Oncologists’ perspective on Advance Directives, a French national prospective cross-sectional survey – the ADORE Study

doi:10.21203/rs.3.rs-3808745/v1

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Oncologists’ perspective on Advance Directives, a French national prospective cross-sectional survey – the ADORE Study

https://doi.org/10.21203/rs.3.rs-3808745/v1

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Journal Publication

published 10 Apr, 2024

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Background

The foreseeable severity of the prognosis of cancer invites to offer patients the possibility to express their values for care management. However, the prevalence of advance directives(AD) among oncology patients remains low. The aim of this study was to measure the interests and limits to the implementation of AD from the perspective of oncologists.

Methods

French national online survey of hospital-based oncologists. The questionnaire was composed of 5 domains: information on AD, redaction assistance, usage of AD, personal perception of the interest of ADs and clinical particularities of the respondent. Primary outcome was the reported frequency of patients’ information about existence of AD. Secondary outcomes were the measure of factors associated and barriers to the provision of AD information.

Results

410 oncologists (50%) responded to the survey. 75% (n = 308) considered AD as a relevant tool. 36% (n = 149) regularly inform their patients. 25% (n = 102) remain suspicious of this provision, either because they see it as a source of anxiety (n = 211; 60%) or that patients require specific information to write relevant AD (n = 367; 90%). Experience in palliative care was associated with more frequent approach of AD (43% vs 32.3%, p = 0.027). Previous experience of critical care was associated with higher levels of AD distrust (31.5% vs 18.8%, p = 0.003). 68.5% (n = 281) of respondents considered a person of trust more appropriate than AD.

Conclusion

Although AD are mostly considered as a relevant tool, only one third of oncologists regularly inform their patients about them. Uncertainty about the safety and relevance of AD remain high.

Ethics

Advance Directives

cancer

tumor

oncologist

trust person

Despite the recent tremendous progress in cancer care, cancerous disease, are still associated with a terrible prognosis, with only 25% of patients affected alive five years after diagnosis [1]. Due to the immunologic dysfunction and frailty associated with cancer as well as treatment options [2], 15% of patients living with cancer will need intensive care unit (ICU) admission during their lives [3]. However, critical care, in addition to a mortality rate of up to 58%, is associated with an important burden for patients, being responsible of discomfort [4]. It may also create unrealistic hopes for relatives [4]. Survivors are still faced with an increased mortality rate, and altered quality of life (up to 50% of patients may present depression after critical care hospitalization [5], 20% suffer from post-traumatic stress syndrome [6]) and altered autonomy (only 50% of patients resume their previous activities five year after critical care) [7]. This tremendous burden on patients’ recovery, quality of life and potential sequelae after critical care makes it particularly important to have an idea of what is or isn’t acceptable for a given patient in order to deliver the most adequate care.

However, if patients’ prognosis and physiological reserve are often available and taken into account when deciding to admit a patient to an ICU, most of the time, patients are not able to give their opinion on the care they wish for. It is precisely in order to allow patients to express themselves in all circumstances that advance directives (AD) were created. AD were first mentioned by Louis Kutner in 1969 in the Indiana law journal [8] and legally enforced in the United States in the Patient’s self-determination act in 1990. In Europe, AD appeared in the legal frame during the Oviedo Convention in 1997, and were legally recognized in France by the Loi Leonetti [9]. However, even though AD are part of the legal background of patients’ care since 2005 and were even made enforceable in 2016, less than 5% of French patients living with cancer wrote their AD [10, 11] If a lack of information and difficulties of projection for patients [12] may partly explain this little use of AD, we wondered whether a medical reluctance to use this disposition could explain part of this disavowal for advance directives. The primary objective of this work was measure by questionnaire the interests and limits to the implementation of AD in daily clinical practice for oncologists.

Study Type

This study is a prospective, observational, cross sectional study based on volunteerism and adheres to the applicable CROSS guidelines [13].

Study population

All oncologists working full -or partial- time in a hospital setting (teaching hospitals, tertiary hospitals, cancer centers; list in supplementary material) were included.

Exclusions criteria were: oncologists working exclusively in a liberal setting, or non-oncologist physician, residents.

Precautions

No judgement was made on the use, respect or, on the contrary, the lack of application of advance directives (information, writing, use). Details of precautions are described in supplementary material.

