As part of the Globe's in-depth series on End of Life decisions in the 21st century, we asked for your questions on this difficult topic. Readers from across the country sent in their questions for Dr. Rob Fowler and Dr Damon Scales, critical care physicians at Sunnybrook Health Sciences Centre in Toronto.
My 81-year-old father had a stroke and has been on life support for almost year. He had no directive and my mother passed before he did. my siblings want to keep him this way but I don’t think it’s what he’d want. What are your suggestions for talking to them and ending his life now? -Murray
Murray, thank you for sharing your story with readers. I am sure that this past year has been a difficult and sometimes stressful one for you and your family. It is certainly natural and common that we want to do everything we can to increase the longevity and quality of life for our loved ones. I’m not certain of the exact kinds of life support that your father has required over the past year - sometimes patients require help receiving nutrition by a tube in the nose or stomach, others need support for their breathing on a mechanical ventilator, help for their kidneys with dialysis, and yet others have heart and blood vessel illness requiring infusion of medications to maintain their blood pressure.
In my experience, some of these forms of life support can be administered while maintaining quality of life. But with others, and especially multiple forms of the kinds of life support highlighted above, it becomes very challenging for patients over a long period of time.
That balance of quality and quantity of life is a very tough and individual decision to make. If the patient isn’t able to communicate, and make their own decisions, I always try to encourage families to try their best to make decisions based upon what the patient would themselves have wanted – you and your family likely know your father best. Even if there is some disagreement, often the big picture of what they would have wanted over what period of time emerges.
Again it is natural and one of the signs of a loving family that we want to keep our loved ones with us for as long as possible. Sometimes this personal desire for us all makes it hard to focus on what you think the patient would have wanted. I’d encourage you and siblings to, as much as you can, think about what you think he would have wanted if he could guide you in this tough situation.
When someone cannot breathe on their own - like my sister, who was in a car accident last year - are they in pain? So many people tell me she’s aware of what’s going on - but it doesn’t look like it at all. The doctors say she has very little brain function. What can she feel/hear? if it’s nothing - which i suspect - am i justified in asking for a DNR? -Kathleen
Knowing exactly what patients can sense – hear, feel, see – after a severe injury where there may be brain dysfunction is sometimes very tough.
Nurses, physicians and try to get a best estimate of this with bedside physical examination, focusing on a patient’s response to voice and stimulation, and provide some insight for family members who are uncertain. Imaging tests such as CT, MRI scans and measures of nerve impulses from the periphery of the body to the brain often provide more information.
When patients are persistently in minimally conscious or unconscious states, knowing what they sense is very very difficult. Recently, some studies have found that patients in these states do exhibit evidence that their brains sense things even when they don’t outwardly demonstrate a response. I often tell families (and colleagues) to talk with patients ‘as though they can hear you’, even if we think it is unlikely.