Spirituality: The Effects of Another’S Pain and Suffering on Palliative Care Providers

Author(s):  
DARRYL I. OWENS ◽  
HADLEY KIFNER
2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Anne M. Finucane ◽  
Connie Swenson ◽  
John I. MacArtney ◽  
Rachel Perry ◽  
Hazel Lamberton ◽  
...  

Abstract Background Specialist palliative care (SPC) providers tend to use the term ‘complex’ to refer to the needs of patients who require SPC. However, little is known about complex needs on first referral to a SPC service. We examined which needs are present and sought the perspectives of healthcare professionals on the complexity of need on referral to a hospice service. Methods Multi-site sequential explanatory mixed method study consisting of a case-note review and focus groups with healthcare professionals in four UK hospices. Results Documentation relating to 239 new patient referrals to hospice was reviewed; and focus groups involving 22 healthcare professionals conducted. Most patients had two or more needs documented on referral (96%); and needs were recorded across two or more domains for 62%. Physical needs were recorded for 91% of patients; psychological needs were recorded for 59%. Spiritual needs were rarely documented. Referral forms were considered limited for capturing complex needs. Referrals were perceived to be influenced by the experience and confidence of the referrer and the local resource available to meet palliative care needs directly. Conclusions Complexity was hard to detail or to objectively define on referral documentation alone. It appeared to be a term used to describe patients whom primary or secondary care providers felt needed SPC knowledge or support to meet their needs. Hospices need to provide greater clarity regarding who should be referred, when and for what purpose. Education and training in palliative care for primary care nurses and doctors and hospital clinicians could reduce the need for referral and help ensure that hospices are available to those most in need of SPC input.


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.


2019 ◽  
Vol 15 (10) ◽  
pp. 531-538 ◽  
Author(s):  
Vinita Singh ◽  
Ali J. Zarrabi ◽  
Kimberly A. Curseen ◽  
Roman Sniecinski ◽  
Justine W. Welsh ◽  
...  

PURPOSE: Several states, particularly in the Southeast, have restrictive medical marijuana laws that permit qualified patients to use specific cannabis products. The majority of these states, however, do not provide avenues for accessing cannabis products such as in-state dispensaries. METHODS: We conducted a survey of patients registered for medical marijuana (low tetrahydrocannabinol [THC] oil cards) in an ambulatory palliative care practice in Georgia (one of the states with restrictive medical marijuana laws). RESULTS: We had a total of 101 responses. Among our sample of patients who use cannabis as part of a state-approved low THC oil program, 56% were male and 64% were older than age 50 years. Advanced cancer was the most common reason (76%) for granting the patients access to a low THC oil card. Although patients reported cannabis products as being extremely helpful for reducing pain, they expressed considerable concerns about the legality issues (64%) and ability to obtain THC (68%). Several respondents were using unapproved formulations of cannabis products. For 48% of the patients, their physician was the source of information regarding marijuana-related products. Furthermore, they believed that their health care providers and family members were supportive of their use of cannabis (62% and 79%, respectively). CONCLUSION: Patients on Georgia’s medical marijuana program are most concerned about the legality of the product and their ability to obtain marijuana-related products. Therefore, we recommend that states with medical marijuana laws should provide safe and reliable access to cannabis products for qualifying patients.


2012 ◽  
Vol 60 (1_suppl) ◽  
pp. 108-123 ◽  
Author(s):  
Yasmin Gunaratnam

The practice of live sociology in situations of pain and suffering is the focus of this article. An outline of the challenges of understanding pain is followed by a discussion of Bourdieu's ‘social suffering’ (1999) and the palliative care philosophy of ‘total pain’. Using examples from qualitative research on disadvantaged dying migrants in the UK, attention is given to the methods that are improvised by dying people and care practitioners in attempts to bridge intersubjective divides, where the causes and routes of pain can be ontologically and temporally indeterminate and/or withdrawn. The paper contends that these latter phenomena are the incitement for the inventive bridging and performative work of care and live sociological methods, both of which are concerned with opposing suffering. Drawing from the philosophy of total pain, I highlight the importance of (1) an engagement with a range of materials out of which attempts at intersubjective bridging can be produced, and which exceed the social, the material, and the temporally linear; and (2) an empirical sensibility that is hospitable to the inaccessible and non-relational.


