Our results suggest that EOL discussions may have cascading benefits for patients and their caregivers. Despite physicians’ concerns that patients may suffer psychological harm due to EOL discussions,5-7,9
we found no evidence that they were significantly associated with increased emotional distress or psychiatric disorders. Instead, the worst outcomes were seen in patients who did not report EOL conversations. This group received significantly more aggressive medical care in their final week of life, which was associated with worse patient quality of life near death. In addition, their bereaved caregivers experienced worse quality of life, more regret, and were at higher risk for developing a Major Depressive Disorder a median of 6.5 months later.
On the other hand, patients who reported EOL discussions received less aggressive medical care and were more likely to receive hospice services for more than one week. Less aggressive care and earlier hospice referrals were associated with better patient QoL near death. Of note, patients who received less than one week of hospice care had the same QoL scores as patients who did not receive hospice at all, suggesting that patients benefit more from early hospice referrals. Better patient QoL near death, in turn, was associated with better QoL among surviving caregivers who experienced less regret and showed improvements in self-reported health, physical functioning, mental health, and overall QoL during the bereavement period.
To date, most of the communications literature in cancer has focused on doctors’ and patients’ preferences surrounding prognostication with little attention paid to the psychological and medical outcomes of these conversations.38
The bereavement literature has begun to explore the associations between patients’ place of death, the receipt of hospice care, and caregivers’ subsequent risk for psychiatric disorders.39-40,17
Recent studies have shown that communication interventions in the intensive care unit can reduce psychological distress among bereaved family members.41
Our results suggest that bereavement-related distress might be offset by interventions aimed at reducing aggressive care.
Our findings must be interpreted within the context of an observational study that could not randomize terminally ill cancer patients to EOL discussions for ethical and logistical reasons. In lieu of a trial, propensity-score weighting enabled us to examine our primary outcome independent of observed differences. Although this technique cannot correct for unmeasured or hidden biases, such as how a patients’ prior experiences with death may influence their attitudes to EOL discussions or decision-making, it is one of the most robust statistical methods available to correct for potential selection bias and confounding. Nevertheless, it is possible that patients who have a preference for less aggressive medical care may be more likely to initiate EOL discussions with their physicians. Alternatively, it is possible that the timing of EOL discussions is important, or that EOL discussions are a proxy for physician factors which may determine medical treatment at the EOL (e.g., physicians who have EOL discussions may limit their patients’ exposure to aggressive medical measures by choosing not to hospitalize patients with terminal illness).
We were further constrained by the limited information available on EOL discussions. For example, we do not know who initiated the conversation, when it happened, or what was said. Our study did not include interviews with doctors or audio-taped conversations. Unfortunately, EOL discussions are often poorly documented in the medical record, and other studies have revealed that patients are caregivers recall of conversations often disagree.9
Absent such independent validation, the accuracy of patients’ reported rates of discussions remains unknown, and we suspect our results are a conservative estimate of the true point prevalence of EOL conversations.9,46
In addition, it worth noting that our sample had disproportionately high rates of ethnic minority patients who were highly symptomatic and had poor performance statuses. Future research is needed to determine whether these findings generalize to patients who are less debilitated and have higher socio-economic status.
One of the strengths of this study is that it includes well validated structured clinical interviews for the diagnosis of mental disorders. Although there was no evidence that EOL discussions were associated with greater psychological distress, it is possible that results may differ in samples with higher rates of psychiatric morbidity. Because our data were cross-sectional, we cannot make causal inferences about patients’ psychological state at the time of the discussion, or their immediate reactions following it. However, if EOL discussions did evoke substantial psychological distress, we would expect to detect a positive association between the two.
The association between EOL discussions and patients’ preference for less aggressive care is noteworthy. EOL discussions may make patients more realistic about the benefits of aggressive therapies, and thereby reduce the likelihood that they receive intensive treatments near death.15,43
In this study, we cannot confirm the direction of this association because we did not examine changes in preferences resulting from EOL discussions.
In this study, more than 60% of dying patients do not recall having EOL discussions with their physicians. Several possible explanations exist. Cancer patients frequently misunderstand or fail to recall prognostic discussions, even when they occur.44-47
Physicians also often avoid EOL conversations, communicate euphemistically, are overly optimistic, or delay discussions until patients are close to death, perhaps because their own feelings of failure or loss.4,5,10,13,48,49
Consistent with this hypothesis, patients with lower Karnofsky scores, higher symptom burdens, and shorter median survivals were more likely to report having EOL conversations. Interestingly, patients’ recall of EOL discussion varied significantly by site, with fewer patients reporting EOL discussions at a major academic center. Future studies are needed to examine factors influencing patient selection of medical centers for care, and whether centers have distinct cultures that dictate the style and content of EOL conversations.
Given the adverse outcomes associated with not having EOL discussions there appears to be a need to increase the frequency of these conversations. By acknowledging that the EOL is near, patients, caregivers, and physicians can focus on clarifying patients’ priorities and improving pain and symptom management.1,50