This study shows that for the majority of cancer patients (99%) and non-cancer patients (85%), the diagnosis of the disease ultimately leading to death was made before the last week of life. However this also means that the diagnosis was not made until the last week of life in 15% of the non-cancer group. Apparently, it is more difficult to make the diagnosis for patients with a non-cancer disease than for patients with cancer. The GPs’ knowledge about the diagnosis was often based on multiple sources of information. For the majority of patients, GPs learnt about the diagnosis through information from the medical specialist. GPs were more likely to rely also entirely or partly on their own diagnostics or information from relatives in the case of patients with diseases other than cancer.
In addition, our results show that GPs sometimes only became aware that the patient would die in the foreseeable future late in the disease trajectory. The GP remained unaware that death would be in the foreseeable future until the last week before death in a quarter of the non-cancer group, while this was the case for only 6% in the group of cancer patients. This may be related to the fact that there is no clear diagnosis for some patients, such as the frail elderly with a general decline towards death. Another explanation may be that in the case of patients with COPD or chronic heart failure, for instance, the medical specialist has the main responsibility for the medical treatment of the patient until a late stage in the disease trajectory. This may be different in other countries and therefore findings cannot automatically generalized. If communication between the GP and medical specialists is poor, the patient’s diagnosis may long be unknown to the GP, which hampers a timely start of palliative care provided by the GP.
The fact that GPs were asked to select their last patient with a non-sudden death may be related to the fact that GPs selected a relatively large number of cancer patients. Van der Velden reported in a death certificate study that about 77,000 people a year die from a chronic disease in the Netherlands. Just over half, 40,000 (52%), die from cancer . In our study, 76% of the patients with a non-sudden death selected by GPs had cancer and 24% were non-cancer patients. Apparently, GPs associate a non-sudden death more with cancer than with a non-cancer disease. The relatively low proportion in our study of patients with stroke (1%) or dementia (6%) is particularly striking. One possible explanation for this under-representation might be that patients with stroke or dementia are more likely to die in nursing homes with their own nursing-home physician being responsible for medical care.
The present study shows that particularly in the case of non-cancer patients, GPs sometimes remain unaware of the diagnosis of the fatal disease until late in the disease trajectory. It is possible that the GP sometimes only learns of the diagnosis at a very late stage because the medical specialist in the hospital is failing to provide the GP with information. However, it is also possible that a patient has a known fatal illness (e.g. advanced heart failure or COPD) but ultimately dies from another cause (e.g. pneumonia) that has occurred only in the last week before death. Hence, further research is needed to get more insight into the reasons for the finding that the diagnosis of the disease leading to death is only known at such a late stage in a relatively large group of patients who died non-suddenly.
However, in general GPs’ late recognition of the fatal diagnosis and of death in the foreseeable future may have consequences for advance care planning and timely anticipation of the evolving symptoms and care needs of patients. In line with Fitzsimons et al. , we would like to point out the necessity of embracing the palliative care approach at an early stage of the disease in order to address the evolving needs of patients with a life-threatening chronic illness in good time. Future research is recommended on the disease trajectories from the diagnosis until the death of patients with chronic progressive diseases such as heart failure and COPD.
We also recommend a proactive attitude from GPs in patients with progressive, ultimately terminal diseases. From other recent research it is known that Dutch GPs in general have a reactive, rather than a proactive, attitude in the interactions with their patients . GPs consider it important for a patient to indicate what support he or she needs and they do not want to patronise the patient or give care that is not needed. However, at the end of life a more proactive approach, e.g. involving initiatives by the GP for advance care planning, may result in better matching of patients’ and family members’ existing and evolving care needs.
Strengths and limitations
A strength of this study is that data are included about both cancer patients and patients with other chronic diseases and the frail elderly. Previous studies of palliative care have mainly focused on cancer patients . However, the net response rate for the GP questionnaire was not high (36%), although comparable with other recent surveys among Dutch GPs [20, 21]. It is known that Dutch GPs have a high workload , which may explain why the non-response in this group is often high. It could be that GPs with a specific interest in palliative care were more likely to respond, which may have led to overestimation of the GP’s role in making the diagnosis and the identification of patients' death in the foreseeable future.
Another limitation of this survey is that it only involved GPs. It would also be interesting to explore the perspectives of medical specialists on making the diagnosis and on the communication about the diagnosis with the GP, patient and family. In addition, nurses or close relatives, for instance, may play an important role in the recognition that the patient will die within a foreseeable period, and are also an important information source for the GP. Future multi-perspective research on making fatal diagnoses and on the identification of patients' death in the foreseeable future is therefore recommended.