TY - JOUR

T1 - The views of patients with severe chronic obstructive pulmonary disease on advance care planning

T2 - a qualitative study

AU - MacPherson, Anna

AU - Walshe, Catherine

AU - O'Donnell, Valerie

AU - Vyas, Aashish

PY - 2013/3

Y1 - 2013/3

N2 - Background: Chronic obstructive pulmonary disease (COPD) is a major cause of death worldwide and there are concerns that end-of-life care for these patients is inadequate. Advance care planning is encouraged, with the hope that it will improve communication and avoid unwanted interventions, which have been particular concerns; in practice, these discussions rarely occur. We have little knowledge of the views of patients with COPD on advance care planning. Understanding this could help integrate advance care planning into the routine management of patients with COPD.Aim: To explore the views of people with severe COPD about advance care planning.Design: Qualitative design, with data collection incorporating audio recorded semi-structured interviews. Analysis followed a grounded theory approach.Setting/participants: Patients with severe COPD (n = 10, Gold Standards Framework criteria) were recruited from primary and secondary care settings.Results: Participants felt they had not been given enough information about their diagnosis and prognosis, and were keen for more discussion with healthcare professionals. They wanted more involvement in decisions about their treatment when those decisions were required. Participants were happy to discuss their general views about future care, but felt uncomfortable with the traditional model of binding 'advance directives'.Conclusions: Considering advance care planning as a repeated process of discussion of prognosis, concerns and probable preferences for care would be more useful than encouraging binding advance decisions. Further research should assess the effectiveness of this approach. Local coordination of who is responsible for information provision is needed, and greater involvement of patients with COPD in management decisions as they arise.

AB - Background: Chronic obstructive pulmonary disease (COPD) is a major cause of death worldwide and there are concerns that end-of-life care for these patients is inadequate. Advance care planning is encouraged, with the hope that it will improve communication and avoid unwanted interventions, which have been particular concerns; in practice, these discussions rarely occur. We have little knowledge of the views of patients with COPD on advance care planning. Understanding this could help integrate advance care planning into the routine management of patients with COPD.Aim: To explore the views of people with severe COPD about advance care planning.Design: Qualitative design, with data collection incorporating audio recorded semi-structured interviews. Analysis followed a grounded theory approach.Setting/participants: Patients with severe COPD (n = 10, Gold Standards Framework criteria) were recruited from primary and secondary care settings.Results: Participants felt they had not been given enough information about their diagnosis and prognosis, and were keen for more discussion with healthcare professionals. They wanted more involvement in decisions about their treatment when those decisions were required. Participants were happy to discuss their general views about future care, but felt uncomfortable with the traditional model of binding 'advance directives'.Conclusions: Considering advance care planning as a repeated process of discussion of prognosis, concerns and probable preferences for care would be more useful than encouraging binding advance decisions. Further research should assess the effectiveness of this approach. Local coordination of who is responsible for information provision is needed, and greater involvement of patients with COPD in management decisions as they arise.

KW - Advance care planning

KW - chronic obstructive pulmonary disease

KW - palliative care

KW - decision making

KW - OF-LIFE CARE

KW - CONTROLLED-TRIAL

KW - RENAL-DISEASE

KW - SEVERE COPD

KW - END

KW - PERSPECTIVE

KW - PREFERENCES

KW - COMMUNICATION

KW - BARRIERS

KW - ILLNESS

U2 - 10.1177/0269216312440606

DO - 10.1177/0269216312440606

M3 - Journal article

VL - 27

SP - 265

EP - 272

JO - Palliative Medicine

JF - Palliative Medicine

SN - 0269-2163

IS - 3

ER -