scholarly journals Adolescents and Young Adults Living With an Uncertain or Poor Cancer Prognosis: The “New” Lost Tribe

2021 ◽  
Vol 19 (3) ◽  
pp. 240-246
Author(s):  
Vivian W.G. Burgers ◽  
Winette T.A. van der Graaf ◽  
Daniël J. van der Meer ◽  
Martin G. McCabe ◽  
Anita W. Rijneveld ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cancer Prognosis ◽  
Adolescent And Young Adult ◽  
Future Research ◽  
Care Needs ◽  
Novel Treatments ◽  
Care Services ◽  
Life Years ◽  
Palliative Care Services ◽  
Cure Rates

Historically, adolescent and young adult (AYA) patients with cancer, diagnosed for the first time at age 15 through 39 years, have often been identified as a “lost tribe” without a medical “home”; neither pediatric nor adult oncology services were able to provide age-appropriate care to this specific group. Internationally, AYA care programs are being established to bridge the gap between the age-defined healthcare worlds and to address the specific needs of AYAs with cancer. However, AYA care programs mostly focus on improving cure rates and addressing survivorship issues, and direct less attention to the unique needs of those living with an uncertain and/or poor cancer prognosis. Additionally, palliative care services are typically poorly equipped to address the age-specific needs of this group. Given that increasingly more AYAs with an uncertain and/or poor cancer prognosis are gaining life years because of novel treatments, and sometimes even face the prospect of long-term disease control, AYA care programs should address the unique palliative care needs of this “new” lost tribe within AYA oncology. This report provides a definition and description of the AYA population living with an uncertain and/or poor cancer prognosis in terms of epidemiologic, clinical, and psychosocial characteristics and challenges, and provides perspectives for future research and care initiatives. It also highlights the need to comprehensively examine the experience of AYAs who are living with uncertain and/or poor cancer prognosis to adjust best care practices for this unique group.

scholarly journals Identifying Palliative Care Needs in Assisted Living

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 788-788
Author(s):  
Daniel David ◽  
Abraham Brody ◽  
Tina Sadarangani ◽  
Bei Wu ◽  
Tara Cortez
Keyword(s):  
Palliative Care ◽  
Assisted Living ◽  
Unmet Needs ◽  
Care Needs ◽  
Code Status ◽  
Care Services ◽  
Palliative Care Services ◽  
Advance Care ◽  
Palliative Care Needs

Abstract Many residents of Assisted Living (AL) confront serious illness and therefore might benefit from greater access to Palliative Care Services to improve quality of life. We surveyed resident records and AL nursing staff to identify patients in need of Palliative Care. Preliminary findings showed that nurses predicted 23% would not be alive and 49% would no longer live in AL. A majority of residents were over the age of 90, yet 30% did not have a reported code status. These findings suggest that a substantial portion of AL residents may have unmet needs with respect to palliative care. Future interventions are needed to support advance care planning conversations and make palliative care more accessible to this population.

Rural Palliative Care

2019 ◽  
pp. 670-681
Author(s):  
Richard A. Taylor ◽  
J. Nicholas Dionne-Odom ◽  
Erin R. Currie ◽  
Macy Stockdill ◽  
Marie A. Bakitas
Keyword(s):  
Palliative Care ◽  
Nurse Practitioners ◽  
Rural Areas ◽  
Health Workers ◽  
Symptom Control ◽  
Care Needs ◽  
Web Based ◽  
Care Services ◽  
Palliative Care Services ◽  
Care Training

Access to palliative care remains challenging to those living in rural areas across the globe. This disparity of care leaves many without critically important palliative care services across their illness trajectory, especially in its final stages. Creative strategies to meet the palliative care needs of rural patients such as telehealth, videoconferencing specialists’ consultation, and web-based resources exist. Using these strategies where available can address some palliative care disparities and access to care in rural areas that were previously absent. Developing clinical capacity of rural clinicians through enhanced education in primary palliative care in training programs, expanding services with the use of nurse practitioners, and using palliative care–trained community lay health workers are also strategies to improve access. Additionally, by developing rural hospital providers’ knowledge and skills to provide primary palliative care in tasks such as establishing care goals, communication, and basic symptom control may prevent many transfers to academic centers miles away. Through ongoing education and primary palliative care training and innovations in bringing specialty care to rural areas, “palliative care everywhere” will soon be a reality.

