Commenced in January 2007
Frequency: Monthly
Edition: International
Paper Count: 22

palliative care Related Abstracts

22 Principles and Guidance for the Last Days of Life: Te Ara Whakapiri

Authors: Tania Chalton

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In June 2013, an independent review of the Liverpool Care Pathway (LCP) identified a number of problems with the implementation of the LCP in the UK and recommended that it be replaced by individual care plans for each patient. As a result of the UK findings, in November 2013 the Ministry of Health (MOH) commissioned the Palliative Care Council to initiate a programme of work to investigate an appropriate approach for the care of people in their last days of life in New Zealand (NZ). The Last Days of Life Working Group commenced a process to develop national consensus on the care of people in their last days of life in April 2014. In order to develop its advice for the future provision of care to people in their last days of life, the Working Group (WG) established a comprehensive work programme and as a result has developed a series of working papers. Specific areas of focus included: An analysis of the UK Independent Review findings and an assessment of these findings to the NZ context. A stocktake of services providing care to people in their last days of life, including aged residential care (ARC); hospices; hospitals; and primary care. International and NZ literature reviews of evidence and best practice. Survey of family to understand the consumer perspective on the care of people in their last days of life. Key aspects of care that required further considerations for NZ were: Terminology: clarify terminology used in the last days of life and in relation to death and dying. Evidenced based: including specific review of evidence regarding, spiritual, culturally appropriate care as well as dementia care. Diagnosis of dying: need for both guidance around the diagnosis of dying and communication with family. Workforce issues: access to an appropriate workforce after hours. Nutrition and hydration: guidance around appropriate approaches to nutrition and hydration. Symptom and pain management: guidance around symptom management. Documentation: documentation of the person’s care which is robust enough for data collection and auditing requirements, not ‘tick box’ approach to care. Education and training: improved consistency and access to appropriate education and training. Leadership: A dedicated team or person to support and coordinate the introduction and implementation of any last days of life model of care. Quality indicators and data collection: model of care to enable auditing and regular reviews to ensure on-going quality improvement. Cultural and spiritual: address and incorporate any cultural and spiritual aspects. A final document was developed incorporating all the evidence which provides guidance to the health sector on best practice for people at end of life: “Principles and guidance for the last days of life: Te Ara Whakapiri”.

Keywords: palliative care, end of life, New Zealand, guidelines

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21 Sociocultural Context of Pain Management in Oncology and Palliative Nursing Care

Authors: Andrea Zielke-Nadkarni

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Pain management is a question of quality of life and an indicator for nursing quality. Chronic pain which is predominant in oncology and palliative nursing situations is perceived today as a multifactorial, individual emotional experience with specific characteristics including the sociocultural dimension when dealing with migrant patients. This dimension of chronic pain is of major importance in professional nursing of migrant patients in hospices or palliative care units. Objectives of the study are: 1. To find out more about the sociocultural views on pain and nursing care, on customs and nursing practices connected with pain of both Turkish Muslim and German Christian women, 2. To improve individual and family oriented nursing practice with view to sociocultural needs of patients in severe pain in palliative care. In a qualitative-explorative comparative study 4 groups of women, Turkish Muslims immigrants (4 from the first generation, 5 from the second generation) and German Christian women of two generations (5 of each age group) of the same age groups as the Turkish women and with similar educational backgrounds were interviewed (semistructured ethnographic interviews using Spradley, 1979) on their perceptions and experiences of pain and nursing care within their families. For both target groups the presentation will demonstrate the following results in detail: Utterance of pain as well as “private” and “public” pain vary within different societies and cultures. Permitted forms of pain utterance are learned in childhood and determine attitudes and expectations in adulthood. Language, especially when metaphors and symbols are used, plays a major role for misunderstandings. The sociocultural context of illness may include specific beliefs that are important to the patients and yet seem more than far-fetched from a biomedical perspective. Pain can be an influential factor in family relationships where respect or hierarchies do not allow the direct utterance of individual needs. Specific resources are often, although not exclusively, linked to religious convictions and are significantly helpful in reducing pain. The discussion will evaluate the results of the study with view to the relevant literature and present nursing interventions and instruments beyond medication that are helpful when dealing with patients from various socio-cultural backgrounds in painful end-oflife situations.

Keywords: palliative care, Pain Management, migrants, sociocultural context

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20 Telephonic Communication in Palliative Care for Better Management of Terminal Cancer Patients in Rural India: An NGO Based Approach

Authors: Aditya Manna, L. K. Khanra, S. K. Sarkar

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Aim: Due to financial incapability and the absence of manpower-poor families often fail to carry their advanced cancer patients to the nodal centers. This pilot study will explore whether communication by mobile phone can lessen this burden. Method: Initially a plan was generated regarding management of an advanced cancer patient in a nodal center at District Head Quarter. Subsequently every two week a trained social worker attached to the nodal center will follow up and give necessary advice and emotional support to the patients and their families through their registered mobile phone number. Patient’s family were also encouraged to communicate with the team by phone in case of fresh complain and urgency in between. Results: Since initiation in January 2013, 193 cancer patients were contacted by mobile phone every two weeks to enquire about their difficulties. In 76% of the situation trained social workers could give necessary advice by phone regarding management of their physical symptoms. Moreover, patient’s family was really overwhelmed by the emotional support offered by the team over the phone. Only 24% of cancer patients have to attend the nodal center for expert advice from Palliative Care specialists. Conclusion: This novel approach helped: (a) In providing regular physical and emotional support to the patients and their families. (b) In significantly reducing the financial and manpower problems of carrying patients to the nodal units. (c) In improving the quality of life of patients by continuous guidance. More and more team members can take help of this new strategy for better communication and uninterrupted care.

