Creating an appropriate model of advance care planning for women with breast cancer, Delphi method

doi:10.21203/rs.3.rs-1843342/v1

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Creating an appropriate model of advance care planning for women with breast cancer, Delphi method

https://doi.org/10.21203/rs.3.rs-1843342/v1

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Introduction:

Breast cancer, the most common cancer in women, affects young women. Advance directives allow the expression of one's wishes concerning end of life wishes but they are poorly drafted. General practitioners report, in fact, real difficulties in talking about the end of life.

Purpose

This study aims to propose a model of advance directives that facilitates the exchange between the doctor and a breast cancer patient.

Methods

It is the result of a consensus of experts, obtained by the Delphi method. Twenty-one experts were included. A Delphi survey consisting of three rounds. The panel of experts were caregivers in contact with breast cancer patients, a Doctor of Sociology, deputy director of the National Center for Palliative Care and End of Life, as well as a former patient in remission from cancer. breast, association president. This new innovative model obtained takes into account in a more intimate way the moral values, the wishes of care and their environment.

Results

The first round lasted three weeks. Of the 29 questions posed to the experts, 20 were deemed relevant by over 70% of the experts. The second round lasted four weeks. Nine reworded questions were addressed to the experts. Eight of them were validated. The last question was validated in the third round. All experts responded to all three rounds.

Conclusion

The model created is a tool to create a more efficient dialogue between the physician and the patient. It is intended to be a faithful testimony of the patients’ wishes.

advance directive

breast cancer

end of life

experts' consensus

Deaths due neoplasms are expanding threats to global health. At the same time, there were large increases in years of life lost from neoplasms (1). Breast cancer, the first female cancer, had 58500 new cases in 2016 and affected young women as the average age at diagnosis was 63 years. 20% of breast cancer diagnosis concerned women under the age of 50. (2)

Vincent Lambert's highly publicized story shows the importance of writing advance directives (AD) and designating a trusted person as healthcare proxy (3). The Claeys-Leonetti Law of 2 February 2016 introduces the AD, making it possible to spell out the wishes of the person regarding his end of life, the conditions of pursuing, limiting, stopping or refusing of care treatments. Any adult can write his AD. They can be revised and revoked at any time, and are enforceable against the doctor’s recommendations (4).

In February 2021, the “« Brulé, Ville et Associé » (BVA) opinion, an expert group on behavior in Human Sciences and Data Sciences, studied the opinion of French people over 50 on the end of life. The survey highlights the low rate of writing ADs: only 18% of the participants over 65 have written them; 52% of the study group was unaware of their existence (5, 6). Other studies have shown the difficulty it is for caregivers to talk about a serious illness or death with their patients (7, 8). Doctors spoke of a real fear of causing anxiety in patients by talking to them about AD and difficulties in finding the right time for discussion (9, 10). Finally, most general practitioners say they have little training in palliative care communication (11).

Based on these findings, we asked ourselves whether it was possible to create an AD model that was appropriate for all adults with breast cancer, regardless of the stage of the disease.

We carried out a Delphi consensus method, summarized in Figure 1. (12, 13)

Preparation of the questionnaire

The introductory step was to search for existing AD s in France, Belgium, Switzerland, Luxembourg, Spain, Germany, USA, England, Australia to develop a first version of an AD model. This initial model consisted of questions subdivided into three themes: moral values of the subject, wishes on medical treatments, wishes on supportive care (paramedical care, care environment and accompaniment).

Selection of experts

We asked the following experts: caregivers involved in the care of breast cancer patients, a sociologist and a patient association president. Each expert had to provide his or her consent in writing.

Distribution of the questionnaire

The Sphinxdeclic^© software allowed the realization of the Delphi rounds. The experts accessed each round by computer. For each question, experts rated its relevance from 1 (not at all relevant) to 10 (quite relevant). They could propose a redrafting or a commentary.

