Biography:

Cynthia Vejar has Ph.D. in Counselor Education from Virginia Tech, and has professional counseling experience in various settings, including Hospice. Dr. Vejar has worked in academia for over ten years, and is currently the Assistant Coordinator of the Counseling Program at McDaniel College.

Abstract:

Statement of the Problem: In a society that deeply denies death, dying, and bereavement, life becomes intolerable when people are confronted with their own mortalities, or the mortalities of their loved ones. While this is true at any developmental stage of life, it is particularly palpable when children are chronically ill because of the faulty belief that death afflicts people exclusively during their elder years. This leaves chronically ill children, as well as their parents, families, and communities poorly equipped to handle the emotional, social, and pragmatic implications of their circumstances. The purpose of this study is to encourage people to recognize that death, dying and bereavement are inevitable transitions, which will assist them when they and their loved ones arrive at the end of their lives. Additionally, it will enable participants to extend themselves toward acquaintances, colleagues, and members in the community who care for chronically ill children, since this population runs the risk of feeling isolated and shunned.

Methodology & Theoretical Orientation: A qualitative study was conducted in which108 individuals in the child life community who practice throughout the US were surveyed in order to glean insight about their experiences in working with chronically ill children and their families.

Findings: The data found that the following themes emerged: Denial of death in general, as well as how denial manifests via language and support systems, the implications of death (e.g., family dynamics, lessons and perspectives), as well as strategies families utilize to move forward and initiate closure.

Conclusion & Significance: For purposes of this conference, the presenters will concentrate on denial and moving forward – and as part of the latter, two exercise that promote legacy building and the incorporation of metaphors will be broached. The significance of this will to initiate meaningful internal and external conversations about death, dying, and bereavement.

Biography:

Yanxia Lin is doing her PhD study of exploring and understanding the practice of transferring dying patient’s home from critical care units. She had worked as a nurse in a hospital of China for seven years, of which two years were in intensive care unit. The experiences of caring for dying patients and witnessing their families making the challenging decisions of taking the patients home motivated her to conduct the research. A literature review derived from this study is currently under revision for an international nursing journal. Yanxia carried out several studies in clinical context of China and had published eight papers before her PhD study. Beyond research, she also has experience of teaching in the School of Medicine at Xiamen University, and training hospital nurses in regard with clinical nursing as well as conducting research.

Abstract:

Statement of the Problem: Evidence suggests many people prefer to die at home rather than in hospitals. However, an integrative literature review showed it is rare to transfer patients home to die from critical care units in the West but anecdotal evidence suggests it is more common in mainland China. Yet no published research was found about families’ experiences of this event and the practice of transfer in mainland China. Methodology & Theoretical Orientation: A qualitative study was carried out which comprised a 12-month retrospective audit and narrative interviews with family members of patients who were transferred home to die. In China, a general intensive care unit in a southeast tertiary hospital was selected to conduct the audit and recruit family members. First the audit reviewed number and characteristics of patients who were transferred home to die between 1st September 2015 and 31st August 2016. Second, narratives of families’ transfer experiences were collected through narrative interviews. Findings: The audit identified that of 187 dying patients, nearly half (49%) of them were transferred home to die. Thirteen participants contributed to in-depth narratives about ten patient transfers. Their relationship to the patient were son (n=6), daughter (n=2), grandson (n=2), spouse (n=1), cousin (n=1) and daughter-in-law (n=1). Narrative analysis has revealed four themes (See Figure 1) of family, custom, unsupported decision-making and unmet information needs. The decision of transferring home, as a customary requirement was made mainly by families with little support and information from healthcare staff. Conclusion & Significance: It is usual practice to transfer dying patients home from critical care in China. However, the decision-making was not always an easy and smooth event for families. Policies to raise awareness of healthcare professionals to support families’ decision-making around transfer and guidance for this clinical practice should be established in China.

Biography:

Esther Nafula Wekesa is a registered Medical practitioner in Kenya working with M.P Shah Hospital, Nairobi. Her passion for palliative care started in 2011 when she was a fourth year undergraduate medical student at the University of Nairobi. She attended a one week induction course organized by the Nairobi Hospice and her interested sparked. She volunteered for three months at the Coast Hospice and was truly amazed by the difference palliative care brought to patients’ and families lives. In 2014 while undertaking her internship period, she joined the Diploma for Higher Education in Palliative Care coordinated by the Oxford Brookes University and Nairobi Hospice. She also started volunteering at the Kakamega Hospice and later on at the Nairobi Hospice. Working with palliative care patients has been truly fulfilling. She always aims to be honest, to communicate effectively and to help patients have quality of life despite their illnesses. She currently pursues a Master of Science in Palliative Care at the Oxford Brookes University since January 2016. Her goal is to join the small world of palliative care specialists in her country in order to advocate for integration into the mainstay healthcare. She believes that she can help in creating awareness and availability of the much needed palliative care in Kenya.

