Skip to main content
Top
Published in: BMC Palliative Care 1/2020

Open Access 01-12-2020 | Care | Research article

Support practices by an interdisciplinary team in a palliative-care unit for relatives of patients in agonal phase

Authors: M. Mélin, H. Amieva, M. Frasca, C. Ouvrard, V. Berger, H. Hoarau, C. Roumiguière, B. Paternostre, N. Stadelmaier, N. Raoux, V. Bergua, B. Burucoa

Published in: BMC Palliative Care | Issue 1/2020

Login to get access

Abstract

Background

In the absence of extant recommendations, the aim of this study was to formalise support practices used by an interdisciplinary team in a palliative-care unit (PCU) for the relatives of patients in the agonal phase preceding death. The secondary objective was to understand the expectations of relatives during this phase in terms of the support provided by professionals and volunteers.

Methods

Thirty-two people took part in this study; all were interviewed through focus groups (FGs). Each FG comprised one category of individuals working in the PCU: nurses, care- assistants, doctors, psychologists, other professionals, palliative-care volunteers, and relatives. Groups were surveyed using an interview guide, and the interviews were recorded and transcribed to enable identification and characterization of all practices. Care practices were classified into four categories: current consensual practices (i.e. performed by all team members), occasional consensual practices, non-consensual practices (performed by one or a few participants), and practices to be developed.

Results

In total, 215 practices were mentioned by professionals and palliative-care volunteers: 150 current consensual practices, 48 occasional consensual practices, 1 non-consensual practice, 16 practices yet to be developed, and 29 practices for relatives. Many practices were mentioned by different categories of participants; thus, after cross-checking, the number of practices decreased from 215 to 52. A list of practices deemed desirable by all was drawn up and then validated by the entire interprofessional team. These practices were organised around four themes: providing care and ensuring comfort; communicating, informing, and explaining; interacting; and mobilising interdisciplinary skills.