Questionnaire

The questionnaire was built according to the redaction guidelines of this type of instrument [14–17].

The various themes covered were selected using a Delphi procedure. The experts from the REQUIEM group made a reduction and a first proposition for the questionnaire according to the literature and to critical elements highlighted in previous work [18–23]. The questionnaire was then reviewed by the experts from the French Society of Cancerology (SFC: société Française de Cancérologie), and the French Society of bonne marrow transplant and cellular therapy (SFGM-TC: Société Francophone de Greffe de moelle et de Thérapie cellulaire).

The questionnaire is organized in five domains (19 items): clinicians’ involvement in providing information about the existence of AD, clinicians involvement in writing AD, use of existing AD in case of an acute situation, information about the respondent’s department, personal data regarding the respondent.

The questionnaire was pretested by different members of the REQUIEM group, including intensivists, palliative care physicians, general practitioners and pharmacists, but no pilot study was performed to prevent loss of potential respondents.

The questionnaire is available in Appendix 1.

Questionnaire administration

This was an electronic survey. The questionnaire was stored and administered using Googleform®.

The availability to the respondents was made in the form of a specific link per center, sent by email to all clinicians of interest in June 2020.

Several reminders by telephone or email, to the attending physicians were made in all centers during the year 2020-2021. Centers were informed of their response rate in comparison to other centers. The questionnaire was closed in June 2021.

Study outcomes

The primary outcome was to measure the interests and limits to the implementation of AD in oncologists daily clinical practice. Secondary outcomes were: elements influencing information on AD, help in their drafts, actual use of AD by physicians, as well as the necessary information needed for their redaction according to clinicians experience and the potential role of the “person of trust” (definition in supplementary material).

Statistical analysis

The synthesis of data is expressed in mean and standard deviations (SD) or medians and Interquartile Range (IQR). The study of the relationship between two qualitative parameters was performed by the Chi-square test. Differences were considered significant when the alpha risk of showing a difference that did not exist was less than 5% (p ≤ 0.05).

Ethics approval and consent to participate

The study was performed in accordance with the Declaration of Helsinki. This study is part of the French methodology of reference MR003 and an ethical agreement was obtained from an ethics committee (Groupe Ethique & Rercherche Médicale - GERM. IRB 00012157). The MR003 correspond to a research without requirement of a specific consent (« Recherches dans le domaine de la santé sans recueil du consentement » Official text. Delibération n° 2018-154 of May 3^rd 2018; text n°109 of the Journal officiel de la République française). In this context the ethics committee did not require the formal consent of the participants. The information of the respondents was done in writing, in the form of an introductory paragraph at the beginning of the questionnaire. The absence of response to the questionnaire was consider secondary to a refusal to participate. Conversely, completion of the questionnaire constituted de facto acceptance of participation in the study.

Consent for publication

Not Applicable.

Population

Between June 2020 and June 2021, 410 of 818 oncologists meeting the study criteria (50%) working in 60 hospital replied to the questionnaire. Respondents were distributed across France (figure 1). Assistant professors represent n=101 (24.6%), attending physicians n=270 (65.9%) and professors n=39 (9.5%) of the survey participants. This distribution is representative of the French medical demography. 234 physicians (57.1%) work in cancer center and n=152 (37.1%) work at teaching hospitals (details in table 1).

Reported frequency of information given to the patients on AD

AD are “often” or “systematically” brought up with their patients by 36.3% (n=149) of the oncologists and “sometimes” by 59% (n=241). 5% (n=20) of respondents never talk about AD to their patients as described in Figure 2.

Factors associated with information on AD

Demographic factors associated with more AD discussions are an experience in palliative care (p= 0.027), working in at a cancer center (p=0,022) and having more experience (attending physicians are significantly more likely to talk about AD than fellows, p= 0,021) (see appendix 3).

In respondents who talk about AD with their patients, principal triggers to bring them up are the patient’s demand for 68.2% (n=266), disease progression in spite of active treatment (n=256; 65.6%), the occurrence of a complication needing hospitalization (n=209; 53%) and the presence of a metastatic disease (n=69; 17.7%) (Figure 3).