Analysis of responses

For each question, the position of the group and the degree of convergence were assessed. The position of the group was given by the median score: irrelevant question (median ≤ 3), equivocal (4 ≤ median ≤ 6) relevant question (median ≥ 7). The opinion of the group was consensual if at least 70% of the experts gave a score ≥ 7 (question validated) or a score ≤ 3 (question removed). Validated and eliminated questions were not submitted again in the next rounds. Questions with a median score between 4 and 6, or with a low degree of convergence (less than 70%) were reformulated and submitted again in the next round.

The algorithm for analyzing the experts' answers is schematized in Figure 2.

Each round was subjected to the same analysis until the final AD model was validated.

Twenty-one experts were included. Table 1 describes their characteristics.

Table 1

Characteristics of selected experts
	Profession	Discipline and type of exercise	Gender	Age	Particular role or distinction
1	Nurse	Hospital, Oncology Department and Palliative Care Unit (PSU)	F	45
2	Doctor	General Practitioner, Head of Mobile Palliative Care Unit (UMSP)	M	54
3	Doctor	Oncologist, formerly hospital	F	49	Departmental Council of the Order of Physicians 17
4	Sociologist	Doctor of Sociology	F	50	Deputy Director of the National Center for Palliative and End-of-Life Care
5	Pensioner		F	68	Former patient, President of a patient association
6	Doctor	Gynecologist, Head of Pole in Gynecology-Obstetrics	M	60
7	Doctor	General practitioner, Hospital, oncology department	M	30
8	Nurse	Hospital, USP	M	50–55
9	Doctor	Emergency Physician, Continuing Care Unit	M	52	Author of articles for the Société de Réanimation de Langue Française
10	Psychologist	Hospital, Department of General Oncology and Oncohematology	F	24
11	Psychologist	Hospital, USP and Mobile Palliative Care Team (PMSC)	F	37
12	Nurse	Hospital, USP and PMSC	F	56	University Diploma "Pain"
13	Nurse	Hospital, Home Hospitalization Service (HAD)	F	38	Executive quality department of the HAD service
14	Retired physician	Generalist, hospital in Geriatrics and USP	M	63
15	Doctor	Generalist, Head of USP	M	62
16	Doctor	Gynecologist, Department of Gynecology Obstetrics and Senology	M	45
17	Psychologist	Hospital, HAD department	F	29
18	Doctor	Generalist, Head of Department and Coordinator of the Haute Autorité de Santé (HAD)	F	38
19	Doctor	Generalist, liberal	M	64	Associate Professor of General Medicine, University Internship Master
20	Doctor	Generalist, hospital in USP	F	53
21	Doctor	Generalist, liberal	F	60	Associate Professor of General Medicine, University Internship Master

Round Analysis

The first round lasted three weeks. Of the 29 questions asked to the experts, 20 were deemed relevant by more than 70% of the experts. The remaining 9 questions were reformulated and reviewed in the second round. For the second round, the experts were allowed not to answer a question if they felt that it was not part of their area of expertise. The second round lasted four weeks. Eight out of nine questions were validated by consensus. The last question was submitted to the group for a third and final round that lasted a month. This last question was validated in the third round.

Table 2

Results of the three rounds.
Delphi Round Results	Duration	N
First round	3 weeks
Number of questions submitted		29
Questions validated by consensus		20
Unvalidated questions		9
Number of participating experts		21
Number of experts lost to sight		0
Second round	4 weeks
Number of questions submitted		9
Questions validated by consensus		8
Unvalidated questions		1
Number of participating experts		21
Number of experts lost to sight		0
Third round	4 weeks
Number of questions submitted		1
Questions validated by consensus		1
Unvalidated questions		0
Number of participating experts		21
Number of experts lost to sight		0
TOTAL: Final Document
Number of questions validated		29
Experts who responded in full		21

Consensus was reached in three Delphi rounds thanks to the evaluation of the 21 experts. The multidisciplinary nature of the experts made it possible to confront very different points of view based on solid field experience. The involvement of the experts, all of whom participated in the entire study, should be pointed out.

