Palliative Models of Care Delivery

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.

Identifying Palliative Care Needs in Assisted Living

Innovation in Aging ◽

10.1093/geroni/igaa057.2854 ◽

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 ◽

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.

Advantages and challenges in using telehealth for home-based palliative care: A systematic mixed studies review protocol (Preprint)

10.2196/preprints.22626 ◽

2020 ◽

Author(s):

Simen A Steindal ◽

Andréa Aparecida Goncalves Nes ◽

Tove E. Godskesen ◽

Susanne Lind ◽

Alfhild Dhle ◽

...

Keyword(s):

Palliative Care ◽

Care Delivery ◽

Patient Centered ◽

Care Services ◽

Home Based ◽

Mixed Studies Review ◽

Meta Analyses ◽

Systematic Mixed Studies Review ◽

At Home

BACKGROUND Due to the increasing number of people in need of palliative care services and the current health care professional workforce strain, providing equitable, quality palliative care has become a challenge. Telehealth could be an innovative approach to palliative care delivery, enabling patients to spend more time or even remain at home, if they wish, throughout the illness trajectory. However, no previous systematic mixed studies reviews have synthesized evidence on patients’ experiences of the advantages and challenges of telehealth for home-based palliative care. OBJECTIVE The aim of this systematic mixed studies review is to critically appraise and synthesize findings from studies that investigated patients’ use of telehealth in home-based palliative care with a focus on the advantages and challenges experienced by the patients. METHODS This article describes the protocol for a systematic mixed studies review with a convergent design. The reporting will be guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement. A systematic search was performed in eight databases for studies published from January 2010 to June 2020. The search will be updated in 2021. Pairs of authors will independently assess eligibility, extract data and assess methodological quality. The data will then be analyzed using thematic synthesis. RESULTS We described the rationale and design of a systematic mixed studies review. The database searches were performed on June 25, 2020. Assessment of eligibility and further steps have not yet been performed. Results are anticipated by August 2021. CONCLUSIONS Following the ethos of patient-centered palliative care, this systematic mixed studies review could contribute recommendations for practice and policy enabling the development of telehealth applications and services that align with patients’ preferences and needs when using telehealth applications and services at home.

Rural Palliative Care

Oxford Textbook of Palliative Nursing ◽

10.1093/med/9780190862374.003.0055 ◽

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 ◽

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.

Do Patients with Advanced Cancer and Unmet Palliative Care Needs Have an Interest in Receiving Palliative Care Services?

Journal of Palliative Medicine ◽

10.1089/jpm.2013.0537 ◽

2014 ◽

Vol 17 (6) ◽

pp. 667-672 ◽

Cited By ~ 19

Author(s):

Yael Schenker ◽

Seo Young Park ◽

Rachael Maciasz ◽

Robert M. Arnold

Keyword(s):

Palliative Care ◽

Advanced Cancer ◽

Care Needs ◽

Care Services ◽

Palliative Care Needs

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

Palliative & Supportive Care ◽

10.1017/s1478951515000796 ◽

2015 ◽

Vol 14 (3) ◽

pp. 284-301 ◽

Cited By ~ 4

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 ◽

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.

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

Journal of the National Comprehensive Cancer Network ◽

10.6004/jnccn.2020.7696 ◽

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 ◽

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.

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

Palliative Medicine ◽

10.1177/0269216317727158 ◽

2017 ◽

Vol 32 (1) ◽

pp. 114-122 ◽

Cited By ~ 17

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 ◽

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.

Where there is no morphine: The challenge and hope of palliative care delivery in Tanzania

African Journal of Primary Health Care & Family Medicine ◽

10.4102/phcfm.v6i1.549 ◽

2014 ◽

Vol 6 (1) ◽

Cited By ~ 9

Author(s):

Kristopher Hartwig ◽

Mervyn Dean ◽

Kari Hartwig ◽

Paul Z. Mmbando ◽

Abduraoof Sayed ◽

...

Keyword(s):

Palliative Care ◽

Cancer Patients ◽

Mixed Method ◽

Care Delivery ◽

Oral Morphine ◽

Psychological Burden ◽

Care Experience ◽

Care Services ◽

Palliative Care Teams ◽

Background: In Tanzania, a country of 42 million, access to oral morphine is rare.Aim: To demonstrate the effectiveness of palliative care teams in reducing patients’ pain and in increasing other positive life qualities in the absence of morphine; and to document the psychological burden experienced by their clinical providers, trained in morphine delivery, as they observed their patients suffering and in extreme pain.Setting: One hundred and forty-fie cancer patients were included from 13 rural hospitals spread across Tanzania.Method: A mixed method study beginning with a retrospective quantitative analysis of cancer patients who were administered the APCA African POS tool four times. Bivariate analyses of the scores at time one and four were compared across the domains. The qualitative arm included an analysis of interviews with six nurses, each with more than fie years’ palliative care experience and no access to strong opioids.Results: Patients and their family caregivers identifid statistically signifiant (p < 0.001) improvements in all of the domains. Thematic analysis of nurse interviews described the patient and family benefis from palliative care but also their great distress when ‘bad cases’ arose who would likely benefi only from oral morphine.Conclusion: People living with chronic cancer-related pain who receive palliative care experience profound physical, spiritual and emotional benefis even without oral morphine. These results demonstrate the need for continued advocacy to increase the availability of oral morphine in these settings in addition to palliative care services.

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

Journal of the National Comprehensive Cancer Network ◽

10.6004/jnccn.2018.7174 ◽

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 ◽

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.