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Hematologists’ perspective on advance directives, a French national cross-sectional survey – the ADORE-H study

BMC Medical Ethics volume 25, Article number: 142 (2024) Cite this article

Abstract

Background

The onset of hematological malignancies can lead to acute and critical situations. It can also result in adverse outcome despite the significant advancements made in their therapeutic management. In this context, advance care planning and, in particular, advance directives (AD) play an essential role. However, the use of AD in patients with malignant hematological conditions remains very rare.

Material & methods

The aim was to evaluate the perception of AD by hematologists. We conducted a national online survey in France. All hematologist working in a hospital setting and treating malignant hemopathies were solicited. The questionnaire covered five areas: personal perception of AD; assistance in writing AD; patient information about AD; use of ADs; and demographic data.

Results

318 hematologists (33.7% of the whole population), working in 103 different centers across France participated in the study. 72.6% (n = 231) of the respondents believed that AD could be beneficial for patient’s care. Only 32.7% talked about AD with their patients on a regular basis. The lack of utilization was correlated with the fear of creating anxiety for the patient (64.9%; n = 172) or for relatives (30.9%; n = 80), as well as the belief that AD were deemed inappropriate for their patients (57.8%; n = 145). 19.5% (n = 62) of responding hematologist offered their assistance to patients in writing AD. This proportion was higher in physicians who had previously worked in palliative care unit (35,6% vs. 16,8%, p = 0,0004).

Conclusion

The majority of the surveyed hematologist hold a positive opinion about AD. However, only a few discuss the matter with their patients. The fear of consequences for patients and relatives, particularly anxiety, remains the primary barrier to providing information about AD.

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Introduction

Despite significant improvement in their therapeutic management, malignant hemopathies remain associated with considerable morbidity and mortality [1,2,3]. This is especially true in the elderly population, which constitutes the majority of patients [4]. The disease and its subsequent treatments may render patients more susceptible to acute medical complications [5, 6] due to factors such as malnutrition, immune alterations and treatments’ toxicity [7, 8]. Adverse progression of the hematologic malignancy or an acute complication requiring resuscitation can impact patients’ functional prognosis [4] and may even be life threatening [9,10,11]. Therapeutic choices, particularly the intensity of care associated with the management of acute and life-threatening intercurrent events, should be decided with the patient. While changes in care for chronic malignancies are generally not urgent, allowing physicians ample time to discuss options with patients, situations requiring resuscitation often find patients unable to make decisions, necessitating immediate and prompt choice from physicians. This urgency may not allow for consultation with family members or other parties. Thus, a form of anticipated wishes becomes particularly valuable in these situations.

Advance directives (AD) originated in the United States of America (USA) with the concept of the « living will » created by Luis Kutner [12]. Following this initiative, the popularity of AD rapidly grew in the USA, and similar legal notions emerged in many countries. In France, AD were first introduced into legislation in 2005 and their significance was reinforced by law in 2016 [13].

While AD are associated with greater respect for patients’ wishes and increased satisfaction with received care [14, 15], they remain underutilized [16, 17], even in case of malignant diseases [18,19,20,21]. The proportion of patients with hematologic condition who have documented AD is insufficient [22, 23], with an estimated percentage as low as 6.1% of patients [24]. Numerous factors are associated with the lack of AD in the population of patients with a cancer diagnosis [25]. While patients acknowledge that AD are crucial and beneficial for aligning their care with their preferences [26,27,28], difficulties in drafting them and communication gaps with their physicians partly contribute to their underutilization [25]. The relevance and utility of AD in managing patients with hematologic conditions are currently unclear. The primary aim of this study is to gather hematologists’ perceptions of AD.

Methods

Study design

This study was a cross-sectional national survey based on volunteer participation and adhered to the applicable CROSS guidelines [29].

Study population

The population of interest consisted of all hematologist working in a private or public French hematology department. Residents, non-hematologist physicians, and hematologist working outside a hospital setting were not included in the study.

Questionnaire

The questionnaire was developed in accordance with the current redaction guidelines [30,31,32,33]. The various themes covered were determined using the DELPHI method by experts from the REQUIEM study group as well as from the professional society of hematology (SFGM-TC (Societé francophone de greffe de moelle et de thérapie cellulaire / French-speaking society for bone marrow and cell therapy)), from the French Society of Cancerology (SFC société Française de Cancérologie), and incorporating critical elements highlighted by previous research [34,35,36,37,38,39].

A pretest of the survey was conducted by members of the REQUIEM group, including intensivists, palliative care physicians, general practitioners and pharmacists, as well as members of the SFC. However, no pilot study was performed to avoid losing potential respondents.

Nineteen items across five different domains were defined in the questionnaire: the physician’s participation in informing patients about AD, assisting patients in writing AD, respecting AD when needed, and demographic and practical data regarding the physician’s department and experience. The initial and English versions of the questionnaire are available in the appendix (appendix n°1).

