Communicating End-of-Life Preferences

McDonald, Deborah Dillon; Deloge, Jo-Ann; Joslin, Nicole; Petow, Wendy; Severson, Judith Scott; Votino, Roberta; Shea, Michael; Drenga, Jessica M. L.; Brennan, Mary; Moran, Andrea B.; Signore, Enrico Del

doi:10.1177/0193945903254062

Cited by 20 publications

(22 citation statements)

References 33 publications

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“…While some participants expressed their preference to have discussions with their family and perceived that their family members are to be the final decision-makers, others reported that such end-of-life discussions with their family members remain culturally inappropriate. This is in contrast to previous studies, which reported that people tend to prefer to discuss any issues related to end-of-life with family members rather than with health professionals (Kahana et al, 2004;McDonald et al, 2003;Salmond and David, 2005).…”

Section: Discussioncontrasting

confidence: 98%

Talking about end-of-life care: the perspectives of older South Asians living in East London

Venkatasalu

Arthur

Seymour

2013

Journal of Research in Nursing

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This document may differ from the final, published version of the research and has been made available online in accordance with publisher policies. To read and/or cite from the published version of the research, please visit the publisher's website (a subscription may be required.) East LondonThe National End-of-life Care Strategy for England identifies that a lack of open discussion about death and dying can be a barrier to achieving good quality end-oflife care. South Asians constitute the single largest ethnic minority group in the United Kingdom, yet little is known about their attitudes and expectations towards the discussion of death and dying. In this study, set in East London, five focus groups and 29 in-depth, semi-structured interviews were conducted with total of 55 older adults aged between 52 and 78 years. Participants from six South Asian ethnic groups were recruited from 11 local community organisations. Constructive grounded theory was used as data analysis approach. Findings revealed two key themes which capture the perspectives older South Asian study participants had towards end-of-life care discussions. The theme 'avoidance as a cultural norm' relates to the relative absence of discussions around death and dying experienced participants. Participants neither expected to have discussions about their own death and dying within their family, nor to assume any involvement in related issues of decision-making. The second theme 'avoidance as protection' relates to beliefs and experiences about the delegation of decision making to family members. Future research should explore the perspectives of second-generation adult children towards end-of-life care discussions.

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Section: Discussioncontrasting

confidence: 98%

Talking about end-of-life care: the perspectives of older South Asians living in East London

Venkatasalu

Arthur

Seymour

2013

Journal of Research in Nursing

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“…They also found that many patients prefer that surrogates have some leeway in following their advance directives. Other studies report that discussions regarding EOL care often do not include specific treatment preferences (Hines et al, 2001; McDonald et al, 2003) and may occur only in casual conversations (High & Turner, 1987). …”

Section: Introductionmentioning

confidence: 99%

Surrogate Decision Makers' Understanding of Dementia Patients' Prior Wishes for End-of-Life Care

Black

Fogarty²,

Phillips³

et al. 2009

J Aging Health

107

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Objectives-This study examines how surrogate decision-makers for dementia patients developed an understanding of patient preferences about end-of-life (EOL) care and patient wishes.Methods-Semi-structured interviews were conducted with 34 surrogate decision-makers for hospice-eligible nursing home patients with dementia. The data were content analyzed.Results-Most surrogates reported that patients had previously completed an advance directive (59%), discussed preferences for EOL care (56%), or done both (38%). Catalysts for and barriers to completing an advance directive or having EOL care discussions included factors that were both intrinsic and extrinsic to the patient. The most commonly reported wish for EOL care was to not be kept alive by "machines" or "extraordinary measures."Discussion-Health care providers may be able to assist patients and families by normalizing discussions of dying, encouraging advance care planning, helping them identify goals for EOL care, and providing information to support treatment decisions consistent with patients' wishes.

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“…When residents discuss the deaths of others, it is an opportune time to initiate discussion about EOL choices because this is a time when elders are open to discussing their own preferences. 9,13 However, residents in this study experienced minimal opportunities for discussing EOL healthcare choices. Most of their discussions had been about taking care of the practical preparations for end of life including financial and funeral planning, consistent with findings in the study by Malcomson and Bisbee.…”

Section: Differing Perspectivesmentioning

confidence: 95%

“…9,13 Analysis of focus group data from three different elder populations with ethnic and socioeconomic diversity revealed four categories of influence for their participation in advance care planning: concern for self; concern for others; expectations about how advance care planning would impact them; and their own anecdotes, stories, and experiences. 14 Additional factors that facilitate EOL discussion are a straightforward approach and having someone else initiate and facilitate the discussion.…”

Section: Background and Significancementioning

confidence: 99%

“…14 Additional factors that facilitate EOL discussion are a straightforward approach and having someone else initiate and facilitate the discussion. 13 Content for advance healthcare planning and EOL discussion can include listening to the elder's story, their fears and anxieties, the importance of family and friends, and the loss of dreams; addressing what to expect in the progression of end of life; and exploring how the elder wishes to handle decline of health when it comes. Elders need uninterrupted time and someone who is skilled in communicationVactive listening, encouraging disclosure and allowing silence, providing written material, and addressing inconsistency in verbal and nonverbal messages.…”

Section: Background and Significancementioning

confidence: 99%

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End-of-Life Discussion in Assisted Living Facilities

Schaffer

Keenan

Zwirchitz

et al. 2012

Journal of Hospice & Palliative Nursing

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Discussion about end-of-life healthcare choices can contribute to honoring preferences and facilitating a peaceful dying process for residents in assisted living facilities. Focus groups were used to explore perspectives on end-of-life discussion with residents, family members, and staff members in three assisted living facilities.Residents were most concerned about practical matters such as decisions about inheritance, financial matters, and funerals. They expressed that they were ready to accept death but felt that their family members were resistant to discussion. Family members were most concerned about good care for their elderly relative. Staff members expressed confidence in providing end-of-life care and supporting families but less confidence in initiating discussion about end-of-life decisions. Residents reported that physicians most often focused on illness progression and treatment. Residents and family members may be at different stages in accepting the dying process. To ensure that residents' choices for end-of-life care are honored, the perspectives of all involved, including family and staff members as well as organizational practices, must be considered in the development of strategies and resources for promoting discussion about end-of-life healthcare choices for residents in assisted living facilities. KEY WORDSassisted living facilities, end-of-life decisions, end-of-life discussion C oncerns about how to pay for healthcare for an aging population have brought increased visibility to making choices about treatment and healthcare at the end of life. It is challenging to initiate and facilitate discussion about end-of-life (EOL) healthcare choices in a healthcare organizational culture that has traditionally emphasized treatment and cure. Without discussion between elders, family members, and health professionals, it is unlikely that preferences for EOL care choices will be honored. Elders may choose to live in assisted living facilities (ALFs) in their later years but may not have discussed their expectations and wishes for care when their care needs increase because of a decline in physical and/or mental functioning. As more ALFs provide opportunities for residents to ''age in place,'' discussion in the assisted living setting about EOL treatment and care options will be needed to honor residents' preferences when they are terminally ill. 1-8 Knowing how to talk with patients and families about dying is challenging in a culture that tends to deny aging and the inevitability of death. BACKGROUND AND SIGNIFICANCE

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Communicating End-of-Life Preferences

Cited by 20 publications

References 33 publications

Talking about end-of-life care: the perspectives of older South Asians living in East London

Talking about end-of-life care: the perspectives of older South Asians living in East London

Surrogate Decision Makers' Understanding of Dementia Patients' Prior Wishes for End-of-Life Care

End-of-Life Discussion in Assisted Living Facilities

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