Conclusions

These results underline the importance of the quality of care provided to patients, the attention given to the relatives themselves, and they highlight the importance of the helping relationship. Following this study, which established a list of varied practices aimed at supporting the relatives of patients in agonal phase, it will be important to set up a broader study seeking to establish a consensus on these practices with an interprofessional group of experts from other PCUs using broad surveys and an adapted methodology. Such studies will make it possible to develop training modules for teams working with relatives.
Appendix
Available only for authorised users
Literature
1.
go back to reference Hanus M. Les deuils dans la vie, deuils et séparations chez l’adulte et chez l’enfant. Paris: Maloine; 2006. Hanus M. Les deuils dans la vie, deuils et séparations chez l’adulte et chez l’enfant. Paris: Maloine; 2006.
2.
go back to reference Bacqué MF. Le deuil à vivre. Paris: Odile Jacob; 2000. Bacqué MF. Le deuil à vivre. Paris: Odile Jacob; 2000.
3.
go back to reference Aoun SM, Ewing G, Grande G, Toye C, Bear N. The impact of supporting family caregivers before bereavement on outcomes after bereavement: adequacy of end-of-life support and achievement of preferred place of death. J Pain Symptom Manag. 2018;55(2):368–78. Aoun SM, Ewing G, Grande G, Toye C, Bear N. The impact of supporting family caregivers before bereavement on outcomes after bereavement: adequacy of end-of-life support and achievement of preferred place of death. J Pain Symptom Manag. 2018;55(2):368–78.
4.
go back to reference Gagnier J-P, Roy L. La rencontre patient-famille-soignants dans le contexte de la maladie grave. Cah Crit Ther Fam Prat Reseaux. 2016;57(2):49–71. Gagnier J-P, Roy L. La rencontre patient-famille-soignants dans le contexte de la maladie grave. Cah Crit Ther Fam Prat Reseaux. 2016;57(2):49–71.
5.
go back to reference Wentlandt K, Seccareccia D, Kevork N, Workentin K, Blacker S, Grossman D, et al. Quality of care and satisfaction with care on palliative care units. J Pain Symptom Manag. 2016;51(2):184–92. Wentlandt K, Seccareccia D, Kevork N, Workentin K, Blacker S, Grossman D, et al. Quality of care and satisfaction with care on palliative care units. J Pain Symptom Manag. 2016;51(2):184–92.
6.
go back to reference McGuire DB, Grant M, Park J. Palliative care and end of life: the caregiver. Nurs Outlook. 2012;60(6):351–356.e20.PubMed McGuire DB, Grant M, Park J. Palliative care and end of life: the caregiver. Nurs Outlook. 2012;60(6):351–356.e20.PubMed
7.
go back to reference Burucoa B, Milon J, Ferreol M. Etude prospective Sur l’accompagnement des proches en Unité de soins palliatifs (USP). Rev Int Soins Palliatifs. 2014;29(2):33–40. Burucoa B, Milon J, Ferreol M. Etude prospective Sur l’accompagnement des proches en Unité de soins palliatifs (USP). Rev Int Soins Palliatifs. 2014;29(2):33–40.
8.
go back to reference Gülay A, Ebenau AF, Busa C, Csikos A, Hasselaar J, Jaspers B, Menten J, Payne S, Van Beek K, Varey S. Groot M, and Radbruch L. BMC Palliat Care. 2018;17:39. Gülay A, Ebenau AF, Busa C, Csikos A, Hasselaar J, Jaspers B, Menten J, Payne S, Van Beek K, Varey S. Groot M, and Radbruch L. BMC Palliat Care. 2018;17:39.
9.
go back to reference Røen I, Stifoss-Hanssen H, Grande G, Kaasa S, Sand K, Knudsen AK. Supporting carers: health care professionals in need of system improvements and education - a qualitative study. BMC Palliat Care. 2019;18:58.PubMedPubMedCentral Røen I, Stifoss-Hanssen H, Grande G, Kaasa S, Sand K, Knudsen AK. Supporting carers: health care professionals in need of system improvements and education - a qualitative study. BMC Palliat Care. 2019;18:58.PubMedPubMedCentral
10.
go back to reference Diffin J, Ewing G, Harvey G, Grande G. Facilitating successful implementation of a person-centred intervention to support family carers within palliative care: a qualitative study of the Carer Support Needs Assessment Tool (CSNAT) intervention. BMC Palliat Care. 2018;17:129.PubMedPubMedCentral Diffin J, Ewing G, Harvey G, Grande G. Facilitating successful implementation of a person-centred intervention to support family carers within palliative care: a qualitative study of the Carer Support Needs Assessment Tool (CSNAT) intervention. BMC Palliat Care. 2018;17:129.PubMedPubMedCentral
11.