Precautions

The absence of elements that could influence responses or constitute a judgement of values has been verified by the research team and confirmed by the ethics committee responsible for the study evaluation. Details of the precautions taken are described in supplementary material.

Ethics approval and consent to participate

The study was conducted in accordance with the Declaration of Helsinki. It is part of the French methodology of reference MR003 and an ethical approval was obtained from an ethics committee (Groupe Ethique & Rercherche Médicale - GERM. Groupe hospitalier Paris Saint Joseph. IRB 00012157). The MR003 pertains to research that does not require specific consent (« Recherches dans le domaine de la santé sans recueil du consentement » Official text. Delibération n° 2018 − 154 of May 3rd 2018; text n°109 of the Journal officiel de la République française). In this context, the ethics committee did not require formal consent from the participants. Information for respondents was provided in writing, in the form of an introductory paragraph at the beginning of the questionnaire. The absence of a response to the questionnaire was considered a refusal to participate. Conversely, completion of the questionnaire constituted de facto acceptance of participation in the study.

Questionnaire administration

This was an electronic survey administered via Googleform® and LimeSurvey® plateforms.

Solicitations e-mails were sent using a list of practicing physicians from all French hematology departments. The questionnaire was distributed to the targeted physicians through a center-specific link included in a personalized e-mail. The initial e-mail was sent to the entire target population within the same week, followed by reminders spaced a few months aparts. Centers were informed of their response rates in comparison to other centers.

The questionnaire was open from January to June 2021.

Study outcomes

The primary outcome was to evaluate of the perceived interest and limitations of AD as recognized by hematologists in their daily clinical practice. Secondary outcomes included parameters associated with information on AD, assistance with AD writing, effective clinical use of AD, potential new data required to help patient write relevant AD, and the perceived relevance of “person of trust” (definition provided in supplementary material).

Statistical analysis

Data were exported to a single Excel® file and expressed as means with standard deviation. The correlation between two qualitative parameters was analyzed using either a Chi-squared (χ²) test or a Fisher exact test, depending on the sample size. A Bonferroni adjustment was performed due to multiple analysis. Differences were considered significant when the alpha risk was less than 5% after Bonferroni correction.

Results

Study population

Between January 2021 and July 2021, 318 clinician hematologists (33.7% of the target population) responded to the questionnaire. Among the respondents, 68.9% (n = 219) were non faculty attendings. 49.3%(n = 157) of the hematologist worked in university hospitals, 9.7% (n = 31) in cancer centers and for 34.5% (n = 110) in non-university hospitals. They had practiced medicine as hematologists for an average of 14.7 ± 9.5 years. Characteristics of the respondents are summarized in Tables 1 and 2, as well as supplementary table S2 and S3.

Table 1 Characteristic of the respondents
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Table 2 Number of years as a hematologist
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Hematologists’ opinion on advance directives

231 (72.6%) of the hematologists believed that advance directives may be beneficial for their patients’ therapeutic management. The distribution of the different opinions is available in Fig. 1 (Supplementary Table S1a&b, and Figure S1). Physicians’ opinions on AD were not related to their professional status, the type of center, or previous experience in critical care or palliative care (Table 1. Supplementary Table S1c).

Fig. 1
figure 1

Hematologists perception of advance directive in their clinical practice

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Additionally, 67.3% (n = 214) of the hematologists surveyed felt that a person of trust who was present and well-informed of the patient’s wishes would be more appropriate than advance directives (details in Supplementary Table S6).

Practical implementation of advance directives

Hematologists reported that they “systematically” or “often” informed their patients about AD in 3.5% (n = 11) and 29.2% (n = 93) of cases, respectively. Information was “rarely” or “never” provided by 67.2% (n = 214) of the respondents (see Fig. 2). Information about the person of trust was shared “systematically” and “often” by 59.7% (n = 190) and 27.4% (n = 87) of cases, respectively (Fig. 3 and Supplementary Table S4).

Fig. 2
figure 2

Frequency of Advance directive’s mention

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Fig. 3
figure 3

Frequency of person of trust’s mention

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The most appropriate moments to discuss AD with patients were during disease progression despite active treatment (68,8%; n = 219), and when patients adressed prognosis or life-threatening risk (60,1%; n = 191) (Fig. 4).

Fig. 4
figure 4

Timing for initiating a discussion on advance directives

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Among the respondents, 19.5% (n = 62) assisted their patients in drafting their AD (Supplementary Table S5). Hematologist who had experience in palliative care during their residency reported helping their patients significantly more often that those without that experience (35.6% vs. 16.8%, p = 0.0004). This assistance in drafting AD was due to a patient request in 88.7% of cases (see Fig. 5).

