Hostname: page-component-cd9895bd7-mkpzs Total loading time: 0 Render date: 2024-12-27T21:17:12.611Z Has data issue: false hasContentIssue false
  • English
  • Français

Refractory psycho-existential distress and continuous deep sedation until death in palliative care: The French perspective

Published online by Cambridge University Press:  25 September 2019

Michel Reich Open the ORCID record for Michel Reich [Opens in a new window] ,
Xavier Bondenet ,
Laurence Rambaud ,
Fazya Ait-Kaci ,
Anne-Laure Sedda ,
Arlette Da Silva ,
Stéphanie Villet  and
Vincent Gamblin
Michel Reich*
Affiliation:
Centre Oscar Lambret, Psycho-Oncology Unit, 59020Lille, France
Xavier Bondenet
Affiliation:
Centre Oscar Lambret, Psycho-Oncology Unit, 59020Lille, France
Laurence Rambaud
Affiliation:
Centre Oscar Lambret, Psycho-Oncology Unit, 59020Lille, France
Fazya Ait-Kaci
Affiliation:
Centre Oscar Lambret, Psycho-Oncology Unit, 59020Lille, France
Anne-Laure Sedda
Affiliation:
Centre Oscar Lambret, Psycho-Oncology Unit, 59020Lille, France
Arlette Da Silva
Affiliation:
Centre Oscar Lambret, Palliative Care Unit, 59020Lille, France
Stéphanie Villet
Affiliation:
Centre Oscar Lambret, Palliative Care Unit, 59020Lille, France
Vincent Gamblin
Affiliation:
Centre Oscar Lambret, Palliative Care Unit, 59020Lille, France
*
Author for correspondence: Michel Reich, Centre Oscar Lambret, Psycho-Oncology Unit, 3 rue Frédéric Combemale, 59020Lille, France. Email: m-reich@o-lambret.fr
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective

Since February 2016, French Claeys-Leonetti law has recognized patients' right to confront incurable diseases with short-term prognosis and refractory physical or psychological or existential symptoms by requesting continuous deep sedation until death (CDSUD). Determining when psychological or existential distress is refractory and unbearable remains complex and controversial.

This review provides a comprehensive thought on CDSUD for advanced incurable patients with refractory psychological and/or existential distress in palliative care settings. It offers guidance on psychiatric or psychological diagnosis for explaining patients' requests for CDSUD.

Method

A narrative literature review (2000–2019) was conducted on the MedLine search about the use of palliative sedation in cases of refractory psychological and/or existential distress.

Results

(1) Definitions of “refractory symptom,” “refractory psychological distress,” and “refractory existential distress” are inconsistent; (2) alternative diagnoses might obscure or be obscured by psycho-existential distress; and (3) criteria on meanings, reasons for requests, decision-making processes, and functions are evolving in practice.

Significance of results

Before implementing CDSUD, palliative healthcare professionals should seek input from psycho-oncologists in palliative care. Mental health professionals should analyze and assess the reasons for psychological and/or existential distress, consider the intentionality processes of requests, and explore alternative diagnoses, such as depressive or adjustment disorders, demoralization syndrome, desire to hasten death, and desire for euthanasia. Therapeutic responses (e.g., pharmacological and psychotherapeutic) should be implemented before deciding that psycho-existential distress is refractory.

Keywords

Continuous deep sedation until deathPsychological distressExistential distressEnd-of-life carePalliative careClaeys-Leonetti law
Type
Review Article
Information
Palliative & Supportive Care , Volume 18 , Special Issue 4: Palliative and Supportive Care During The COVID-19 Pandemic , August 2020 , pp. 486 - 494
Check for updates
Copyright
Copyright © Cambridge University Press 2019

