Palliative Medicine and Hospice Care – Open Journal
Editor- In-Chief: Sophia K. Apple Title proper: Palliative Medicine and Hospice Care – Open Journal (PMHCOJ) Subject: Bio Sciences Publisher: Openventio Publishers Dates of publication: 2015 Frequency & Medium: Half-Yearly , Online Language : English Country : India Indexed by : CROSSREF , ROAD , THE KEEPERS Title DOI of the Journal: http://doi.org/10.17140/issn.2377-8393
The Impact of Family Dynamics on Palliative Care at the End-of-Life
This commentary is the second in a series highlighting the challenges we face in providing palliative care. This case highlights the numerous, multifaceted issues that interplay in the complex web of physical and psycho-social dynamics that are always present but take on more significance towards the end of life. The rationale for documenting our experience, undoubtedly a shared experience among palliative care teams, is twofold: (1) as a form of narrative reflective debriefing and (2) to give context to the distress that we see manifested by families as a loved one enters the end-of-life (EoL) period.
Neil A. Nijhawan, BSc (Hons), PhD, MBBS, MRCP, FRCP
Reflection on Complexity at the End-of-Life—More Nuanced than Simply Treating Patients the Way We Would Want to be Treated
I relocated to the United Arab Emirates (UAE) just over three years ago, to start a new palliative care service in Abu Dhabi. Palliative care remains a relatively unknown medical specialty here in the UAE both among clinicians and the public. As a new team, we were recently reflecting on some of the more challenging situ ations that we faced since setting up the service. This case rein forces my belief that palliative care is complex, individualized, ho listic care and ‘looks different’ for every patient and their family.
cardiopulmonary resuscitation (CPR) prior
Cultural Comparisons of Aging Policies and Care for Older Adults in Japan and the United States: A Review
This review article critically examines the health status, healthcare policies, and specialized medical care for older adults in Japan and the United States, with a focus on the cultural underpinnings that shape these differences. The article synthesizes existing literature to provide insights into the challenges and potential solutions for providing care to aging populations in both coun tries.
Access to Palliative Care in Low- and Middle-Income Countries during Coronavirus Disease-2019 Pandemic and Post-Pandemic Era: A Kenyan Experience
The coronavirus disease-2019 (COVID-19) pandemic emphasized the role of palliative care as an essential service to patients and families affected by life-threatening illnesses. Challenges encountered included: patients were not able to access services due to lockdown or restricted movement, limited or no home-based care and visits, opioid analgesic supplies were depleted, high frequency of uncontrolled symptoms and psychosocial distress, limited patient-caregiver-clinician communication, re duced family interactions due to fear of infecting the already sick family members, few training opportunities for health care workers (HCW) and HCW distress and burn-out. To address these challenges, the following strategies were employed; utiliza tion of digital technologies to match resources, innovation in provision of PC including adapting etiquette for patient care using digital technology, advocating policy changes, education, use of technology such as video calls among family members support for HCW.
One Rain Does Not Make a Crop–Continuum of Care to Improve End-of-Life Care for Bariatric Patients
Care of persons weighing over 500 lbs. poses additional challenges. For at least the past 20 years, training methods, resources, and equipment have been available to meet the demands of people weighing up to 500 pounds. However, this is not the case when exploring care options for the person weighing greater than 500 pounds. Hospital beds, magnetic resonance imaging (MRI) and computerized tomography (CT) scan beds, etc. are not usually designed to bear the weight of over 500 lbs. persons. According to Hale and others (2020), in 2017-2018 the age-adjusted prevalence of obesity in adults was 42.4%, and there were no significant differences between men and women among all adults or by age group. This case report illustrates the unique challenges and opportunities encountered by morbidly obese patients and healthcare professionals during end-of-life (EoL) care situations. It also categorically highlights the challenges, contextual discussions, and potential opportunities for healthcare delivery models to persons.
