Psychosocial Issues in Palliative Care

Patients with life-limiting illness and their families require the skills of many professionals, but also the support of their community. Psychosocial issues for people with life-limiting and terminal illness are complex and require excellent team work and the ability to look beyond the obvious. Whilst most professionals are comfortable in assessing and supporting even the most intimate of physical problems, assessing and supporting the emotional, social, and spiritual sequelae of terminal illness is challenging. More attention has been given to the psychosocial needs of adults with cancer than for any other group. This new edition of a successful text examines current practice and provision of psychosocial care across the lifespan and includes neonatal palliative care, care of the frail elderly, those with dementia and the marginalized. It is a highly practical text, comprehensively reviewing the current literature and evidence in order to demonstrate good, and better, research-based practice in psychosocial care.

2011 ◽  
Vol 9 (2) ◽  
pp. 181-189 ◽  
Author(s):  
Claire E. Johnson ◽  
Afaf Girgis ◽  
Christine L. Paul ◽  
David C. Currow

AbstractObjective:Late or non-referral of patients to specialist palliative care (SPC) services may affect patients' and their carers' quality of care. General practitioners (GPs) are key professionals in linking people with SPC. The aim of this article is to assess GPs' perceptions and SPC referrals for their patients with advanced cancer and differences between metropolitan (M GPs) and non-metropolitan GPs (NM GPs).Method:Self-report survey mailed to a stratified random sample of 1,680 Australian GPs was used.Results:Thirty-one percent (469) of eligible GPs returned surveys. More M GPs than NM GPs reported referring >60% of their patients for SPC (p = 0.014); and that a more comprehensive range of SPC services was available. The most frequently reported referral prompts were: presence of terminal illness (M GPs, 71%, NM GPs, 66%, ns (not significant)); future need for symptom control (69% vs. 59%, ns) and uncontrolled physical symptoms (63% vs. 54%, ns). Reasons for not referring were: doctor's ability to manage symptoms (62% vs. 68%, ns) and the absence of symptoms (29% vs. 18%, p = 0.025). Higher referral was associated with: having a palliative care physician or consultative service available; agreeing that all patients with advanced cancer should be referred, and agreeing that with SPC, the needs of the family are better met.Significance of results:Referrals for SPC were primarily disease-related rather than for psychological and emotional concerns. Measures are needed to encourage referrals based upon psychosocial needs as well as for physical concerns, and to support GPs caring for people with advanced cancer in areas with fewer comprehensive SPC services.


Author(s):  
Ellis C. Dillon ◽  
Vidita Chopra ◽  
Elizabeth Mesghina ◽  
Anthony Milki ◽  
Ava Chan ◽  
...  

Objective To examine women’s journeys with gynecologic cancer from before diagnosis through death and identify elements of their healthcare experience that warrant improvement. Methods This exploratory study used longitudinal progress notes data from a multispecialty practice in Northern California. The sample included women with stage IV gynecological cancer diagnosed after 2011 and who died before 2018. Available progress notes from prior to diagnosis to death were qualitatively analyzed. Results We identified 32 women, (median age 61 years) with mostly uterine (n=17) and ovarian (n=9) cancers and median survival of 9.2 months (min:2.9 and max:47.5). Sixteen (50%) received outpatient palliative care and 18 (56%) received hospice care. The analysis found wide variation in documentation about communication about diagnosis, prognosis, goals of care, stopping treatment, and starting hospice care. Challenges included escalating/severe symptoms, repeated urgent care/emergency department/hospital encounters, and lack of or late access to palliative and hospice care. Notes also illustrated how patient background and goals influenced care trajectory and communication. Documentation styles varied substantially, with palliative care notes more consistently documenting conversations about goals of care and psychosocial needs. Conclusion This analysis of longitudinal illness experience of women with advanced gynecological cancer suggests that clinicians may want to (1) prioritize earlier discussion about goals of care; (2) provide supplemental support to patients with higher needs, possibly through palliative care or navigation; and (3) write notes to enhance patient understanding now that patients may access all notes.


2008 ◽  
Vol 6 (2) ◽  
pp. 125-131 ◽  
Author(s):  
Brian Kelly ◽  
Francis T Varghese ◽  
Paul Burnett ◽  
Jane Turner ◽  
Marguerite Robertson ◽  
...  