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Abarshi, E, Rietjens, J, Robijn, L, et al. (2017) International variations in clinical practice guidelines for palliative sedation: A systematic review. BMJ Supportive Palliative Care 7, 223–229.Google ScholarPubMed
Anquinet, L, Rietjens, JA, Seale, C, et al. (2012) The practice of continuous deep sedation until death in Flanders (Belgium), the Netherlands, and the U.K.: A comparative study. J Pain Symptom Manage 44, 33–43.10.1016/j.jpainsymman.2011.07.007CrossRefGoogle ScholarPubMed
Anquinet, L, Rietjens, J, van der Heide, A, et al. (2014) Physicians’ experiences and perspectives regarding the use of continuous sedation until death for cancer patients in the context of psychological and existential suffering at the end of life. Psychooncology 23, 539–546.10.1002/pon.3450CrossRefGoogle ScholarPubMed
Arnold, EM, Artin, KA, Person, JL, et al. (2004) Consideration of hastening death among hospice patients and their families. J Pain Symptom Manage 27, 523–532.CrossRefGoogle ScholarPubMed
Aubry, R (2017) Principles and challenges of law n° 2016-87 of 2 February 2016 creating new rights for the sick and the end-of-life. Rev Prat 67, 1131–1133.Google Scholar
Balaguer, A, Monforte-Royo, C, Porta-Sales, J, et al. (2016) An international consensus definition of the wish to hasten death and its related factors. PloS One 11, e0146184.CrossRefGoogle ScholarPubMed
Beauverd, M, Bernard, M, Currat, T, et al. (2014) French Swiss physicians’ attitude toward palliative sedation: Influence of prognosis and type of suffering. Palliat Support Care 12, 345–350.CrossRefGoogle ScholarPubMed
Block, SD and Billings, JA (1994) Patient requests to hasten death. Evaluation and management in terminal care. Arch Intern Med 154, 2039–2047.CrossRefGoogle ScholarPubMed
Boulanger, A, Chabal, T, Fichaux, M, et al. (2017) Opinions about the new law on end-of-life issues in a sample of French patients receiving palliative care. BMC Palliat Care 16, 7.10.1186/s12904-016-0174-8CrossRefGoogle Scholar
Breitbart, W, Rosenfeld, B, Pessin, H, et al. (2000) Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer. JAMA 284, 2907–2911.10.1001/jama.284.22.2907CrossRefGoogle ScholarPubMed
Bruce, A and Boston, P (2011) Relieving existential suffering through palliative sedation: Discussion of an uneasy practice. J Adv Nurs 67, 2732–2740.CrossRefGoogle ScholarPubMed
Chater, S, Viola, R, Paterson, J, et al. (1998) Sedation for intractable distress in the dying – a survey of experts. Palliat Med 12, 255–269.CrossRefGoogle ScholarPubMed
Cherny, NI and ESMO Guidelines Working Group (2014) ESMO clinical practice guidelines for the management of refractory symptoms at the end of life and the use of palliative sedation. Ann Oncol 25, iii143–152.CrossRefGoogle ScholarPubMed
Cherny, NI and Portenoy, RK (1994) Sedation in the management of refractory symptoms: Guidelines for evaluation and treatment. J Palliat Care 10, 31–38.CrossRefGoogle ScholarPubMed
Chochinov, HM, Wilson, KG, Enns, M, et al. (1995) Desire for death in the terminally ill. Am J Psychiatry 152, 1185–1191.Google ScholarPubMed
Ciancio, AL, Miraz, RM, Ciancio, AA, et al. (2019) The use of palliative sedation to treat existential suffering: A scoping review on practices, ethical considerations, and guidelines. J Palliat Care. https://doi.org/10.1177/0825859719827585.Google ScholarPubMed
Claessens, P, Menten, J, Schotsmans, P, et al. (2008) Palliative sedation: A review of the research literature. J Pain Symptom Manage 36, 310–333.CrossRefGoogle ScholarPubMed
Collège des médecins du Québec. La sédation palliative en fin de vie. (2016). Available at: http://www.cmq.org/nouvelle/fr/sedation-palliative-en-fin-de-vie.aspx (accessed March 28, 2019).Google Scholar
Dean, MM, Cellarius, V, Henry, B, et al. (2012) Framework for continuous palliative sedation therapy in Canada. J Palliat Med 15, 870–879.CrossRefGoogle ScholarPubMed