Approaching the subject of the end of life, of death, is not easy. (14) In the article A physician's guide to talking about end-of-life care (15), Richard B Balaban describes a way of approaching end-of-life issues. It proposes to initiate discussions leading the patient to a general reflection on the end of life, and then to specify the wishes through continuation of care oriented questions. It is in this spirit that our DA form was designed. It addresses both moral values, wishes regarding medical care and support wishes. Easy at first, it begins with more light questions, allowing an exchange between the doctor and his patient on what brings him comfort before tackling the more difficult questions, such as respiratory assistance, resuscitation or the treatment of pain and anxiety.

Three objectives emerge from this DA model:

1 - Get the patient to reflect on what matters to her, and what she is willing to accept or not to stay alive.

2 - Open an exchange between the doctor and his patient on her wishes and care projects. (16)

3 - Guide caregivers when the patient no longer has the ability to communicate, allowing him to adapt her environment, to bring her comfort and offer personalized support.

The “Société de Réanimation de Langue Française” offers an AD form which elaborates in detail the sequels a patient can tolerate or not. Our AD model provides few examples of care-related sequels. We insisted on what the patient likes, her values, what brings her comfort. These questions, less focused on technique, put the patient back at the center of care, as a whole, reminding us that she is not just a body to be cared for but a person with a history, beliefs and wishes regarding her end of life.

In a Chinese study, five factors for an end of life in good conditions are formulated by patients with metastatic breast cancer: managing physical symptoms, avoiding unnecessary prolongation of life, preserving dignity, alleviating the burden on the family and deepening ties with loved ones (17). Our AD informs caregivers on what the patient wants for her medical care, what matters to her, and relieves loved ones of decisions that may be too difficult to take.

ADs assume continuity in the patient's wishes and perceptions of life, but a person can change their mind (18). In the USA, patients are offered to review their AD when one of the 5Ds occurs: change of decade, Death of a loved one, Divorce, Diagnosis of a serious illness, significant Decline in body functions (20). In Canada, the Advance Care Planning (ACP) incorporates the psychosocial dimension as it does medical considerations and offers to update the patient’s expectations at each new stage of care, as in Switzerland (20).

Decreased self-esteem, adaptation of the couple to the stress of cancer, difficulties at work, feelings of loneliness and misunderstanding are recurring issues. To meet the patient’s expectations, the role of the general practitioner goes beyond assessing the tolerance to treatments, yet, in the Lloyd-Williams’ study, less than a third of general practitioners felt that they had received an adequate training on pain and symptom management and less than 10% thought that their competency of psychological support was enough (21, 22). However, the quality of communication could be greatly improved if training programs for general practitioners were developed (23).

A list of competent professionals to whom to refer patients: social workers, psychologists, sexologists, socio-beauticians, physiotherapists trained in sports rehabilitation, could also improve the overall care of cancer patients (24).

Our advance directives model is the result of a consensus of 26 experts involved in the field. It enables a dialogue between the physician and a patient and provides a reflection on what matters, the moral values and wishes of patients for their lives and their care. It facilitates the dialogue, improves our knowledge of breast cancer patients, and allows advanced planning of a therapeutic project centered on the patient. ADs remain adaptable as the patient’s wishes and disease progress. They are complementary to a good network of contacts and appropriate training for general practitioners.

Advance directives

BVA

“Brulé, Ville et Associé”

HAD

Haute Autorité de Santé

All cited authors have seen and approved the final version of the manuscript. The authors have no relevant financial or non-financial interests to disclose. The authors did not receive support from any organization for the submitted work.

Ethics approval : 'Not applicable'

Consent to participate : Each expert had to provide his or her consent in writing.

Consent for publication : 'Not applicable'

Conflict of interest : The authors declare no competing interests.