Keywords: palliative care, Terminal Care, home based palliative care, rural india

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19 The Role of Volunteers in Quality Palliative Care Delivery

Authors: Aditya Manna, Lalit Kumar Khanra, Shyamal Kumar Sarkar

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Introduction: Here in India almost 75% of cancer patient die a sad death of neglect due to lack of awareness about palliative care and low economic level. Surveys in India show that two third of cancer patient do not get proper care during the terminal phase of their life. Palliative care through volunteers can make a significant difference in this respect. Objective: To identify and try to solve, to the extent possible, the main difficulties in giving palliative care to the terminal cancer patients of the area. And evaluate the impact of volunteer’s direct care of palliative patients and their families. Methods: Feedback from patients and their relatives regarding the palliative care they receive from nursing home and from volunteers and compare the two. Also feedback from volunteers regarding their positive and negative experience while delivering palliative care service. Then evaluate the data to compare and improve the quality of service. Results: We carried out two studies. One study was undertaken in nursing home palliative care and another was in home setting by volunteers. Both studies were in adult palliative care services. Since January 2015, 496 cases were studied to enquire about their experience in both home based care and nursing home care. Both the studies fulfilled our quality appraisal criteria. One found that those families and patients who received home visits from volunteers were significantly more satisfied. The study highlighted the value of the role of volunteers in better satisfaction of patients and their families. Conclusions: Further research is needed to evaluate the role of volunteers in palliative care and how it can be delivered appropriately and effectively. We also wish to compare our findings with similar studies elsewhere.

Keywords: Cancer, palliative care, Home care, Terminal Care

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18 Palliative Performance Scale Differences between Patients Referred by Specialized Cancer Center and General Hospitals to the Palliative Care Center in Kuwait

Authors: Khalid Al Saleh, Najlaa AlSayed

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Background: Palliative care is changing from just ‘end of life care’ to care delivered earlier in the disease course. Metanalysis showed that Palliative Performance Scale (PPS) is associated with increased length of survival. The Palliative Care Center (PCC) in Kuwait is the only stand-alone center in Eastern Mediterranean Region with a capacity of 92 beds. We compared clinical characteristics between patients referred from the Specialized Cancer Center and general hospitals in Kuwait to PCC. Method: A cross Sectional survey was conducted since the opening of PCC in January 2011 to June 2013. Patients’ data on demographics, type of the cancer, PPS score and referring hospital were collected and analyzed. Results: Total number of the patients was 142. Mean age was 61.05±14.79 years, 66 patients (47.1%) were males and 74 (52.9%) were females. The most common cancers in males were lung (n=18, 27.3%) followed by head and neck cancers (n=8, 12.1%) and brain tumors (n=7, 10.6%) while in females, the most common cancers were breast cancer (n=12, 16.7%) followed by ovarian cancer (n=10, 13.9%) and Cancer Colon (n=8, 11.1%). Patients with PPS score 30% were 27.9% (n=39), 40% in 40.7% (n=57), and 50% in 17.1% (n=24) respectively. Patients referred from the Specialized Cancer Center had significantly higher portion of patients with PPS score > 30% (73.4%, n=94), compared to patients coming from general hospitals (33.3%, n=4), P value= 0.007. Conclusion: There is significant difference in PPS scores between patients referred from the Specialized Cancer Center compared to patients referred from general hospitals. We encourage that all cancer patients should be treated in Specialized Cancer Centers and earlier involvement of Palliative Care Centers to achieve better survival. Training workshops are needed for health care professionals working in general hospitals to raise awareness about earlier referral of patients to palliative care services.

Keywords: palliative care, Kuwait, performance scale differences, pps score, specialized hospitals

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17 Traditional Medicine and Islamic Holistic Approach in Palliative Care Management of Terminal Illpatient of Cancer

Authors: Mohammed Khalil Ur Rahman, Mohammed Alsharon, Arshad Muktar, Zahid Shaik