Experiences and Challenges of a New Palliative Care Service in the United Arab Emirates
Introduction ABSTRACT Palliative care as a medical subspecialty in the United Arab Emirates (UAE) is very much in its formative stage of development. There are a small number of healthcare facilities that provide a specialist palliative care service, the most recent of which is the Palliative and Supportive Care Service at Burjeel Medical City (BMC), a private hospital in Abu Dhabi. Aim This retrospective review of all the referrals to our palliative and supportive care service within the first 9-months of operation is a direct reflection of the challenges we currently face in the day-to-day delivery of palliative care in the UAE. Result Conclusion Keywords Of a total of 360 referrals received during the study period, under 50% were for local, Emirati patients with international expatri ates making up the rest. Most of the referrals received were for symptom control (including pain) and end-of-life care (EoLC), with 85% of the patients having a diagnosis of cancer. One third of the referrals received were for EoLC, with 90% of the pa tients who received EoLC on a hospital ward having a valid do not attempt resuscitation (DNAR) status in place. For the patients who received EoLC, all but one patient received EoLC in the hospital setting. Our experiences are consistent with the challenges that other colleagues in the Middle East and North Africa (MENA) region face in providing palliative care. The majority of referrals to the palliative and supportive care service were for patients with a di agnosis of cancer with only 15% reflecting a non-cancer diagnosis. Of the 150 decedents cared for during this study period, more than 75% had a valid DNAR status in effect suggesting a growing awareness and acceptance of a less medicalized EoLC period.
End-of-life care; Burjeel Medical City (BMC)
Neil A. Nijhawan, BSc(Hons), PhD, MBBS(UK)
An Update on the State of Palliative Care Development in the United Arab Emirates
The United Arab Emirates (UAE) has recently celebrated its 50th birthday since its inception as an independent sovereign federal state in 1971. Over the past 5 decades, the UAE’s health care sector has grown exponentially to include over 140 hospitals in both the public and private sectors.1 Hospitals within the UAE provide a wide variety of services and maintain high quality stan dards, with over 206 national institutions and speciality programs boasting the Joint Commission International (JCI) gold seal of approval–exceeding all other countries in the Middle East.2 The majority of medical specialties are represented, particularly in the major conurbations of Dubai and Abu Dhabi.
Using Datix Electronic Incident Reporting System to Develop a Palliative and End-of-Life Care Patient-Centered Auditing, Quality Assessment and Reporting System
The need for specialist palliative care services has never been higher as the ongoing coronavirus disease (COVID) pandemic has highlighted. Yet even in the absence of the pandemic, specialist palliative care services in hospitals, hospices and within commu nities were already stretched beyond their capacity. The current fiscal climate within which most healthcare systems operate are undergoing global economic constraints making it a necessity that healthcare systems explore new ways of working to develop ef f icient high-quality services, maximising resources whilst maintaining good clinical governance. We describe how a hospital pallia tive and end-of-life care (PEoLC) specialist team, can harness an existing electronic incident reporting system Datix, adapting it to automatically track the longitudinal performance of the patient-centred, end-of-life care (EoLC) services that they deliver, along national standards in keeping with the Care Quality Commission (CQC) and the National Institute for Health and Excellence (NICE) guidelines for end-of-life care in the UK. Such automated systems can inform the quality of PEoLC services, improve the use of time and resource within specialist palliative care teams, support the delivery of evidence-based clinical governance standards, whilst supporting benchmarking across organisations, strategy development, insight into local/regional variations, and the establishment of standardisations of care.
The Middle East Cancer Consortium: A Model for Regional Conciliation and Compassion in the Middle East
Regions in the Middle East are still experiencing political and military hostilities which negatively affect the health and health services of millions of people. Cancer is one of the major causes of high morbidity and mortality in the region. Palliative care for the cancer patient is one of the care options available for all those suffering from such a life-threatening disease. The Middle East Cancer Consortium (MECC) initiated a regional plan to implement palliative care approaches both in hospitals and the com munity. Moreover, the region lacks experienced professionals who could pave the way for establishing national palliative centers and guide primary care physicians and nurses to exercise this relatively new discipline in clinical practice. This report describes, in short, the endeavors, barriers and successes of this project, which are intended to bring medical professionals closer, thereby promoting understanding, respect and tolerance among individuals and communities in conflict.