go back to reference Knighting K, O’Brien MR, Roe B, Gandy R, Lloyd-Williams M, Nolan M, Jack BA. Development of the Carers’ Alert Thermometer (CAT) to identify family carers struggling with caring for someone dying at home: a mixed method consensus study. BMC Palliat Care. 2015;14:22.PubMedPubMedCentral Knighting K, O’Brien MR, Roe B, Gandy R, Lloyd-Williams M, Nolan M, Jack BA. Development of the Carers’ Alert Thermometer (CAT) to identify family carers struggling with caring for someone dying at home: a mixed method consensus study. BMC Palliat Care. 2015;14:22.PubMedPubMedCentral
12.
go back to reference Burucoa B, Paternostre B, Frasca M. Les derniers moments de la vie: phases terminale et agonique. In: Perrot S, editor. Douleurs aigues, douleurs chroniques et soins palliatifs. Medline; 2016. p. 89–94. Burucoa B, Paternostre B, Frasca M. Les derniers moments de la vie: phases terminale et agonique. In: Perrot S, editor. Douleurs aigues, douleurs chroniques et soins palliatifs. Medline; 2016. p. 89–94.
13.
go back to reference Blanchet V. Grandes défaillances organiques dans le cadre des soins palliatifs. Rev Prat. 2009;59:780–4.PubMed Blanchet V. Grandes défaillances organiques dans le cadre des soins palliatifs. Rev Prat. 2009;59:780–4.PubMed
14.
go back to reference Bruera S, Chisholm G, Dos Santos R, Crovador C, Bruera E, Hui D. Variations in vital signs in the last days of life in patients with advanced cancer. J Pain Symptom Manag. 2014;48(4):510–7. Bruera S, Chisholm G, Dos Santos R, Crovador C, Bruera E, Hui D. Variations in vital signs in the last days of life in patients with advanced cancer. J Pain Symptom Manag. 2014;48(4):510–7.
15.
go back to reference Hui D. Prognostication of survival in patients with advanced Cancer: predicting the unpredictable? Cancer Control J Moffitt Cancer Cent. 2015;22(4):489–97. Hui D. Prognostication of survival in patients with advanced Cancer: predicting the unpredictable? Cancer Control J Moffitt Cancer Cent. 2015;22(4):489–97.
16.
go back to reference Sivade A, Gabolde M, Frasca M, Burucoa B. Perception par les professionnels de santé d’unités de soins palliatifs de leurs rôles et vécus auprès des patients en phase agonique et leurs proches. Rev Int Soins Palliatifs. 2016;31(2):85–98. Sivade A, Gabolde M, Frasca M, Burucoa B. Perception par les professionnels de santé d’unités de soins palliatifs de leurs rôles et vécus auprès des patients en phase agonique et leurs proches. Rev Int Soins Palliatifs. 2016;31(2):85–98.
17.
go back to reference Ferrell BR, Twaddle ML, Melnick A, Meier DE. National Consensus Project Clinical Practice Guidelines for quality palliative care guidelines, 4th edition. J Palliat Med. 2018;21(12):1684–9.PubMed Ferrell BR, Twaddle ML, Melnick A, Meier DE. National Consensus Project Clinical Practice Guidelines for quality palliative care guidelines, 4th edition. J Palliat Med. 2018;21(12):1684–9.PubMed
18.
go back to reference Lindqvist O, Tishelman C, Hagelin CL, Clark JB, Daud ML, Dickman A, et al. Complexity in non-pharmacological caregiving activities at the end of life: an international qualitative study. PLoS Med. 2012;9(2):e1001173.PubMedPubMedCentral Lindqvist O, Tishelman C, Hagelin CL, Clark JB, Daud ML, Dickman A, et al. Complexity in non-pharmacological caregiving activities at the end of life: an international qualitative study. PLoS Med. 2012;9(2):e1001173.PubMedPubMedCentral
19.
go back to reference Ruegger J, Hodgkinson S, Field-Smith A. Ahmedzai SH, guideline committee. Care of adults in the last days of life: summary of NICE guidance. BMJ. 2015;351:h6631.PubMed Ruegger J, Hodgkinson S, Field-Smith A. Ahmedzai SH, guideline committee. Care of adults in the last days of life: summary of NICE guidance. BMJ. 2015;351:h6631.PubMed
21.
go back to reference Bioy A, Bachelart M. L’alliance thérapeutique: historique, recherches et perspectives cliniques. Perspect Psy. 2010;49(4):317–26. Bioy A, Bachelart M. L’alliance thérapeutique: historique, recherches et perspectives cliniques. Perspect Psy. 2010;49(4):317–26.
22.
go back to reference Trevino KM, Maciejewski PK, Epstein AS, Prigerson HG. The lasting impact of the therapeutic alliance: patient-oncologist alliance as a predictor of caregiver bereavement adjustment. Cancer. 2015;121(19):3534–42.PubMedPubMedCentral Trevino KM, Maciejewski PK, Epstein AS, Prigerson HG. The lasting impact of the therapeutic alliance: patient-oncologist alliance as a predictor of caregiver bereavement adjustment. Cancer. 2015;121(19):3534–42.PubMedPubMedCentral
23.
go back to reference Sturm G, Bonnet S, Gouzvinsk F, Pinquier A, Guerraoui Z, Raynaud J-P. Améliorer l’alliance thérapeutique avec enfants et familles en situation interculturelle. L’Autre. 2016;17(2):223–33. Sturm G, Bonnet S, Gouzvinsk F, Pinquier A, Guerraoui Z, Raynaud J-P. Améliorer l’alliance thérapeutique avec enfants et familles en situation interculturelle. L’Autre. 2016;17(2):223–33.
