scholarly journals Parents' Voices Supporting Music Therapy within Pediatric Palliative Care

Author(s):  
Kathryn Lindenfelser

It has been my experience that parents are willing and open to express their voices to promote and advocate for music therapy services for their terminally ill children. By listening to parents' voices when providing care for terminally ill children, much can be done to ease the suffering of children and families at the end of life (Widger & Wilkins, 2004). My music therapy masters research at the University of Melbourne with Dr. Katrina McFerran will investigate bereaved parents' experiences of music therapy with their terminally ill child. This inquiry unfolded through my music therapy work with several children and families within hospice and palliative care. Parents have reflected that music therapy was a vital component in their child's care at the end of life. As one mom commented, "I don't care what anyone says, it has made a world of a difference." In order to further explore parents' experiences of music therapy, in-depth interviews will be conducted and transcripts will be analyzed using phenomenological strategies. It has been reported that parents find the interview process helpful in working through grief. They have also reported feeling an overall eagerness to share their child's story in order to provide input that might assist other families in the future (Widger & Wilkins, 2004). This article will describe pediatric palliative and hospice care, discuss parents as advocates for their terminally ill children, portray the use of music therapy within pediatrics, and share an example of music therapy with Jack.

2021 ◽  
pp. 1-7
Author(s):  
Tan Seng Beng ◽  
Wong Ka Ghee ◽  
Ng Yun Hui ◽  
Ooi Chieh Yin ◽  
Khoo Wei Shen Kelvin ◽  
...  

Abstract Objective Dying is mostly seen as a dreadful event, never a happy experience. Yet, as palliative care physicians, we have seen so many patients who remained happy despite facing death. Hence, we conducted this qualitative study to explore happiness in palliative care patients at the University of Malaya Medical Centre. Method Twenty terminally ill patients were interviewed with semi-structured questions. The results were thematically analyzed. Results Eight themes were generated: the meaning of happiness, connections, mindset, pleasure, health, faith, wealth, and work. Our results showed that happiness is possible at the end of life. Happiness can coexist with pain and suffering. Social connections were the most important element of happiness at the end of life. Wealth and work were given the least emphasis. From the descriptions of our patients, we recognized a tendency for the degree of importance to shift from the hedonic happiness to eudaimonic happiness as patients experienced a terminal illness. Significance of results To increase the happiness of palliative care patients, it is crucial to assess the meaning of happiness for each patient and the degree of importance for each happiness domain to allow targeted interventions.


2021 ◽  
pp. 082585972110139
Author(s):  
Outi J. Hakola

Introduction: The 21st century has seen a proliferation of end-of-life documentary films and television documentaries that contribute to building a public image of hospice and palliative care. The way in which terminally ill patients are represented in these documentaries creates impressions of who is welcomed to receive end-of-life care. These documentary representations have not been previously mapped. Methods: Using quantitative content analysis, I analyzed 35 contemporary Western documentaries and studied their diversity in the representations. I focused on terminally ill patients who are given time and space in the narration to voice their views about the end-of-life process. I paid attention to such elements as gender, race and ethnicity, age, class, religion and sexuality. Results: The documentaries welcomed the representations and voices of terminally ill people. Class, religion and sexuality often had a marginal role in narration. The gender diversity of the representations was quite balanced. Regarding age, the documentaries preferred stories about working age patients for dramatic purposes, yet all age groups were represented. However, the documentaries had an identifiable racial and ethnic bias. With a few exceptions, terminally ill who had a personal voice in the narrations were white. In comparison, racial and ethnic minorities were either absent from most of the documentaries, or their role was limited to illustrations of the general story. Conclusions: End-of-life documentaries provide identifiable access to the patients’ experiences and as such they provide emotionally and personally engaging knowledge about hospice and palliative care. While these representations are people-oriented, they include racial disparities and they focus mostly on the experiences of white terminally ill patients. This bias reinforces the misleading image of hospice and palliative care as a racialized healthcare service.


Author(s):  
Paul W. DenOuden ◽  
Jonathan S. Appelbaum

Hospice and palliative care are part of the active care continuum. Hospice care involves an interdisciplinary approach to diagnosing and managing suffering and addressing the physical, psychosocial, and spiritual needs of patients and their families. Hospice care should be considered when no further interventions or treatments can cure or prolong the life of a terminally ill patient with an estimated life expectancy of 6 months or less. Making the decision for hospice care is often challenging for the patient, family, and clinicians alike in the antiretroviral therapy era of HIV treatment. Evaluation and treatment of terminal syndromes such as delirium, pain, dyspnea, nausea, and dry mouth are reviewed in this chapter.


