartikel (refereegranskat)abstract
- Intraosseous (IO) access is normally reserved for emergencies and critical care conditions when venous cannulation is not possible. Nonetheless, we present a case of IO insertion to a 56-year-old man, tetraplegic for many years due to progressive spinal muscular atrophy and with refractory suffering. The IO access was used for palliative sedation with propofol in a home care setting. The patient died after 11 days of palliative care, of which the last 4 days were with palliative sedation using an IO cannula as a vascular access. No complications were noted from this route of administration. We advocate the use of IO access in the palliative care of terminal ill patients when a venous cannulation is not possible.
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| 10. |
- Noguera, Antonio, et al.
(författare)
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How do experienced professors teach palliative medicine in european universities? a cross-case analysis of eight undergraduate educational programs
- 2018
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Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 21:11, s. 1621-1626
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Tidskriftsartikel (refereegranskat)abstract
- Background: In Europe in recent decades, university teaching of palliative medicine (PM) has evolved. In some countries it has been introduced as a compulsory subject in all medical schools, but in a majority of countries it remains an isolated subject at few universities. Objective: To explore how PM has been introduced into the curricula and how it is currently being taught at different European universities. Method: Case study method using face-to-face semistructured interviews with experienced PM professors, comparing how they have developed PM undergraduate programs at their universities. Results: An intentional sample of eight university professors from Spain, France, UK, Italy, Hungary, Sweden, Germany, and Poland was chosen. The introduction of PM in the universities depends on the existence of a favorable social and political context in relation to palliative care and the initiative of pioneers, trusted by students, to push this education forward. A PM curriculum frequently starts as an optional subject and becomes mandatory in a short period. In the reported universities, PM uses a wide variety of teaching methods, such as lectures, workshops, role-plays, and discussions. PM assessment included tests, discussions, reflections, portfolios, and research works. According to respondents' opinions, lack of recognition, funding, and accredited teachers, along with competition from other curricula, are the main barriers for palliative medicine teaching development at universities. Conclusion: Diverse paths and tools have been identified for PM teaching in Europe. The described cases may shed light on other medical schools to develop PM curricula.
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| 11. |
- Rayala, Spandana, et al.
(författare)
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Low-Dose Oral Ketamine for Procedural Analgesia in Pediatric Cancer Patients Undergoing Lumbar Puncture at a Resource-Limited Cancer Hospital in India
- 2019
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Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 22:11, s. 1357-1363
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Tidskriftsartikel (refereegranskat)abstract
- Aim: The aim of this study was to evaluate the therapeutic efficacy and safety profile of orally administered low-dose ketamine for procedural pain management in pediatric cancer patients undergoing lumbar puncture (LP) in a resource-limited hospital setting. Methods: Patients between 4 and 15 years of age, with leukemia, undergoing LP were asked to participate. The study was designed as a two-armed blinded placebo-controlled trial where 0.8 mg/kg (bodyweight) of ketamine mixed in juice was given 30 minutes before the procedure to Group K (ketamine) compared with placebo, only juice, to Group P (placebo). In addition, topical analgesia (EMLA®) was given according to established standard of care. Patients and caregivers assessed the pain using the Wong-Baker Faces Pain Rating Scale. Results: A total number of 52 patients, equally distributed between Group K and Group P, were included in the study. The placebo-controlled group had significantly higher self-reported pain score than the group receiving ketamine (p = 0.046), as well as in caregiver-assessed pain (p = 0.033). Only three incidents of mild adverse effects were reported. Conclusion: Low-dose oral ketamine can be safely administered for procedural analgesia in pediatric cancer patients undergoing LP in a resource-limited hospital setting and have significant pain-reducing effect compared with placebo.
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| 12. |
- Sinha, Sudha, et al.
(författare)
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Cancer Treatment and End-of-Life Care
- 2018
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Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 21:8, s. 1100-1106
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Tidskriftsartikel (refereegranskat)abstract
- AIM: To study to what extent tumor-specific treatment (chemo- or radiotherapy) was given during the last 30 days in life and to examine how many of the patients were referred to a specialized palliative care unit (PCU), at a low-resource governmental hospital in India.PATIENTS AND METHODS: Medical records of adult cancer patients deceased between April 1 and May 31 in 2016, and pediatric cancer patients deceased between April 1 and September 30 in 2016 were collected. Data regarding gender, age at admission, cancer diagnosis, tumor-specific treatment received, referral to the PCU, and date of death, were sampled.RESULTS: A total of 96 patients (52 adults and 44 pediatric patients) were included in the study. In the last 30 days of life, tumor-specific treatment was given to 39 adult patients and 38 pediatric patients. During the last week in life, 26 adult and 25 pediatric patients, respectively, received tumor-specific treatment. Twenty-six adult and 25 pediatric patients, respectively, were referred to the PCU. End-of-life (EoL) tumor therapy was given to a lesser extent among referred patients.CONCLUSIONS: Eighty percent of the patients were given tumor-specific treatment near EoL. Half of the patients had been referred for specialized palliative care (SPC).