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Any ailment can go into terminal stages, cancer being one such disease which is many times detected in latent stages. Cancer is often characterized by constitutional symptoms which are agonizing in nature which disturbs patients and their family as well. In order to relieve such intolerable symptoms treatment modality employed is known to be ‘Palliative Care’. The goal of palliative care is to enhance patient’s quality of life by relieving or rather reducing the distressing symptoms of patients such as pain, nausea/ vomiting, anorexia/loss of appetite, excessive salivation, mouth ulcers, weight loss, constipation, oral thrush, emaciation etc. which are due to the effect of disease or due to the undergoing treatment such as chemotherapy, radiation etc. Ayurveda and Unani as well as other traditional medicines is getting more and more international attention in recent years and Ayurveda and Unani holistic perspective of the disease, it seems that there are many herbs and herbomineral preparation which can be employed in the treatment of malignancy and also in palliative care. Though many of them have yet to be scientifically proved as anti-cancerous but there is definitely a positive lead that some of these medications relieve the agonising symptoms thereby making life of the patient easy. Health is viewed in Islam in a holistic way. One of the names of the Quran is al-shifa' meaning ‘that which heals’ or ‘the restorer of health’ to refer to spiritual, intellectual, psychological, and physical health. The general aim of medical science, according to Islam, is to secure and adopt suitable measures which, with Allah’s permission, help to preserve or restore the health of the human body. Islam motivates the Physician to view the patient as one organism. The patient has physical, social, psychological, and spiritual dimensions that must be considered in synthesis with an integrated, holistic approach. Aims & Objectives: - To suggest herbs which are mentioned in Ayurveda Unani with potential palliative activity in case of Cancer patients. - Most of tibb nabawi [Prophetic Medicine] is preventive medicine and must have been divinely inspired. - Spiritual Aspects of Healing: Prayer, dua, recitation of the Quran - Remembrance of Allah play a central role.Materials & Method: Literary review of the herbs supported with experiential evidence will be discussed. Discussion: On the basis of collected data subject will be discussed in length. Conclusion: Will be presented in paper.

Keywords: palliative care, Quran, Hadith, holistic, Ayurvedic and Unani traditional system of medicine

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16 Family Medicine Residents in End-of-Life Care

Authors: Goldie Lynn Diaz, Ma. Teresa Tricia G. Bautista, Elisabeth Engeljakob, Mary Glaze Rosal

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Introduction: Residents are expected to convey unfavorable news, discuss prognoses, and relieve suffering, and address do-not-resuscitate orders, yet some report a lack of competence in providing this type of care. Recognizing this need, Family Medicine residency programs are incorporating end-of-life care from symptom and pain control, counseling, and humanistic qualities as core proficiencies in training. Objective: This study determined the competency of Family Medicine Residents from various institutions in Metro Manila on rendering care for the dying. Materials and Methods: Trainees completed a Palliative Care Evaluation tool to assess their degree of confidence in patient and family interactions, patient management, and attitudes towards hospice care. Results: Remarkably, only a small fraction of participants were confident in performing independent management of terminal delirium and dyspnea. Fewer than 30% of residents can do the following without supervision: discuss medication effects and patient wishes after death, coping with pain, vomiting and constipation, and reacting to limited patient decision-making capacity. Half of the respondents had confidence in supporting the patient or family member when they become upset. Majority expressed confidence in many end-of-life care skills if supervision, coaching and consultation will be provided. Most trainees believed that pain medication should be given as needed to terminally ill patients. There was also uncertainty as to the most appropriate person to make end-of-life decisions. These attitudes may be influenced by personal beliefs rooted in cultural upbringing as well as by personal experiences with death in the family, which may also affect their participation and confidence in caring for the dying. Conclusion: Enhancing the quality and quantity of end-of-life care experiences during residency with sufficient supervision and role modeling may lead to knowledge and skill improvement to ensure quality of care. Fostering bedside learning opportunities during residency is an appropriate venue for teaching interventions in end-of-life care education.

Keywords: palliative care, Geriatrics, End of Life Care, residency training skill

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15 Difficulties in Providing Palliative Care in Rural India, West Bengal: Experience of an NGO

Authors: Aditya Manna

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Introduction: As in any developing countries state of West Bengal in India has a huge burden of cancer patients in advanced stage coming from rural area where awareness regarding the usefulness of palliative care in rather poor. Objective: Our goal is to give a pain free good quality of life in these advanced stage cancer patients. Objective of this study is to identify the main difficulties in achieving the above goal in a rural village setting in India. Method: Advanced cancer patients in need of palliative care in various villages in of rural India were selected for this study. Their symptoms and managements in that rural surroundings were evaluated by an NGO (under the guidance of a senior palliative care specialist) working in that area. An attempt was made to identify the main obstacles in getting proper palliative care in a rural setting. Results: Pain, fatigue are the main symptoms effecting these patients. In most patients pain and other symptoms control were grossly inadequate due to lack of properly trained manpower in the rural India. However regular homecare visits by a group of social workers were of immense help in the last few months of life. NGO team was well guided by a palliative care specialist. Conclusion: There is a wide gap of trained manpower in this filled in rural areas of India. Dedicated groups from rural area itself need encouragement and proper training, so that difficult symptoms can be managed locally along with necessary social and psychological support to these patients.