Fig. 5
figure 5

Context for Assistance in writing advance directive by the hematologist

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Limitations to Advance Directive implementation

Reasons for avoiding discussions about AD among hematologists who do not systematically adress AD, (n = 267) include: the fear of creating anxiety for the patient (64.4%; n = 172), the perception that the moment is not appropriate when treatment is effective (54.1%; n = 145), and the fear of causing anxiety for patient’s relatives (30,0%; n = 80) (see Fig. 6).

Fig. 6
figure 6

Reasons to avoid discussing advance directives with the patients

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Traceability of the designation of a « person of trust » and advance directives

The collection of AD was formalized in 44.3% of the departments.

A dedicated section for documenting the person of trust in patients’ record was identified in 65.7% of cases.

Execution of advance directives

When AD exist, 11.6% (n = 37) of the respondents reported that they had disregarded them in evaluating of therapeutic intensity or limitations.

The primary reason for this non-compliance with AD was that an acute emergent situation arose while the patient was not in an end-of-life care scenario (94.6%). Concerns that the patient may have changed their mind were expressed by 24.3% of respondents. Other reasons are detailed in Fig. 7

Fig. 7
figure 7

Reasons for not respecting available advance directives

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Possible improvements for advance directives

For 90.3% of hematologists (n = 287), patients need more information to create AD that accurately reflect their informed wishes. This information is considered essential regarding the potential evolution of chronic hemopathy and possible care in the event of an acute and severe situation. 76.0% (n = 218) of the respondents believe that broader information on how those AD will be utilized is necessary. Details of these elements can be found in Fig. 8.

Fig. 8
figure 8

Information required to improve patients’ expression advance directives

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Interpretation

Our national survey revealed that hematologists are interested in advance directives. However, clinicians seldom initiate conversation on this subject with their patients, typically doing so only in the most critical situations or when the patient specifically requests such information. Similarly, only a minority of physicians assist their patients in drafting AD, although those with prior experience in palliative care are more likely to do so. Reluctance to provide information on AD is often justified by concerns about inducing anxiety in patients and their relatives. Additionally, clinicians may believe that the current clinical situation is not conducive to such discussions. Some may choose not to adhere to existing AD, deeming the situation inconsistent with end-of-life care believing that the patient’s preferences may have changed since the directives were created.

One of the cornerstones of the Western bioethical principles underlying AD is patient autonomy. Our results particularly emphasize the persistence of marked medical paternalism, both in the dissemination of information about AD, and in their application. Hesitancy to discuss AD often centers on concerns about causing anxiety in patients and their families. Interestingly, among hematologists with a favorable opinion of AD, the fear of creating anxiety in patients was even more pronounced (72% vs. 51%, p = 0.004). While this concern is frequently noted in literature, it is likely unfounded. Alexi Wright et al. demonstrated that patients who engaged in discussions about end-of-life issues and care plans did not experience greater stress, depression, or sadness compared to those who had not had these conversations with their physicians [40]. Furthermore, end-of-life discussions are associated with a reduced likelihood of patients receiving aggressive end-of life care, and they contribute to an enhanced quality of life for their relatives, along with a decreased risk of depressive symptoms or regret [15, 40]. Another barrier highlighted is the belief that AD are not appropriate when patients are receiving effective treatment. However, numerous studies have shown that early end-of-life discussions can help patients avoid aggressive and unwanted care [40,41,42]. In a qualitative study involving patients and hematologist in the context of hematopoietic stem cell transplantation (HSCT) [43], the absence of an institutional policy for the systematic discussion of AD was identified as a major obstacle to their implementation. Conversely, the early and systematic initiation of discussions about AD outside of acute deterioration phases, along with the routine documentation of these discussions, fosters an approach that encourages patients to reflect on their care preferences [44]. Patients believe that early discussion about end-of-life issues, even at the time of diagnosis, would be beneficial for developing a personalized care plan [43, 45, 46]. The main purpose of AD is to provide patients with sufficient time to reflect on their situation, during periods of disease stability, enabling them to anticipate acute complications effectively, and ensuring that their wishes are understood in such situations. More than three-quarters of the hematologists in our study highlighted the opportunity that AD provide to better understand patients’ wishes. To address the difficulties that doctors encounter- whether related to discussing end of life care, or concerns about creating anxiety for patients or jeopardizing the therapeutic alliance- Benjamin Freedman proposes an approach that involves systematically offering to discuss the topic, allowing patients the freedom to decide whether or not to continue the conversation [47].

In line with the literature, 90.3% of hematologists in our study felt that patients need specific information to write their AD. Without knowing the situations they are likely to face or how AD will be utilized by doctors, patients may find it very difficult to complete their directives [20]. Some respondents spontaneously reported that their patients might modify their AD after receiving a clear explanation (see Appendix “correspondence extracts). The involvement of a healthcare professional can encourage patients to create informed advance directives, similar to the approach of “Physician Orders for Life-Sustaining Treatment” (POLST) [48].

