Hebert, R.S., Schulz, R., Copeland, V.C., & Arnold, R.M. (2009). Pilot testing of a question prompt sheet to encourage family caregivers of cancer patients and physicians to discuss end-of-life issues. American Journal of Hospice and Palliative Medicine, 26, 24–32.

To develop a question prompt sheet (QPS) for use by physicians and family members of seriously ill patients

1. QPS development: Caregivers (n = 33) and palliative care healthcare providers (HCPs) (n = 15) with at least two years’ experience in end-of-life care were interviewed and asked to discuss questions that family caregivers of seriously ill patients have. Caregivers were interviewed separately, and HCPs were interviewed in two separate focus groups. The researcher audiotaped and transcribed the interviews. Data analyses were iterative and conducted until no additional topics were raised. Inter-rater agreement was ≥ 0.80, indicating excellent agreement. The QPS consisting of 25 questions was recommended with no modifications.
2. QPS pilot study: Informed consent was obtained, and family caregivers were given the QPS and asked to check questions they wanted to discuss with the physician. Caregivers then gave the QPS to the physician. Following the appointment, family caregivers were asked whether the QPS was acceptable and feasible for use, and whether it should be modified.

• The QPS development sample included 33 caregivers (27 females [82%] and 6 males [18%]) and 15 HCPs of diverse disciplines.
• Content validity was established with 10 current family caregivers.
• The QPS pilot testing sample was comprised of 56 caregivers (41 females [73%] and 15 males [27%]).
• The age range of caregivers in QPS development was 20–70+ years; mean age in pilot testing was 53.7 years.
• Patients at end-of-life phase had multiple primary tumor types.

QPS development: HCPs from various disciplines including medicine, nursing, psychology, social work, clergy, and ethics who had at least two years of experience in end-of-life care helped define the QPS. Family caregivers used a large community-based hospice consult service for care of a seriously ill family member who had a life expectancy of less than six months. Bereaved caregivers included those who had lost a family member within the past year. Bereaved caregivers were either African American (n = 15; 45%) or Caucasian (n = 18; 55%). Primary patient illnesses (n = 23) were cancer (n = 10; 82%) and cardiovascular disease (n = 6; 26%).

QPS pilot testing: Caregivers were Caucasian (95%), African American (2%), or other (2%). The relationship to the patient was spouse (55%) or nonspouse (45%). The mean number of months providing care to the patient was 28 months. The mean hours per week providing care was 132 hours. Patients mainly had a diagnosis of cancer.

• QPS development: University-based inpatient palliative-care consult service and a large, community-based hospice serving western Pennsylvania
• QPS pilot testing: Outpatient palliative care clinic at a National Cancer Institute–designated center at the University of Pittsburgh in Pennsylvania

Prospective tool development and a feasibility pilot study were used.

• Family caregivers were asked whether they thought the QPS was acceptable and feasible to use in the clinic using a five-point Likert scale (pilot testing).
• Family caregivers were asked whether they thought the QPS should be modified or if the QPS added too much time to the visit (pilot testing).

The QPS, which encompasses medical, practical, psychological, and religious/spiritual informal caregiver concerns, had high content validity (> 0.80) and appeared in a satisfactory structure and layout based on caregiver feedback. Caregivers noted 17 of 25 questions as important for caregiver–physician discussion, including patient medication effects (46%), what to expect in the future (45%), patient depression (39%), who to call for help (32%), addiction (30%), hospice (25%), home-health services (23%), treatment risk (23%), whether the patient will have pain (21%), nutrition and anorexia (21%), suffering (21%), what to expect when the patient is dying (21%), recovery from illness and life expectancy (20%), and bereavement support (20%). Caregivers found the QPS easy to understand and felt comfortable completing the form in the clinic. Physicians involved in the study believed the QPS was valuable and nondistracting to clinical work. Family caregivers (70%–75%) reported that the QPS made it easier to ask questions in front of the family.

The QPS was evaluated by informal caregivers who found the tool acceptable and feasible for use in an outpatient palliative care setting. A QPS used in caregiver–physician clinical discussions can facilitate informal caregivers’ ability to ask important questions that increase their comfort during end-of-life care of a loved one.

• The study had a small sample, with less than 100 participants.
• The QPS was tested during only one visit with physicians.

The QPS or a similar tool outlines possible informal caregiver questions that nurses could address in care delivery. The main questions that caregivers chose to use in the study, such as those pertaining to medication side effects, what to expect in the future, or patient depression, highlight and provide guidance for discussion with family caregivers.

Inclusion of caregivers in conversations with the nurse may build rapport and trust that may facilitate initiation of discussion regarding end-of-life concerns and caregiver coping and health promotion issues. An interdisciplinary approach, including nursing involvement, allows meeting of complex patient–caregiver needs throughout the trajectory of care of a serious illness, including cancer.

Further refinement and testing of the QPS is important since it addresses the need to improve communication and stimulate discussions between informal caregivers and HCPs about an ill patient. Areas for further development include the unique perspective of the woman caregiver, literacy level of the QPS user, and testing in other populations.

The questions this study raises regarding good communication for future study are important. The QPS, although providing a structure for question asking, does not address the caregiver–physician relationship aspect that supports understandable and comfortable delivery of information between both parties. The QPS questions seem to focus on the patient’s needs and how the caregiver can respond to those needs. Few focus on caregiver needs as a result of caregiving to support continued care or recovery from bereavement. Continued work must address ways, including use of appropriate screening tools, to facilitate optimal caregiver and physician communication throughout the care cycle of a seriously ill family member to increase quality of life for carers.