Table 2.

Distribution of 333 End-of-Life (EOL) Items Within Priority Topics for Public Health Surveillance, End-of-Life Survey Scan, 2006

Overarching Category With Subtopic	Definition of Subtopic	Sample Item	Perspective	No. of Items
Knowledgea (n = 16)
Awareness	Knowledge or understanding of EOL options	Do you believe you need more information in order to make the best decisions for your EOL care?	Prospective	16
Attitudeb (n = 124)
Burden	Concerns about being a burden to others	I am concerned about becoming a burden physically or emotionally on my family because of my illness.	Prospective	11
Concerns and Fears	General concerns and fears about death or dying	I am concerned that my life will be inappropriately prolonged by the use of machines.	Prospective	35
		How much, if at all, does each of these medical matters worry you when you think about your death? The possibility of great physical pain before you die	Retrospective	3
Desires	Expectations about EOL care	How important would each of the following be to you when dealing with your own dying? [Choosing your treatment options]	Prospective	65
		Did [the patient] have specific wishes or plans about the types of medical treatment (he/she) wanted while dying?	Retrospective	10
Behaviorc (n = 57)
Communications	Communication with health care provider or family members about advance directive	Who, if anyone, have you told that you have signed either or both of these documents?	Prospective	2
		Had you or [the patient] discussed a living will or durable power of attorney for health care with a doctor caring for [the patient]?	Retrospective	2
Completed an advance directive	Completion of advance directives, living will, or durable power of attorney	Can you tell us why you do not have a living will?	Prospective	18
		Do you have written instructions about the type of medical treatment you would want to receive if you were unconscious or somehow unable to communicate?	Retrospective	18
Discuss EOL	Discussion of end-of-life preferences and options with others	Have you ever discussed with your doctor how you would want to be treated if you were dying?	Prospective	12
		Did you or [the patient] and the hospice team make a plan to ensure that any wishes [the patient] had for medical care were followed?	Retrospective	5
Situationd (n = 136)
Location	Location of death of loved one	During the last 3 months this person was alive, did he/she receive care through a hospice?	Retrospective	24
Needs	How well was this person's needs met	Were any of the prescribed pain medications that this person was supposed to use difficult to obtain at a local pharmacy?	Retrospective	60
Pain	Experience of pain at the end of patient's life	During [the patient's] last month of life, how much of the time did [the patient] experience pain?	Retrospective	25
Provider	Health care provider communication with dying person or family members	How often were you and [the patient] able to talk to doctors and others who took care of [the patient] when you needed to?	Retrospective	27

^a Overarching category that involved questions about respondent's understanding.

^b Overarching category that involved questions about respondent's beliefs.

^c Overarching category that involved questions about respondent's actions.

^d Overarching category that involved questions about respondent's perceptions during death of loved one.