Integration of specialist palliative care services into a multidisciplinary adolescent and young adult (AYA) oncology team.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 64-64
Author(s):  
Rachel Elizabeth Hughes ◽  
Kate Thompson
Keyword(s):  
Palliative Care ◽  
Young Adult ◽  
Clinical Oncology ◽  
Symptom Management ◽  
Symptom Burden ◽  
Multidisciplinary Care ◽  
Adolescent And Young Adult ◽  
Curative Intent ◽  
Care Services ◽  
Palliative Care Services

64 Background: Palliative care is recommended alongside standard oncological care for patients with advanced cancer or high symptom burden (Smith TJ, Temin S, et al. American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care. Journal of Clinical Oncology. 2012;30(8)880-7.). AYA oncology patients are distinguished by several age-specific developmental and biopsychosocial factors, resulting in a unique impact profile (Wein S, Pery S, Zer A. Role of palliative care in adolescent and young adult oncology. J Clin Oncol. 2010;28:4819-4824). Methods: To examine the benefits of multidisciplinary AYA care, a palliative care fellow was incorporated into an existing AYA oncology team in Australia, for a 12 month period. This role facilitated assessment/management of symptoms, general health issues, treatment toxicity, end of life care and bereavement support. Results: Between 2012 and 2013, of 83 new patients were referred to the AYA oncology service, 27 (32.5%) were referred the palliative care fellow. Notably, 37% of patients referred were receiving curative intent treatment. 10 patients (37%) were referred at diagnosis for symptom management. Pain was the most frequent reason for referral (n=17 63%). A total of 7 patients (26%) were referred for advanced disease/terminal care. Conclusions: Evaluation demonstrates that onsite availability of palliative care services is acceptable, facilitates early referral and has encouraged collaborative, AYA multidisciplinary care. A significant additional finding has been recognition of the demand for symptom management of patients early in their cancer experience. Further development and evaluation of AYA specific palliative care is warranted.

Using a supportive care framework to understand and improve palliative care among cancer patients in Africa

2015 ◽  
Vol 14 (3) ◽  
pp. 284-301 ◽  
Author(s):  
David S. Busolo ◽  
Roberta L. Woodgate
Keyword(s):  
Palliative Care ◽  
Supportive Care ◽  
Cancer Patients ◽  
Care Needs ◽  
African Countries ◽  
Research Education ◽  
Patients With Cancer ◽  
Care Services ◽  
Incidence And Mortality ◽  
Palliative Care Services

ABSTRACTObjective:Cancer incidence and mortality are increasing in Africa, which is leading to greater demands for palliative care. There has been little progress in terms of research, pain management, and policies related to palliative care. Palliative care in Africa is scarce and scattered, with most African nations lacking the basic services. To address these needs, a guiding framework that identifies care needs and directs palliative care services could be utilized. Therefore, using the supportive care framework developed by Fitch (Fitch, 2009), we here review the literature on palliative care for patients diagnosed with cancer in Africa and make recommendations for improvement.Method:The PubMed, Scopus, CINAHL, Web of Science, Embase, PsycINFO, Social Sciences Citation Index, and Medline databases were searched. Some 25 English articles on research from African countries published between 2004 and 2014 were selected and reviewed. The reviewed literature was analyzed and presented using the domains of the supportive care framework.Results:Palliative care patients with cancer in Africa, their families, and caregivers experience increasing psychological, physical, social, spiritual, emotional, informational, and practical needs. Care needs are often inadequately addressed because of a lack of awareness as well as deficient and scattered palliative care services and resources. In addition, there is sparse research, education, and policies that address the dire situation in palliative care.Significance of Results:Our review findings add to the existing body of knowledge demonstrating that palliative care patients with cancer in Africa experience disturbing care needs in all domains of the supportive care framework. To better assess and address these needs, holistic palliative care that is multidomain and multi-professional could be utilized. This approach needs to be individualized and to offer better access to services and information. In addition, research, education, and policies around palliative care for cancer patients in Africa could be more comprehensive if they were based on the domains of the supportive care framework.

scholarly journals Strategies for introducing outpatient specialty palliative care in gynecologic oncology.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 111-111
Author(s):  
Casey M. Hay ◽  
Carolyn Lefkowits ◽  
Marie Bakitas ◽  
Megan Crowley-Makota ◽  
Renata Urban ◽  
...  
Keyword(s):  
Palliative Care ◽  
Symptom Control ◽  
Gynecologic Oncology ◽  
Relationship Building ◽  
Future Research ◽  
Patient Anxiety ◽  
Telephone Interviews ◽  
Care Services ◽  
Qualitative Interview Study ◽  
Palliative Care Services