Author(s):  
Susan Blacker ◽  
Rachel Thienprayoon

Emphasis on quality improvement (QI) can facilitate the dissemination of palliative care practices within the healthcare system. The opportunities for advancing the quality agenda in paediatric palliative care are significant. Research, evidence-based practice, and QI are necessary to transform knowledge into improved care for the unique population of children and families who receive palliative care. Barriers to implementation of QI need to be understood, and strategies need to be implemented, including ensuring adequate funding, and education, in order to provide the highest quality palliative and hospice care to children and their families.


Author(s):  
James Alton Croker ◽  
Julie Bobitt ◽  
Sara Sanders ◽  
Kanika Arora ◽  
Keith Mueller ◽  
...  

Introduction: Between 2013 and 2019, Illinois limited cannabis access to certified patients enrolled in the Illinois Medical Cannabis Program (IMCP). In 2016, the state instituted a fast-track pathway for terminal patients. The benefits of medicinal cannabis (MC) have clear implications for patients near end-of-life (EOL). However, little is known about how terminal patients engage medical cannabis relative to supportive care. Methods: Anonymous cross-sectional survey data were collected from 342 terminal patients who were already enrolled in ( n = 19) or planning to enroll ( n = 323) in hospice for EOL care. Logistic regression models compare patients in the sample on hospice planning vs. hospice enrollment, use of palliative care vs. hospice care, and use standard care vs non-hospice palliative care. Results: In our sample, cancer patients ( OR = 0.21 (0.11), p < .01), and those who used the fast-track application into the IMCP ( OR = 0.11 (0.06), p < .001) were less likely to be enrolled in hospice. Compared to patients in palliative care, hospice patients were less likely to report cancer as their qualifying condition ( OR = 0.16 (0.11), p < .01), or entered the IMCP via the fast-track ( OR = 0.23 (0.15), p < .05). Discussion: Given low hospice enrollment in a fairly large EOL sample, cannabis use may operate as an alternative to supportive forms of care like hospice and palliation. Clinicians should initiate conversations about cannabis use with their patients while also engaging EOL Care planning discussions as an essential part of the general care plan.


2020 ◽  
Vol 7 (Supplement_1) ◽  
pp. S328-S328
Author(s):  
Monika Pogorzelska-Maziarz ◽  
Jeannette Kates ◽  
Jingjing Shang ◽  
Angela M Gerolamo

Abstract Background Due to the emergence of COVID-19 and resulting pandemic, there is an increased demand for palliative care and hospice care services. However, the impact of COVID-19 on the hospice and palliative agencies is unknown. Methods An electronic survey was disseminated via the Hospice & Palliative Nurses Association newsletter, posted to the Sigma Theta Tau Hospice and Palliative Care Community Group discussion board and advertised through social media from May 7–28, 2020. Summary statistics were computed. Results We collected 36 surveys representing all U.S. regions. Most respondents (78%) reported that their agency has cared for confirmed COVID-19 patients. Only half of agencies had access to laboratory facilities for surveillance and detection of the presence of outbreaks in both patients and staff (58%) and the ability to test patients and providers for COVID-19 (55%). Due to COVID-19, participants stated that the agency added new protocols regarding aerosol-generating procedures policies (58%), use of surface barriers (61%) and PPE usage (e.g. donning and doffing) in patient homes (56%). The majority (76%) reported that their agency required field clinicians to call ahead to ascertain COVID-19 exposure/symptoms before a home visit. More than half (58%) reported that their agency lacked supplies, including N95 respirators (45%), cleaning/disinfectant product (23%), alcohol based sanitizer (18%), eye protection (18%), gowns (18%), and surgical masks (14%). Overall, participants shared that field clinicians had to reuse (76%), extend (73%) or ration (30%) PPE supplies. Respondents reported that their agency accessed supplemental PPE through state/local resources (67%), private/community donations (67%), and do-it-yourself efforts (55%). One third (31%) reported that their agency was experiencing staffing shortages due to COVID-19; of these, 60% reported that shortages were due to staff infected with/quarantined due to COVID-19. Conclusion Our findings suggest that COVID-19 has presented significant challenges for palliative care and hospice agencies as they provide care to patients and families at an unprecedented rate. Disclosures All Authors: No reported disclosures


