Specialist palliative care along the trajectory of illness

2021 ◽  
pp. 103-110
Author(s):  
Breffni Hannon ◽  
Stein Kaasa ◽  
Camilla Zimmermann
Keyword(s):  
Palliative Care ◽  
Tertiary Care ◽  
Optimal Time ◽  
Future Research ◽  
Optimal Timing ◽  
Early Integration ◽  
Early Palliative Care ◽  
Care Services ◽  
Healthcare Settings ◽  
Palliative Care Services

The benefits of early, integrated palliative care have been demonstrated through several randomized controlled trials. These benefits include improved quality of life, satisfaction with care, symptom management, and, in some cases, survival. Despite heterogeneity in study design and execution, as well as limitation to mainly the oncology population, these trials have answered the question of why patients should receive palliative care early in their disease trajectory. Attention must now shift to the practicalities of early integration; these include questions about when is the optimal time to refer to palliative care services, who is best placed to provide palliative care supports, where early palliative care should be provided, and how best to integrate early palliative care services across the care continuum. This chapter summarizes current evidence supporting early integration of palliative care; describes the respective roles of primary, secondary, and tertiary care providers in the delivery of early palliative care; explores the optimal timing and venues for the delivery of early palliative care; and outlines a hierarchy of integration models to best meet the needs of all patients throughout the illness trajectory. Although rooted in evidence primarily from oncology trials conducted in North American and European settings, these options may be adaptable across a variety of healthcare settings, irrespective of available resources and stages of development of palliative care services. Future research should include patients from non-oncology populations, and focus on models of integration that include primary and secondary providers, rather than relying only on tertiary palliative care.

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 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.

Impact of palliative care referral on hospice enrollment: A single center analysis.

2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 17-17
Author(s):  
Shreya Sinha ◽  
Alina Basnet ◽  
Wajihuddin Syed ◽  
Pallavi Koparthy ◽  
Rashad Khan ◽  
...  
Keyword(s):  
Pancreatic Cancer ◽  
Palliative Care ◽  
Hospice Care ◽  
Univariate Analysis ◽  
Insurance Status ◽  
Disease Course ◽  
Advanced Directives ◽  
Early Palliative Care ◽  
Care Services ◽  
Palliative Care Services

17 Background: Despite ASCO’s recommendation to introduce palliative care services for all patients diagnosed with localized or metastatic pancreatic cancer, most patients’ care does not involve this multimodality approach. Transitioning patients to hospice at an appropriate time is essential in oncologic practice. The purpose of this study is to identify which variables affect acceptance of hospice services by patients. Methods: A retrospective chart review of patients with pancreatic cancer treated at Upstate University Hospital from 2011-2015 was performed. We studied variables including age, sex, race, stage, insurance status, advance directives, performance status and laboratory values. We analyzed patients based on acceptance or rejection of hospice care in their disease course and conducted a univariate analysis on different factors to determine predisposing variables. p-values were calculated using Chi-Square test and t-test. Results: We reviewed 325 patients charts and found statistically significant relation to acceptance of hospice and insurance status, and involvement of palliative care in their care. Patients with Medicare were more likely to decline hospice care whereas patients with Medicaid or no insurance were more likely to accept it. 36.23% of patients saw palliative care services at any point in their treatment course and these patients were more likely to accept hospice care than patients who did not (p = < 0.0001). Patients who were seen by palliative care earlier in their disease course were more likely to accept hospice care, although this did not reach statistical significance (p = 0.0731). Patients with stage IV disease were more likely to accept hospice care (p = 0.0095). Other variables like presence of advanced directives, tumor markers, age, and sex did not have a significant impact. Conclusions: Palliative care involvement is beneficial in patients with pancreatic cancer as they face a rough disease course with multiple treatment and disease related morbidities. Patients with early palliative care involvement during their illness are more likely to decide on hospice care at the end stages of their malignancies. This supports early palliative care introduction as an adjunct to oncologic care.