111 Background: Concern that patients will react negatively to the idea of palliative care is cited as a barrier to timely referral. Strategies to successfully introduce specialty palliative care to patients have not been well-described. We sought to understand how gynecologic oncologists introduce outpatient specialty palliative care. Methods: We conducted a national qualitative interview study at six geographically diverse academic cancer centers with well-established palliative care clinics between September 2015 and March 2016. Thirty-four gynecologic oncologists participated in semi-structured telephone interviews focusing on attitudes, experiences, and practices related to outpatient palliative care. A multidisciplinary team analyzed interview transcripts using constant comparative methods to inductively develop and refine a coding framework. This analysis focuses on practices for introducing palliative care. Results: Mean participant age was 47 years (± 10). Mean interview length was 25 minutes (± 7). Gynecologic oncologists described three main strategies for introducing outpatient specialty palliative care: first establish a strong primary relationship and trust with patients in order to alleviate fear and increase acceptance of referral; focus initial palliative care referral on symptom control to gain a “foot in the door”, facilitate early relationship-building with palliative care clinicians, and dissociate palliative care from end-of-life; and normalize and explain palliative care referral to decrease patient anxiety and confusion. These strategies aimed to decrease negative patient associations and encourage acceptance of early referral to palliative care specialists. Conclusions: Gynecologic oncologists have developed strategies for introducing palliative care services to alleviate patient concerns. Future research should examine patient perception of these strategies and assess impact on rates of acceptance of outpatient specialty palliative care referral.

scholarly journals Involvement of palliative care in euthanasia practice in a context of legalized euthanasia: A population-based mortality follow-back study

2017 ◽  
Vol 32 (1) ◽  
pp. 114-122 ◽  
Author(s):  
Sigrid Dierickx ◽  
Luc Deliens ◽  
Joachim Cohen ◽  
Kenneth Chambaere
Keyword(s):  
Palliative Care ◽  
Odds Ratio ◽  
Care Service ◽  
Palliative Care Service ◽  
Population Based ◽  
Decision Making Process ◽  
Care Needs ◽  
International Debate ◽  
Care Services ◽  
Palliative Care Services

Background: In the international debate about assisted dying, it is commonly stated that euthanasia is incompatible with palliative care. In Belgium, where euthanasia was legalized in 2002, the Federation for Palliative Care Flanders has endorsed the viewpoint that euthanasia can be embedded in palliative care. Aim: To examine the involvement of palliative care services in euthanasia practice in a context of legalized euthanasia. Design: Population-based mortality follow-back survey. Setting/participants: Physicians attending a random sample of 6871 deaths in Flanders, Belgium, in 2013. Results: People requesting euthanasia were more likely to have received palliative care (70.9%) than other people dying non-suddenly (45.2%) (odds ratio = 2.1 (95% confidence interval, 1.5–2.9)). The most frequently indicated reasons for non-referral to a palliative care service in those requesting euthanasia were that existing care already sufficiently addressed the patient’s palliative and supportive care needs (56.5%) and that the patient did not want to be referred (26.1%). The likelihood of a request being granted did not differ between cases with or without palliative care involvement. Palliative care professionals were involved in the decision-making process and/or performance of euthanasia in 59.8% of all euthanasia deaths; this involvement was higher in hospitals (76.0%) than at home (47.0%) or in nursing homes (49.5%). Conclusion: In Flanders, in a context of legalized euthanasia, euthanasia and palliative care do not seem to be contradictory practices. A substantial proportion of people who make a euthanasia request are seen by palliative care services, and for a majority of these, the request is granted.

scholarly journals The Role of Resilience in the Sibling Experience of Pediatric Palliative Care: What Is the Theory and Evidence?

