We found a prevalence of documented ACP activities during the last two years of life in GPs’ medical records of patients with cancer, organ failure or multimorbidity of 65%. However, the extensiveness of documented ACP was limited. Of all cases that contained at least one aspect of ACP, in 71% five or less ACP items were covered, and in 38% only one or two (out of 17), meaning that in the majority of patients (60%) ACP is not or only minimally (1-2 items) documented. Items such as resuscitation, disease specific future scenario’s, hospital referral were documented irregularly (<20%). For most patients who received ACP, the first ACP conversation took place during the last months of life (4.2) and the median number of ACP conversations was three. Documented ACP mainly focused on euthanasia, concerns and hopes towards the future and the preferred place of care and death. In half of the patients, GPs also received ACP information through the correspondence from other healthcare providers. In such cases ACP aspects were: resuscitation policy (28%), prognosis (21%) and ICU admission (17%). Other treatment decisions that take place in the context of a hospital (such as (dis)continuation of chemotherapy) are scarcely found in the GPs medical record. In 24% of the patients, no ACP items were found in both the GPs file and the correspondence of other healthcare providers. Application and documentation of ACP differed between the disease categories. The prevalence of ACP was higher in patients with cancer (84%) than in those with organ failure (57%) or multimorbidity (42%). We also found statistically significant differences between the disease categories regarding the number of ACP-items and of consultations in which ACP was discussed, with cancer rating highest on both aspects.
Strengths and limitations
To the best of our knowledge this was one of the first studies (besides a study by Tapsfield et al. (29)) that seeked to explore actual ACP documentation in the population of non-sudden deaths in general practice, while discerning between different illness (and EoL) trajectories. We picked up on the recent shift in extending ACP also to non-physical issues, as physical changes are usually accompanied by psychological, social and existential fluctuations in the well-being of patients and their families, seen in both cancer as well as non-cancer patients. (27) We were able to define 17 ACP items, covering the physical, psychosocial and spiritual dimension, based on the consensus definition and recommendations for ACP supported by the European Association for Palliative Care and expert opinion. By taking a stratified sample that equally represents seven different practices, we enhanced the representativity of our results and minimized the influence of between-practice differences on the found group differences. FaMe-net also aims to be representative of the national population by age, gender and cause of death. Last, our study protocol comprises several check-points to enhance inter-observer reliability (reproducibility).
Also, some limitations must be acknowledged. First, scanned documents, attached to the medical record, were missing from the database, which might explain the low percentage of advance directives and the absence of information on the appointment of legal representatives. Second, data were collected in general practices from a practice-based research network, which are known to have a better registration routine than average. This may have resulted in an overestimation of ACP documentation. On the other hand; participating practices were not specialized in palliative care, and no specific codes for ACP registration are used in the network. Third, there is a risk of missing ACP related information, as ACP discussions might have taken place without documentation. However, registration of ACP content is essential to facilitate future decision-making that is based on a patient’s preferences and is, therefore, a condition to successful ACP, especially since in most health care settings multiple caregivers are involved. Fourth, we may have also missed information by only looking at the last two years of life. In our opinion, though, information dating from longer than this period is less relevant as patients’ preferences and wishes possibly change along with changes in their medical condition. (28) This is why ACP should be frequently re discussed. (1)
Our finding that 35% of the deceased patients seemed not to have received any form of ACP consultation by their GP, is in line with existing literature about the uptake of ACP in general practice, and may be explained by some barriers for ACP that have been reported before (see textbox 1 for these barriers). Recently, patient records in the general practice were examined in Scotland, showing that 60% of all patients who died in 2014 had an anticipatory care plan; 75% of the patients with cancer and 41% with organ failure. (29) Though this was a study in a different country, these percentages are quite comparable with our findings. Ermers et al found that, in the Netherlands, in 74% of the records of patients with colorectal and lung cancer, at least one ACP item was documented, compared to 84% in our group of patients with an active malignancy at the moment of death. (15)
Textbox 1: Barriers for the uptake of ACP, as reported in the literature
Despite the fact that there is increasing attention for ACP and a growing body of evidence of its positive effects, research shows that the application of ACP conversations remains still low, and the organization and delivery of healthcare is still predominantly reactive. (13-16, 14-18)
