Some LTC residents living with impairments they may consider ‘worse than death,’ say Ottawa researchers

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Researchers say those potential outcomes — which affect a significant number of long-term care residents — should be understood and acknowledged when families talk about end of life wishes with their loved ones.

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“We are not offering resident-centred care or evidence-based care if we don’t talk about the possibility of severe disability and ask about the circumstances when life prolonging treatments would not be acceptable,” said lead author Ramtin Hakimjavadi, an internal medicine resident at the University of Ottawa.

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Hakimjavadi said in interviews some long-term care residents have expressed that loss of independence is “more distressing to them than the thought of dying.”

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Daniel Kobewka, an investigator at Bruyère and adjunct scientist at ICES, said residents and their family members and care teams should have open discussions about what quality of life means to the resident, considering the possibility of prolonged disability.

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Kobewka, who is the study’s senior author, said he was surprised to learn how long some long-term care residents lived with such severe disabilities. Family members who are making decisions for their loved ones are better prepared to do so if they have had open discussions ahead of time, he said.

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Researchers found that 65 per cent of residents in the study had a do-not-resuscitate order and one-quarter had do-not-hospitalize orders. Those with advanced care directives spent less time living with a severe disability. The authors said that was likely because the residents’ preferences were discussed and care partners or providers knew how to support their end-of-life decisions.

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Planning ahead can help ensure that future care aligns with residents’ personal values, said Kobewka.

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Residents’ wishes might include not going to the hospital, no resuscitation or even not being given antibiotics, he said.

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The goals of medical care are generally to help people live longer, to feel better and to function better, said Kobewka. “But in serious illness there does come a time when those goals are in conflict with each other and so having that conversation about when is pursuing longevity adding to discomfort, or when is pursuing comfort more aggressively going to shorten life (helps with decision making).”

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In advance-care planning, people are often advised to discuss their loved one’s values and wishes when it comes to end of life care, “but that can be nebulous,” siad Kobewka.

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“I think we are trying to make that concrete with these really clear outcomes (such as) being in a state where you cannot understand others and cannot make yourself understood and being permanently like that. Everyone understands that and you can talk about what you would want if you were like that even though it is scary and hard to hear.”

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Such discussions can be ongoing and change with time, he said.

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“Often these decisions can be stressful, but if you are prepared to make them and have thought about these things it is easier to make a decision that respects your loved one.”

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