Children ◽  
2018 ◽  
Vol 5 (7) ◽  
pp. 97 ◽  
Author(s):  
Wei Chin ◽  
Tiina Jaaniste ◽  
Susan Trethewie
Keyword(s):  
Palliative Care ◽  
Family System ◽  
Pediatric Palliative Care ◽  
Future Research ◽  
Medical Conditions ◽  
Disease Trajectory ◽  
Care Services ◽  
The Family ◽  
Palliative Care Services

Siblings of children with life limiting conditions (LLC) are an important part of the broader family system and require consideration in the holistic care of the family. There can be considerable variation in the functioning and adjustment of these siblings. The current paper explores the resilience paradigm, particularly in the context of siblings of children with LLC and serious medical conditions. The potential impact of children living with a seriously ill brother or sister will be overviewed, and a range of functional outcomes considered. Factors contributing to sibling resilience are detailed, including individual, family, and broader external and social factors. Given the limited research with siblings of children with LLC, literature has also been drawn from the siblings of children with serious and/or chronic medical conditions. Implications for clinical practice and future research are considered. Pediatric palliative care services may be well placed to contribute to this body of research as they have commonly extended relationships with the families of children with LLC, which span across the child’s disease trajectory.

Palliative Models of Care Delivery

2021 ◽  
pp. 13-22
Author(s):  
Britni Lookabaugh ◽  
Charles von Gunten
Keyword(s):  
Palliative Care ◽  
Assisted Living ◽  
Independent Living ◽  
Care Delivery ◽  
Models Of Care ◽  
Nursing Facilities ◽  
Care Needs ◽  
Skilled Nursing ◽  
Care Services ◽  
Palliative Care Services

In caring for patients with chronic complex and life-limiting illness, models of palliative care delivery have developed across the care continuum. While many palliative care services are provided by hospital-based consult teams, palliative care is also delivered in the home, including independent living, assisted living, and group homes; in skilled nursing facilities; and in the outpatient office setting. While high variability exists for delivery of palliative care across the globe, there have been many studies reflecting the value of palliative care across these settings, for quality of end-of-life care as well as for the financial implications in the complex medical care for patients with palliative care needs.

HSR19-080: Situational Analysis and Needs Assessment Regarding the Availability and Extent of Pediatric Palliative Care Services in the Philippines

2019 ◽  
Vol 17 (3.5) ◽  
pp. HSR19-080
Author(s):  
Loyda Amor N. Cajucom ◽  
Rita C. Ramos ◽  
Raymund Kernell B. Mañago ◽  
Raya Kathreen T. Fuentes ◽  
Primo G. Garcia ◽  
...  
Keyword(s):  
Palliative Care ◽  
Pediatric Oncology ◽  
Healthcare Providers ◽  
The Philippines ◽  
Situational Analysis ◽  
Care Needs ◽  
Care Services ◽  
Palliative Care Services ◽  
The Common ◽  
Palliative Care Needs

Background: Around 200,000 pediatric clients are diagnosed with cancer each year globally. Majority (84%) of cancer cases are found in developing countries with 20% average survival rate (Ferlay et al, 2012). Two-thirds of pediatric oncology clients in the Philippines are diagnosed at advanced stages (Lecciones, 2015). Abandonment of treatment is high at 80%. Only about 10%–20% of clients attain long-term survival despite availability of multidisciplinary management. These outcomes reflect the gap in service delivery for pediatric oncology clients (Ferlay et al, 2012). Therefore, to improve accessibility to healthcare, it is necessary to determine the perceived palliative care needs of clients, their caregivers, and healthcare providers. Objective: To identify the availability of palliative care services in the country, identify barriers in service delivery, and determine the palliative care needs of pediatric oncology clients, their caregivers, and healthcare providers. Methods: The descriptive, cross-sectional study design involved a situational analysis by mapping 2 Philippine palliative centers. Focus group discussions (FGD) and interviews with healthcare professionals were conducted to determine the extent of services, geographical coverage, and perceived palliative care needs. The needs assessment tool by WHO (2004) was adopted to identify the palliative care needs of pediatric oncology clients as perceived by caregivers. Results: From a total of 181 primary caregivers, the identified main problems in caring was the economical (95.6%) aspect. Financial support (92%) was the most pressing need. Caregivers would like to learn more about general cancer care (39%) and nutrition counseling (24%). The most common palliative care needs as perceived by caregivers included accessibility to cancer facility (27%), free cancer medications (12.7%), and financial assistance (14.9%). The common barriers in rendering care were financial constraints (66%), behavioral changes (12.7%), and travel limitations (6%). The common themes found during the FGDs and interviews were: (1) inadequate human and structural health resources; (2) need to focus on psychosocial care; (3) addressing economic constraints; and (4) need to increase cancer awareness among caregivers. Conclusion: The findings of the study documented the need for the development of structured programs for pediatric palliative care in the Philippines.

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