Contribution: AM, BF contributed to the conception and design of the work and the analysis and interpretation of the data for the work. YC AM BF participated in writing the work and critically reviewing it; YC, AM, CB, MB, JM, BF approved the final version for publication and agreed to be responsible for all aspects of the work.

Acknowledgments:

There were no payments to participants. We thank all participants : Laurent Montaz (Poitiers, France), Cédric Nadeau (Poitiers), Imane saleh Jawiche (Poitiers), Ceveau Nicolas(Poitiers), Thierry Valette (La Rochelle, France), Valérie.Victor Chapelet (Neuville-de-Poitou, France), Anne Bernard( La Rochelle, France), Virginie.Verliac (Saintes, France), Julien Beguec (La Rochelle, France), Dominique Cambon (Saintes, France), Denis Del Nista (Rochefort, France), Marcel Venault (Confolens and Ruffec, France), Magali Audis (Poitiers, France), Mme Jougon (Poitiers, France), Mr Clément (Poitiers, France), Mme Henoux (Poitiers, France), Gaëlle Puaud (Poitiers, France), Anne-Charlotte Foubert (Poitiers, France), Marie Denis (Poitiers, France), Sandrine Bretonnière (Paris, France), Annie Brousse (Paris, France)

GBD 2017 Causes of Death Collaborators. Global, regional, and national age-sex-specific mortality for 282 causes of death in 195 countries and territories, 1980–2017: a systematic analysis for the Global Burden of Disease Study 2017 [published correction appears in Lancet. 2019 Jun 22;393(10190):e44] [published correction appears in Lancet. 2018 Nov 17;392(10160):2170]. Lancet. 2018;392(10159):1736–1788.
Defossez G, Le Guyader-Peyrou S, Uhry Z, Grosclaude P, Colonna M, Dantony E, et al. National estimates of cancer incidence and mortality in metropolitan France between 1990 and 2018. Saint-Maurice (Fra): Santé publique France; 2019. p. 372.
Merot, N., Pourchet, S. (2014). Affaire Vincent Lambert: l’émergence des droits des proches. Médecine Palliative: Soins de Support-Accompagnement-Éthique, [The Vincent Lambert case: the emergence of the rights of relatives. Palliative Medicine: Supportive Care-Accompaniment-Ethics] 13(1), 39–43.
Le Dorze M, Kandelman S, Veber B; SFAR's Ethics Committee. End-of-life care in the French ICU: Impact of Claeys-Leonetti law on decision to withhold or withdraw life-supportive therapy. Anaesth Crit Care Pain Med. 2019 Dec;38(6):569–570. doi: 10.1016/j.accpm.2019.10.013.
Bravo G, Dubois MF, Wagneur B. Assessing the effectiveness of interventions to promote advance directives among older adults: a systematic review and multi-level analysis. Soc Sci Med. 2008 Oct;67(7):1122–32. doi: 10.1016/j.socscimed.2008.06.006. Epub 2008 Jul 20.
Fagerlin A, Schneider CE. Enough. The failure of the living will. Hastings Cent Rep. 2004 Mar-Apr;34(2):30–42.
Hirsch G. Illness progression, advance directives, support person: how and when to communicate with the patient?. Rev Prat. 2017 Dec;67(10):1134–1138.
Yoo SH, Choi W, Kim Y, Kim MS, Park HY, Keam B, Heo DS. Difficulties Doctors Experience during Life-Sustaining Treatment Discussion after Enactment of the Life-Sustaining Treatment Decisions Act: A Cross-Sectional Study. Cancer Res Treat. 2021 Apr;53(2):584–592. doi: 10.4143/crt.2020.735.
Vinant P, Rousseau I, Huillard O, Goldwasser F, Guillard MY, Colombet I. Respect des volontés en fin de vie: étude de faisabilité d'une information sur la personne de confiance et les directives anticipées [Respecting patient's end of life wishes: feasibility study of an information on surrogate and advance directives]. Bull Cancer. 2015 Mar;102(3):234 – 44. French. doi: 10.1016/j.bulcan.2015.01.009.
