Our findings indicate that there is substantial variation in the communication that occurs between physician and family caregivers of patients who die with hospice about key aspects of care at the end of life. We find that in a notable minority of cases primary family caregivers report that they have not been told by a physician that the patient’s illness cannot be cured, and even larger proportions never discuss hospice with the patients’ physicians. Although this finding is consistent with previous research,1,16,29,30
we additionally find that those who are told that the patient’s illness is not curable are often told very late in the course of the patient’s illness. In a number of cases, communication about the illness being incurable and the possibility of hospice as an alternative is reported to occur only in the last month or even week of the patient’s life. The reported apparent delay in such discussions may be preventable, especially in the case of cancer for which prognostication is more accurate.12,19,31
Reducing delays in communication regarding the patient’s illness may provide more opportunities for patients and families to say goodbye, complete personal and financial arrangements, and plan for the last phase of the patient’s life. Data suggest that patients and families value being able to prepare for death5-7,32
and timely, effective communication about the irreversible and progressive illness can promote such preparation.
In addition, we find that the family caregivers’ own understanding of the patient’s condition and the possible treatment alternatives is strongly influenced by discussions they report having with the physician. In the vast majority of cases, family caregivers report that they did not know the patient’s illness was incurable or that hospice might be appropriate until a physician raised it with them, and patients whose family caregiver reported discussions of the patient’s incurable illness had significantly longer hospice length of stays prior to death. The importance of physician-family caregiver discussions of the patient’s terminal status was shown a decade ago to be associated with hospice use13
; the current study suggests that such discussions may also be important to earlier hospice enrollment in the course of the illness. Recent research has shown significant benefits of earlier hospice enrollment for both patients and family caregivers,23,33
and earlier communication about hospice as an option might promote its more timely consideration and use.
Our findings concerning the discussion and understanding of life expectancy paint a somewhat more complex picture. While only a minority of family caregivers did not believe the patient’s illness was incurable after a physician told them, a larger proportion of caregivers did not accept the prognosticated life expectancy provided by the physician. In fact, only a quarter of family caregivers reported that they agreed with the physician when he/she provided an estimated life expectancy. Many were either more optimistic or more pessimistic than the physician, but more importantly, nearly 40% still indicated that they did not know and would not estimate the patient’s life expectancy, even after a physician reportedly provided such information. Prior work has indicated that prognosis is often not discussed9,10,12
or discussed only indirectly.10,11,31
Our finding is consistent with this previous literature but also suggests that, even when physicians discuss prognosis, family caregivers may not agree or accept to what has been said. Therefore, family caregivers’ limited understanding of prognosis likely results from a combination of physician and caregiver communication factors, not from poor physician communication alone. Future research is needed to understand why family caregivers may not accept the prognostic information provided to them by physicians, such as lack of trust in the physician, lack of demonstrated reliability of these predictions, denial, a sense that time of death is divinely determined, or some combination of these.
The complexity of communicating effectively and appropriately about end-of-life issues is highlighted by the voices of several caregivers who reflect the ambivalence they felt about knowing the truth and the related ambiguity likely felt by physicians in deciding how and when to communicate such sensitive and potentially unreliable information. Although most caregivers reported wanting to know about the patient’s condition and alternatives earlier in the course of the patient’s illness, several did not want to know more, and others remained conflicted about what they wanted to know and when. Faced with this variation in family caregiver desires and needs for communication, the challenge may be not in teaching physicians to communicate more with patients and families, but in assessing which patients and families desire and would benefit from such communication. Despite the principles of autonomy and informed decision-making, uniform approaches to communication in this area are unlikely to be successful or appropriate, given the diversity of preferences and views of patients and their families.
Our findings should be interpreted in light of our study limitations. Caregiver reports of physician communication and its timing are subjective and may be biased. Previous studies have found that caregiver and physician reports about communication at the end of life differ, and agreement on communication is limited.9
Furthermore, we did not examine communication between the patient and physician. Nevertheless, given that the primary family caregiver is often a strong influence on treatment choices,13,14,34
the caregiver’s perception of what is communicated remains an important factor that may influence end-of-life outcomes. In addition, our sample focuses on caregivers of hospice users, who may report greater communication than caregivers of patients do not receive hospice; therefore, our findings may underestimate the deficiencies in end-of-life communication in a more general population of dying patients and their families. We interviewed caregivers at one point in time, potentially limiting our ability to measure changes in their perceptions over time. Reported communication did not differ significantly between caregivers interviewed before and caregivers interviewed after the patient’s death. Our response rate was similar to studies of this nature and our nonresponding caregivers did not differ in gender or kinship with the patient; however, they may have differed in unmeasured ways from the participants. The direction of this potential bias cannot be predicted. Finally, our study was conducted in a single state with a relatively modest sample of caregivers; however, our objectives were descriptive in nature, and this exploratory study provides new insights about the timing, scope, and acceptance of physician communication with family caregivers about care at the end of life. Future efforts should include more geographically, culturally, and racially/ethnically diverse groups to further understand the complexity of communication about end-of-life issues.
Although communication is a critical element of high quality end-of-life care,1-5
many family caregivers report limited and delayed communication about the incurable illness, life expectancy, and hospice as a treatment alternative. Our findings suggest that approaches to communication, which is central to the care itself, will be most effective if tailored to fit the circumstances and preferences of patients and families. Physicians’ discussions of these topics do influence family caregivers, who often become aware of the gravity of the patient’s situation for the first time during discussion with a physician, but who also may require time to accept the implications of the new information. Disparities between what physicians think they are communicating and what caregivers hear communicated are important to understand in light of our findings. Future studies should examine strategies for optimal physician-family caregiver communication about incurable and progressive illness, so that families and patients can begin the physical, emotional, and spiritual work that can lead to acceptance of the irreversible condition.