Severe, lasting impairment that some consider ‘worse than death’ affects many residents after long-term care admission

The impact of long-term care on residents is a topic that is often overlooked but is crucial for understanding the quality of life for those in need of these services. A recent study conducted by Bruyère Health Research Institute and ICES sheds light on the challenges faced by residents in long-term care facilities, particularly in terms of severe disability and loss of decision-making abilities.

The study, published in JAMA Network Open, followed 120,238 adults aged 65 and older who were newly admitted to long-term care facilities in Ontario, Canada, between 2013 and 2018. The findings revealed that 20% of residents became permanently unable to make everyday decisions for themselves within five years of admission. Additionally, 13% of residents became totally dependent on others for all care needs, such as bathing, toileting, and eating.

One of the key findings of the study was that residents under 80 years old and those with dementia were more likely to live longer once they reached a state of total care dependence. However, residents with advance care directives, such as do-not-resuscitate orders, did not live as long after developing severe disabilities compared to those without such directives.

Lead author Ramtin Hakimjavadi emphasized the importance of discussing quality of life and end-of-life care preferences with residents and their families. He noted that loss of independence is often more distressing to residents than the thought of dying, highlighting the need for resident-centered care that considers individual values and preferences.

Dr. Daniel Kobewka, the senior author of the study, emphasized the importance of planning ahead and aligning future care with personal values. By having open discussions about quality of life and preferences for end-of-life care, residents can ensure that their care aligns with their values and prioritizes comfort and dignity over life-prolonging interventions.

Overall, the study highlights the need for a more holistic approach to long-term care that takes into account the preferences and values of residents. By engaging in open discussions and planning ahead, residents can ensure that their end-of-life care reflects their wishes and provides them with the quality of life they desire.