Representation of oncologists: Oncologists who do not talk about AD on a systematic basis highlight their fear to create anxiety for the patient (n=211; 59.8%) or their relatives (n=95; 26.9%). Other major reasons are the feeling that AD are inadequate to a chronic medical situation (n=135; 38.2%), to end-of-life care (n=86; 24.4%) or to patients’ needs altogether (n=70; 19.8%). 69 respondents (19.5%) raise the concern that patients do not know how to use AD (details in figure 4).

Reluctance to use AD may also arise from the perceived dangerousness of the provision. Indeed, 25% (n= 102) of the respondents’ express important concerns regarding AD. Only 31 respondents (7.6%) think that AD are perfectly adapted to patients’ needs (Figure 5). 56.8% (n=233) of respondents consider that information on AD should be provided by someone else (primary care physician, state agency, or another instance) (appendix 2).

AD use in clinical practice

32% (n=130) of respondents have helped patients to redact their AD. Physicians who bring up AD more often were more likely to have helped their patients in their redaction (p=0,0005) (Appendix 4).

86.1% (n=350) of respondents reported systematic traceability of information on the person of trust. 73.6% (n=302) identified a dedicated place for the collection of this information in their medical records. This proportion is 50.9% (n=209) for the collection of advance directives and 46.8% (n=192) for the formal collection of decisions to limit treatment

When in possession of AD, 90.2% (n=370) of respondents respected them. Reasons for not respecting AD were urgent situations outside the scope of patient’s end-of-life care (87%, n=35) or the fear that the patient may have changed his mind (35.0%, n= 14).

Potential improvement of AD

Although yet scarcely used, 75.1% (n=308) of respondents think that AD are an interesting tool. Indeed, 89.5% (n=367) of the responding oncologist consider that patients need additional information to be able to write their AD. Additional information encompass information on their general care (n=275; 74.5%), on their prognosis (n=248, 67.6%) and available treatments (n=135, 36.8%), or on AD use (n=261; 71.1%) and specific vocabulary (n=229; 62.4%) (Figure 6).

Person of trust

52.4%, (n=215) “systematically” talk about person of trust with their patients. Only 19% (n= 80) “rarely” or “never” talk about it. 68.5% (n=281) of the respondents think that the trust person would be a better tool than advance directives for patients’ care. This statement is more likely to be true in younger physicians (Figure 3 and appendix 5).

In our national survey, 36% of the responders talk regularly, if not systematically, about AD to their patients. AD are even more discussed when patients’ wish to do so or as their condition worsens. Conversely, the absence of AD’s mention lies in the fear to create anxiety for the patient or his relatives, particularly in case of a stable and chronic disease. Finally, oncologist consider the person of trust as an important resource for the expression of patients’ wishes.

One stumbling block raised by this study is the ambiguity of clinicians regarding AD. Although 47% of respondents see this tool as a way of reassuring their patients, the reason most frequently given for not talking about AD is the fear of creating distress in the patient. This fear [24] as well as the worry of altering the therapeutic relationship [25] are frequently reported in the literature. However, a large multicenter study confirmed the absence of a deleterious effect of discussion on the prognosis of tumor diseases and on the end of life [26]. Early discussion of advance care plans may, on the contrary, be of psychological benefit and reduce the risk of aggressive care [26–28] which is known to have a negative effect on patients’ quality of life [26, 27, 29, 30].

Timing of the discussion about AD is also a key difficulty for physicians. Our study found that the majority of oncologists considered it preferable to wait for the patient to bring up the subject themselves. Nonetheless, the vast majority of patients seem to hope that such a subject will be broached by the physician rather than initiated by them [25, 31–33]. While the most adequate timeframe is still uncertain, the feasibility of a systematic information on AD of patients with severe tumour diseases at an early stage was confirmed in recent studies [34, 35].

Although the legislative framework [36, 37] and the educational training [38, 39] of medical students have evolved over the last few decades in order to restore the patient's central place in the care process, young clinicians remain reluctant to discuss advance directives with their patients, as demonstrated in a study including young general practitioners who, although generally in favor of implementing the provision, only saw carcinologic disease as an opportunity to inform their patients in 60% of cases [22]. All these studies tend to emphasize the importance of creating trainings including extensive information on the safety and benefit of bringing up AD [31, 40]. Simulation-based communication-training programs would be effective to that effect [41, 42]. Another avenue to consider for easier implementation of advance directives would be the implementation of systematic information on the existence of advance directives and their collection during the initial management of patients independently of the severity of the disease [43].

