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. 2012 Sep 17:11:15.
doi: 10.1186/1472-684X-11-15.

After you: conversations between patients and healthcare professionals in planning for end of life care

Kathryn Almack  1 , Karen Cox, Nima Moghaddam, Kristian Pollock, Jane Seymour
Affiliations

After you: conversations between patients and healthcare professionals in planning for end of life care

Kathryn Almack et al. BMC Palliat Care. .

Abstract

Background: This study explores with patients, carers and health care professionals if, when and how Advance Care Planning conversations about patients' preferences for place of care (and death) were facilitated and documented.

Methods: The study adopted an exploratory case study design using qualitative interviews, across five services delivering palliative care to cancer and non-cancer patients within an urban and rural English region. The study recruited 18 cases made up of patients (N = 18; 10 men; 8 women; median age 75); nominated relatives (N = 11; 7 women; 4 men; median age 65) and healthcare professionals (N = 15) caring for the patient. Data collection included: 18 initial interviews (nine separate interviews with patients and 9 joint interviews with patients and relatives) and follow up interviews in 6 cases (involving a total of 5 patients and 5 relatives) within one year of the first interview. Five group interviews were conducted with 15 healthcare professionals; 8 of whom also participated in follow up interviews to review their involvement with patients in our study.

Results: Patients demonstrated varying degrees of reticence, evasion or reluctance to initiate any conversations about end of life care preferences. Most assumed that staff would initiate such conversations, while staff were often hesitant to do so. Staff-identified barriers included the perceived risks of taking away hope and issues of timing. Staff were often guided by cues from the patient or by intuition about when to initiate these discussions.

Conclusions: This study provides insights into the complexities surrounding the initiation of Advance Care Planning involving conversations about end of life care preferences with patients who are identified as having palliative care needs, in particular in relation to the risks inherent in the process of having conversations where mortality must be acknowledged. Future research is needed to examine how to develop interventions to help initiate conversations to develop person centred plans to manage the end of life.

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References

    1. Zhang B, Wright AA, Huskamp HA, Nilsson ME, Maciejewski ML, Earle CC, Block SD, Maciejewski PK, Prigerson HG. Health care costs in the last week of life: associations with end of life conversations. Arch Intern Med. 2009;169(5):480–488. doi: 10.1001/archinternmed.2008.587. - DOI - PMC - PubMed
    1. Detering KM, Hancock A, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ. 2010;340:c1345. doi: 10.1136/bmj.c1345. - DOI - PMC - PubMed
    1. Wright AA, Zhang B, Ray A, Mack JW, Trice E, Balboni T, Mitchell SL, Jackson VA, Block SD, Maciejewski PK. et al.Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300(14):1665–1673. doi: 10.1001/jama.300.14.1665. - DOI - PMC - PubMed
    1. Samsi K, Manthorpe J. ‘I live for today’: a qualitative study investigating older people’s attitudes to advance planning. Health Soc Care Community. 2010;19(1):1–8. - PubMed
    1. Silveira MJ, Kim SYH, Langa KM. Advance directives and outcomes of surrogate decision making before death. N Engl J Med. 2010;362(13):1211–1218. doi: 10.1056/NEJMsa0907901. - DOI - PMC - PubMed