Setting Higher Standards in Cancer Care: Experiences at the First Palliative Moroccan Care Congress Casablanca, Morocco, March 2022
Since the implementation of the first National Cancer Preven tion and Control Plan (PNPCC1) in 2010, palliative care in Mo rocco has been a strategic approach in its own right, alongside the prevention, early detection and cancer management approaches. Since then, several measures have been put in place to facilitate the deployment of the actions representing this axis, i.e. the develop ment of the palliative care network, pain management, palliative care research, as well as social and family support for palliative cancer patients.1 Palliative care units have been established in seven re gional oncology centers, four of which have mobile home teams, in addition to outpatient and inpatient activities.
palliative care strategic axis of the second National Cancer Pre vention and Control Plan
Review of Melatonin and Results of Students Survey
Purpose ABSTRACT The objective of the survey is to evaluate the knowledge and opinion of Howard University College of Pharmacy first-year pro fessional pharmacy students regarding the use of the sleep medication melatonin. Methods A survey questionnaire comprising 20 questions on melatonin was developed and response obtained from 42 students. Demo graphic data and responses were gathered and evaluated. Descriptive statistics were used to analyze the responses. Results Most of the respondents had adequate knowledge about melatonin ranging from 54.8 to 92.6%. There was no statistical differ ence when responses were analyzed based on the gender of the survey participants. To specific questions whether melatonin is associated with weight gain, can help with signs and symptoms of cancer, recommend sleep hygiene instead of melatonin, and whether melatonin is addictive, the majority (57.1%, 42.9%, 64.3% and 69.0%, respectively) provided the wrong responses. Conclusion to some of the survey questions.
Bioethics Training: Report on the Experience of a Medical Bioethics’ Scholar in a Tertiary Referral Hospital in a Low- and Middle-Income Country
Skills in biomedical ethics are limited in the African health care systems. This significantly affects the bioethics discourse in the medical practice. The main reason for the paucity in knowledge and skills in bioethics is minimal or no training at all imparted to healthcare professionals. Where there is training, it is not well-structured like other courses in the training institutions. This report summarizes the status of bioethics training and outlines the implementation, processes, outcome and future outlook of a bioeth ics teaching project for masters in medicine residents (students) in a tertiary referral hospital in Africa. This project was part of postgraduate studies in biomedical ethics by a practicing physician. It entailed teaching bioethics to first year master’s in medicine residents (students). The teachings occurred in the author’s affiliated institution monthly for six-months. The topics covered were: Keywords general introduction to bioethics, ethical issues at end-of-life (EoL), informed consent, basics of research ethics, plagiarism and doctor-pharma interaction. These topics were selected due to their relevance to the residents in their practice and because they needed to undertake research studies to graduate from the masters training program. In addition, these basic bioethics training provided the residents with the foundation to develop knowledge geared towards improving skills in analyzing diverse areas in the contemporary bioethics’ environment such as end-of-life care (EoLC), human research ethics, doctor-pharmaceutical relation ships while looking at them within the context of political, cultural, socio-economic, and environmental determinants
The Psychosocial and Economic Effects of Caring for Terminally Ill Patients: The Case of Hospice Africa Uganda
Introduction Giving care to a patient at the end-of-life can be a challenging experience. The responsibilities of caregiving may include executing complex physical and mental tasks, financial planning, patient care, decision-making, emotional support and coordination of care. This mixed-methods observational study aims to identify the psychosocial and economic effects of caregiving for terminally-ill patients by carers on the Hospice Africa Uganda Kampala program. It used both quantitative and qualitative data of caregivers caring for terminally-ill patients attending Hospice Africa Uganda Kampala. Simple random sampling was conducted to select caregivers who were invited to participate in the study. Results Results indicate that the majority of patients who were receiving palliative care (60.9%, 103) had been diagnosed with cancer. Most participants (62%, n=105) had spent less than one year caring for their patients, while (18%, n=31) were cared for between 1-5 years. Our results show that the responsibility of caregiving has significant effects on the psychosocial well-being of caretakers. In particular, it reduced the amount of time they spent attending social gatherings and caring for their children, their religious commitment (p<0.05), as well as their level of fatigue and exhaustion (p<0.05), and negatively impacted job finding activities. Conclusion Terminal caregiving has significant effects on the psychosocial well-being and incomes of caretakers, and their ability to find a job alongside caring for the patient. Based on these findings, it is therefore recommended that caregivers be given ongoing sup port to help them provide care to their own family members and patients with life limiting illnesses early in the disease trajectory.
