Most people don’t think of ice cream as being particularly important in their life, but acknowledge that they enjoy eating it. For some, however, ice cream is the ultimate treat, and given the vast array of providers, each trying to reach new heights of flavour and texture, one wonders how there was a time when the choices were generally very limited.
I recall that when I was a child travelling with my parents to upstate New York or New England for a family camping trip, we stopped at a Howard Johnson’s for a memorable ice cream treat: there were 28 flavours to choose from, a number beyond anything available at my neighbourhood “candy store,” where there were at most 10 flavours with vanilla, chocolate and strawberry being at the top of the list.
Most of us have fond associations with the ice cream stories of our youth and the vendors that catered to us as children. We generally continue to enjoy the special taste and “treat” of ice cream into our later years.
It’s because of this almost universal pleasurable association with ice cream that I have recently used it to explore the values and expressed wishes of patients afflicted with varying stages of Alzheimer’s disease and other dementias. It helps families understand some of the decisions that they may have to make in the late stages of the condition.
One of the many serious consequences of late-stage dementia, which often occurs after an acute medical event such as a serious infection, major fracture or surgery, is often rapid deterioration and the development of what is called delirium, with serious mental confusion and agitation. This state can interfere with care and may result in the person’s refusal to take food and fluids by mouth.
Sometimes, inadequate intake of food and drink is just part of the general deterioration in basic bodily activities, where the person may show no interest in eating or drinking or may keep the food in the mouth for long periods without actually swallowing. At this point, whether in a hospital, a long-term care setting or a home setting, the question of “artificial hydration and nutrition” (tube feeding) may be proposed.
It is very hard for loved ones to deny the provision of food and drink, which are universally associated with love and affection. Also, the idea of “starving” their loved one is generally anathema to caring family members.
To help them understand what a feeding tube would mean, information that should inform the final decision they may have to make, I ask them how they would feel if they could never taste ice cream again and, in fact, never taste anything again, as food will go directly into the stomach without passing through the lips and mouth.
Invariably, scores of those to whom I pose this question, answer: “Are you crazy, who would want that?” or “No thank you, I wouldn’t want that.”
They are beginning to understand that with a feeding tube, although perhaps one may be alive, there will be none of the joys associated with eating, and this helps them look at the decision they have to make more clearly.
I tell the family, “This is the beginning of an important conversation – remember it when things are difficult and you have to make such serious decisions on behalf of this person you love.”
These conversations help ensure that family members are comfortable and can live without lingering guilt because of the decision that was made.
Dr. Michael Gordon is medical program director of palliative care at Baycrest. His latest book is Late-Stage Dementia, Promoting Comfort, Compassion and Care. His previous book, Moments that Matter: Cases in Ethical Eldercare, follows his memoir, Brooklyn Beginnings: A Geriatrician’s Odyssey. All can be researched at his website: http://www.drmichaelgordon.com.