25.
go back to reference Gagnier J-P, Roy L. Réflexion Sur la collaboration interdisciplinaire. Cah Crit Ther Fam Prat Réseaux. 2013;50(1):85–104. Gagnier J-P, Roy L. Réflexion Sur la collaboration interdisciplinaire. Cah Crit Ther Fam Prat Réseaux. 2013;50(1):85–104.
26.
go back to reference Kaës R. Les théories psychanalytiques du groupe. Que sais-je, 3ème édition. Paris: PUF; 2009. Kaës R. Les théories psychanalytiques du groupe. Que sais-je, 3ème édition. Paris: PUF; 2009.
27.
go back to reference Bonnaud-Antignac A, Ferreol M. Rôle du psychologue face à la violence de la fin de vie en soins palliatifs. Évolution Psychiatr. 2008;73(3):509–16. Bonnaud-Antignac A, Ferreol M. Rôle du psychologue face à la violence de la fin de vie en soins palliatifs. Évolution Psychiatr. 2008;73(3):509–16.
28.
go back to reference Ruszniewski M. Face à la maladie grave. Paris: Dunod; 2004. Ruszniewski M. Face à la maladie grave. Paris: Dunod; 2004.
29.
30.
go back to reference Goldsmith J, Wittenberg-Lyles E, Rodriguez D, Sanchez-Reilly S. Interdisciplinary geriatric and palliative care team narratives: collaboration practices and barriers. Qual Health Res. 2010;20(1):93–104.PubMed Goldsmith J, Wittenberg-Lyles E, Rodriguez D, Sanchez-Reilly S. Interdisciplinary geriatric and palliative care team narratives: collaboration practices and barriers. Qual Health Res. 2010;20(1):93–104.PubMed
31.
go back to reference Gaucher-Hamoudi O, Guiose M. Soins palliatifs et psychomotricité. Paris: Heures de France; 2007. Gaucher-Hamoudi O, Guiose M. Soins palliatifs et psychomotricité. Paris: Heures de France; 2007.
32.
go back to reference Jeannot K. Sur la fonction de « métaphorisation » du psychologue en IME. J Psychol. 2017;352(10):16–9. Jeannot K. Sur la fonction de « métaphorisation » du psychologue en IME. J Psychol. 2017;352(10):16–9.
33.
go back to reference Feret G. Pour un accueil de qualité de la petite enfance: Quel curriculum ? Toulouse: Eres; 2009. Feret G. Pour un accueil de qualité de la petite enfance: Quel curriculum ? Toulouse: Eres; 2009.
34.
go back to reference Kentish BN. Communication et accompagnement en situation de fin de vie: le point de vue des familles. In: Chahraoui K, Laurent A, Bioy A, Capellier G, Quenot JP, editors. Vulnérabilité psychique et clinique de l’extrême en réanimation. Paris: Dunod; 2015. Kentish BN. Communication et accompagnement en situation de fin de vie: le point de vue des familles. In: Chahraoui K, Laurent A, Bioy A, Capellier G, Quenot JP, editors. Vulnérabilité psychique et clinique de l’extrême en réanimation. Paris: Dunod; 2015.
35.
go back to reference Marcos I, Burucoa B. Une approche spécifique de la psychomotricité en situation palliative. Rev Int Soins Palliatifs. 2012;27(2):73–6. Marcos I, Burucoa B. Une approche spécifique de la psychomotricité en situation palliative. Rev Int Soins Palliatifs. 2012;27(2):73–6.
36.
go back to reference Nore F, Gironde M, Bézy O, Jalenques I, Fédor M-C, Leyssène-Ouvrard C, et al. L’intégration des familles aux soins en cancérologie: perspectives et limites. Psychooncology. 2007;1(3):186–94. Nore F, Gironde M, Bézy O, Jalenques I, Fédor M-C, Leyssène-Ouvrard C, et al. L’intégration des familles aux soins en cancérologie: perspectives et limites. Psychooncology. 2007;1(3):186–94.
37.
go back to reference Saltel P, Gauvain-Piquard A, Landry-Dattee N. L’information de la famille d’un patient adulte atteint de cancer. Bull Cancer. 2001;88(4):399–415.PubMed Saltel P, Gauvain-Piquard A, Landry-Dattee N. L’information de la famille d’un patient adulte atteint de cancer. Bull Cancer. 2001;88(4):399–415.PubMed
38.
go back to reference Mérel JP, Pujol JL. Le proche significatif ou étude des représentations des proches de patients malades du cancer et de leur interaction avec Une équipe soignante dans un service d’oncologie thoracique adulte. L’évolution Psychiatr. 2012;77:451–68. Mérel JP, Pujol JL. Le proche significatif ou étude des représentations des proches de patients malades du cancer et de leur interaction avec Une équipe soignante dans un service d’oncologie thoracique adulte. L’évolution Psychiatr. 2012;77:451–68.
39.
go back to reference Tarberg AS, Kvangarsnes M, Hole T, Thronæs M, Madssen TS, Landstad BJ. Silent voices: family caregivers’ narratives of involvement in palliative care. Nurs Open. 2019;6(4):1446–54.PubMedPubMedCentral Tarberg AS, Kvangarsnes M, Hole T, Thronæs M, Madssen TS, Landstad BJ. Silent voices: family caregivers’ narratives of involvement in palliative care. Nurs Open. 2019;6(4):1446–54.PubMedPubMedCentral
