Cécile Barbaret1,2, Elise Perceau-Chambard3, Flora Tremellat-Faliere4, Pascale Vassal5, Louise Hannetel6, Raphael Alluin7, Stéphane Sanchez8
For sick individuals, their family, friends and loved-ones provide essential support. The role of family and friends often goes unrecognised within healthcare, with its constant technological, therapeutic and organisational challenges.
Yet, they have a key role to play in palliative care. They can often provide useful information to help us better understand the lifestyle and living conditions, and also clues to the social dynamics around the patient (1).
In palliative medicine we have long realised that the family, partners and friends also need care (2,3). Family-centred care is not specific to palliative care, but is a component of the definition of the field. In palliative care units, conferences with proxy are frequent (4), and are an important source of information between those close to the patient and caregivers. They provide explanations to the family, but also listen to and help the family members of a dying person. Family meetings alleviate anxiety, reduce depressive symptoms (short term) and in the longer term, help avoid complicated grief and depression among family (5).
The ongoing COVID-19 pandemic has disrupted care delivery, particularly at the end-of-life. Hospital visits were banned. Social distancing and limitations on visits to medico-social and healthcare organisations have had a marked impact on patients, particularly in palliative care. In this context, it was necessary to find alternatives to accompany and support dying patients and their families.
The palliative care units from six hospitals in France have innovative practices to support dying patient and their families, while minimizing the risk of infection (university hospitals of Grenoble, Lyon-South, Saint Etienne, Nice and Nancy, and the general (non-academic) hospital of Troyes).
We describe here the similarities and differences in family conferences and in the policies in these units during the COVID-19 pandemic with regard to non-COVID visitors. The visiting policies were developed independently in each hospital, before our enquiry.
Criteria for visits
Decisions to allow visits were made on a case by case basis for the palliative care units of Grenoble, Lyon-Sud, and Nice. For them, the criteria were end-of life situations, or mental and/or physical deterioration. Conversely, those of Troyes, St Etienne and Nancy allowed visits systematically. Four units (Grenoble, Lyon-Sud, Nice, Nancy) organised a multidisciplinary decision making procedure and two (Grenoble, Lyon-Sud) reviewed decisions daily. The unit in St Etienne decided on visiting rights before hospitalization.
Who may visit the patients?
All hospitals restricted the number of visitors. With the exception of Grenoble, where the number allowed was on a case by case basis, other hospitals only allowed one to 2 visitors. In end-of life situations, more visitors were allowed in Troyes, Nice and Lyon-Sud.
When can they visit?
Except the Lyon Sud palliative care unit, where visits could take place any time of the day, visiting hours were in the afternoon in other hospitals, mostly for one person at a time. Two units (Grenoble, Lyon-Sud) limited the visit to 1 hour. Four units (Grenoble, Troyes, St Etienne and Nice) organized specific times to keep families separated. Two (Troyes, Lyon Sud) allowed families to sleep on site for end-of-life situations.
Masks were obligatory, and provided systematically by Troyes and Nancy hospitals. Safety measures were explained to visitors in every unit. Only Grenoble systematically checked visitors temperatures. .
Support for families?
|Family conference||When is it held ?||Phone calls to the family||Phone call to family by a psychologist||Assistance with maintaining social links|
|Grenoble||Yes||Deterioration||As soon as possible.Daily.||Systematic||2 pads donated by the hospital|
|Troyes||Yes||No conditions||In case of deterioration||Not systematic||Equipment provided by the family|
|Lyon South||Yes||Deterioration||Systematically, by the physician||Not systematic||2 pads provided by the hospital|
|St Etienne||Yes||Deterioration||Systematically, daily||Systematic||2 pads donated by the hospital|
|Nice||Yes||Deterioration||Systematically, daily||Systematic||Pads provided by the faculty of medicine|
|Nancy||Yes||By video-conference systematically||In case of deterioration||Systematic||Pads and smartphone donated by local businesses or charities|
In case of death, who may enter the palliative care unit?
In all units, the family were authorised to enter in case of death of a loved one. Three limited thi to two people (Lyon Sud, Nice, Nancy), while the other units decided on a case by case basis (Grenoble, Troyes, St Etienne).
In summary, family visits were unanimously accepted at the end-of-life, or with patient deterioration. The only differences concerned the exact details of how and when families can visit, since even the decision-making process for family visits were similar, with active participation of all medical professionals. The number of visits was limited, but family support still provided if the patient deteriorated, whether death was imminent or not. Necessity being the mother of invention, innovative solutions have been found in all these units to maintain social links, like mobile devices. Families were regularly contacted by the psychologist or staff , even when the patient’s situation was stable. It remains to be seen whether these innovative solutions have helped families, provided support and reduced the anxiety from both the illness of their loved one and the unusual conditions of social interaction due to the unique pandemic context.
- Mehta A, Cohen SR, Chan LS. Palliative care: A need for a family systems approach. Palliat Support Care. 2009 Jun;7(02):235.
- Grunfeld E, Coyle D, Whelan T, Glossop R. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ. 2004;170(12):1795–801.
- Kim Y, Given B. Quality of life of family carers survivors:across the trajectory of the illness. 2008;(112):2556–68.
- Rhondali W, Dev R, Barbaret C, Chirac A, Font-Truchet C, Vallet F, et al. Family conferences in palliative care: a survey of health care providers in France. J Pain Symptom Manage. 2014 Dec;48(6):1117–24.
- Hannon B, O’Reilly V, Bennett K, Breen K, Lawlor PG. Meeting the family: Measuring effectiveness of family meetings in a specialist inpatient palliative care unit. Palliat Support Care. 2012 Mar;10(01):43–9.
1Department of Supportive and Palliative Care, Centre Hospitalo-Universitaire de Grenoble, Grenoble, France
2 Laboratoire ThEMAS (TIMC-IMAG)
3Department of Supportive and Palliative Care, Centre Hospitalo-Universitaire de Lyon Sud, Pierre Bénite, France
4Department of Supportive and Palliative Care, Centre Hospitalo-Universitaire de Nice, Nice, France
5Department of Supportive and Palliative Care, Centre Hospitalo-Universitaire de St Etienne, St Etienne, France
6Department of Supportive and Palliative Care, Centre Hospitalier de Troyes, Troyes, France
7Department of Supportive and Palliative Care, Centre Hospitalo-Universitaire de Nancy, Nancy, France
8Department of Medical Information, Evaluation and Performance, Hôpitaux Champagne Sud, Troyes, France
Cécile, Barbaret, M.D, PhD.
Centre Hospitalo-Universitaire de Grenoble, 38700 La TRONCHE
Email : email@example.com