Keywords: palliative care, Home care, NGO, rural india

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14 Factors Associated with Ketamine Use in Pancreatic Cancer Patient in a Single Hospice Center

Authors: Kyung Min Kwom, Young Joo Lee

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Purpose: Up to 90% of pancreatic cancer patient suffer from neuropathic pain. In palliative care setting, pain control in a pancreatic cancer patient is one of the major goals. Ketamine is a NMDA receptor antagonist effective in neuropathic pain. Also, there have been studies about opioid sparing effect of ketamine. This study was held in palliative care unit among pancreatic cancer patients to find out the factors related to ketamine use and the opioid sparing effect. Methods: Medical records of pancreatic cancer patients admitted to St. Mary’s hospital palliative care unit from 2013.1 to 2014.12 were reviewed. Patients were divided into two categories according to ketamine use. Also, opioid use before and after ketamine use was compared in ketamine group. Results: Compared to non ketamine use group, patients in ketamine group required a higher dose of opioid. Total opioid dose, daily opioid dose, number of daily rescue medication, daily average rescue dose were statistically significantly higher in ketamine group. Opioid requirement was increased after ketamine administration. Conclusion: In this study, ketamine group required more opioid. Ketamine is frequently considered in patients with severe pain, requiring high amount of opioid. Also, ketamine did not have an opioid sparing effect. Future studies about palliative use of ketamine in a larger number of patients are required.

Keywords: palliative care, pancreatic cancer, ketamine, opioid sparing

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13 A Study of Applying the Use of Breathing Training to Palliative Care Patients, Based on the Bio-Psycho-Social Model

Authors: Wenhsuan Lee, Yachi Chang, Yingyih Shih

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In clinical practices, it is common that while facing the unknown progress of their disease, palliative care patients may easily feel anxious and depressed. These types of reactions are a cause of psychosomatic diseases and may also influence treatment results. However, the purpose of palliative care is to provide relief from all kinds of pains. Therefore, how to make patients more comfortable is an issue worth studying. This study adopted the “bio-psycho-social model” proposed by Engel and applied spontaneous breathing training, in the hope of seeing patients’ psychological state changes caused by their physiological state changes, improvements in their anxious conditions, corresponding adjustments of their cognitive functions, and further enhancement of their social functions and the social support system. This study will be a one-year study. Palliative care outpatients will be recruited and assigned to the experimental group or the control group for six outpatient visits (once a month), with 80 patients in each group. The patients of both groups agreed that this study can collect their physiological quantitative data using an HRV device before the first outpatient visit. They also agreed to answer the “Beck Anxiety Inventory (BAI)”, the “Taiwanese version of the WHOQOL-BREF questionnaire” before the first outpatient visit, to fill a self-report questionnaire after each outpatient visit, and to answer the “Beck Anxiety Inventory (BAI)”, the “Taiwanese version of the WHOQOL-BREF questionnaire” after the last outpatient visit. The patients of the experimental group agreed to receive the breathing training under HRV monitoring during the first outpatient visit of this study. Before each of the following three outpatient visits, they were required to fill a self-report questionnaire regarding their breathing practices after going home. After the outpatient visits, they were taught how to practice breathing through an HRV device and asked to practice it after going home. Later, based on the results from the HRV data analyses and the pre-tests and post-tests of the “Beck Anxiety Inventory (BAI)”, the “Taiwanese version of the WHOQOL-BREF questionnaire”, the influence of the breathing training in the bio, psycho, and social aspects were evaluated. The data collected through the self-report questionnaires of the patients of both groups were used to explore the possible interfering factors among the bio, psycho, and social changes. It is expected that this study will support the “bio-psycho-social model” proposed by Engel, meaning that bio, psycho, and social supports are closely related, and that breathing training helps to transform palliative care patients’ psychological feelings of anxiety and depression, to facilitate their positive interactions with others, and to improve the quality medical care for them.

Keywords: palliative care, heart rate variability, breathing training, bio-psycho-social model

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12 The Need for Sustaining Hope during Communication of Unfavourable News in the Care of Children with Palliative Care Needs: The Experience of Mothers and Health Professionals in Jordan

Authors: Maha Atout, Pippa Hemingway, Jane Seymour

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A preliminary systematic review shows that health professionals experience a tension when communicating with the parents and family members of children with life-threatening and life-limiting conditions. On the one hand, they want to promote open and honest communication, while on the other, they are apprehensive about fostering an unrealistic sense of hope. Defining the boundaries between information that might offer reasonable hope versus that which results in false reassurance is challenging. Some healthcare providers worry that instilling a false sense of hope could motivate parents to seek continued aggressive treatment for their child, which in turn might cause the patient further unnecessary suffering. To date, there has been a lack of research in the Middle East regarding how healthcare providers do or should communicate bad news; in particular, the issue of hope in the field of paediatric palliative care has not been researched thoroughly. This study aims to explore, from the perspective of patients’ mothers, physicians, and nurses, the experience of communicating and receiving bad news in the care of children with palliative care needs. Data were collected using a collective qualitative case study approach across three paediatric units in a Jordanian hospital. Two data collection methods were employed: participant observation and semi-structured interviews. The overall number of cases was 15, with a total of 56 interviews with mothers (n=24), physicians (n=12), and nurses (n=20) completed, as well as 197 observational hours logged. The findings demonstrate that mothers wanted their doctors to provide them with hopeful information about the future progression of their child’s illness. Although some mothers asked their doctors to provide them with honest information regarding the condition of their child, they still considered a sense of hope to be essential for coping with caring for their child. According to mothers, hope was critical to treatment as it helped them to stay committed to the treatment and protected them to some extent from the extreme emotional suffering that would occur if they lost hope. The health professionals agreed with the mothers on the importance of hope, so long as it was congruent with the stage and severity of each patient’s disease. The findings of this study conclude that while parents typically insist on knowing all relevant information when their child is diagnosed with a severe illness, they considered hope to be an essential part of life, and they found it very difficult to handle suffering without any glimmer of it. This study finds that using negative terms has extremely adverse effects on the parents’ emotions. Hence, although the mothers asked the doctors to be as honest as they could, they still wanted the physicians to provide them with a positive message by communicating this information in a sensitive manner including hope.