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| 13. |
- Strang, Susann, 1953, et al.
(författare)
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Family Caregivers' Heavy and Overloaded Burden in Advanced Chronic Obstructive Pulmonary Disease
- 2018
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Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 21:12, s. 1768-1772
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Tidskriftsartikel (refereegranskat)abstract
- Background: Due to severe symptoms and poor prognosis in advanced cases, chronic obstructive pulmonary disease (COPD) is today seen as a palliative diagnosis. The everyday lives of patients as well as their relatives are restricted and affected by significant psychosocial problems. Objective: To obtain detailed knowledge about people's experiences, for example, transitions in relationships, responsibility, and possible changes in communication, caused by the illness. Design: This is a qualitative interview study using both focus group interviews and individual interviews. Setting/Subjects: In total, 35 family members with personal experience of living with a person with severe COPD were interviewed. Measurements: The semistructured interviews were audio-recorded, transcribed verbatim, and analyzed with a qualitative content analysis. Results: Three themes emerged: (1) A restricted everyday life. The family caregivers felt confined to their own home, they had to be constantly attentive, and their lives became increasingly restricted. (2) A changed relationship. There was a shift in responsibility and their mutual communication. The family caregivers' own needs were neglected and the relationship was affected. (3) Joy through adaption. Still, caregivers strived for normality and, through gradual adaption, they could still experience joy. Conclusions: Being a family caregiver is a burdensome and complex situation. Besides providing practical help, the family caregiver needs to support the ill person. Roles and communication patterns are changed. Healthcare staff must identify the needs of the family caregivers. A family caregiver who feels acknowledged and confident can support their severely ill family member.
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| 14. |
- Udo, Camilla, et al.
(författare)
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A nationwide study of young adults’ perspectives on participation in bereavement research
- 2019
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Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 22:10, s. 1271-1273
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND:Young adults represent a minority in research; they are often considered too young or too old for participation. There is sparse information, especially in bereavement research, regarding how this age group perceives research participation and what they consider beneficial or harmful.AIM:To explore how parentally bereaved and nonbereaved young adults perceive research participation.DESIGN:Qualitative analysis of free-text comments collected in a Swedish nation-wide survey.SETTING/PARTICIPANTS:Parentally cancer-bereaved and nonbereaved young adults between 18 and 25 years old living in Sweden.RESULTS:Five categories were identified from the free-text comments, three among the cancer-bereaved: (1) therapeutic to remember the deceased, (2) valuable to help others and improve care, and (3) short-term distressful-long-term beneficial, and two among the nonbereaved: (1) increased reflection and awareness about life, and (2) an opportunity to help others.CONCLUSIONS:It is important to invite young adults to participate in bereavement research. The results suggest that potential harm is minimal and that participating in bereavement research can have a beneficial effect on young adults.
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| 15. |
- Årestedt, Kristofer, 1968-, et al.
(författare)
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Symptom relief and palliative care during the last week of life among patients with heart failure : a national register study
- 2018
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Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert. - 1096-6218 .- 1557-7740. ; 21:3, s. 361-367
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Heart failure is a disease with high morbidity, mortality, and physical and psychological burden. More knowledge about the care provided for patients with heart failure close to death is needed.OBJECTIVE: The aim was to describe key aspects of palliative care during the last week of life in patients with heart failure, as reported by healthcare professionals.DESIGN: This is a national register study.SETTING/SUBJECTS: The study included 3981 patients with diagnosed heart failure as the underlying cause of death.MEASUREMENTS: Data were obtained from the Swedish Register of Palliative Care, a national quality register that focuses on patients' last week of life, independent of diagnosis or care setting. The register includes information about care interventions connected with key aspects of palliative care. Data are reported retrospectively by a nurse or physician at the healthcare unit where the patient dies.RESULTS: Only 4.2% of patients with heart failure received specialized palliative care. In their last week of life, symptom prevalence was high, validated scales were seldom used, and symptoms were unsatisfactorily relieved. Around one-fifth (17%) of the patients in the study died alone. Less than half of family members had been offered bereavement support (45%). Moreover, one-third (28%) of the patients and more than half (61%) of the family members were reported to have had end-of-life discussions with a physician during the illness trajectory.CONCLUSION: The results indicate inadequate palliative care for patients with heart failure during their last week of life.
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