I would like to tell you an all-too-familiar story. It begins with a long-term care home resident, Laura, who has multiple chronic conditions and gets an infection that doesn’t get any better.
Her health has been declining for months, but no one has talked to her about her preferences for end-of-life care. In the absence of that knowledge, she is sent to the hospital where she undergoes stressful tests.
The story ends with Laura dying in the hospital, alone and frightened. Her family is traumatized, and so are the staff who have cared for her over the past year.
Pamphlets Help Stimulate Conversation
How do we change those statistics and give our older people the care they want—and deserve? My team’s research has focused on answering that question over the past six years.The pamphlets were disease-specific (for example, focusing on dementia), and included information about life-limiting illnesses, what to expect, and tips for talking about wishes for the future.
Planning Death Is a Great Relief
Moving from thinking to a discussion, however, was a different matter. Family members worried that bringing up the subject would destroy hope. Residents thought they should protect their families from thinking about their death.Death Is Taboo, Globally
The problem goes beyond long-term care homes. A striking 93 percent of Canadian participants in a recent poll think it’s important to communicate their wishes for future care should they become seriously ill, but only 36 percent have actually done so.Most of those surveyed said they would prefer to die a natural death at home without being a burden on their families. However, due to a lack of end-of-life planning, that is not what happens.
Care Home Staff Need Training
That means we need to clarify roles and provide the necessary training to support long-term care home staff, especially those who develop strong relationships with residents.I would like to be able to tell you a different story. It begins with a care home resident, Sam, who gets an infection and is not getting better, even with antibiotics.
Sam has been living with multiple chronic conditions for some time and his family knew frequent infections could be a sign that the end of life was near. The family also knew that he wanted to die in the long-term care home and not in a hospital—because they had talked about this when he was healthier and could communicate his desires.
Sam dies, but with dignity and in peace and, most importantly, in keeping with his own wishes.