De Graeff, A and Dean, M (2007) Palliative sedation therapy in the last weeks of life: A literature review and recommendations for standards. J Palliat Med 10, 67–85.CrossRefGoogle ScholarPubMed
De Nonneville, A, Marin, A, Chabal, T, et al. (2016) End-of-life practices in France under the Claeys-Leonetti law: Report of three cases in the oncology unit. Case Rep Oncol 9, 650–654.10.1159/000450940CrossRefGoogle ScholarPubMed
Ferrand, E, Dreyfus, JF, Chastrusse, M, et al. (2012) Evolution of requests to hasten death among patients managed by palliative care teams in France: A multicentre cross-sectional survey (DemandE). Eur J Cancer 48, 368–376.10.1016/j.ejca.2011.09.020CrossRefGoogle Scholar
Galushko, M, Frerich, G, Perrar, KM, et al. (2016) Desire for hastened death: How do professionals in specialized palliative care react? Psychooncology 25, 536–543.10.1002/pon.3959CrossRefGoogle ScholarPubMed
Goelitz, A (2003) Suicidal ideation at end-of-life: The palliative care team's role. Palliat Support Care 1, 275–278.CrossRefGoogle ScholarPubMed
Grassi, L and de Figueiredo, JM (2018) Advances in the understanding of demoralization in oncology and palliative care. Psychooncology 12, 99–108.Google Scholar
Gurschick, L, Mayer, DK and Hanson, LC (2015) Palliative sedation: An analysis of international guidelines and position statements. Am J Hosp Palliat Care 32, 660–671.CrossRefGoogle ScholarPubMed
Hallenbeck, JL (2000) Terminal sedation: Ethical implications in different situations. J Palliat Med 3, 313–320.CrossRefGoogle ScholarPubMed
Haute Autorité de Santé (2018) How to implement continuous deep sedation until death? Saint-Denis. HAS Available at: http://www.has-sante.fr/jcms/c28320000/en (accessed March 22, 2019).Google Scholar
Henoch, I and Danielson, E (2009) Existential concerns among patients with cancer and interventions to meet them: An integrative literature review. Psychooncology 18, 225–236.10.1002/pon.1424CrossRefGoogle Scholar
Horn, R (2018) The ‘French exception’: The right to continuous deep sedation at the end of life. J Med Ethics 44, 204–205.10.1136/medethics-2017-104484CrossRefGoogle ScholarPubMed
Hudson, PL, Kristjanson, LJ, Ashby, M, et al. (2006) Desire for hastened death in patients with advanced disease and the evidence base of clinical guidelines: A systematic review. Palliat Med 20, 693–701.10.1177/0269216306071799CrossRefGoogle ScholarPubMed
Johnson, RJ 3rd (2018) A research study review of effectiveness of treatments for psychiatric conditions common to end-stage cancer patients: Needs assessment for future research and an impassioned plea. BMC Psychiatry 18, 85.10.1186/s12888-018-1651-9CrossRefGoogle Scholar
Julião, M, Nunes, B and Barbosa, A (2016) Prevalence and factors associated with demoralization syndrome in patients with advanced disease: Results from a cross-sectional Portuguese study. Palliat Support Care 14, 468–473.10.1017/S1478951515001364CrossRefGoogle ScholarPubMed
Juth, N, Lindblad, A, Lynöe, N, et al. (2010) European Association for Palliative Care (EAPC) framework for palliative sedation: An ethical discussion. BMC Palliat Care 9, 20.CrossRefGoogle Scholar
Kelly, B, Burnett, P, Pelusi, D, et al. (2002) Terminally ill cancer patients’ wish to hasten death. Palliat Med 16, 339–345.10.1191/0269216302pm538oaCrossRefGoogle ScholarPubMed
Kissane, DW, Clarke, DM and Street, AF (2001) Demoralization syndrome – a relevant psychiatric diagnosis for palliative care. J Palliat Care 17, 12–21.10.1177/082585970101700103CrossRefGoogle ScholarPubMed
Kissane, DW, Bobevski, I, Gaitanis, P, et al. (2017) Exploratory examination of the utility of demoralization as a diagnostic specifier for adjustment disorder and major depression. Gen Hosp Psychiatry 46, 20–24.10.1016/j.genhosppsych.2017.01.007CrossRefGoogle ScholarPubMed
Loi n°2016-87 du 2 février 2016 créant de nouveaux droits en faveur des malades et des personnes en fin de vie: 2016. Available at: https://www.legifrancegouvfr/eli/loi/2016/2/2/AFSX15076421/jo/texte (accessed March 28, 2019).CrossRefGoogle Scholar
