Advanced Heart Failure
End-of-Life Discussions in Cardiovascular Diseases ― What We Can Learn From the Bereaved Family Members ―
2024 Volume 88 Issue 1 Pages 144-145
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2024 Volume 88 Issue 1 Pages 144-145
End-of-life discussions (EOLD) are those that clarify a patient’s values, care goals, and desired medical treatment when nearing death.1,2 The importance of advance discussion concerning future care preferences is well recognized,1,3 but according to previous studies both physicians and patients are ambivalent about talking about death, often avoiding EOLD.2,4 As cardiovascular diseases (CVDs) account for a substantial proportion of deaths among the population, especially in aging societies, facilitating and promoting EOLD in this field of medicine is essential. Nevertheless, optimal methods and timing of EOLD for patients with CVDs are largely unknown.
Article p 135
In this issue of the Journal, Shinada et al report on the current status of EOLD in CVD based on a cross-sectional questionnaire survey of bereaved family members of patients with CVDs who died at 10 participating institutions in Japan.5 To the best of my knowledge, this is the first large-scale survey examining EOLD for CVDs from the perspective of bereaved family members. The investigators wisely used the same questionnaire with items consistent with those used in J-HOPE 3, a Japanese EOLD survey of bereaved family members of patients with cancer who mainly died in a hospice palliative care unit.6 Therefore, comparing the results of the study by Shinada et al and J-HOPE 3 contributes to clarifying the current status of EOLD in CVDs (Table).
Current Status of EOLDs Among Patients With CVDs and Those With Cancer According to a Questionnaire Survey of Bereaved Family Members
| Study | ||
|---|---|---|
| Shinada et al | J-HOPE 3 | |
| Patients | CVDs (HF: 57%, MI: 12%, others: 31%) |
Cancer |
| Proportion of patients having EOLD | 69.9% | 80.6% |
| Timing of initiating EOLD | ||
| >3 months before the patient’s death | 24.5% | 33.8% |
| 1–3 months before the patient’s death | 18.4% | 41.0% |
| <1 month before the patient’s death | 57.1% | 23.9% |
| Missing data | – | 1.4% |
| Topics discussed in EOLD | ||
| Place of death | 21.5% | 79.1% |
| Resuscitation | 79.0% | 44.8% |
| Use of specialist palliative care services | 17.5% | 43.2% |
| Transfer to other facilities | 29.1% | |
| Other topics | 4.1% | |
| Provider of the initial EOLD | ||
| Cardiologist/Oncologist | 78.4% | 53.4% |
| Palliative care physician | 2.1% | 36.8% |
| Primary care physician | 3.6% | 3.4% |
| Other | 16.0% | 4.9% |
| Missing data | 1.5% | |
| Perception of bereaved family members regarding the timing of initiating EOLD | ||
| Too early | 6.8% | 4.6% |
| Appropriate | 70.5% | 72.3% |
| Little bit or too late | 22.6% | 19.8% |
| Missing data | 3.3% | |
CVDs, cardiovascular diseases; EOLD, end-of-life discussion; HF, heart failure; J-HOPE, The Japan HOspice and Palliative care Evaluation study; MI, myocardial infarction.
The first important difference between CVDs and cancer is the proportion of patients having and the timing of EOLD (Table). Although the clinical trajectory preceding death in CVD varies with each patient and largely differs from that for cancer, the data from the present study suggest there is room for improvement in the timing and frequency of EOLD for CVDs. Notably in J-HOPE 3, a shorter time between the initial EOLD and death was significantly associated with an increased risk of depression and complicated grief among bereaved family members.6 The study by Shinada et al also showed an association between late EOLD and poor satisfaction among bereaved family members.5 Patients and family members may require time to process information related to the reality of their situation, underlining the need to integrate EOLD earlier in the management of CVDs, in which illness trajectories may fluctuate, sometimes suddenly worsening.
The second important difference between the diseases is the topics of EOLD (Table). The main subject of EOLD for CVD was resuscitation (79%), whereas the major topics discussed by patients with cancer were place of care (79%), followed by resuscitation (45%), and specialist palliative care service use (43%).6 Surprisingly, in the present study only 35% of the bereaved family members participated in EOLD with patients,5 which is contrary to the recommendation for EOLD to reflect the “patient’s” individual wishes in end-of-life care.1 The result implies that EOLD for CVD was performed primarily to decide on resuscitation between physicians and family members only and not including the patient. Is that really EOLD? Indeed, from the patient’s viewpoint, the questionnaire survey revealed that only 17% of patients with heart failure reported having EOLD with their physician.7 As EOLD sometimes include delivering bad news to patients and may become a difficult experience, physicians are concerned with potential additional psychological burden related to EOLD for the patients. However, there is no evidence that EOLD is associated with increased emotional distress or psychiatric disorders. If patients are ready and requesting EOLD, then it is warranted. Besides, EOLD should include the “value and preferences of the patients” to ensure they receive goal-concordant care.8
What should physicians do after learning the current status of EOLD in CVDs from the perspective of bereaved family members? In my opinion, cardiologists must learn to conduct EOLD as a basic skill, as most EOLD are initiated by cardiologists, as shown in the Table. Currently, there are many resources to assist with EOLD and palliative care in CVDs (i.e., Statement of palliative care in cardiovascular diseases,1 HEeart failure Palliative care Training program [HEPT],9 or quality indicators for palliative care in chronic heart failure or acute CVDs3,10). These resources can be readily used in daily cardiovascular practice. Additionally, more research is necessary in the field of palliative care for CVDs, to catch up to that in the field of cancer.11 In that regard, the study investigators should be congratulated for providing important data on end-of-life care in CVDs,12,13 and the study by Shinada et al is crucial for supporting improved palliative care approaches in CVDs.
Nothing to declare.
