Use of a questionnaire to initiate advance care planning discussions in dialysis patients Free

An increased life expectancy combined with the advances of medical technology has led to discussions about the goals of care in the latter phases of life. Intensive medical treatment is not always the best answer to preserve dignity and quality of life. Discussing their current condition, expectations and anxieties might be uncomfortable for patients, and their relatives and care providers alike, yet discussing these topics is an essential step to come to a joint decision on the right amount and nature of care needed to preserve as, much as possible, quality of life towards the end life [1].

In nephrology advance care planning (ACP) is in its infancy [2]. International differences in perception and in practice patterns of dialysis withdrawal and palliative care were shown by van Biesen et al. [3]. In this survey in Europe, it was shown that only 7% of dialysis units reported the presence of a protocol on ACP in dialysis patients [3]. Nephrologists perceive barriers, both in withholding and withdrawing dialysis treatment [4]. Renal patients report considerable unmet needs in ACP [5]. Recently four types of barriers preventing adequate ACP in advanced kidney disease were identified: (i) complexity and fragmentation of medical care; (ii) lack of a shared vision on ACP; (iii) unclear locus of responsibility and authority for ACP; and (iv) lack of alignment of ACP by different providers caring for the same patient [6]. Limited health literacy of patients might present as yet another barrier [7].

In the manuscript published in this issue of NDT, Cornet et al. report on their long-standing method to start the discussion about ACP with dialysis patients of all ages by distributing a questionnaire [8]. Patients were asked to fill the questionnaire weeks to months after start of dialysis. In the questionnaire, patients were asked for their thoughts on the continuation of a variety of intensive medical treatments, in particular treatment with dialysis, in different ‘extreme medical conditions’ such as coma, a persistent vegetative state and chronic non-treatable disease, incompatible with a minimum quality of life. Patients were not only asked whether or not they would like to continue dialysis in these conditions, but were also asked for their thoughts on mechanical ventilation, feeding through nasogastric tubes and resuscitation. In response to the questionnaire, ∼50% of patients decided to have advance directives recorded. Not unexpectedly, older patients were more often willing to discuss ACP and record advance directives than younger patients. Patients who had advance directives recorded were more likely to die after therapeutic efforts had been limited (47.4%) than patients who did not respond to the questionnaire (32.8%) or had not been willing to record advance directives after discussing the questionnaire. Surprisingly, 45.5% of the limited number of patients who preferred treatment to be continued under all circumstances died after treatment had been limited. The latter discrepancy is most likely explained by the, not reported, time between filling out the questionnaire and the date of death, and the probably evolving opinion on end-of-life care during that time.

Cornet et al. [8] also analysed the response of relatives/representatives of deceased patients. The survey was carried out 4–52 weeks after death of the patients who filled out the questionnaire during life and who died following dialysis withdrawal or other ways of limiting therapeutic efforts. Relatives/representatives were asked during telephone interviews to assess the usefulness of the questionnaire in general, and for the deceased patient in particular. The vast majority of representatives judged the questionnaire to be essential or very useful in general; only 5.2% had doubts or considered the questionnaire not useful. When asked about the usefulness for the deceased patient, the representatives were slightly less enthusiastic; 15.7% had doubts about its usefulness and 3.9% considered the questionnaire not useful. This discrepancy might be explained by the delicate balance between the comfort of knowing the personal wishes and goals of the deceased and the discomfort, both for patient and family, of having to discuss these topics, even if the care providers are as experienced as Cornet et al. [8].

In a world where most dialysis units do not have a protocol to discuss ACP [3], the authors should be congratulated on being able to evaluate the effects of their long-standing policy to discuss ACP with dialysis patients. Where many nephrologists are struggling to develop proper techniques to discuss ACP [4], the questionnaire used by Cornet et al. might offer a practical instrument [8]. The use of this instrument and subsequent individual conversations with patients about ACP could help to overcome at least some of the barriers described by O’Hare et al. [6].

Before advising the widespread use of questionnaires, it would be valuable to learn how ACP is introduced in other relevant fields of medicine such as oncology and geriatric medicine. Experience in oncology says that ACP should be started early and that discussions on end-of-life decisions should be repeated often [9]. Both oncology and geriatric medicine teach us that implementation of ACP remains challenging. The availability of a variety of tools and physician education are keys to successful implementation [9–11].

It would further be valuable to learn more about the view of patients on the questionnaire and the individual discussions on ACP with their care providers. Furthermore, the questionnaire is answered by patients in the weeks after start of dialysis. Since the functional status of patients, especially elderly patients, often decreases considerably after initiation of dialysis [12], the questionnaire, or the discussion about ACP, might need to be repeated over time. Finally, Cornet et al. [8] exclusively interviewed relatives/representatives of patients dying after limiting care at the end of life. It would be useful to review the experience of relatives/representatives of those patients who died without limiting therapeutic efforts before death as well.

Another issue is the timing of the questionnaire and the subsequent discussion on treatment preferences. It is increasingly being recognized that not starting dialysis treatment, or so-called comprehensive conservative care [13], could be a valuable alternative to dialysis treatment in patients aged 75–80 years old and above, especially if they suffer from severe comorbid conditions or frailty. In such patients, dialysis is associated with little or no benefit on survival [13–16], whereas dialysis treatment increases treatment burden [17] and might also have a considerable impact on the quality of life [15, 16]. In order to decide on an appropriate treatment plan at an appropriate time the discussion on ACP, including the option to forego dialysis, should be initiated in the phase of pre-dialysis counselling. As the results of Cornet et al. [8] show, questionnaires might be one, but not the only [5, 18], valuable tool to start such discussions.

CONFLICT OF INTEREST STATEMENT

None declared. We hereby declare that the results presented in this paper have not been published previously in whole or part.

(See related article by Jornet et al. Usefulness of questionnaires on advance directives in haemodialysis units. Nephrol Dial Transplant 2017; 32: 1676--1682)

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