Interviewing someone who is dying

Who was it with? Did you like it? What was your favourite pet when you were a child? What were you like as a child? How were you different from how you are now? What did you get into trouble for when you were a child? What is your favourite food memory when growing up?

What was your favourite toy? What was your favourite game? These questions come from questions mentioned in these two articles: What questions should a child ask their parent before the parent dies? Related Posts None. Filed Under: how to ask questions people will enjoy answering , questions to ask a dying loved one , social. Similarly, among the caregivers, few reported a great deal or some stress during the initial interview 9. Among those who participated in the postbereavement interview, substantially more caregivers reported stress.

Yet, only 9. The response rate in the postbereavement survey was In multivariate logistic regression, terminally ill patients experiencing pain odds ratio [OR], 1. Caregivers whose patient was experiencing psychological distress and depression OR, 1. Jewish caregivers reported more stress than caregivers from any other religion OR, 2.

A slightly lower percentage found the follow-up survey helpful. Slightly more caregivers than terminally ill patients found completing the survey helpful. A total of Among bereaved caregivers, Multivariate logistic regression showed that patients from ethnic minorities OR 1. Multivariate logistic regression also showed that caregivers who spoke less with the patient about spiritual matters and relationships OR, 0.

However, caregivers who felt a burden because of the patient's fatigue OR, 1. Also, Protestant caregivers were more likely to find the interview helpful than caregivers from any other religion OR, 1. Finally, there was no relationship between stress and helpfulness. Among patients who did not find the interview stressful, Similarly, among caregivers who did not find the interview stressful, These data suggest that discussing topics related to death and dying during an interview is not particularly stressful, and may actually be helpful, for many dying patients—including those who found the interview stressful, and even their bereaved caregivers.

In this study, interviews of terminally ill patients and their caregivers were not particularly stressful despite questions about symptoms, care needs and economic burdens, the personal meaning of and adjustment to impending death, plans for terminal care, social supports, communication with health care providers, and related topics. These findings suggest that the common fears of researchers, IRB members, and the public that talking about death and dying with terminally ill patients will be stressful are exaggerated.

This relatively high percentage of positive answers occurred despite the warning that the information would not be shared with their health care providers and that they would "receive no direct benefit" although they "may gain insight into [their] values, opinions, and relationships.

We do not know in what way patients and caregivers found it helpful, but it may be that answering structured questions helped them better understand their experiences, or that, for many people, having someone, even unknown, be interested in hearing about their personal experiences at this sensitive moment is helpful. Determining the precise nature of the benefit to patients and caregivers of speaking about death and dying experiences requires further research.

We had hoped that the structured interview might prove to be particularly helpful to patients and caregivers who found communication about death and dying difficult. While this appeared true for some patients, it was not true for caregivers as a group. These interviews also seemed particularly helpful to patients from ethnic minorities and those who were anxious.

Our findings suggest that for some patients who otherwise might be at higher risk of having problematic dying experiences, a structured interview might be particularly helpful. Conversely, the interview did not seem more helpful to caregivers who reported problems in communicating with the patients or health care providers. This study suggests 2 important implications regarding policy. First, IRBs should not restrict interview research of terminally ill patients and their caregivers unless there are reliable data to indicate that the survey will be stressful.

Our findings suggest that survey research with terminally ill patients and their caregivers is rarely stressful and is frequently beneficial. Second, our findings on helpfulness suggest that implementing structured interviews as part of the routine care of terminally ill patients and their caregivers may be important. Not only might such standard interviews obtain critical information about problems such as uncontrolled symptoms or care needs, but merely having the discussion and expressing interest may be therapeutic.

And while we do not have detailed cost-effectiveness data, such structured interviews can be comparatively inexpensive, especially when the additional costs associated with formal research data collection are excluded. This study has important limitations. First, patients fearing stress may have refused to participate; and while identifying patients as terminally ill, physicians may have excluded those for whom such a survey would be particularly stressful.

While this is possible, most data suggest that physicians are inaccurate at predicting the psychological state or experiences of their terminally ill patients 9 - 12 ; and there is no reason to think that they are good at predicting which patients will have stress in response to a survey. Second, these data are from in-person interviews and may not be generalizable to other interview formats such a telephone or e-mail surveys.

Intuitively, many people think that speaking with terminally ill patients and recently bereaved caregivers about death, dying, and bereavement is stressful. The findings from this study, however, suggest that structured interviews on these topics are rarely stressful and frequently are helpful.

Correspondence: Ezekiel J. The views expressed in this study are those of the authors and do not necessarily reflect the opinions or policies of the National Institutes of Health or the Department of Health and Human Services.

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