Ethical Challenges to Respecting and Meeting Patients’ Requests: Lessons from Providing Palliative Care for Coronavirus Disease 2019 Patients
The World Health Organization (WHO) defines palliative care as: “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impec cable assessment and treatment of pain and other problems, physical, psycho social and spiritual.”1 Thus, palliative care is associated with chronic, serious illnesses. However, coronavirus disease 2019 (COVID-19) is a novel disease presenting acutely with acute symptoms but re quiring the level of care, even in an urgent manner that patients with chronic serious illnesses that are normally associated with pal liative care require. Palliative care clinicians are uniquely equipped to address the suffering of COVID-19, especially where the health system is significantly strained. This is accomplished through high-level communication and symptom management skills and a transdisciplinary approach to address physical, emotional, and existential suffering.2 It is within the ability and the ethical duty of palliative care to relieve suffering, physical pain and other symp toms.
A Community Engagement Model to Drive Advance Directive Discussion and Completion
Background Advance directives (ADs) describe individuals’ preferences for life-sustaining treatments and/or surrogate decision-makers, to help avoid unwanted, burdensome treatments at the end-of-life. However, only 36.7% of adults have completed an AD. There is growing interest in adopting a public health approach to end-of-life care, including ADs. We describe the experience of Honor ing Choices Tennessee (HCT) which developed a pilot program, Advance Directives at Work in Tennessee (AD@WorkTN), to enhance AD completion by the general public workforce. Methods The AD@WorkTN initiative targeted adults in the Tennessee workforce by engaging human resource (HR) leaders in educational presentations. Each workshop provided resources to employers to integrate ADs into the employee orientation and benefits en rollment process. Educational materials, web tools, podcasts, AD forms, and a demonstration of how to complete an AD were included. Participants were directed to the HCT website which contains the state advance directive documents and with detailed instructions, as well as the co-branded MyDirectives app (MYD), to securely upload completed ADs. In April 2021 a HCT spon sored PBS documentary on advance care planning was produced with statewide distribution. Results Over a 2-year period, 58 workshops were conducted for 260 human resources leaders representing 958 businesses. As a result, 23 businesses have included ADs as part of the employee benefit process. Additionally, a 2-year multifaceted public outreach campaign between 2019-21 has reached 2,950 employees and 958 businesses. Approximately 81,500 Tennessee viewers have seen the Public Broadcasting Service (PBS) documentary on advance care planning. There have been 2,954 visits to the HCT website and 411 visits to the co-branded MyDirectives site. Conclusion AD@WorkTN is a promising model to promote integration of ADs into the employee orientation and benefits enrollment processes. Enhanced discussion and completion of ADs among employed individuals and enhanced public discourse such as podcasts and television productions may encourage intergenerational conversations about end-of-life care and documentation in healthcare records.
Reflections of a Palliative Care Physician in the United Arab Emirates
The United Arab Emirates (UAE), along with the rest of the world, is facing a significant challenge in mitigating the spread of coronavirus disease 2019 (COVID-19) and the resulting pres sure on frontline healthcare staff. At the time of writing, the world wide total number of confirmed COVID-19 cases has exceeded 5 million with thankfully only a fraction of these (~37000) in the UAE. However, what is frightening many at this time is that so many of these patients did not survive. With access to 24-hour news and daily reports of worldwide mortality figures, not since the Second World War we have been reminded of our own mortal ity and the fragility of life in such a sustained manner.
Advance care planning (ACP) which includes a discussion of goals of care and preferences about future care improves patient-centered care at the end-of-life. However, completion of ACP remains low with an estimated 36.7% of adults having com pleted an advance directive in the United States1 and this number is lower in many other societies worldwide. Social stigma, personal difficulty accepting the finality of life, and agism all contribute to avoidance of discussions of end-of-life care. The topic of ACP is an intensely personal one, and optimally a longitudinal com munication-based conversation between individuals, families, and trusted healthcare professionals. In the absence of ACP urgent dis cussions necessitated by medical crises, while necessary, are often traumatic and may limit involvement of the affected individual and place increased burden on the surrogate decision maker.
