Michael Gordon MD, MSc, FRCPC is a geriatrician working at Baycrest Health Science System. He is medical program director of the palliative care program, co-head of the clinical ethics program and a professor of Medicine at the University of Toronto. He is the author of Late Stage Dementia, Promoting Compassion, Comfort and Care; Moments that Matter: Cases in Ethical Eldercare and Brooklyn Beginnings: A Geriatrician's Odyssey. For more information see drmichaelgordon.com
Ice cream is a fairly ubiquitous treat. In almost every country of the world, there is something similar, if not exactly the same as what we in North America refer to as ice cream. Depending on where one spent their childhood and the cultural, ethnic and national history of the people in a given community or neighborhood, there may be a very narrow or wide range of products, all of which come under the broad category of ice cream. When I was growing up there were many small “candy stores” and “soda fountains” that among other things served ice cream, usually delivered in large tubs and scooped out into cracker-like cones or into small disposable cups. For those with more appetite and usually money, it was possible to order some ice cream concoction that contained ice cream; some flavored sweet syrup such as chocolate or caramel and often topped with real whipped cream, with the special treat of a candied cherry on the top. It was a child’s dream and delight.
For many people ice cream remains the ultimate treat. With the explosion of ice cream outlets, with a vast array of providers, each trying to reach new heights of flavor, texture and presentation one wonders how there was a time when the choices were few other than in very special circumstances. I recall as a child when travelling with my parents to upstate New York or New England for one of the family camping trips that we stopped by a Howard Johnson’s for a memorable ice cream treat: there were 28 flavors to choose from, a number beyond anything available in my neighborhood “soda fountain” where there were at most 10 flavors with vanilla, chocolate and strawberry being the top of the list.
Most of us have not only fond associations with the ice cream stories of our youth and the well-known vendors that catered to us as children such as the “Good Humor” truck that stopped by my public school during lunch break we continue to enjoy the special taste of experience even into our later years.
It is because of this almost universal pleasurable association with ice cream that I have over the past year used it to explore the values and expressed wishes of patients, living with varying stages of Alzheimer’s disease and other dementias. This is to help families understand some of the decisions that they may have to make in the late stages of the condition. 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 serious surgery is a deterioration resulting in delirium with serious mental confusion and agitation which can interfere with care and may result in the person’s refusal to take food and fluid by mouth. Sometimes, inadequate intake of food and drink is just part of the general downward deterioration in all basic and essential bodily activities, where the person may show no interest in food or may keep the food in the mouth for long periods without actually swallowing. It is at this point; whether in a hospital, long-term care setting or home setting that 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 universally is associated with love and affection. Also the idea of “starving” their loved one is generally anathema to caring family members. To help them understand their parent’s desire which should inform the final feeding decision that they may have to make, I pose to my patient how they would feel if they could never ever taste ice cream ever again and in fact not ever taste anything again as food will go directly into their stomach without passing through their lips and mouth. Invariably, over scores of those to whom I have posed this question, I receive the following answers, “Are you crazy, who would want that?” or “No thank you, I would not want that.” I turn to the family and say, “This is the beginning of an important conversation. Remember it when things are difficult and you have to make those serious decisions on behalf of this person you love.” Having these conversations are very important before urgent decisions have to be made so that everyone is comfortable with them and can live on without lingering guilt after they are made.