Time for Proper Support for the Next-Of-Kin of a Patient Who has Suffered a Cardiac Event

Today it is time for me to say goodbye as Editor, after 10 years of good relations with the editorial board. Ten years of scrutinising manuscripts from colleagues all over the world; to have their master pieces and make the decision to Accept or Reject, which brings either joy or frustration. Of course, such decisions affect us all — after devoting many hours to designing, collecting data, analysing and finally writing the article, you want the manuscript to be published. And I have to say you have been fantastic — a vast amount of good and important knowledge has been developed thanks to your efforts to have your articles published in EJCN during the past decade. Thank you all! I hope you continue to send your manuscripts to EJCN, to help us remain one of the best cardiovascular care journals in the world. Therefore I want to finish where I originally began — speaking up for the next-of-kin (NoK) of cardiac patients. When I started my own research in the early 80s together with my former colleagues Assoc. Professor Evy Lidell and Professor PA Larsson, we were very clear about the necessity of involving the other half of the couple if lifestyle changes were to be achieved. In order to change behaviour in both the short and long terms after a cardiac event (CE), it is necessary to be motivated and persevering as well as to have an effective social network [1]. The willingness to change behaviour in the context of a cardiac event (CE) is obvious [2], as the fear of death due to a CE is high as is the motivation to make changes if the patient “only” survives [3]. However, the patient's motivation decreases when the acute course of the CE is over, thus the NoK's influence and support are extremely essential for creating and maintaining a healthy lifestyle [4,5]. Whilst healthcare personnel's advice and guidance are obviously important, the ability of the NoK who lives everyday life in close proximity to the patient has the greatest impact [6]. The patient shares with the NoK the signs and symptoms of the CE that affect both of them for the rest of their lives together. For the patient the signs and symptoms are debilitating, not only in the form of physical but also in terms of emotional/psychological (hopelessness, worry, anxiety), social (loneliness, lack of contacts and relationships), intimate relational (bad sex and marital life), financial (poor financial situation) and existential (death anxiety) pain [7–9]. Similarly, the NoK experiences these signs and symptoms – even physical pain– and the consequences are the same and sometimes worse than for the patient who has lost force to or even no longer manage the responsibilities either for him/herself or the family. Overall, this means for the NoK – for a shorter or longer time depending on the patient's illness trajectory – having primary responsibility for all family involvements, from managing and promoting the patient's personal care and health, monitoring symptoms, coordinating and maintaining the family's social network to be one of the family's breadwinner. And perhaps most importantly, continuing to help and support the patient to remain fit and healthy [10,11]. The consequences are so major and extensive that the NoK, especially the older female NoK, is at increased risk of falling ill and even dying prematurely from a CE [12,13]. What happens is that the older female NoK assumes the duties and responsibilities related to the care of the patient. These demands are experienced as a chronic stressful life event [14], which eventually leads to an overwhelming burden of care. This in turn creates an illness and introduces a “hidden patient” with death as the worst possible consequence. How the NoK copes and acts in order to support the patient in the context of lifestyle changes after the CE is described by Kärner et al. [15] by means of five support models, two of which involve an active role with a positive, supportive function and encouragement to change (the participative and the regulative) whilst the other three are characterised by a passive role, a non-supportive function and not encouraging change (the observational, the incapacitated and the dissociative). Two of these support models – the observational and the dissociative – indicate a negative attitude towards the patient's lifestyle changes, mainly due to unwillingness to be and disinterest in being involved. From the healthcare perspective, this knowledge regarding the NoK's support ability and actions is of great importance in order to better understand but also to facilitate the NoK in his/her supportive role. These support models are not “deadlocked” but depend on the NoK's personal characteristics, the time span and workload due to the patient's illness trajectory and can change for better or worse. It is therefore vital for healthcare personnel to monitor the situation in order to support the fragile and vulnerable NoK, or “hidden patient”. Today it is a great challenge for healthcare personnel to avoid having to care for not only one but two patients! It is time to take action because such caring interventions must, in addition to providing benefits for the patient as well as his/her NoK, be both effective and economical in the long term.