clinical prompting at the point of patient care
Population-Based Projections of Place of Death for Northern Ireland by 2040
Background There are global challenges in relation to an increasingly older population, rising numbers of deaths and the resulting need for end-of-life care. It is imperative for Health and Social Care to examine where people die and forward plan. Aim To establish the place where people have died 2004-2018 and project future place of death care setting by 2040. Materials and Methods Population-based trend analysis of place of death for people that died in Northern Ireland (2004-2018 from Northern Ireland Statistics and Research Agency) and projections using linear modelling (2019-2040 projections by Office of National Statistics). Results Deaths are projected to increase by 45.9%, from 15,922 in 2018 (of which 36.3% will be aged 85+ years) to 23,231 deaths in 2040 (39.8% aged 85+ years). Between 2004 and 2018, proportions of home and care home (defined as nursing and residential beds) deaths increased (24.5-27% and 16.3-19.4% respectively), while the proportion of hospital deaths declined (51.9-47.6%). If cur rent trends continue, by 2040, deaths within the community (home and care home) will account for between 46.7-55.2% of all deaths. However, if care home capacity is limited at current levels (as of 2018), hospital deaths are projected to account for the largest proportion of deaths by 2040 (51.7%). Discussion Death at an increasing age has implications for end-of-life care provision. This study demonstrates an increasing need for end-of life care over the next 20-years, particularly within community settings. Projections highlight the need for comprehensive planning to ensure service provision within the community meets the needs of the population.
Palliative Embolization in Recurrent Nodal Bleeding in Nasopharyngeal Cancer: Case Report and Review of Literature
Arterial embolization is used as one of the palliative procedure in the control of bleeding. We have demonstrated this procedure to be effective in the control of the bleeding in various malignancies in our center. This is our first case report in a teenaged nasopharyngeal cancer patient who had exhausted all his treatment as he had progressive disease and recurrent bleeding episodes from the recurrent neck nodal mass. This was controlled well with arterial embolization with no significant side effects.
A Perspective on Working in Hospice and Grief
Almost every time that I share my profession with others, I am met with a myriad of facial expressions and awkward ges tures that reflect a sort of discomfort and general misunderstand ing about what I do. The only common thread in public perception seems to be that it’s hard and terribly sad. Hard in the sense that it takes a very special and different human being to stare death in the face every day and be able to cope, understand and deal with the cycle of life and to be able to stay focused and strong for other families.
The Reframing of Advance Care Planning: How PUBLISHERS Coronavirus Disease 2019 has Encouraged Us to Reflect More on our Values
Coronavirus disease 2019 (COVID-19) has contributed to some unintended, yet valuable, reframing of advance care planning (ACP). Rather than perceiving ACP as merely being about death and dying, many healthcare providers and community members now acknowledge the need to plan in advance for healthcare deci sions, especially if we are unable to communicate and consent for ourselves. Rather than perceiving ACP conversations as “difficult conversations”, many healthcare providers and community members now acknowledge them as important and essential conversations. And rather than perceiving that ACP is primarily for the elderly or seriously ill, many healthcare providers and community members now acknowledge that we are all mortal and could unexpectedly become sick or injured; therefore, ACP is of value for all.
The Dirty Business of Dying: From Charitable Endeavor to Cut-Throat Enterprise, Hospice in America is a Shameful Shadow of its Former Self
Suffering from Pain: Reflexology as an Advantageous Adjuvant to Palliative Care
Reflexology is a non-invasive, complementary therapy that is based on the theory that, by applying controlled pressure to certain reflex zones in the palm and foot, channels along the ner vous system are stimulated, thereby facilitating energy pathways that may be blocked or congested. The reflex zone is the region in zone therapy that illus trates its interconnection with all parts of the body. It is hypoth esized that there is an invisible pathway which runs along the body vertically, from the top of the head down to the tips of the fingers and toes, while each zone represents a specific area of the body.1,2 A recent study in India examined the effectiveness of foot massage on the reduction of pain among cancer patients undergoing pallia tive care. The findings revealed a highly significant improvement in the degree of their pain as compared with that of control patients.
