On 12th June 2018, the French “General Inspectorate of Social Affairs” (IGAS) published its evaluation of the 2016 end-of-life law. The report gives 30 recommendations for a more homogeneous application of this law and for an improved consideration of the most vulnerable.
This report has been anxiously awaited ever since November 2017. At that time the French Health Minister initiated the request in order “to evaluate the law’s application, especially for training health professionals, implementing advance directives as well as naming the trusted individual for these directives, providing access to palliative care throughout the country, and establishing deep sedation in various health facilities, in nursing homes (EHPAD’s) or at home (“HAD”).
The report calls for “minor corrections in the existing law and regulations“, reminding that “keeping the regulations unchanged is essential to allow professionals, individuals facing the end of life, as well as their families and relatives, to have a good command of these regulations”. According to the rapporteurs, “The February 2, 2016 law, which was quickly adopted, gave an encouraging impetus for managing the end-of-life and developing palliative care”. With only 2 short years of field experience to evaluate how the law is being applied, this comprehensive report nonetheless shows the desire for improving the management of end-of-life situations, without denying the complexity of some situations.
The rapporteurs emphasize an urgent need for a more reliable system to input the data on end-of-life medical decisions. In particular, they mention the need for a specific tracking, at national level, for decisions to restrict or discontinue a treatment, as well as for deep and continuous sedation until death “. In view of the lack of research concerning the end-of-life research, the report recommends that the topic of “Palliative and End-of-Life Care” be promoted in calls for national projects and in the programs run by major research organizations.
In view of these deficiencies, and of a problem of governance at the National Center for Palliative and End-of-Life Care, the report also recommends that this Center, created by the 2016 law, be audited “for better knowledge of palliative care, but also for monitoring and evaluating the public policies regarding the end-of-life “.
In recent years, advances have been made in palliative care training, but these efforts need to be improved to develop palliative care and to reduce regional inequalities. In the following analyses and studies carried out in the past few months, the report underlines the importance of developing palliative care in nursing homes (“EPHAD’s”).
Advance directives and person of trust
It appears that people are more at ease in designating a person of confidence, than writing their advance directives. Although it is true that the collection of advance directives can be “improved” and that there is still a little number of directives, yet the rapporteurs mention that they are not mandatory. “Even if there are many different forms, of unequal quality, their proliferation should still be encouraged”. Some patients are in favor of simple forms, while others are reassured by exhaustive forms.
Mainly handwritten on plain paper, the legal binding aspect for the advance directives is in fact compromised by a vague wording. However, “the majority of health professionals (doctors, caregivers, hospital staff), all agree that there is more open and improved communication with patients and their loved ones on the end-of-life. They ascertain that the February 2, 2016 law helped curtail taboos, allowing discussions for speaking about suffering, support, comfort, sedation, and adapting to changing situations over time.“
How to define “Unreasonable Therapeutic Obstinacy »
The feedback from field situations emphasizes that identifying a case as “unreasonable therapeutic obstinacy” is remarkably complex. The term is defined as “the useless or disproportionate nature of the treatments in question, but giving leeway to interpretation or uncertainties depending on the circumstances.” As the authors point out, it is challenging to “adapt to each situation and to foster the flow of communication in order to facilitate consensus“. In most cases, the medical team usually initiates the issue of restricting or stopping treatment, however in some cases the patients, or their families, persist in their opposition, convinced of doing the right thing: “and medicine finds itself ensnared by its own promise of promoting medical progress.”
Recent cases involving the young Marwa and Ines but also Vincent Lambert are notable examples of these tense conflicts. The recent report recommends creating a telephone access for professionals confronted with such cases, to be able to discuss with a qualified external consultant, a professional mediator or an expert in ethical issues.
In particular, acknowledging that artificial nutrition and hydration is a treatment that can be stopped is “a delicate issue which is problematic to execute “. This is especially relevant for the most vulnerable individuals, such as patients with Alzheimer disease, or those in a pauci-relational condition. As the French National Union of Cranial Injuries (“UNAFTC”) has pointed out, artificial nutrition and hydration “constitute an integral part of the therapeutic and life plan for these patients. Thus it cannot be considered as unreasonable obstinacy, unless otherwise expressed by the patient’s advance directives or witnessed by the designated person of trust, or in the absence of the family or relatives, or in the event of complications.”
Deep and continuous sedation until death
According to the hospital centers consulted, these requests are rare. A quantitative survey was launched by the National Center for Palliative and End-of-Life Care, which was challenged by the SFAP (French Society for Accompaniment and Palliative Care). More specific data should be available by the end of the year.
On March 15, 2018, the High Authority of Health (“HAS”) clarified the grey zones for implementing “deep and continuous sedation until death” by publishing recommendations and standard operating procedures. The authors were cautious to differentiate this exceptional type of sedation, from euthanasia, whose objective is to cause death. According to some teams interviewed, “this new right has fostered patient communication, sometimes leading to cancelling requests for euthanasia“. Several overall difficulties linger: “healthcare teams are expected to discern essential concepts such as refractory suffering, unbearable suffering, and life-threatening conditions in the short term, while also appropriately handling the current criteria for evaluation …»
As a conclusion, the rapporteurs insist that “each situation dealing with the end-of-life must always be considered as profoundly unique, painful and complex.»