Abstract:

Statement of the Problem: Palliative care involves understanding individual and cultural preferences of patients. Patient autonomy is paramount and this involves making decisions concerning treatment, place of care, as well as, end of life care. Evidence suggests that advance care planning improves communication between patients, families and health care providers, which reduces anxiety and improves quality of life. Access to healthcare, as well as, palliative care is limited in low income economy countries and there is limited knowledge on advance care planning. Discussions of prognosis and advance directives are rare leading to inappropriate aggressive treatment at the end of life. Comparison of studies done in high income and low income societies is my focus as I aim to answer the research question: How do patients with life limiting illnesses in low income economies perceive advance care directives at the end of life compared to those in high income economies?

Methodology: Referenced papers were identified by searches of PUBMED and MEDLINE limited to English language using key words: Advance care planning, advance directives, end of life care and low income economies. Only papers published between 1st January 1996 and 31st December 2016 were included. Of the 10 identified papers 3 were selected as the discussed studies on patients’ attitudes towards advance care planning at the end of life phase.

Results: The 3 selected papers discussed in depth qualitative studies were done in Africa, as well as, in the developed world. In the South African study it was evident that participants thought advance care planning was relevant in their set up. Health care preferences however depended on available resources. In the other two studies approximately 80% of patients thought advance care planning was very relevant and needed to be discussed with their physicians.

Conclusion: Advance care planning is important to all patients with life limiting illnesses. Many patients are willing to discuss with their doctors on issues of prognosis and advance directives. In high income economy countries, advance care planning is more accessible as compared to low income economy countries. In both regions however, these discussions are influenced by culture and availability of resources.

Biography:

Yee Song Lee is a senior resident of the preventive medicine residency under the National University Health System Singapore. He has a medical degree from the University of Nottingham and a MPH degree from the National University of Singapore. His professional interest is in health policy and healthcare management with the goal of population health improvement. He has extensive experience of working in both the healthcare sectors in United Kingdom and Singapore. His works in Singapore transcends different aspects of healthcare from policymaking at national level to managing community health organization. He is also involved in the integration of health and social care sectors at the East and North of Singapore with the aim of delivering value-based care to patients living in institutions and community.

Abstract:

Statement of the Problem: Hospice care can be delivered in different settings but many patients choose to receive it at home because of familiar surroundings. Despite their preferences, not every home hospice patient manages to die at home.

Objective: The objective of this study is to examine the independent factors associated with home hospice patient dying at home.

Methodology: Retrospective analysis of Hospice Care Association (HCA)’s database. HCA is the largest home hospice provider in Singapore. The study included all patients who were admitted into home hospice service from 1st Jan 2004 to 31st Dec 2013. Cox Proportional Hazards modeling with time as constant was used to study the relationship between independent variables and home death.

Result: 19,721 patients were included in the study. Females (Adjusted Risk Ratio, ARR 1.09, 95% CI 1.04–1.15), older patients (ARR 1.01, 95% CI 1.00 - 1.01), shorter duration of home hospice stay (ARR 0.88, 95% CI 0.82–0.94), fewer episodes of hospitalization (ARR 0.81, 95% CI 0.75– 0.86), living with caregivers (ARR 1.54, 95% CI 1.05–2.26), doctor (ARR 1.05, 95% CI 1.01–1.08) and nurse (ARR 1.06, 95% CI 1.04–1.08) visits were positive predictors of dying-at-home. Diagnosis of cancer (ARR 0.93, 95% CI 0.86–1.00) was a negative predictor of dying-at-home.

Conclusion and Significance: Female, older age, living with a caregiver, non-cancer diagnosis, more doctor and nurse visits, shorter duration of home hospice stays and fewer episodes of acute hospitalizations are predictive of dying-at-home for home hospice patients. End of life care brings value and hope to patients who are at the last moment of their life. The evidence provided by this study which was based in an urban and multicultural country will assist policy makers in making informed decisions and also contribute to the body of knowledge in hospice care sector.

