Advance Care Planning after Lung Transplantation: A Case of Missed Opportunities

Song, Mi‐Kyung; Dabbs, Annette J. De Vito

doi:10.1177/152692480601600306

Cited by 13 publications

(2 citation statements)

References 25 publications

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“…The low rate of reporting a completed advance directive by adults with CF is consistent with other studies showing low rates of advance directive completion in the general population, [3][4][5]19,20 in patients following lung transplantation, 21 and in patients with progressive childhood diseases such as Duchenne's muscular dystrophy. 22 The low rate highlights the discontinuity between a patient thinking about ACP and completing a document for their medical record.…”

Section: Sawicki Et Al 1138supporting

confidence: 78%

Advance Care Planning in Adults with Cystic Fibrosis

Sawicki

Dill

Asher

et al. 2008

Journal of Palliative Medicine

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Background: Because many patients with cystic fibrosis (CF) continue to survive into adulthood, discussion of end-of-life care decisions between clinicians and patients becomes a crucial part of CF adult care. Advance care planning (ACP) promotes alignment of patient care at the end of life with an individual's goals, however minimal research exists on ACP in CF. Methods: We surveyed adults enrolled in the Project on Adult Care in Cystic Fibrosis (PAC-CF). We assessed experiences with ACP processes and communication and sought to identify factors associated with completion of an advance directive. Results: The mean age of respondents (n ϭ 234) was 34 years and the mean forced expiratory volume in 1 second (FEV 1 ) was 64% predicted. Seventy-four percent reported that they had spoken to someone, generally a family member, about the care they would want if they became too ill to make decisions for themselves. However, only 30% reported completing an advance directive. Although 79% reported feeling comfortable talking to their clinician about ACP, only 28% said that their CF clinicians have asked about ACP. Having specific wishes about treatment decisions (odds ratio [OR] 7.8, 95% confidence interval [CI] 1.9-32.1) and reporting that a clinician had discussed ACP (OR 4.4, 95% CI 1.5-12.6) were significantly associated with reporting the completion of an advance directive. Discussion: Though the majority of adults with CF report thinking about and communicating with family about advance care wishes, only a minority report completing an advance directive. Few adults with CF report being asked about ACP by their clinicians. Formulating specific wishes and discussing ACP with a clinician are strongly associated with completing an advance directive. Efforts to improve clinician communication with CF adults around ACP are needed to ensure that discussion of advance directives becomes an integral component of adult CF care.

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Section: Sawicki Et Al 1138supporting

confidence: 78%

Advance Care Planning in Adults with Cystic Fibrosis

Sawicki

Dill

Asher

et al. 2008

Journal of Palliative Medicine

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“…Additionally, the availability of lung transplantation for advanced CF lung disease may complicate patient-physician communication about treatment preferences. 12 …”

Section: Introductionmentioning

confidence: 99%

Caregiver Perspectives on Discussions About the Use of Intensive Treatments in Cystic Fibrosis

Dellon

Shores

Nelson

et al. 2010

Journal of Pain and Symptom Management

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Context Intensive treatments intended to sustain life are often used for patients with advanced cystic fibrosis (CF). There are no guidelines for selecting patients whose survival and quality of life may be enhanced by such treatments or for communication with patients and caregivers about possible treatment outcomes. Objectives We aimed to describe caregivers’ perspectives on decision making for the use of intensive treatments for patients with advanced CF lung disease. Methods We conducted semi-structured interviews with 36 caregivers of 36 patients who died of CF about treatment preference discussions and solicited recommendations for improving discussions. Results Twenty (56%) patients received intensive treatments during the last week of life. Twenty-two (61%) caregivers reported ever having discussed intensive treatment preferences with a physician, and 17 (77%) of these discussions were initiated during an acute illness. Only 14 (39%) of all patients participated. Caregivers expressed less certainty about consistency of treatments with patient preferences when patients did not participate. Twenty-nine (81%) caregivers endorsed first discussing treatment preferences during a period of medical stability. Conclusions Discussions about preferences for the use of intensive treatments for patients with CF often take place during episodes of acute illness and may be delayed until patients themselves are too ill to participate. Bereaved caregivers suggest first addressing intensive treatment preferences during a stable period so that patient preferences are understood and unwanted treatments are minimized.

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