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Support Care Cancer. 2012 Oct;20(10):2473-82. Epub 2012 Jan 15.

Changing preferences for information and participation in the last phase of life: a longitudinal study among newly diagnosed advanced lung cancer patients.

Author information

1
End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel, Brussels, Belgium. koen.pardon@vub.ac.be

Abstract

PURPOSE:

The objective is to explore changes over time in the information and participation preferences of newly diagnosed stage IIIb/IV non-small-cell lung cancer patients.

METHODS:

Patients were recruited by physicians in 13 hospitals and interviewed every 2 months until the fourth and every 4 months until the sixth interview.

RESULTS:

Sixty-seven patients were interviewed three times. Over a period of 4 months from diagnosis, half of patients changed their information preferences for palliative care and end-of-life decisions with a possible or certain life-shortening effect (ELDs, e.g., non-treatment decisions) in both directions, from not wanting to wanting the information, but also--and as much--from wanting to no longer wanting it. The latter were more likely to be in a better physical condition. Preferences for participation in medical decision making also changed: 50% to 78%, depending on the type of decision (general, treatment, transfer or ELD), changed their preference towards wanting more or less participation. Pain seemed to be a trigger for patients wanting more involvement, which contrasts with studies suggesting that patients who are more ill tend to give up more control.

CONCLUSIONS:

Doctors should regularly ask their advanced lung cancer patients how much information and participation they want because preferences do change in unexpected ways.

PMID:
22246616
DOI:
10.1007/s00520-011-1369-4
[Indexed for MEDLINE]
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