Keywords: Communication, Information, palliative care, Children, Mothers, hope, health professionals

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11 Bereavement Risk Assessment of Family Caregivers of Patients with Cancer: Relationship between Bereavement Risk and Post-Loss Psychological Distress

Authors: Tomohiro Uchida, Noriaki Satake, Toshimichi Nakaho, Akira Inoue, Hidemitsu Saito

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In this study, we assessed the bereavement risk of family caregivers of patients with cancer. In the palliative care unit of Tohoku University Hospital, we conducted a family psychoeducation session to support the family caregivers of patients with cancer. A total of 50 participants (8 males and 42 females; mean age = 62.98 years, SD = 11.10) were assessed after the session for bereavement risk using the Japanese version of the Bereavement Risk Assessment Tool (BRAT-J). According to the BRAT-J scores, eight participants were considered to be having no known risk (Level 1), seventeen had minimal risk (Level 2), twenty had a low risk (Level 3), four had a moderate risk (Level 4), and one had a high risk (Level 5). Of these participants, seven participants had completed the follow-up postal survey that assessed their psychological distress (the Kessler Psychological Distress Scale: K6) to compare the bereavement risk. According to the K6 scores, three-fourth of the individuals, who were considered to be at Level 3 on the BRAT-J, scored higher than the cutoff point (>10) for the detection of depressive disorder. On the other hand, one-third of the individuals, who were considered to be at Level 2 on the BRAT-J, scored higher than the cutoff point. Therefore, it appears that the BRAT-J can predict the likelihood of difficulties or complications in bereaved family caregivers. This research was approved by the Ethics Committee of Tohoku University Graduate School of Medicine and Tohoku University Hospital.

Keywords: palliative care, family caregivers, bereavement risk, BRAT, post-loss psychological distress

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10 The Perspective of Health Care Professionals of Pediatric Palliative Care

Authors: Eunkyo Kang, Jihye Lee, Jiyeon Choo

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Background: Pediatric palliative care has been increasing, and the number of studies has focused on the age at which pediatric patient can be notified their terminal illness, pediatric advanced care planning (ACP) and palliative care. However, there is a lack of research on health professionals’ perception. Aim: We aimed to investigate the perceptions of healthcare professionals about appropriate age disclosing terminal illness, awareness of ACP, and the relationship between ACP knowledge and the preference for palliative care for children. Methods: We administered nationwide questionnaires to 928 physicians from the 12 hospitals and the Korean Medical Association and 1,241 individuals of the general Korean population. We asked about the age at which the pediatric patients could be notified of their terminal illness, by 4 groups; 4 years old or older, 12 years old or older, 15 years old or older, or not. In addition, we surveyed the questionnaires about the knowledge of ACP of the medical staff, the preference of the pediatric hospice palliative care, aggressive treatment, and life-sustaining treatment preference. Results: In the appropriate age disclosing terminal illness, there were more respondents in the physicians than in the general population who thought that it was possible even at a younger age. Palliative care preference in pediatric patients who were expected to expire within months was higher when health care professionals had knowledge of ACPs compared to those without knowledge. The same results were obtained when deaths were expected within weeks or days. The age of the terminal status notification, the health care professionals who thought to be available at a lower age have a higher preference for palliative care and has less preference for aggressive treatment and life-sustaining treatment. Conclusion: Despite the importance of pediatric palliative care, our study confirmed that there is a difference in the preference of the health care professionals for pediatric palliative care according to the ACP knowledge of the medical staff or the appropriate age disclosing terminal illness. Future research should focus on strategies for inducing changes in perceptions of health care professionals and identifying other obstacles for the pediatric palliative care.

Keywords: palliative care, Pediatric Palliative Care, disclosing terminal illness, advanced care planning

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9 Euthanasia in Dementia Cases: An Interview Study of Dutch Physicians' Experiences

Authors: J. E. Appel, R. N. Bouwmeester, L. Crombach, K. Georgieva, N. O’Shea, T. I. van Rijssel, L. Wingens

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The Netherlands has a unique and progressive euthanasia law. Even people with advanced neurodegenerative diseases, like dementia, can request euthanasia when an Advanced Euthanasia Directive (AED) was written. Although the law sets some guidelines, in practice many complexities occur. Especially doctors experience difficult situations, as they have to decide whether euthanasia is justified. Research suggests that this leads to an emotional burden for them, due to feelings of isolation, fear of prosecution, as well as pressures from patient, family, or society. Existing literature, however, failed to address problems arising in dementia cases in particular, as well as possible sources of support. In order to investigate these issues, semi-structured in-depth interviews with 20 Dutch general practitioners and elderly care physicians will be conducted. Results are expected to be obtained by the end of December 2017.