De Vleminck A, Houttekier D, Pardon K, Deschepper R, Van Audenhove C, Vander Stichele R, Deliens L. Barriers and facilitators for general practitioners to engage in advance care planning: a systematic review. Scand J Prim Health Care. 2013 Dec;31(4):215–26.
Slort W, Blankenstein AH, Wanrooij BS, van der Horst HE, Deliens L. The ACA training programme to improve communication between general practitioners and their palliative care patients: development and applicability. BMC Palliat Care. 2012 Jun 27;11:9.
McPherson S, Reese C, Wendler MC. Methodology Update: Delphi Studies. Nurs Res. 2018 Sep/Oct;67(5):404–410.
Barrett D, Heale R. What are Delphi studies? Evid Based Nurs. 2020 Jul;23(3):68–69.
Bacqué MF, Mertz J, Parler améliore la vie subjective des mourants: revue de la littérature, [Talking improves the subjective life of the dying: a review of the literature] Médecine Palliative 2021, ISSN 1636–6522
Balaban RB. A physician's guide to talking about end-of-life care. J Gen Intern Med. 2000 Mar;15(3):195–200.
Grossman CH, Brooker J, Michael N, Kissane D. Death anxiety interventions in patients with advanced cancer: A systematic review. Palliat Med. 2018 Jan;32(1):172–184. doi: 10.1177/0269216317722123.
Matsuoka J, Kunitomi T, Nishizaki M, Iwamoto T, Katayama H. Advance care planning in metastatic breast cancer. Chin Clin Oncol. 2018 Jun;7(3):33.
Messinger-Rapport BJ, Baum EE, Smith ML. Advance care planning: Beyond the living will. Cleve Clin J Med. 2009 May;76(5):276–85.
Myers J, Cosby R, Gzik D, Harle I, Harrold D, Incardona N, Walton T. Provider Tools for Advance Care Planning and Goals of Care Discussions: A Systematic Review. Am J Hosp Palliat Care. 2018 Aug;35(8):1123–1132. doi: 10.1177/1049909118760303.
Vayne-Bossert P, Vailloud C, Ducloux D, Matis C, Déramé L. Planification du projet thérapeutique et directives anticipées dans la prise en soins palliative [Advance directives and advance care planning]. Rev Med Suisse. 2017 Feb 1;13(548):310–314. French.
Lloyd-Williams M, Lloyd-Williams F. Palliative care teaching and today's general practitioners–is it adequate? Eur J Cancer Care (Engl). 1996 Dec;5(4):242–5.
Boudy CA, Bouchez T, Caprini D, Pourrat I, Munck S, Barbaroux A. Home-based palliative care management: what are the useful resources for general practitioners? a qualitative study among GPs in France. BMC Fam Pract. 2020 Oct 31;21(1):222.
Slort W, Blankenstein AH, Deliens L, van der Horst HE. Facilitators and barriers for GP-patient communication in palliative care: a qualitative study among GPs, patients, and end-of-life consultants. Br J Gen Pract. 2011 Apr;61(585):167–72.
Mitchell GK. How well do general practitioners deliver palliative care? A systematic review. Palliat Med. 2002 Nov;16(6):457–64.
Cowppli-Bony A, Colonna M, Ligier K, Jooste V, Defossez G, Monnereau A; le Réseau Francim; Réseau des registres de cancer Francim. Épidémiologie descriptive des cancers en France métropolitaine: incidence, survie et prévalence [Descriptive epidemiology of cancer in metropolitan France: Incidence, survival and prevalence]. Bull Cancer. 2019 Jul-Aug;106(7–8):617–634. French. doi: 10.1016/j.bulcan.2018.11.016.

No competing interests reported.

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Creating an appropriate model of advance care planning for women with breast cancer, Delphi method

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