Families Speak About Inpatient End-of-Life Care

London, Marla R.; Lundstedt, Janyce

doi:10.1097/01.ncq.0000263105.08096.b1

Cited by 9 publications

(5 citation statements)

References 13 publications

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“…The interaction between informal and professional care at the end of life is of crucial importance for family members (Andershed, 2006;Heyland et al, 2006;London & Lundstedt, 2007). In the encounter with professional care, family carers take with them their previous experiences of informal care, illness, and death and, in addition, their unique knowledge about the sick person.…”

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confidence: 99%

The Encounter Between Informal and Professional Care at the End of Life

2008

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The purpose of this study was to obtain and describe in-depth knowledge about family carers' experiences of the encounter, in a hospital, between informal and professional care at the end of life. A hermeneutic approach was chosen, and we conducted interviews with 27 family carers 6 to 8 months after their loved one's death. In the encounter, the family carers made their own assessment of their loved one's condition and situation. The professionals' attitudes could both promote and impede the interaction between the two forms of care. Family carers' care actions were characterized by struggling to get treatment, being left behind, being partners, keeping the illness at a distance, hovering beside their loved one, waiting for death, and being experts and protectors. The main interpretation of the findings is that family carers possess practical knowledge about what care is the best, or least harmful, for their loved one. This can be linked to what Aristotle called phronesis.

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confidence: 99%

The Encounter Between Informal and Professional Care at the End of Life

2008

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“…The importance of giving attention to how we communicate with patients can also have a positive impact on perceptions by patients and families. Patients and families express a feeling of increased dignity when they recognize the impact the discussion has on the clinician (London & Lundstedt, 2007). Research findings suggest increased satisfaction with care when respect is demonstrated.…”

Section: Review Of Literaturementioning

confidence: 99%

“…Research findings suggest increased satisfaction with care when respect is demonstrated. High marks for satisfaction with care have also been received regarding compassion when respect is shown by the team (London & Lundstedt, 2007;Murphy & Aquino-Russel, 2008). Some authors emphasize that when attention is not given to communicating in a way that facilitates the narrative content, one has the potential to increase the patient's suffering and inability to express the lived experience in a meaningful way (Ferrell & Coyle, 2008;Yang et al, 2010).…”

Section: Review Of Literaturementioning

confidence: 99%

“…Respect, in turn, fosters the patient's confidence in his/her ability to make decisions reflective of his/her deeply held values. Communication techniques to elicit confidence and expression include asking openended questions (London & Lundstedt, 2007;Pollack et al, 2011), repeating the same questions in different ways, and negotiating language with each other to improve shared decision-making (Pesut, 2009). Expressing in one's own words what you have heard demonstrates your interest in understanding the narrative and provides the opportunity for the patient to correct any misunderstanding (Coulehan, 2003).…”

Section: Reflectionmentioning

confidence: 99%

“…Becoming familiar with the language and standardized way of "staying in a conversation" with patients can help in a structured, formal interview as well as in an informal setting. Along with the communication strategies already mentioned, techniques for engagement within the patient narrative might include tailored scripts, mnemonics, and cue cards (Eid, Petty, Hutchins, & Thompson, 2009;Fields & Johnson, 2012;Jameel, Farooq, & Ullah, 2011;Kaplan, 2010;Krimshtein, Luhrs, Puntillo, Cortez, Livote, Penrod, et al, 2011;London & Lundstedt, 2007;Park, Gupta, Mandani, Haubner, & Peckler, 2010;Pollack et al, 2011).…”

Section: Intentional Silence and Other Techniquesmentioning

confidence: 99%

See 2 more Smart Citations

Wading in the Water: A Case Study Approach to Engaging More Fully in the Patient Narrative

Tadel

2014

Illness, Crisis & Loss

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Working in the patient narrative has become a familiar part of the common language used in the context of caring for patients. Working in the patient narrative encompasses sharing conversation that allows exploration of the entire patient experience as it relates to health and illness. However, the complexity of engaging in end-of-life conversations, standing steady with conflict, remaining present, maintaining neutrality, and actively listening remain challenging concepts in practice even though they are integral to effectively doing so. Literature review has identified and defined key elements of interactions that can lead to significant opportunities to "wander more fully" in the patient narrative. Two case studies reviewed therein demonstrate ways in which palliative care encounters and end-of-life discussions afford the interdisciplinary team members purposeful engagement with patients. One case discusses taking risks to delve more deeply into patient's fears related to dying. This exploration lays the foundation for assuring goals of care are aligned with individual patient values. The other case demonstrates the use of symbols to share dialog related to an individual's tasks of dying. When directed, intentional facilitation occurs, the patient's unique holistic needs and values are identified, and goals of care can be clarified. In conclusion, highlights of research and clinical applications provide advantageous practice implications.

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