Keywords: palliative care, Dementia, Euthanasia, general practitioners, elderly care physicians

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8 Barriers for Appropriate Palliative Symptom Management: A Qualitative Research in Kazakhstan, a Medium-Income Transitional-Economy Country

Authors: Ibragim Issabekov, Byron Crape, Lyazzat Toleubekova

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Background: Palliative care substantially improves the quality of life of terminally-ill patients. Symptom control is one of the keystones in the management of patients in palliative care settings, lowering distress as well as improving the quality of life of patients with end-stage diseases. The most common symptoms causing significant distress for patients are pain, nausea and vomiting, increased respiratory secretions and mental health issues like depression. Aims are: 1. to identify best practices in symptom management in palliative patients in accordance with internationally approved guidelines and compare aforementioned with actual practices in Kazakhstan; to evaluate the criteria for assessing symptoms in terminally-ill patients, 2. to review the availability and utilization of pharmaceutical agents for pain control, management of excessive respiratory secretions, nausea, and vomiting, and delirium and 3. to develop recommendations for the systematic approach to end-of-life symptom management in Kazakhstan. Methods: The use of qualitative research methods together with systematic literature review have been employed to provide a rigorous research process to evaluate current approaches for symptom management of palliative patients in Kazakhstan. Qualitative methods include in-depth semi-structured interviews of the healthcare professionals involved in palliative care provision. Results: Obstacles were found in appropriate provision of palliative care. Inadequate education and training to manage severe symptoms, poorly defined laws and regulations for palliative care provision, and a lack of algorithms and guidelines for care were major barriers in the effective provision of palliative care. Conclusion: Assessment of palliative care in this medium-income transitional-economy country is one of the first steps in the initiation of integration of palliative care into the existing health system. Achieving this requires identifying obstacles and resolving these issues.

Keywords: palliative care, End-of-life care, middle income country, symptom control

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7 Utilization of Acupuncture in Palliative Care for Cancer Patients

Authors: Jui-Hung Hung, Ching-Liang Hsieh, Yi-Wen Lin

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Modern medicine highly emphasizes the importance of palliative treatment. The inception of palliative and hospice care recently developed into the concept of caring for the patients’ and families’ physical, psychological and spiritual problems. There are several benefits related to palliative care such as reducing medical expenses, decreasing patients’ suffer, and supporting patient go through the finale of the life. Nowadays, in Taiwan, over 60-70% terminal cancer patients were covered in hospice care, and the coverage rate increased annually. Acupuncture is a well-known therapy used more than thousand years to relieve symptoms of cancer patient. Many reports showed that, even in the Western society, many reputable medical centers can provide Acupuncture therapy for patients. Accordingly, using Acupuncture for cancer patient care is a global trend. There are increased evidences indicate that Acupuncture can relieve the symptoms for cancer patients including pain, reduce the dosage of anesthetic, improve the cancer-related fatigue, relieve the chemotherapy-related nausea and vomiting, ease anxiety mood and even improving the quality of life. Furthermore, some trials show that Acupuncture may help relieve xerostomia, hot flash, sleep disorders, and some GI discomfort and so on. Acupuncture therapy has many advantages for clinical use with effective, low-cost, minimal side effect, suitable for cancer patients and even for elderly population. Especially in nowadays, there are more diversified challenges in modern medicine, all of them will make the higher medical budget. We suggest that Acupuncture will be one of methods for palliative care for cancer patients.

Keywords: Cancer, Integrative Medicine, palliative care, Acupuncture

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6 Caring for a Spinal Cord Injury Patient with Diabetic Nephropathy Receiving Hospice Palliative Care

Authors: Li-Ting Kung, Hui-Zhu Chen, Hsin-Tzu Lee, Wan-Yin Hsu

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Patients with spinal cord injury combined with diabetic nephropathy may under a lot of painful conditions due to complications related to the illness itself or treatments, such as recurrent pressure ulcers, autonomic and peripheral neuropathy, as well as dialysis, for long term. This case report illustrated the nursing experience of transferring a spine cord injure patient who received hemodialysis due to adverse lifestyle-induced diabetic nephropathy to the hospice ward. Nursing care was provided in this patient from July 25th to August 30th, 2015. The tool of 'Gordon’s 11-item functional health assessment' and clinical observation, interviews as well as physical examination were used as data collections. Based on results of health assessment as above, the patient’s health problems were identified as the following: impaired skin integrity, chronic pain, and hopeless. Besides to relieve the symptom of pain due to disease or the treatment of hemodialysis and provide wound care, the first author also played a role to assist the patient to achieve his goal of receiving the hospice palliative care. Finally, with much effort of nurses to communicate with medical teams between the surgical and hospice wards, the patient was transferred to the hospice ward to have fulfilled his last wish of having a good death. We hope this nursing experience can be applied to other similar cases in the future.