ABSTRACTObjective:General practitioners (GPs) play an integral role in addressing the psychological needs of palliative care patients and their families. This qualitative study investigated psychosocial issues faced by GPs in the management of patients receiving palliative care and investigated the themes relevant to the psychosocial care of dying patients.Method:Fifteen general practitioners whose patient had been recently referred to the Mt. Olivet Palliative Home Care Services in Brisbane participated in an individual case review discussions guided by key questions within a semistructured format. These interviews focused on the psychosocial aspects of care and management of the referred patient, including aspects of the doctor/patient relationship, experience of delivering diagnosis and prognosis, addressing the psychological concerns of the patients' family, and the doctors' personal experiences, reactions, and responses. Qualitative analysis was conducted on the transcripts of these interviews.Results:The significant themes that emerged related to perceived barriers to exploration of emotional concerns, including spiritual issues, and the discussion of prognosis and dying, the perception of patients' responses/coping styles, and the GP's personal experience of the care (usually expressed in terms of identification with patient).Significance of results:The findings indicate the significant challenges facing clinicians in discussions with patients and families about death, to exploring the patient's emotional responses to terminal illness and spiritual concerns for the patient and family. These qualitative date indicate important tasks in the training and clinical support for doctors providing palliative care.


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 ◽  
Vol 28 (4) ◽  
pp. 2699-2707
Author(s):  
Maggie C. Robinson ◽  
Maryam Qureshi ◽  
Aynharan Sinnarajah ◽  
Srini Chary ◽  
Janet M. de Groot ◽  
...  

Palliative care has an interdisciplinary tradition and Canada is a leader in its research and practice. Yet even in Canada, a full interdisciplinary complement is often lacking, with psychosocial presence ranging from 0–67.4% depending on the discipline and region. We sought to examine the most notable gaps in care from the perspective of Canadian palliative professionals. Canadian directors of palliative care programs were surveyed with respect to interdisciplinary integration. Participants responded in writing or by phone interview. We operationalized reports of interdisciplinary professions as either “present” or “under/not-represented”. The Vaismoradi, Turunen, and Bondas’ procedure was used for content analysis. Our 14 participants consisted of physicians (85.7%), nurses (14.3%), and a social worker (7.1%) from Ontario (35.7%), British Columbia (14.3%), Alberta (14.3%), Quebec (14.3%), Nova Scotia (14.3%), and New Brunswick (7.1%). Psychology and social work were equally and most frequently reported as “under/not represented” (5/14, each). All participants reported the presence of medical professionals (physicians and nurses) and these groups were not reported as under/not represented. Spiritual care and others (e.g., rehabilitation and volunteers) were infrequently reported as “under/not represented”. Qualitative themes included Commonly Represented Disciplines, Quality of Multidisciplinary Collaboration, Commonly Under-Represented Disciplines, and Special Concern: Psychosocial Care. Similar to previous reports, we found that (1) psychology was under-represented yet highly valued and (2) despite social work’s relative high presence in care, our participants reported a higher need for more. These finding highlight those psychosocial gaps in care are most frequently noted by palliative care professionals, especially psychology and social work. We speculate on barriers and enablers to addressing this need.


2021 ◽  
Author(s):  
Kee Kiat Yeo ◽  
Darcy E Burgers ◽  
Katelynn Brodigan ◽  
Karen Fasciano ◽  
A Lindsay Frazier ◽  
...  

Abstract Adolescent and young adult (AYA; ages 15-39) patients represent a population that experiences significant challenges in cancer care and research, exemplified by poorer clinical outcomes as well as unmet psychosocial and reproductive health needs. Despite central nervous system (CNS) tumors being one of the most common malignancies diagnosed in the age group, there is a clear paucity of AYA CNS tumor-specific publications, especially those related to the unique psychosocial and reproductive health needs of this population of patients. In this review, we examine various aspects of AYA oncological care including tumor biology, clinical outcome, clinical trials enrollment rate, site of care, unique psychosocial needs, and oncofertility. We assess the current state of these issues, highlight areas of deficiencies, and outline the steps needed to address these concerns. We emphasize the importance of comprehensive molecular testing as part of the diagnostic work-up, expansion of clinical trial availability, access to psychosocial care and oncofertility expertise, and the development of AYA-specific clinical research to define best practices and advancing care for this population.


2013 ◽  
Vol 12 (3) ◽  
pp. 223-231 ◽  
Author(s):  
Genevieve N. Thompson ◽  
Kerstin Roger

AbstractObjectives:A challenge in understanding the needs of dementia family caregivers (DFC) within the purview of dementia as a terminal illness rests on the fact that literature in this area is dispersed across disciplines and not specifically grounded within the realm of palliative care. The objective of this paper is to describe the domains of DFC needs and their impact on the delivery of palliative care services.Methods:A literature search pertaining to dementia family caregivers and palliative/end-of-life care was conducted using the databases Medline, CINHAL, Ageline, PsychInfo, and Scopus for articles published in the English language between 1997 and 2011.Results:Supporting family caregivers of individuals with dementia throughout the disease trajectory requires consideration of caregivers : (1) physical, emotional, and psychological needs; (2) information and decisional support needs; and (3) instrumental support needs. The unique nature and prolonged duration of these needs directly influences the palliative care services and supports required by these family caregivers.Significance of results:Understanding the scope of DFC needs help further our understanding of how these needs may impact the delivery of palliative care services, and assists in developing a model of care for those dying from dementia and for their family caregivers.


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