Biography:

Hala Sheikh-Mohamed is currently doing her Internal Medicine Residency at the University of Central Florida/HCA consortium and hopes to pursue a fellowship in Hematology-Oncology in the near future. Dr. Sheikh-Mohamed is passionate about the early diagnosis and management of triple negative breast cancer but has unfortunately experienced limited early integration of palliative care services for patients undergoing treatment for these aggressive cancers. Dr. Sheikh-Mohamed hopes to work towards establishing a more standardize incorporation of early palliative care services that will address the early symptom burden, quality of life, and end of life care needs of all medical oncology patients.

Abstract:

The benefits of shared decision making in medical management are well established, but implementing its principles is often a difficult task. It involves extended conversations with patients, with obstacles including cultural and language barriers. Such barriers can be difficult to overcome, particularly with decisions involving death and end of life care.

 A 73-year-old Haitian woman with history of spastic hyper-reflexic paraparesis, recurrent urinary tract infections (UTI) and chronic hyperkalemia presented to the emergency room with her daughter for back pain and dysuria, following a year-long history of multiple hospitalizations for pain and UTIs. She had worsening confusion, poor appetite, and occasional upper extremity trembling. Examination revealed a demented patient with abdominal tenderness and 3+ hyper-reflexic paraparesis of the lower extremities. Labs showed leukocytosis and hyperkalemia with a polymicrobial urine culture growing ESBL E. coli and Pseudomonas aeruginosa for which she was started on meropenem. Transtubular potassium gradient indicated renal tubular acidosis as a cause of her hyperkalemia and treatment with fludrocortisone corrected her potassium. Despite almost a week of treatment there was little clinical improvement; the patient was bed-bound and had poor appetite. Given her significant disability, testing for HTLV in the CSF (indicative of tropical spastic paraparesis) was performed, and came back positive. The patient’s condition and prognosis as well as the family’s values were discussed throughout, and as the burden of her chronic disease became evident, the consensus was to maintain comfort and request additional care through hospice. Thus, she was referred to hospice for symptom palliation, and she passed away surrounded by family two weeks later.

 The lack of adequate communication with this patient and her family over several hospitalizations initially resulted in a care plan that was not aligned with the patient’s values and understanding of her prognosis. Although her urine cultures were repeatedly treated with antibiotics, there was no meaningful recovery and this likely contributed to the development of her multi-drug resistant bacteria. With the current shift toward personalized medicine, it is important to involve a multidisciplinary team that includes the patient, family, and physicians to make collaborative decisions. Such an approach contributes to holistic care and outcomes better aligned with patient values; improved patient quality of life, better family perceptions of the healthcare system and lower potential costs from readmissions.

Biography:

Lisa Martinelli Beasley has a MPS from Pratt Institute in Art Therapy and Creativity Development. Lisa worked clinically as a certified child life specialist and board certified art therapist in children’s hospitals located in New York and Ohio. Lisa has worked in academia for over ten years, and is currently a Clinical Associate Professor in the department of Family Studies and Community Development at Towson University.

Abstract:

Statement of the Problem: In a society that deeply denies death, dying, and bereavement, life becomes intolerable when people are confronted with their own mortalities, or the mortalities of their loved ones. While this is true at any developmental stage of life, it is particularly palpable when children are chronically ill because of the faulty belief that death afflicts people exclusively during their elder years. This leaves chronically ill children, as well as their parents, families, and communities poorly equipped to handle the emotional, social, and pragmatic implications of their circumstances. The purpose of this study is to encourage people to recognize that death, dying and bereavement are inevitable transitions, which will assist them when they and their loved ones arrive at the end of their lives. Additionally, it will enable participants to extend themselves toward acquaintances, colleagues, and members in the community who care for chronically ill children, since this population runs the risk of feeling isolated and shunned.

Methodology & Theoretical Orientation: A qualitative study was conducted in which108 individuals in the child life community who practice throughout the US were surveyed in order to glean insight about their experiences in working with chronically ill children and their families.

Findings: The data found that the following themes emerged: Denial of death in general, as well as how denial manifests via language and support systems, the implications of death (e.g., family dynamics, lessons and perspectives), as well as strategies families utilize to move forward and initiate closure.

Conclusion & Significance: For purposes of this conference, the presenters will concentrate on denial and moving forward – and as part of the latter, two exercise that promote legacy building and the incorporation of metaphors will be broached. The significance of this will to initiate meaningful internal and external conversations about death, dying, and bereavement.