The phone call
The director of care rings: your mother has refused personal care for days, spits out her pills, pushes her tray away. You are asked what should be done — and the implication is that this is now your decision.
That is where most families take a wrong turn. Start with what the law says.
Refusing is a right, not a symptom
Health care consent legislation across the provinces starts from the same place: no treatment without consent, capacity is presumed, and it is decision-specific. Your mother may be unable to manage her banking and perfectly capable of deciding she does not want a shower this morning. A dementia diagnosis is not a finding of incapacity.
Where she is not capable for that particular decision, consent passes to her substitute decision-maker — and this is the part families get wrong. In most provinces the SDM must follow the person's prior capable wishes if any are known, and only otherwise act in her best interests, taking her values and beliefs into account. It is not a licence to decide what the family finds reasonable.
Two practical questions follow: "Who is on file as her substitute decision-maker, and under what document?" and "Has capacity been assessed for this specific decision, by whom, and when?" Being her daughter does not, by itself, make you the decision-maker.
Before the law: the three causes to rule out
In most cases refusal is a message rather than a decision. Ask for these to be excluded, in this order:
- Pain. Someone who hurts when moved resists being washed, and with dementia this is not reported in words. Ask whether pain was assessed with an observational tool, and when — pain is also a publicly reported quality indicator, so the home is already collecting it.
- Delirium. Refusal that appeared over days rather than weeks, with fluctuating confusion, is delirium until proven otherwise: urinary infection, dehydration, constipation, a new medication.
- The situation itself. Unfamiliar hands, cold water, a male aide washing a woman who has never experienced that, the rush of the morning shift. Anyone resists that; it only gets called refusal at 88.
For pills there is a fourth cause nobody checks: swallowing difficulty. Someone who chokes spits pills out. That is a speech-language pathology referral and a question about the formulation, not a persuasion problem.
What to ask for
- A pharmacist medication review. Which of these still make sense at this stage? Statins, supplements and bone medications can often be stopped — and half the refusal problem goes with them.
- Different formulations: liquids, dissolvable tablets, patches.
- Care delivered differently: another time of day, the same PSW each time, same-gender care, washing in stages rather than a full shower, telling her before touching her.
- All of it written into the plan of care, including how often the refusal actually happens. "She always refuses" is usually a memory, not a record.
And the sentence that resolves half of these cases: someone who refuses at 7am and accepts at 11am does not have a refusal problem — she has a scheduling problem, and that is a care planning item.
What not to accept
An antipsychotic "so we can get her washed". Least restraint is the standard across Canadian long-term care legislation: a drug given to overcome resistance is a chemical restraint requiring clinical justification, consent, documentation and review. Remember that antipsychotic use without a diagnosis of psychosis is publicly reported for this home — look it up.
Medication hidden in food with no plan. Covert administration is treatment without consent. It requires a documented decision involving the prescriber and the pharmacist, not a decision taken on a shift.
Two staff holding her as routine. A single emergency is one thing; a daily practice appearing in no record is restraint.
When it becomes serious
If the refusal extends to food and fluids and persists, this stops being a behaviour question and becomes clinical and ethical. Ask for a meeting about the goals of care, and bring any advance directive or personal directive she made while capable. In advanced dementia, tube feeding generally neither extends life nor improves it.
If nothing changes
- A written request and a care conference, with the agreed approach documented in the plan of care.
- Access to her records: what was tried, how often, with what result.
- Your province's long-term care complaint or action line, and the patient ombudsman where your province has one.
- The provincial consent and capacity board or tribunal, where a dispute is genuinely about capacity or about who decides — that is what it exists for.
And if the problem is the home
Someone who resists needs time, continuity and the same hands each morning. A home with high turnover and heavy agency use cannot provide those — and then calls it refusal.
If you reach that conclusion and do not have another round of calls in you, that is the part we do. Tell us the region, your parent's care needs and what is not working, and you get a shortlist of homes worth calling, for CA$99. If you don't receive at least 3 homes matching the area and criteria you gave us, we refund you in full. Start here
This article is general information for families, not legal or medical advice. Consent and capacity law, substitute decision-making and advance directives differ by province and territory. Curalune does not allocate beds and does not guarantee availability.