Keywords: palliative care, Spinal Cord Injury, Diabetic Nephropathy, hospice care

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5 Collaboration in Palliative Care Networks in Urban and Rural Regions of Switzerland

Authors: R. Schweighoffer, N. Nagy, E. Reeves, B. Liebig

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Due to aging populations, the need for seamless palliative care provision is of central interest for western societies. An essential aspect of palliative care delivery is the quality of collaboration amongst palliative care providers. Therefore, the current research is based on Bainbridge’s conceptual framework, which provides an outline for the evaluation of palliative care provision. This study is the first one to investigate the predictive validity of spatial distribution on the quantity of interaction amongst various palliative care providers. Furthermore, based on the familiarity principle, we examine whether the extent of collaboration influences the perceived quality of collaboration among palliative care providers in urban versus rural areas of Switzerland. Based on a population-representative survey of Swiss palliative care providers, the results of the current study show that professionals in densely populated areas report higher absolute numbers of interactions and are more satisfied with their collaborative practice. This indicates that palliative care providers who work in urban areas are better embedded into networks than their counterparts in more rural areas. The findings are especially important, considering that efficient collaboration is a prerequisite to achieve satisfactory patient outcomes. Conclusively, measures should be taken to foster collaboration in weakly interconnected palliative care networks.

Keywords: palliative care, Collaboration, Switzerland, healthcare networks

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4 Ozone Therapy and Pulsed Electromagnetic Fields Interplay in Controlling Tumor Growth, Symptom and Pain Management: A Case Report

Authors: J. F. Pollo Gaspary, F. Peron Gaspary, E. M. Simão, R. Concatto Beltrame, G. Orengo de Oliveira, M. S. Ristow Ferreira, F. Sartori Thies, I. F. Minello, F. dos Santos de Oliveira

Abstract:

Background: The immune system has evolved several mechanisms to protect the host against cancer, and it has now been suggested that the expansion of its functions may prevent tumor growth and control the symptoms of cancer patients. Two techniques, ozone therapy and pulsed electromagnetic fields (PEMF), are independently associated with an increase in the immune system functions and they maybe help palliative care of patients in these conditions. Case Report: A patient with rectal adenocarcinoma with metastases decides to interrupt the clinical chemotherapy protocol due to refractoriness and side effects. As a palliative care alternative treatment it is suggested to the patient the use of ozone therapy associated with PEMF techniques. Results: The patient reports an improvement in well-being, in autonomy and in pain control. Imaging tests confirm a pause in tumor growth despite more than 60 days without using classic treatment. These results associated with palliative care alternative treatment stimulate the return to the chemotherapy protocol. Discussion: This case illustrates that these two techniques can contribute to the control of tumor growth and refractory symptoms, such as pain, probably by enhancing the immune system. Conclusions: The potential use of the combination of these two therapies, ozone therapy and PEMF therapy, can contribute to palliation of cancer patients, alone or in combination with pharmacological therapies. The conduct of future investigations on this paradigm can elucidate how much these techniques contribute to the survival and well-being of these patients.

Keywords: Cancer, palliative care, Complementary and Alternative Medicine, ozone therapy, PEMF therapy

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3 Palliative Care: Optimizing the Quality of Life through Strengthening the Legal Regime of Bangladesh

Authors: Sonia Mannan, M. Jobair Alam

Abstract:

The concept of palliative care in Bangladesh largely remained limited to the sympathetic caring of patients with a life-limiting illness. Quality of Life (QoL) issues are rarely practiced in Bangladesh. Furthermore, palliative medicine, in the perspective of holistic palliative care service, does not have its proper recognition in Bangladesh. Apart from those socio-medical aspects, palliative care patients face legal issues that impact their quality of life, including access to health services and social benefits and dealing with other life-transactions of the patients and their families (such as disposing of property; planning for children). This paper is an attempt to articulate these legal dimensions of the right to palliative care in the context of Bangladesh. The major focus of this paper will be founded on the doctrinal analysis of the constitutional provisions and other relevant legislation on the right to health and their judicial interpretation, which is argued to offer a meaningful space for the right to palliative care. This paper will also investigate the gaps in the said legal framework to better secure such care. In conclusion, a few recommendations are made so that the palliative care practices in Bangladesh are better aligned with international standards, and it can respond more humanely to the patients who need palliative care.

