DEFINITION
In the context of the care for elderly people in nursing homes, a “refusal" is when a patient is opposed to being cared for, reluctant to accept help from a professional. “Care" includes all acts meant to preserve the health and well-being of the patient. That can either be medical care or the so-called “nursing” care.
EXAMPLES
Medication, physical therapy, bathing, therapeutic workshops, nutritional care, medical examinations, psychological care…
Several reasons can be outlined as the origin of a refusal of care. For example, patients with dementia can be in denial about their illness (anosognosia) and do not realize how important it is for them to receive care. Sometimes, refusal stems from a rational and thought-out decision made by the patient. Other patients refuse care as a consequence of past unpleasant experiences, or in order to die.
Refusal of care can rapidly become problematic if it persists and can have grave consequences. When the patient is capable of expressing their will, most laws aim to have it respected, only making an exception in case of life-threatening risks. But this presents ethical questions:
- When must one consider that an individual has become incapable of giving informed consent ?
- Must one respect the freedom of choice of a patient with dementia ?
- Between unreasonable stubbornness and negligence, where to draw the line?
- When must one give up on giving care?
- Must one respect the will of the patient and their refusal of care, or compel them to accept care to protect them?
The consequences of refusal of care are numerous, and it is difficult for the medical staff to come to a decision. It can both harm the patient well-being as well and possibly put them in danger. But it can also create a feeling of injustice in other residents following the preferential treatment received by the patient who refuses care, and thus create anxiety-inducing conflicts (ex: personalized diet). Refusal of care can also create for the care provider a conflict between their moral values and their duties, because it goes against a carer’s code of ethics as their obligation is to protect the health of the resident while also respecting their will. Their practices can as a consequence be called into question. Conflictual relations with the families can also emerge because of their worries concerning medical responsibility.
WHAT CAN CONCRETELY BE DONE?
Refusal of care must not be reduced to simple antagonism, but one must try to find the cause of it, which is most often both implicit and multifactorial. To understand the opposition, it is necessary to take into account the patient’s life history, socio-environmentals factors, and for that one must seek the close relatives’ help. If the refusal persists and has grave consequences, the decision comes from a multidisciplinary reflection which accounts for the law and is supported by ethical guidelines.
Some refusals of care can be avoided through a good therapeutic cooperation, patience and communication. This can be accomplished by using the personalized care plan created with the families, and the goal must always be to preserve the resident’s autonomy as much as possible. In the most complex cases, it is necessary to assess what is to be done, then among that prioritize the most urgent acts of care as well as insure the comfort (both physical and psychological) of the patient.
MEDICAL RESPONSIBILITY
The traceability of refusals of care in the patient’s medical file is essential, particularly to justify, in case of a dispute with the relatives, that the patient was informed of the risks they would take. Indeed, care providers can quickly be accused of non-assistance to a person in danger. Families can present the respect of a refusal as neglect, or even abuse, and possibly sue the nursing home.
THE ROLE OF THE PSYCHOLOGIST
The psychologist is there to investigate and identify if the patient has understood the proposition and what they consequently refused. The psychologist is there to mediate between the care providers, the family, and the resident.
Words I have learned:
– Life-threatening risk = Risque vital
– Stubbornness = Obstination
– Compel = Contraindre
– To come to a decision = Prendre une décision
– Neglect = Négligence
– Sue = Poursuivre en justice
Bibliography:
- Etchells E, Darzins P, Silberfeld M, et al. Assessment of patient capacity to consent to treatment. J Gen Intern Med 1999 ; 14 : 27- 34.
- Janoksky JS, McCarthy RJ, Folstein MF. The Hopkins Competency Assessment Test : a brief method for evaluating pateint’s capacity to give informed consent. Hosp Community psychiatry 1992 ; 43 : 132-136.
- Loi n° 2004-800 du 6 août 2004 relative à la bioéthique d’après le code civil.
- Les problématiques éthiques liées à la personne âgéedépendante. Observatoire Interrégional des Pratiques de Soins etd’Accompagnement au regard de l’Éthique, 2014.
- Le refus de soins. Société Française de Gériatrie et Gérontologie,2012.
- Le refus d’aide des personnes âgées à domicile : comment y faireface ? CLIC Métropole Nord-Ouest, 2014.