Therefore, it is essential to identify the individual best positioned to inform patients about AD. Patients generally have a strong bond of trust with their family doctor, which leads them to frequently identify this physician as a preferred partner for discussion about AD [20, 49, 50]. It is noteworthy that many clinicians believe it is appropriate for any healthcare professional to engage in discussions about goals of care and the end of life issues [51,52,53]. Such interventions would facilitate patient management that is tailored to their needs and wishes.

This study has several limitations. First, only a third of French hospital hematologists responded to our questionnaire, which may introduce a recruitment bias; the lack of response could indicate a lack of interest in the subject, further emphasizing the lack of involvement in the implementation of AD in practice. Second, we did not collect information on the type of hematologic conditions typically managed by the responding hematologists. Nonetheless the only relevant difference lies in the possibility of performing HSCT. However, no difference in results were observed between centers performing transplants and those not performing them. Additionally, we did not explore the influence of hematologists’ personal perception of AD on their implementation for patients. To our knowledge there is existing literature that examines this question.

Conclusion

Nearly three-quarters of French hospital hematologists surveyed considered advance directives to be an interesting tool; however, only a third of them discussed the subject frequently or systematically with their patients. Hematologists’ discomfort with information about AD and their uncertainty regarding their relevance to patient care are significant limiting factors to date. Further training, research confirming the psychological and other safety of patient information, systematization of information, and the establishment of informative tools are needed to improve the quality of patient choices.

Data availability

No datasets were generated or analysed during the current study.

Abbreviations

AD:

Advance directives

HSCT:

Hematopoietic stem cell transplantation

POLST:

Physicians order for life-sustaining treatments

USA:

United states of America

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Acknowledgements

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.

Funding

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

Author information

Authors and Affiliations

  1. Department of Anesthesiology and Intensive Care, Hôpital Ambroise Paré, Assistance Publique-Hôpitaux de Paris, Paris, France

    K. Serey

  2. Department of Anesthesiology and Intensive Care, Hôpital Saint-Antoine and Hôpital Tenon, Assistance Publique-Hôpitaux de Paris, Paris, France

    A. Cambriel

  3. DMU DREAM, Sorbonne University, Assistance Publique-Hôpitaux de Paris, GRC 29, Paris, France

    A. Cambriel

  4. Department of Anesthesiology, Perioperative and Pain Medicine, Stanford University School of Medicine, Stanford, CA, USA

    A. Cambriel

  5. Department of Anesthesiology, Cancer University Institute of Toulouse-Oncopole, Toulouse, France

    Adrien Pollina-Bachellerie

  6. Department of Clinical Hematology and Cellular Therapy, Clermont-Ferrand University Hospital Center, Clermont-Ferrand, France

    Jacques-Olivier Bay

  7. Cancer Resistance Exploring and Targeting. EA7283, INSERM CIC501, BP 10448, Center, Clermont-Ferrand, France

    Jacques-Olivier Bay

  8. Department of Supportive and Palliative Care, Institut Curie, Paris, France

    Carole Bouleuc

  9. Department of Oncology and Supportive Care, Foch Hospital, Suresnes, France

    Laure Ladrat

  10. Pôle Onco-Hématologie, Service D’oncologie Médicale et de Thérapie Cellulaire, APHP— Hôpitaux Universitaires de L’est Parisien, Paris, 75020, France

    Jean-Pierre Lotz

  11. Medical and Surgical Intensive Care Department, Groupe Hospitalier Paris Saint Joseph, 185 Rue R Losserand, Paris, 75674, France

    Francois Philippart

  12. REQUIEM, Research/Reflexion on End of Life Support Quality in Everyday Medical Practice, Paris, France

    K. Serey, A. Cambriel, Adrien Pollina-Bachellerie, Jean-Pierre Lotz & Francois Philippart

Authors
  1. K. Serey
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  2. A. Cambriel
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  3. Adrien Pollina-Bachellerie
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  4. Jacques-Olivier Bay
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  5. Carole Bouleuc
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  6. Laure Ladrat
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  7. Jean-Pierre Lotz
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  8. Francois Philippart
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Contributions

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

Corresponding author

Correspondence to Francois Philippart.

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Serey, K., Cambriel, A., Pollina-Bachellerie, A. et al. Hematologists’ perspective on advance directives, a French national cross-sectional survey – the ADORE-H study. BMC Med Ethics 25, 142 (2024). https://doiorg.publicaciones.saludcastillayleon.es/10.1186/s12910-024-01146-5

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  • DOI: https://doiorg.publicaciones.saludcastillayleon.es/10.1186/s12910-024-01146-5

Keywords

BMC Medical Ethics

ISSN: 1472-6939

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