In order to get around the difficulties inherent to advance directives, 68.5% of respondents consider that a person of trust would be more relevant than advance directives for patient care because of its dynamic nature. The role of the Trust person also seems to be appreciated by patients. Indeed, in two different studies (HELP [44] and SUPPORT [45]) of elderly and cancer patients, 70% and 78% respectively were comfortable with their loved ones making medical decisions for them if they became incapacitated [46]. However, patients rarely clearly discuss their preferences for medical care, especially in hypothetical acute and serious situations, with their relatives or trust person. The match between the patient's decisions and those of his or her trust person would be as low as 30% [44, 47, 48]. Similarly, it would appear that both physicians and trust persons are not able to correctly assess what their patient/relative would consider an acceptable quality of life [49]. The responsibility inherent in the function of the trust person is not void. Involvement in the decision to intensify therapy is a source of psychological disturbance for the patient's relatives, and even more so for the trust person [50]. Moreover, the latter may be more inclined to keep their loved one alive than to focus on his or her comfort [51]. Thus, if the trusted support person were to become one of the main actors in the care of a patient who has become incompetent, they should probably not replace AD but be linked to them.

This study has several limitations. The response rate is unsatisfactory. However, to our knowledge, this is the first study conducted among French hospital oncologists. Moreover, the representativeness seems to be respected considering that responses are widely distributed throughout the country, and the proportion of fellows, attendings and professor are respected.

There is also a recruitment bias. Indeed, oncologists who responded to the questionnaire are probably the practitioners most interested in AD. Moreover, the proportion of respondents with palliative care experience (37%) is higher than in the general population of French oncologists. All of these responses must therefore be interpreted as potentially more favorable to AD than the general opinion of oncologists.

Finally, as the answers are declarative, we have no certainty about their veracity on a daily basis. Nevertheless, as the survey is anonymous and purely factual, without any invitation to change practices, there does not seem to be any reason to motivate respondents to change their point of view when filling in the questionnaire.

Advance Directive

Critical Care

ICU

Intensive Care Unit

IQR

Interquartile Range

standard deviations

Three quarters of oncologists consider that advance directives can be useful. However, only one third of the oncologists regularly discuss them. The lack of confidence in AD is mainly due to the fear of creating or increasing patient anxiety, as well as to the perception that they are not appropriate for the patient's medical situation.

Contributors:

Conceptualization, AC, KS, APB, FP, JPL. Methodology: AC, FP, JPL, JOB. Delphi procedure: AC, KS, APB, MM, MC, JOB, CB, JPL, FP, REQUIEM study group and Experts of SFC and SFGM-TC. Design of the questionnaire: AC, KS, APB, MM, MC, JOB, CB, JPL, FP. First draft: AC, KS, FP. review and editing: FP, JPL, CB, JOB and MM, MC. All authors have read and agreed to the published version of the manuscript.

Competing of interests:

None

No author has any conflict of interest to declare.

Funding: This work was sponsored by the Groupe Hospitalier Paris Saint-Joseph.

Role of funder: The sponsor had no role in the design of the study, the collection and analysis of the data, or the preparation of the manuscript.

Aknowledgements: the authors want to warmly thank the experts of the SFC (Société Française du Cancer/Cancer French Society) and of the SFGM-TC (Societé francophone de greffe de moelle et de thérapie cellulaire / French-speaking society for bone marrow and cell therapy) for their precious assistance in the ethical reflexion and design of the survey.

Availability of data:

The datasets used and/or analysed during the current study are available from the REQUIEM study group on reasonable request.

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Table 1 : Demographic caracteristics of respondents

Caracteristics		N = 410
Number of years of clinical practice		11 [6-20]
Status	Fellow	101 (24,6)
	Attendings	270 (65,9)
	Professor	39 (9,5)
Hospital type	University hospital	152 (37,1)
	Cancer center	234 (57,1)
	Regional hospital	23 (5,6)
Critical care experience		197 (48,0)
Palliative care experience		153 (37,3)

Values are expressed as medians [IQR] or mean (%)

No competing interests reported.

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Oncologists’ perspective on Advance Directives, a French national prospective cross-sectional survey – the ADORE Study

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