Maltoni, M, Scarpi, E, Rosati, M, et al. (2012) Palliative sedation in end-of-life care and survival: A systematic review. J Clin Oncol 30, 1378–1383.10.1200/JCO.2011.37.3795CrossRefGoogle ScholarPubMed
Maltoni, M, Scarpi, E and Nanni, O (2014) Palliative sedation for intolerable suffering. Cur Opin Oncol 26, 389–394.10.1097/CCO.0000000000000097CrossRefGoogle ScholarPubMed
McCammon, SD and Piemonte, NM (2015) Continuous sedation until death should not be an option of first resort. J Clin Ethics 26, 132–142.Google Scholar
Mercadante, S, Intravaia, G, Villari, P, et al. (2009) Controlled sedation for refractory symptoms in dying patients. J Pain Symptom Manage 37, 771–779.10.1016/j.jpainsymman.2008.04.020CrossRefGoogle ScholarPubMed
Miccinesi, G, Rietjens, JA, Deliens, L, et al. (2006) Continuous deep sedation: Physicians’ experiences in six European countries. J Pain Symptom Manage 31, 122–129.10.1016/j.jpainsymman.2005.07.004CrossRefGoogle ScholarPubMed
Mogos, M, Roffey, P and Thangathurai, D (2013) Demoralization syndrome: A condition often undiagnosed in terminally ill patients. J Palliat Care 16, 601.Google ScholarPubMed
Monforte-Royo, C, Villavicencio-Chavez, C, Tomas-Sabado, J, et al. (2012) What lies behind the wish to hasten death? A systematic review and meta-ethnography from the perspective of patients. PLoS One 7, e37117.CrossRefGoogle Scholar
Morita, T (2004) Palliative sedation to relieve psycho-existential suffering of terminally ill cancer patients. J Pain Symptom Manage 28, 445–450.CrossRefGoogle ScholarPubMed
Morita, T, Tsuneto, S and Shima, Y (2002) Definition of sedation for symptom relief: A systematic literature review and a proposal of operational criteria. J Palliat Med 24, 447–453.Google Scholar
Morita, T, Sakaguchi, Y, Hirai, K, et al. (2004) Desire for death and requests to hasten death of Japanese terminally ill cancer patients receiving specialized inpatient palliative care. J Pain Symptom Manage 27, 44–52.10.1016/j.jpainsymman.2003.05.001CrossRefGoogle ScholarPubMed
Nanni, MG, Caruso, R, Travado, L, et al. (2018) Relationship of demoralization with anxiety, depression, and quality of life: A Southern European study of Italian and Portuguese cancer patients. Psychooncology 27, 2616–2622.10.1002/pon.4824CrossRefGoogle ScholarPubMed
Ohnsorge, K, Gudat, H and Rehmann-Sutter, C (2014a) Intentions in wishes to die: Analysis and a typology – a report of 30 qualitative case studies of terminally ill cancer patients in palliative care. Psychooncology 23, 1021–1026.CrossRefGoogle Scholar
Ohnsorge, K, Gudat, H and Rehmann-Sutter, C (2014b) What a wish to die can mean: Reasons, meanings and functions of wishes to die, reported from 30 qualitative case studies of terminally ill cancer patients in palliative care. BMC Palliat Care 13, 38.10.1186/1472-684X-13-38CrossRefGoogle Scholar
Papavasiliou, E, Payne, S, Brearley, S, et al. (2013) Continuous sedation (CS) until death: Mapping the literature by bibliometric analysis. J Pain Symptom Manage 45, 1073–1082. e10.CrossRefGoogle ScholarPubMed
Parker, M (2004) Medicalizing meaning: Demoralization syndrome and the desire to die. Aust NZJ Psychiatry 38, 765–773.10.1080/j.1440-1614.2004.01460.xCrossRefGoogle ScholarPubMed
Parpa, E, Tsilika, E, Galanos, A, et al. (2019) Depression as mediator and or moderator on the relationship between hopelessness and patients’ desire for hastened death. Support Care Cancer, Mar 21, doi: 10.1007/s00520-019-04715-2.CrossRefGoogle ScholarPubMed
Pessin, H, Rosenfeld, B, Burton, L, et al. (2003) The role of cognitive impairment in desire for hastened death: A study of patients with advanced AIDS. Gen Hosp Psychiatry 25, 194–199.CrossRefGoogle ScholarPubMed
Pessin, H, Fenn, N, Hendriksen, E, et al. (2015) Existential distress among healthcare providers caring for patients at the end of life. Curr Opin Support Palliat Care 29, 77–86.CrossRefGoogle Scholar