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.

scholarly journals The views of patients with brain cancer about palliative care: a qualitative study

2017 ◽  
Vol 24 (6) ◽  
pp. 374 ◽  
Author(s):  
M. Vierhout ◽  
M. Daniels ◽  
P. Mazzotta ◽  
J. Vlahos ◽  
W.P. Mason ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cancer Patients ◽  
Brain Cancer ◽  
Chronic Conditions ◽  
Structured Interviews ◽  
Optimal Care ◽  
Early Palliative Care ◽  
Care Services ◽  
Palliative Care Services ◽  
To Receive

Background Palliative care, a specialty aimed at providing optimal care to patients with life-limiting and chronic conditions, has several benefits. Although palliative care is appropriate for neurosurgical conditions, including brain cancer, few studies have examined the views of brain cancer patients about palliative care. We aimed to explore the thoughts of brain cancer patients about palliative care, their opinions about early palliative care, and their preferred care setting.Methods Semi-structured interviews and the qualitative research methodologies of grounded theory were used to explore perceptions of palliative care on the part of 39 brain cancer outpatients.Results Seven overarching actions emerged:Patients would prefer to receive palliative care in the home.Increased time with caregivers and family are the main appeals of home care.Patients express dissatisfaction with brief and superficial interactions with health care providers.Patients believe that palliative care can contribute to their emotional well-being.Patients are open to palliative care if they believe that it will not diminish optimism.There is a preconceived idea that palliative care is directly linked to active dying, and that supposed link generates fear in some patients.Patients prefer to be educated about palliative care as an option early in their illness, even if they are fearful of it.Conclusions Overall, when educated about the true meaning of palliative care, most patients express interest in accessing palliative care services. Although the level of fear concerning palliative care varies in patients, most recognize the associated benefits.

Timing of referral to inpatient palliative care services for advanced cancer patients and earlier referral predictors in mainland China

2015 ◽  
Vol 14 (5) ◽  
pp. 503-509 ◽  
Author(s):  
Xiaoli Gu ◽  
Wenwu Cheng ◽  
Menglei Chen ◽  
Minghui Liu ◽  
Zhe Zhang
Keyword(s):  
Palliative Care ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Mainland China ◽  
Cancer Type ◽  
Early Integration ◽  
Care Services ◽  
Common Diagnosis ◽  
Palliative Care Services ◽  
Chinese Cancer Patients

AbstractObjective:Routine early integration of palliative care with advanced cancer management is not yet a part of standard practice in many countries, including mainland China. Whether patients in China suffering from advanced cancer are referred to palliative care services in a timely manner remains unclear. We sought to investigate the timing of palliative care referral of Chinese cancer patients at our center and its predictors.Method:Retrospective medical data including demographic characteristics and referral information were collected for analysis. A total of 759 patients referred to our palliative care unit (PCU) from January of 2007 to December of 2013 were included in the final analysis.Results:The mean age of the 759 patients included in the study was 62.89 years (range 61.95–63.82). Some 369 patients (48.6%) were male and 559 (73.6%) Shanghainese (indigenous). Lung cancer (17.9%) was the most common diagnosis. The time interval since enrollment into the PCU until a patient's death (length of stay, LOS) was calculated. A longer LOS indicated earlier referral to inpatient PC services. The median LOS was 21 days (CI95% = 19.79–22.21). Multivariate analysis showed that whether or not the patient was indigenous (p = 0.002) and younger than 65 (p = 0.031) were independent factors for a longer LOS. Such other characteristics as gender and primary cancer type bore no relationship to LOS.Significance of results:Our findings demonstrate that Chinese cancer patients are referred relatively late in the course of their disease to inpatient palliative care services. To overcome the barriers to early integration of palliative care into a patient's treatment plan, accurate information about palliative care must be provided to both oncologists and patients via comprehensive and systematic educational programs.

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