40.
go back to reference Rogers C. La relation d’aide et la psychothérapie. Tome 1. Paris: ESF; 1971. Rogers C. La relation d’aide et la psychothérapie. Tome 1. Paris: ESF; 1971.
41.
go back to reference Harrop E, Morgan F, Byrne A, Nelson AM. “It still haunts me whether we did the right thing”: a qualitative analysis of free text survey data on the bereavement experiences and support needs of family caregivers. BMC Palliat Care. 2016;15:92.PubMedPubMedCentral Harrop E, Morgan F, Byrne A, Nelson AM. “It still haunts me whether we did the right thing”: a qualitative analysis of free text survey data on the bereavement experiences and support needs of family caregivers. BMC Palliat Care. 2016;15:92.PubMedPubMedCentral
42.
go back to reference Bouisson J, Amieva H. L’aide aux aidants. Paris: In Press; 2015. Bouisson J, Amieva H. L’aide aux aidants. Paris: In Press; 2015.
43.
go back to reference Bion WR. Aux sources de l’expérience. Paris: PUF; 1979. Bion WR. Aux sources de l’expérience. Paris: PUF; 1979.
44.
go back to reference Guldin MB, Vedsted P, Zachariae R, Olesen F, Jensen AB. Complicated grief and need for professional support in family caregivers of cancer patients in palliative care: a longitudinal cohort study. Support Care Cancer. 2012;20:1679–85.PubMed Guldin MB, Vedsted P, Zachariae R, Olesen F, Jensen AB. Complicated grief and need for professional support in family caregivers of cancer patients in palliative care: a longitudinal cohort study. Support Care Cancer. 2012;20:1679–85.PubMed
45.
go back to reference Hebert RS, Schulz R, Copeland VC, Arnold RM. Preparing family caregivers for death and bereavement. Insights from caregivers of terminally ill patients. J Pain Symptom Manag. 2009;37(1):3–12. Hebert RS, Schulz R, Copeland VC, Arnold RM. Preparing family caregivers for death and bereavement. Insights from caregivers of terminally ill patients. J Pain Symptom Manag. 2009;37(1):3–12.
46.
go back to reference Balaguer A, Monforte-Royo C, Porta-Sales J, Alonso-Babarro A, Altisent R, Aradilla-Herrero A, et al. An international consensus definition of the wish to hasten death and its related factors. PLoS One. 2016;11(1):e0146184.PubMedPubMedCentral Balaguer A, Monforte-Royo C, Porta-Sales J, Alonso-Babarro A, Altisent R, Aradilla-Herrero A, et al. An international consensus definition of the wish to hasten death and its related factors. PLoS One. 2016;11(1):e0146184.PubMedPubMedCentral
47.
go back to reference Emanuel EJ, Fairclough DL, Emanuel LL. Attitudes and desires related to euthanasia and physician-assisted suicide among terminally ill patients and their caregivers. JAMA. 2000;284(19):2460–8.PubMed Emanuel EJ, Fairclough DL, Emanuel LL. Attitudes and desires related to euthanasia and physician-assisted suicide among terminally ill patients and their caregivers. JAMA. 2000;284(19):2460–8.PubMed
48.
go back to reference Stutzki R, Weber M, Reiter-Theil S, Simmen U, Borasio GD, Jox RJ. Attitudes towards hastened death in ALS: a prospective study of patients and family caregivers. Amyotroph Lateral Scler Front Degener. 2014;15(1–2):68–76. Stutzki R, Weber M, Reiter-Theil S, Simmen U, Borasio GD, Jox RJ. Attitudes towards hastened death in ALS: a prospective study of patients and family caregivers. Amyotroph Lateral Scler Front Degener. 2014;15(1–2):68–76.
49.
go back to reference Ohnsorge K, Gudat H, Rehmann-Sutter C. 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. 2014;13:38.PubMedPubMedCentral Ohnsorge K, Gudat H, Rehmann-Sutter C. 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. 2014;13:38.PubMedPubMedCentral
50.
go back to reference Bousquet A, Guirimand F, Aubry R, Leboul D. Soignants d’unité de soins palliatifs confrontés à Une demande d’euthanasie: étude qualitative pilote. Méd Palliat. 2015;15(1):4–14. Bousquet A, Guirimand F, Aubry R, Leboul D. Soignants d’unité de soins palliatifs confrontés à Une demande d’euthanasie: étude qualitative pilote. Méd Palliat. 2015;15(1):4–14.
Metadata
Title
Support practices by an interdisciplinary team in a palliative-care unit for relatives of patients in agonal phase
Authors
M. Mélin
H. Amieva
M. Frasca
C. Ouvrard
V. Berger
H. Hoarau
C. Roumiguière
B. Paternostre
N. Stadelmaier
N. Raoux
V. Bergua
B. Burucoa
Publication date
01-12-2020
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2020
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-020-00680-4

Other articles of this Issue 1/2020

BMC Palliative Care 1/2020 Go to the issue