Pestinger, M, Stiel, S, Elsner, F, et al. (2015) The desire to hasten death: Using grounded theory for a better understanding “When perception of time tends to be a slippery slope”. Palliat Med 29, 711–719.CrossRefGoogle Scholar
Plançon, M and Louarn, C (2018) Continuous deep sedation until death: Practice of a mobile palliative care team. Med Pal 17, 50–55.Google Scholar
Robijn, L, Cohen, J, Rietjens, J, et al. (2016) Trends in continuous deep sedation until death between 2007 and 2013: A repeated nationwide survey. PLoS One 11, e0158188.CrossRefGoogle ScholarPubMed
Robinson, S, Kissane, DW, Brooker, J, et al. (2015) A systematic review of the demoralization syndrome in individuals with progressive disease and cancer: A decade of research. J Pain Symptom Manage 49, 595–610.10.1016/j.jpainsymman.2014.07.008CrossRefGoogle ScholarPubMed
Robinson, S, Kissane, DW, Brooker, J, et al. (2017) The relationship between poor quality of life and desire to hasten death: A multiple mediation model examining the contributions of depression, demoralization, loss of control, and low self-worth. J Pain Symptom Manage 53, 243–249.CrossRefGoogle ScholarPubMed
Sadler, K (2012) Palliative sedation to alleviate existential suffering at end-of-life: Insight into a controversial practice. Can Oncol Nurs J 22, 195–199.CrossRefGoogle ScholarPubMed
Seale, C (2010) Continuous deep sedation in medical practice: A descriptive study. J Pain Symptom Manage 39, 43–53.CrossRefGoogle ScholarPubMed
Serey, A, Tricou, C, Phan-Hoang, N, et al. (2019) Deep continuous patient-requested sedation until death: A multicentric study. BMJ Support Palliat Care. doi:10.1136/bmjspcare-2018-001712.CrossRefGoogle ScholarPubMed
Seymour, J, Rietjens, J, Bruinsma, S, et al. (2015) Using continuous sedation until death for cancer patients: A qualitative interview study of physicians’ and nurses’ practice in three European countries. Palliat Med 29, 48–59.CrossRefGoogle ScholarPubMed
Société française d'accompagnement et de soins palliatifs (SFAP). Recommandations de bonnes pratiques. Sédation pour détresse en phase terminale et dans des situations spécifiques et complexes : recommandations dans les situations spécifiques et complexes. Groupe de travail SFAP, mai 2014. Available at: http://www.sfap.org/system/files/guide-2014-sfap-cs.pdf (accessed April 16, 2019).Google Scholar
Tang, PL, Wang, HH and Chou, FH (2015) A systematic review and meta-analysis of demoralization and depression in patients with cancer. Psychosomatics 56, 634–643.CrossRefGoogle ScholarPubMed
Twycross, R (2019) Reflections on palliative sedation. Palliat Care 12. https://doi.org/10.1177/1178224218823511.Google ScholarPubMed
Vehling, S and Mehnert, A (2014) Symptom burden, loss of dignity, and demoralization in patients with cancer: A mediation model. Psychooncology 23, 283–290.CrossRefGoogle ScholarPubMed
Vehling, S, Kissane, DW, Lo, C, et al. (2017) The association of demoralization with mental disorders and suicidal ideation in patients with cancer. Cancer 123, 3394–3401.10.1002/cncr.30749CrossRefGoogle ScholarPubMed
Vitale, C, de Nonneville, A, Fichaux, M, et al. (2019) Medical staff opposition to a deep and continuous palliative sedation request under Claeys-Leonetti law. BMC Palliat Care 18, 2.CrossRefGoogle ScholarPubMed
Voeuk, A, Nekolaichuk, C, Fainsinger, R, et al. (2017) Continuous palliative sedation for existential distress? A survey of Canadian palliative care physicians’ views. J Palliat Care 32, 26–33.CrossRefGoogle ScholarPubMed
Wilson, KG, Dalgleish, TL, Chochinov, HM, et al. (2016) Mental disorders and the desire for death in patients receiving palliative care for cancer. BMJ Support Palliat Care 6, 170–177.10.1136/bmjspcare-2013-000604CrossRefGoogle ScholarPubMed
Zittoun, R (2016) Continuous sedation until death. A French way for the end-of-life care? Presse Med 45, 670–675.10.1016/j.lpm.2016.04.018CrossRefGoogle Scholar