Table 1 Survey questions on preferences and priorities for end-of-life care

a. ‘Life’ priorities at the end-of-life

• When people are faced with a serious illness like cancer with limited time to live, they may have to make difficult decisions and prioritise some things over others. In this situation, how would you order the following four aspects by their level of importance to you, the first being the most important (1) and the last being the least important (4): keeping a positive attitude; having pain and discomfort relieved; having practical matters resolved; making sure relatives and friends are not worried or distressed?

b. Care: preferences, priorities and focus

• If you had a serious illness, for example cancer, and were likely to have less than one year to live, would you like to be informed that you had limited time left?

• Would you like to be informed about what symptoms you were likely to experience?

• Would you like to be informed about the options available for care and how they might effect you? These options might be services available, places where you could be looked after, treatments and medication.

• Keeping in mind a situation of serious illness with less than one year to live, please consider that you were able to make decisions. Who would you like to make decisions about your care? yourself; your spouse or partner; other relatives; friends; the doctor; other.

• What if you had lost your ability to make decisions, who would you most like to make decisions about your care? yourself (by specifying wishes before losing ability – for example in a living will; your spouse or partner; other relatives; friends; the doctor; other.

• In a situation of serious illness, like cancer with less than one year to live, where do you think you would prefer to die if circumstances allowed you to choose? And where would you least want to die: in your own home; in the home of a relative or friend; in a hospice or palliative care unit (I.e. places with specialist care and beds for dying patients); in a hospital; in a nursing home; somewhere else?

• What would matter most to you in the care available? Please choose from the following three aspects the one that would matter most to you: having as much information as you want; choosing who makes decisions about your care; dying in the place you want? And in second place?

• When people are faced with a serious illness like cancer with limited time to live, they may have to make difficult decisions and prioritise some things over others. In this situation, would it be more important to extend your life or to improve the quality of life for the time you had left: to extend life; to improve the quality of life; both are equally important; you don’t know?

c. Most concerning symptoms and problems

• Which of the following nine symptoms or problems you think would concern you the most: having no energy; being in pain; changes in the way you look; having no appetite at all; being a burden to others; being unable to get your breath; being alone; feeling as if you want to be sick; being worried and distressed?