Outpatient–Focused Advance Care Planning: Telehealth Consultation for Geriatric Primary Care Patients
Introduction Documentation of advance care planning (ACP) in the electronic health record (EHR) is a quality measure promoted by both the Centers for Medicare and Medicaid Services (CMS) and the Department of Veterans Affairs (VA). There is no best practice model for promotion of ACP in primary care. Clinic prompts reminders from staff, and provision of forms and handouts modestly increase ACP completion. Targeted advance care planning and goals of care discussions for high-risk high-need older patients may help promote ACP in primary care. Methods High-risk, high-need geriatric patients were identified by the clinical assessment of need (CAN) risk calculator for a telehealth intervention by an advanced practice nurse trained in palliative care and embedded in the geriatric patient-aligned care team (Geri PACT) and provided telehealth outreach for ACP and goals of care discussions. Outcomes At baseline the Geri-PACT panel had a 54% prevalence of ACP in the EHR. Completion of a life-sustaining treatment note (LST) increased from 39% to 74% following the telehealth intervention producing a total of 89% ACP documents in the EHR. Additionally, 9% of patients received goals of care discussions and a need for additional home and community-based services was identified for 12% of patients contacted. Outreach to three practices in an established physician referral and patient visit network which included 10 providers indicated that primary care providers desired to approach their own patients for ACP. These providers were educated and provided tools and information about CMS and VA ACP quality improvement directives. Conclusion A focused telehealth intervention performed by a nurse trained in palliative care and embedded in a geriatric patient-centered medical home was able to significantly increase ACP documentation in the EHR for elderly patients in the practice. Primary care providers place core importance on the value of the patient-clinician relationship and prefer to approach their own patients rather than rely on consultation for ACP. Education for primary care providers and provision of resources to perform ACP and goals of care discussions for their patients may be a worthwhile strategy to improve ACP completion and documentation in the EHR
Impact of the Use of Non-Pharmacological Care Tools in Building the Perception of Dignity in Ailing People at the End-of-Life
Objective This paper examines the link between non-pharmacological care tools carried out by volunteers in a hospice and the development of the perception of dignity in people with end-of-life terminal illnesses. Materials and Methods We interviewed volunteers from a hospice institution in Argentina, who carried out non-pharmacological care activities aimed at people at the end-of-life. The results of these interviews were analyzed with the Atlas Ti software, using the grounded theory as a form of qualitative codification. Results From the codification of the interviews, we obtained the following analysis categories: 1. Caring after the caregivers (mentioned 14 times), 2. Caretaking into account the temporal needs of others (mentioned 7 times), 3. Active listening (mentioned 11 times), Discussion Conclusion Keywords 4. Environmental aesthetic factors (mentioned 18 times) and 5. Enhancement of autonomy and selfhood (mentioned 22 times). We examined ways in which volunteers associated with the care of people with end-of-life terminal illnesses understand their work from the explanation of the non-pharmacological care activities developed within the institution, as well as the link that these have with the different dimensions of the human sense. The non-pharmacological care tools, as they alleviate existential/spiritual suffering, impact positively in the possibility of a terminal person’s capacity to perceive herself/himself as worthy.
Risk Assessment-Focused Interdisciplinary Outpatient Palliative Care Consultation for Elderly Veterans
Context The Centers for medicare and medicaid services (CMS) and the Veterans Administration quality improvement objectives encour age completion of advance directives and palliative care consultation to enhance patient-centered care and to promote patient autonomy. The prevalence of advance care planning documents in the electronic health record (EHR) and outpatient palliative care consultation is low and strategies to improve outpatient advance care planning are needed.The aim of this feasibility project was to risk stratify the older Tennessee Valley Healthcare System (TVHS) population, utilizing operations data, to target primary palliative care consultation and completion of advance care planning documents. Methods We compared immediate outpatient palliative care consultation outcomes in two populations: Group 1: high-risk patients identi fied using a clinical risk calculator, the clinical assessment of need (CAN) compared to Group 2: consecutive patients presenting to a geriatric clinic. Results The patient population identified systematically by high-risk CAN score for advance care planning (Group 1), N=52, increased palliative care consultation prevalence to 35%. The prevalence of advance care planning documents in the EHR remained 30% for this population. High-risk patients were more often referred for community-based services (29% versus 12%) and received more hospice referrals (8% versus 4%) compared to a sample of consecutive patients presenting to a geriatric clinic (Group 2), N=26. Conclusion A systematic approach to identifying high-risk patients appears to target a population with more needs compared to a sample of consecutive elderly outpatients presenting in the outpatient department. A clinically derived risk calculator can help identify high-risk patients appropriate for focused care services, such as geriatric specialty care, home and community based services, and advance care planning.