2021 ◽  
Vol 162 (44) ◽  
pp. 1769-1775
Author(s):  
Orsolya Horváth ◽  
Enikő Földesi ◽  
Katalin Hegedűs

Összefoglaló. A palliatív ellátások korai bevonása az onkológiai betegek ellátásába előnnyel jár mind a beteg életminősége, mind a kezelés színvonala, mind a költséghatékonyság szempontjából. Szükség van egy olyan modellre, mely alapján a megfelelő időben, a megfelelő beteg a megfelelő minőségű palliatív ellátásban részesül. Ebben a közleményben a palliatív ellátás korai integrációjának előnyei, szintjei és a speciális palliatív ellátás fogalmának ismertetése után a leginkább elterjedt beutalási modellek előnyeit és hátrányait mutatjuk be a nemzetközi szakirodalom alapján. A speciális palliatív ellátást igénylő betegek kiszűrésére szolgáló, prognózisalapú modellek hátránya, hogy nincs elég kapacitás az ilyen módon beutalt nagyszámú beteg ellátására, ezért széles körben nem terjedtek el. A tüneteken alapuló modellek sokszor bonyolultak és a mindennapi klinikai gyakorlatban nem használatosak. Az új kutatások alapján egyszerű, gyakorlatias kérdéssorokat alkalmaznak, melyekkel könnyen kiemelhetők, akik profitálnak a speciális palliatív intervencióból. Ezek közül a Yale egyetemi és a PALLIA -10 modellt ismertetjük részletesen. Amennyiben az aktív onkológiai ellátást végzők a megfelelő palliatív beutalási kritériumokat ismerik és alkalmazzák, a betegek időben jutnak a megfelelő komplex kezeléshez anélkül, hogy a palliatív ellátórendszer túlterhelődne. Orv Hetil. 2021; 162(44): 1769–1775. Summary. Early integration of palliative care into the trajectory of cancer care brings advantages into the patients’ quality of life, the level of care and cost-efficiency, too. On the basis of a predefined model, the right patient may receive the right level of palliative care at the right time. Having defined the advantages, the levels of early integration of palliative care and the concept of special palliative care, we also aim to describe the advantages and disadvantages of the most common referral models on the basis of international literature in this article. The drawback of prognosis-based models to identify patients needing special palliative care is the lack of capacity to provide care for the large number of patients so recognised; therefore they have not become widespread. Needs-based models tend to be complicated and thus rarely applied in everyday clinical practice. On the basis of new researches, simple, pragmatic questionnaires are utilised through which the patients who could benefit from special palliative care interventions are easy to identify. Here we give a detailed report of the Yale University and PALLIA-10 models. On condition that appropriate palliative referral criteria are known and applied by active oncology care providers, patients may receive adequate complex care without the palliative care system being overloaded. Orv Hetil. 2021; 162(44): 1769–1775.


2018 ◽  
Vol 34 (1) ◽  
pp. 62-69 ◽  
Author(s):  
Erin Relyea ◽  
Brooke MacDonald ◽  
Christina Cattaruzza ◽  
Denise Marshall

Schizophrenia is a serious chronic mental illness that results in marginalization and stigma for sufferers. It is the seventh leading cause for disability worldwide. The symptoms of the illness, including hallucinations, delusions, and extremely disordered thinking and behavior, may also introduce barriers to accessing treatment, education, housing, and employment. Little is known about end-of-life care for individuals with schizophrenia. To address this gap, a scoping review was conducted to enhance understanding of hospice and palliative care for patients with schizophrenia. From this scoping review, 342 unique titles and abstracts were identified through a search of 20 databases, including 11 social science databases, 6 medical databases, and 3 gray literature databases. A total of 32 articles met the inclusion criteria and the following 4 themes were identified: Stigma affecting quality of care and access to care; Issues related to consent and capacity for the patient’s end-of-life care decisions and to appoint substitute decision makers; Best practices for psychosocial interventions, pharmacology, family and health-care collaborations, goals of care, setting, and smoking; and Barriers to care, including setting, communication, provider education, and access to care. The review suggests the importance of mandatory interdisciplinary training practices and policy standards outlining cooperative communication across health-care providers. It highlights gaps in evidence-based research on psychosocial interventions and collaborative frameworks to enable the provision of quality end-of-life care for individuals with schizophrenia.


2018 ◽  
Vol 32 (5) ◽  
pp. 342-351
Author(s):  
Panita Krongyuth ◽  
Pimpan Silpasuwan ◽  
Chukiat Viwatwongkasem ◽  
Cathy Campbell

Purpose The purpose of this paper is to explore the needs of people with cancer in advanced stages and to analyze factors that influence them. Design/methodology/approach A concurrent mixed-method design was used. Descriptive design was conducted in Ubon Ratchathani Province, Thailand. Data were collected from a convenience sample of patients with advanced cancer of any tissue or organ. Questionnaires were completed by 110 patients aged 60 years and above (response rate 110/130=84.6 percent). In-depth interviews were conducted with a total of eight patients. Content analysis of semi-structured interviews of a sub-sample was subsequently performed to better understand the real needs of patients with advanced stages of cancer at home setting. Findings The majority (77.5 percent) reported a preference to spend their final days at home. The four most common palliative care needs were more information about disease and medical treatment (98.2 percent), more treatment for pain (97.3 percent), health education for family caregivers (95.5 percent) and health volunteers visit at home (95.5 percent). Content analysis of the qualitative data suggested that patient needs health care providers to deliver open communication, pain management and provide psychosocial supports. Originality/value The result showed that patients-related variables are associated with the palliative care needs in patients with advanced stages of cancer. Communication skills and pain management are the key components to support the need for palliative care at home and to benefit the quality of life in terminally ill patients.


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