Facing uncertainty: The lived experience of palliative care

McKechnie, Roz; MacLeod, Rod; Keeling, Sally

doi:10.1017/s1478951507000429

Cited by 32 publications

(20 citation statements)

References 40 publications

(28 reference statements)

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“…There have been several other studies exploring the perceptions of patients with diminished life expectancy regarding medication [ 15 – 18 ]. Of note, Sand and colleagues [ 16 ] explored medication use in a group of patients with advanced cancer, and showed there was a desire to reduce the number of tablets they took, as the medication reminded them of their illness, while Qi and colleagues [ 17 ] showed the majority of older people were accepting of having one of their medications deprescribed.…”

Section: Discussionmentioning

confidence: 99%

‘I don’t think I’d be frightened if the statins went’: a phenomenological qualitative study exploring medicines use in palliative care patients, carers and healthcare professionals.

et al. 2016

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BackgroundThere is a growing body of evidence suggesting patients with life-limiting illness use medicines inappropriately and unnecessarily. In this context, the perspective of patients, their carers and the healthcare professionals responsible for prescribing and monitoring their medication is important for developing deprescribing strategies. The aim of this study was to explore the lived experience of patients, carers and healthcare professionals in the context of medication use in life-limiting illness.MethodsIn-depth interviews, using a phenomenological approach: methods of transcendental phenomenology were used for the patient and carer interviews, while hermeneutic phenomenology was used for the healthcare professional interviews.ResultsThe study highlighted that medication formed a significant part of a patient’s day-to-day routine; this was also apparent for their carers who took on an active role-as a gatekeeper of care-in managing medication. Patients described the experience of a point in which, in their disease journey, they placed less importance on taking certain medications; healthcare professionals also recognize this and refer it as a ‘transition’. This point appeared to occur when the patient became accepting of their illness and associated life expectancy. There was also willingness by patients, carers and healthcare professionals to review and alter the medication used by patients in the context of life-limiting illness.ConclusionsThere is a need to develop deprescribing strategies for patients with life-limiting illness. Such strategies should seek to establish patient expectations, consider the timing of the discussion about ceasing treatment and encourage the involvement of other stakeholders in the decision-making progress.

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Section: Discussionmentioning

confidence: 99%

‘I don’t think I’d be frightened if the statins went’: a phenomenological qualitative study exploring medicines use in palliative care patients, carers and healthcare professionals.

et al. 2016

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“…There is little focus on how to help and support the family unit to deal with the situation caused by the illness. Patients live with their illness within their family (Kaakinen & Hanson, 2015), and decisions on applying for and making use of measures provided by the health care service are often made jointly by the family as a whole (Kaakinen & Hanson, 2015;Parahoo, 2008 (Drabe, Wittmann, Zwahlen, Büchi, & Jenewein, 2013;Gjertsen, 2009;McKechnie, MacLeod, & Keeling, 2007). The quality of family relationships has been found to be significant in how well families manage to adapt to situations involving nursing and death in the home (Collier et al, 2015;Gott, Seymour, Bellamy, Clark, & Ahmedzai, 2004;Milligan et al, 2016).…”

Section: Norwegian Health Care Policy Objectives For Family Caregivingmentioning

confidence: 99%

A Valuable but Demanding Time Family Life During Advanced Cancer in an Elderly Family Member

Fjose

Eilertsen

Kirkevold

et al. 2016

Advances in Nursing Science

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This study explores experiences of elderly patients with cancer and their family members with regard to what is important and difficult in the family relationships during the palliative phase. Family group interviews were conducted with 26 families. The data were analyzed using qualitative content analysis. Three themes emerged: "Ensuring a positive final time together," "Avoiding tension and conflict," and "Concealing thoughts, feelings, and needs." The main theme, "A valuable but demanding time," indicates that although families find this phase of life challenging, they emphasize the importance of ensuring that this time is spent together in a positive way as a family.

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“…Compartiendo el trabajo con los profesionales del servicio de Cuidados Paliativos puede apreciarse la cotidianeidad de las dudas y la falta de certezas del equipo médico respecto al estado clínico, las terapias a seguir y la evolución de algunos pacientes, debido en parte al perfil de los usuarios de estos servicios: típicamente se trata de pacientes con síntomas de difícil manejo, con estados clínicos confusos o múltiples patologías, y en ocasiones al poco tiempo para evaluaciones más exhaustivas dada la gravedad del cuadro. La experiencia de los pacientes con enfermedades terminales, por su parte, está marcada por la incertidumbre respecto al avance y la evolución de la enfermedad y los síntomas, el control del dolor y el pronóstico (MCKECHNIE; MACLEOD; KEELING, 2007). Pese al ideal que sostienen los Cuidados Paliativos, 2 los pacientes que conocen y "aceptan" la inminencia de su muerte son casos poco frecuentes.…”

Section: Cuerpo E Incertidumbreunclassified

Incertidumbre, esperanza y corporalidad en el final de la vida

Alonso

2010

Physis

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Resumo: O artigo explora as relações entre corporalidade e incerteza na experiência do pacientes com doenças oncológicas avançadas, atendidos em uma unidade de Cuidados Paliativos da cidade de Buenos Aires, Argentina. A partir de uma abordagem etnográfica, interessa apresentar diferentes formas de interrogar as sensações corporais associadas à doença em contextos de forte incerteza. Primeiro, analisa-se uma forma de hipervigilância do corpo, constituído como espaço onde ler o avance da enfermidade e a morte, ligada à abordagem sintomática dos Cuidados Paliativos e as imagens do caráter expansivo do câncer. Segundo, apresenta-se uma forma de interrogar o corpo em que a experiência da incerteza e projetada em narrativas da esperança. Tentativas, precárias, ameaçantes ou reparadoras, as interpretações que os pacientes fazem de seus signos corporais apresentam tênues variações do saber biomédico, onde a dimensão emocional se revela como central na experiência do padecimento. Palavras-chave: corpo, incerteza, esperança, cuidados paliativos.

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Facing uncertainty: The lived experience of palliative care

Cited by 32 publications

References 40 publications

‘I don’t think I’d be frightened if the statins went’: a phenomenological qualitative study exploring medicines use in palliative care patients, carers and healthcare professionals.

‘I don’t think I’d be frightened if the statins went’: a phenomenological qualitative study exploring medicines use in palliative care patients, carers and healthcare professionals.

A Valuable but Demanding Time Family Life During Advanced Cancer in an Elderly Family Member

Incertidumbre, esperanza y corporalidad en el final de la vida

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