Music Therapy for Seniors at End-of-Life: Literature Review and a Preliminary Randomized Feasibility Study
Background Music therapy (MT) is part of the care plan in many end-of-life (EOL) settings, though several authors remain cautious about its effectiveness to improve EOL symptoms and patient well-being. Objective Our primary goal was to design and test the feasibility of a clinical trial protocol that would address the main critiques of MT trials previously reported in the literature. Methods We conducted a literature review guided by the questions: (1) What is the set of indicators and tools that can be used to measure effectiveness of MT for seniors in palliative care and EOL settings? (2) What are the characteristics of a well-designed clinical trial protocol that can measure effectiveness of MT in palliative care and EOL settings and can be used for a future large scale study? Based on best practices from the review, we developed a clinical trial protocol and tested its feasibility. Results Ten participants were accrued. Approximately 25% of eligible participants chose to participate. The consent rate was 55% with 70% of participants completing all MT sessions. All participants completed more than 60% of questionnaires. Conclusion Although our protocol could not be considered feasible based on the parameters we originally set, we argue that our study provides enough data to make adjustments to our original trial protocol, which could lead to the collection of reliable evidence related to the effectiveness of MT for seniors at EOL. We recommend future studies to use block randomization and allocation concealment, focus on one primary outcome and conduct intention-to-treat analysis.
Managing Cancer Cachexia: Multi-Disciplinary Healthcare Perspectives
Background Cachexia is a syndrome which is a common feature in more than 80% of patients with advanced cancer and globally accounts for over two million deaths per annum. At present there are no standard treatment guidelines for cancer cachexia management. Previ ous research conducted with the United Kingdom and Australia has highlighted different understanding and treatment practices of health care professionals in cachexia management, however, no study has elucidated the understanding and current practices of health care professionals in the United States. Aim The aim of this research was to explore the understanding and current practices of health care professionals in the United States when providing care to an individual with advanced cancer who has cachexia. Methods This is a qualitative study underpinned by symbolic interactionism. Face-to-face semi-structured interviews were conducted (n=17) with multi-disciplinary oncology staff and thematically analysed. Health care professionals were recruited from one large health care facility in the United States, until data saturation was reached. NVivo was used for data management. Criteria for upholding rigor (credibility, dependability, confirmability, transferability) were adhered to within this qualitative study. Full ethical approval was obtained prior to data collection commencing. Results Analysis determined four main themes related to (1) recognizingthe signs and symptoms of cachexia; (2) the multidimensional impact of cachexia on both patients and families; (3) complexities when treating cachexia; and (4) future direction of care delivery for patients with advanced cancer who have cachexia. Conclusion Participants within this study recognized the multi-factorial pathophysiology of cachexia and its holistic impact which spanned biological, psychological and social domains. Additionally, they recognized the impact of cachexia on not only patients but also their family carers. In particular the feelings of helplessness family carers experience in trying to stop the progressive and involun tary weight loss associated with cachexia. Further research is required to examine how to best support the needs of patients with advanced cancer who have cachexia and their family carers and equip staff to optimize delivery of this.
An Avant-Garde National Home Hospice Service, Israel
As palliative care services across the globe struggle with creating a model of service that is financially viable and not dependent on donation-based funds Sabar Health has created a national based hospice and home care unit that serves all sectors of the popula tions in all geographic areas of Israel. This model is financially stable and replicable in other parts of the world. The business, service and medical model created by Sabar Health can serve as a blueprint for palliative care services worldwide. This article will review the process of creating Sabar Health and discuss how each of the challenges was overcome.
Aging Inmates: Issues Surrounding Health Care, End-of-Life and Dying in Prison
Much like the US population in general, the prison population is aging rapidly raising concerns about health care, end-of life planning, and dying in prison. The impact of aging is amplified within the prison system. Typically, the health status of inmates in their 50’s is physiologically similar to community-dwelling indi viduals in their 70’s, making 55 old by prison standards.1 The 55+ age group is the fastest growing segment of the prison popula tion2 increasing by 18.1% between 2000 and 2010 compared to a 17% increase in the overall prison population.3 It is estimated that within the next ten years one in 5, or 20%, of inmates will be old.