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Who wants to talk about dying? A case study on Mrs. C

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​​Dr. Ron Keren sits at his desk.

Dr. Ron Keren, Medical Director, Geriatric Rehabilitation Program, Toronto Rehab and Co-Director, Memory Clinic, UHN, discusses the case of Mrs. C and end-of-life care with the elderly, namely those with dementia.​ (Photo: UHN)


 

Mrs. C was an 82-year-old married woman from Portugal who resided in a long-term care home. She was in the advanced stage of a terminal illness when, despite having clearly documented advanced directives requesting comfort care only, she was hospitalized and treated aggressively for a severe infection.

Mrs. C survived her acute illness. However, at the time of her discharge she was incontinent, could no longer walk, feed herself, or communicate with her family. 

'They thought they were acting in her best interests'

Despite her advanced care directives, her family and her health care providers thought that they were acting in her best interests by treating her infection.

They perceived that their obligation was to prolong her life.

They did not understand the practical implications of her advanced directive and they did not anticipate her unfortunate outcome.

It is doubtful that Mrs. C would have been admitted to the hospital had she been in the terminal stage of a malignant illness.  She would have likely received palliative care either at home or in a hospice.

However, Mrs. C's terminal illness was advanced dementia and not cancer.

Patients with advanced dementia are under-recognized as being at high risk for death and often receive suboptimal palliative care.

Alzheimer's disease: A leading cause of death in the aging population

Mrs. C's family did not appreciate that she was in an advanced stage of Alzheimer's disease nor did they, like many others, know that Alzheimer's disease is a terminal illness.  

In fact, Alzheimer's disease is a leading cause of death in the aging population.  Like other terminal illnesses, such as cancer or heart failure, individuals with advanced Alzheimer's disease experience symptoms such as pain, shortness of breath and loss of appetite. 

Unlike most terminal illnesses, individuals with Alzheimer's disease will lose their capacity to make medical decisions, and to direct their care, long before they reach the terminal stage. To be able to direct their end-of-life care, it is imperative that individuals diagnosed with Alzheimer's disease appoint a substitute decision maker while they are still capable who understands and respects their expressed wishes.

'Open and frank communication'

Advance care plans, while important first steps in planning for the future, do not replace the need for regular communication about one's wishes and attitudes regarding care at the end-of-life.

Mrs. C's case highlights how important it is for patients and families to appreciate the stage and prognosis of their illnesses and for open and frank communication between patients, families and health care workers about end-of-life care. 

Persons with dementia whose families have an understanding of the poor prognosis and clinical complications expected in advanced dementia are much less likely to experience burdensome interventions such as hospitalization, emergency room visits, intravenous therapy or tube feedings.

Advance care plans, while important first steps in planning for the future, do not replace the need for regular communication about one's wishes and attitudes regarding care at the end-of-life.

One does not need to be in the advanced stage of a terminal illness to appreciate the importance of education and communication about one's health and what to expect when facing a medical problem.

In the elderly, especially those with multiple chronic health problems such as heart failure, kidney disease, dementia and frailty, some medical and surgical treatments may lead to a decline in health status and independence.

Communication and education about the potential implications of health care decisions in these individuals empowers them to make good decisions, which protects their interests and helps to maintain their quality of life.

Dr. Ron Keren is the Medical Director, Geriatric Rehabilitation Program, Toronto Rehab and the Co-Director, Memory Clinic, University Health Network.

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