2014 ◽  
Vol 6 (2) ◽  
pp. 227-245
Author(s):  
Daniela Moşoiu

Abstract Persons suffering from chronic and life limiting illnesses often have unrelieved symptoms such as pain, depression, fatigue, and psychosocial and spiritual distress. In Romania they are frequently left in the care of their families with little support from the health care system. It seems a paradox that those who are the sickest persons in a country find little place in the health care system. This article presents palliative care as a solution to the suffering for these patients and their families by describing the concept, models of services, its beneficiaries and benefits and presenting the history of development of hospice and palliative care worldwide and in Romania.


2018 ◽  
Vol 21 (2) ◽  
pp. 62-71
Author(s):  
Henry O’Lawrence ◽  
Rohan Chowlkar

Purpose The purpose of this paper is to determine the cost effectiveness of palliative care on patients in a home health and hospice setting. Secondary data set was utilized to test the hypotheses of this study. Home health care and hospice care services have the potential to avert hospital admissions in patients requiring palliative care, which significantly affects medicare spending. With the aging population, it has become evident that demand of palliative care will increase four-fold. It was determined that current spending on end-of-life care is radically emptying medicare funds and fiscally weakening numerous families who have patients under palliative care during life-threatening illnesses. The study found that a majority of people registering for palliative and hospice care settings are above the age group of 55 years old. Design/methodology/approach Different variables like length of stay, mode of payment and disease diagnosis were used to filter the available data set. Secondary data were utilized to test the hypothesis of this study. There are very few studies on hospice and palliative care services and no study focuses on the cost associated with this care. Since a very large number of the USA, population is turning 65 and over, it is very important to analyze the cost of care for palliative and hospice care. For the purpose of this analysis, data were utilized from the National Home and Hospice Care Survey (NHHCS), which has been conducted periodically by the Centers for Disease Control and Prevention’s National Center for Health Statistics. Descriptive statistics, χ2 tests and t-tests were used to test for statistical significance at the p<0.05 level. Findings The Statistical Package for Social Sciences (SPSS) was utilized for this result. H1 predicted that patients in the age group of 65 years and up have the highest utilization of home and hospice care. This study examined various demographic variables in hospice and home health care which may help to evaluate the cost of care and the modes of payments. This section of the result presents the descriptive analysis of dependent, independent and covariate variables that provide the overall national estimates on differences in use of home and hospice care in various age groups and sex. Research limitations/implications The data set used was from the 2007 NHHCS survey, no data have been collected thereafter, and therefore, gap in data analysis may give inaccurate findings. To compensate for this gap in the data set, recent studies were reviewed which analyzed cost in palliative care in the USA. There has been a lack of evidence to prove the cost savings and improved quality of life in palliative/hospice care. There is a need for new research on the various cost factors affecting palliative care services as well as considering the quality of life. Although, it is evident that palliative care treatment is less expensive as compared to the regular care, since it eliminates the direct hospitalization cost, but there is inadequate research to prove that it improves the quality of life. A detailed research is required considering the additional cost incurred in palliative/hospice care services and a cost-benefit analysis of the same. Practical implications While various studies reporting information applicable to the expenses and effect of family caregiving toward the end-of-life were distinguished, none of the previous research discussed this issue as their central focus. Most studies addressed more extensive financial effect of palliative and end-of-life care, including expenses borne by the patients themselves, the medicinal services framework and safety net providers or beneficent/willful suppliers. This shows a significant hole in the current writing. Social implications With the aging population, it has become evident that demand of palliative/hospice care will increase four-fold. The NHHCS have stopped keeping track of the palliative care requirements after 2007, which has a negative impact on the growing needs. Cost analysis can only be performed by analyzing existing data. This review has recognized a huge niche in the evidence base with respect to the cost cares of giving care and supporting a relative inside a palliative/hospice care setting. Originality/value The study exhibited that cost diminishments in aggressive medications can take care of the expenses of palliative/hospice care services. The issue of evaluating result in such a physically measurable way is complicated by the impalpable nature of large portions of the individual components of outcome. Although physical and mental well-being can be evaluated to a certain degree, it is significantly more difficult to gauge in a quantifiable way, the social and profound measurements of care that help fundamentally to general quality of care.


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