Keywords: palliative care, Constitution, Quality of Life, Bangladesh, legal regime

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2 Clinicians' and Nurses' Documentation Practices in Palliative and Hospice Care: A Mixed Methods Study Providing Evidence for Quality Improvement at Mobile Hospice Mbarara, Uganda

Authors: G. Natuhwera, M. Rabwoni, P. Ellis, A. Merriman

Abstract:

Aims: Health workers are likely to document patients’ care inaccurately, especially when using new and revised case tools, and this could negatively impact patient care. This study set out to; (1) assess nurses’ and clinicians’ documentation practices when using a new patients’ continuation case sheet (PCCS) and (2) explore nurses’ and clinicians’ experiences regarding documentation of patients’ information in the new PCCS. The purpose of introducing the PCCS was to improve continuity of care for patients attending clinics at which they were unlikely to see the same clinician or nurse consistently. Methods: This was a mixed methods study. The cross-sectional inquiry retrospectively reviewed 100 case notes of active patients on hospice and palliative care program. Data was collected using a structured questionnaire with constructs formulated from the new PCCS under study. The qualitative element was face-to-face audio-recorded, open-ended interviews with a purposive sample of one palliative care clinician, and four palliative care nurse specialists. Thematic analysis was used. Results: Missing patients’ biogeographic information was prevalent at 5-10%. Spiritual and psychosocial issues were not documented in 42.6%, and vital signs in 49.2%. Poorest documentation practices were observed in past medical history part of the PCCS at 40-63%. Four themes emerged from interviews with clinicians and nurses-; (1) what remains unclear and challenges, (2) comparing the past with the present, (3) experiential thoughts, and (4) transition and adapting to change. Conclusions: The PCCS seems to be a comprehensive and simple tool to be used to document patients’ information at subsequent visits. The comprehensiveness and utility of the PCCS does paper to be limited by the failure to train staff in its use prior to introducing. The authors find the PCCS comprehensive and suitable to capture patients’ information and recommend it can be adopted and used in other palliative and hospice care settings, if suitable introductory training accompanies its introduction. Otherwise, the reliability and validity of patients’ information collected by this PCCS can be significantly reduced if some sections therein are unclear to the clinicians/nurses. The study identified clinicians- and nurses-related pitfalls in documentation of patients’ care. Clinicians and nurses need to prioritize accurate and complete documentation of patient care in the PCCS for quality care provision. This study should be extended to other sites using similar tools to ensure representative and generalizable findings.

Keywords: palliative care, documentation, Quality improvement, information case sheet

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1 Breaking the Barriers: Exploring the Barriers to LGBTQ+ Accessing Palliative Care and the Hospice

Authors: Emma Worley, Mhairi De Sainte Croix, Savneet Lochab, Christopher Roberts, Mark Stroud, Mo Salehan, Kevin Jones

Abstract:

Awareness about the importance of teaching about diversity at medical school is growing. In the realm of diversity includes discussion around the LGBTQ+ community. At Bristol, diversity is taught in first or second year. However, echoing and expanding that teaching throughout the curriculum is needed. This feeds into the spiral curriculum but also highlights the relevance of the topic. It is well known that some people in the LGBTQ+ community struggle the access healthcare due to previous negative experiences. In 2019, 1 in 7 LGBTQ+ people avoided seeking medical care due to fears about discrimination. If people have fears about seeking medical help, then seeking help from Palliative care when they are at their most vulnerable situation can be even harder. To improve positive healthcare situations for people who identify as LGBTQ+ needs to start with talking. Along with some of our CTAs (clinical teaching assistants) we created a teaching session to explore the barriers faced by LGBTQ+ and incorporated communication stations into this. Our plan is to run this session as a three-hour session first discussing different topics: ethnical diversity, ‘coming out’, LGBTQ+ in the older generation, transgender. This will be followed by looking more closely at the barriers to accessing the hospice. The next part of the session will encompass two or three communication scenarios hopefully prompting further discussion and reflection on ways to improve our communication. The first scenario outline is a gay man/lesbian woman with lung cancer discussing options around the hospice. The second scenario is a transgender person with female genitalia who now has cervical cancer (as was not followed up on pap smears after the change of name). The third scenario is a HIV homosexual male patient who has been admitted with dementia. He has a partner but is not married. His next of kin is down as his parents but his parents do not know about his sexuality and HIV status. It allows discussion around confidentiality as well as broaching the meaning of ‘family’ in the LGBTQ+ community. We have chosen to pitch this teaching session to Bristol Year 4 students. They will be currently doing their 6-week Palliative care block, which fits in well. Each session will have four students attend. We have been lucky enough to have two CTAs (clinical teaching assistants) who identify as LGBTQ+ offer their experiences and help. They have been able to help us with the preparation and delivery of the session. Given anecdotal evidence and stories helps to highlight the importance and relevance of this session. The aim is to increase awareness of some factors that may contribute to people who identify as LGBTQ+ having a negative healthcare experience. By starting to talk about it allows awareness and only then will we be able to start to change and improve. Our aim, if the sessions run well, is to expand these sessions to different academy hospitals. Therefore, all Bristol 4th year students would have the opportunity to take part in the teaching session. We would like to expand our portfolio of case scenarios, to address so tricker topics such as a transgender person with dementia who reverts back to a different gender. We would also like to recruit a diverse range of actors, ideally people who identify as the patient in the scenario does. For example, a transgender person acts the transgender scenario. This would give authenticity and enhance the student’s learning experience.

Keywords: palliative care, Communication Skills, LGBTQ+, healthcare barriers

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