Several barriers have been reported that may prevent optimal implementation in clinical practice. First, on the patient-side, participation is at risk in case patients are not ready to talk about themes related to deterioration in their condition or the nearing death. (19) Second, for GPs, insufficient time is among the most important barriers. Third, GPs find it difficult to engage in end-of-life conversations, which is sometimes caused by lack of skills or experience, and that they have a hard time finding the appropriate moment to initiate ACP, especially in case of uncertainty of prognosis. (20-23) Fourth, illness trajectories differs a lot from patient (group) to patient (group). Especially in uncertain trajectories (especially at the EoL), there are less clear-cut ‘triggers’ that may help GPs starting ACP conversations, moreover: a great diversity of factors have to be taken into account. (22) In patients with incurable cancer, the decline is generally progressive and reasonably predictable, usually with a clear terminal phase. (24, 25) Patients dying from a non-malignant cause, however, frequently experience a more gradual decline. In those with organ failure (like respiratory and heart failure), the decline might be punctuated by episodes of acute deterioration and some recovery, with more sudden, seemingly unexpected death. In the elderly with multiple chronic diseases (i.e. multimorbidity) the decline is often prolonged and gradual. (24, 25)
Second, our finding that ACP is more prevalent among cancer patients, is in line with the results of other studies. (7, 14, 16, 17, 29) Although these studies are based on questionnaires and interviews, whereas our study has the design of a medical record study, existing literature strengthens our conclusion that patients with organ failure and multimorbidity receive less ACP. This might be due to prognostic uncertainty; the relative unpredictability of non-cancer patients’ decline possibly impedes physicians to anticipate palliative care needs and initiate end-of-life conversations timely. (23) As there are less direct causes to start the conversations, GPs might prevaricate or postpone when considering end-of-life issues, also described in literature as prognostic paralysis. (30) Also, the need for ACP is often less clear when there is no strict demarcation between the curative and the palliative phase. (31) Patients suffering from cancer are more aware of the life-threatening consequences of their disease and engage in ACP more proactively (40), while patients still being treated in the hospital, are less open to ACP discussions, as was reported by GPs in earlier research. (22) Nonetheless, ACP is also appropriate alongside optimal chronic disease management and has been widely recommended for non-cancer patients. (1, 17, 32, 33) GPs, however, appear to find this difficult to implement (20, 22, 23, 31-34), resulting in non-cancer patients being relatively underserved with regard to comprehensive and timely ACP.
Third, our results support earlier findings that ACP is initiated late in the disease process; other studies found a timing of ACP that ranged from 33 days until 18 weeks before death, compared to 126 days before death in our study. (15, 29, 31, 35)
Implications and recommendations
Though ACP receives more and more attention, widespread implementation in clinical practice stays behind. A higher prevalence of ACP, broader discussion of ACP-related themes and timely initiation could benefit the quality of end-of-life care. It appears desirable to close the gap between patients with and without cancer and offer ACP to all patient groups, especially when considering the growing number of old people suffering and dying from serious chronic diseases. (36) Extending an anticipatory care approach to all people with advanced chronic conditions is a challenge and multiple barriers (see textbox 1) need to be overcome. Professionals caring for people with life-limiting conditions need core generic skills to enable them to assess supportive care needs and judge the readiness of individual patients and families to participate in discussions about the future. However, many physicians feel poorly prepared to conduct end-of-life conversations. (37) Recently, in the Netherlands, ACP training programs have been developed, such as the course ‘Timely end of life conversations’ by the Dutch GP Association and the RADPAC training. (34) These trainings might serve as useful aids to educate physicians and to help them deal with feelings of uncertainty, though they are not widely implemented yet. Another starting point for improvement is the structure of documentation. Our study shows that there is no uniform structure in registering ACP information in the Netherlands, and we found that both GPs and medical specialists used heterogenous and aspecific terminology, which makes it hard to retrieve, transfer and update information. This could be improved by using predictable, homogeneous and exchangeable formats to document ACP, which has been shown to be successful in other countries. (29, 38) Lastly, timely recognition of patients that could benefit from ACP is essential, but appears to be difficult. In the group of organ failure, hospital admissions and exacerbations might serve as a helpful starting points for discussion about wishes and needs. (22, 27) We recommend that future research contributes to the identification of patients that may benefit from ACP, as well as the appropriate timing to initiate ACP conversations.