Adam Snowdon, a 16 year-old Sydney boy, was diagnosed with ALS (Amyotrophic Lateral Sclerosis) 18 months ago. The disease has progressed rapidly over the past three months and over this period Adam has quickly begun losing the ability to use his right arm to the point now where it is no longer effectively functional. He is also beginning to have difficulty standing and walking and is showing early signs of respiratory, swallowing and speech problems. His doctors speculate that Adam will die within a year and that in the months prior to that he will likely become “locked in” and unable to communicate at all.
Adam has always been a rambunctious boy. He has had numerous behavioral issues throughout his childhood, proving to be quite a handful for his parents. He has run away from home several times, has been suspended various times and expelled from two schools. Adam has also been detained by the police on four occasions for possession of alcohol and marijuana.
Adam is currently living at home in Sydney with his mother Nancy Snowdon and older brother David who just turned 17. Nancy works part time as a school librarian. She has full-time custody of her two sons. Nancy has been suffering from clinical depression for several months now. She has been under emotional strain since Adam became ill. She is currently taking antidepressant medication and is receiving counseling from a chartered psychologist. Through this treatment appears to be helping Nancy, she is still struggling to cope. On a few occasions she has missed appointments with Adam’s doctor, simply feeling unable to face the situation on her “bad days”. On those occasions Adam missed his appointments altogether as he shows no initiative in attending his medical appointments on his own.
Adam’s health care providers have not been able to establish a trusting relationship with him. They find it generally difficult to engage him in conversation, and he is especially uncomfortable discussing the ALS. He refuses to discuss the details of how his disease will progress or his preferences regarding options such as ventilators etc. He has, however, stated emphatically that he has no intention of allowing them to “put him in the hospital do die”.
Adam’s father, Ted Snowdon, is an engineer in Alberta. He and Nancy divorced relatively amicably when Adam and David were nine and ten respectively. Mr. Snowdon has not played much of a role in the lives of both of his sons after the divorce but he visits every summer and they all go camping. He has remarried to Clarice Snowdon who has shown little interest in the boys. Since Adam’s diagnosis, Mr. Snowdon has been flying out to Sydney regularly to be involved with decisions around organizing care for Adam. Mr. Snowdon feels strongly that decisions about Adam’s future care need to be made immediately.
Dr. Kerrigan is Adam’s family physician. She is concerned that Adam’s condition is getting worse very rapidly and is anxious about the decisions that will have to be made about Adam’s care. In particular, Dr. Kerrigan is worried about the relationships within the family. She knows that Mr. Snowdon feels strongly that his son should be hospitalized and eventually ventilated. He has stated that Adam is “too young” to know what he wants and is worried that Nancy is not able to handle keeping Adam at home, even with home care support. Dr. Kerrigan is concerned that Mr. Snowdon will dominate the decision-making process at the critical time and that Adam’s and his mother’s wishes may be overridden or altogether neglected. Beyond her concerns about the family dynamics, she is uncertain as to Adam’s decision-making capacity – and Mrs. Snowdon’s for that matter – and is also unclear on the more basic question of who ought to be making decisions about Adam’s care.
Since Adam became ill he has been seeing a neurologist at the local hospital, Dr. Watson, and Dr. Kerrigan are in touch frequently regarding Adam’s care and have discussed Dr. Kerrigan’s concerns around the family dynamics and the decision making that will need to occur in providing end of life care for Adam. Dr. Watson has requested a consult from the hospital ethics committee. Mr. Snowdon and his wife have flown in from Calgary just for this meeting. Adam was asked to participate in the meeting but he flatly refused, saying he wanted to spend time with some of his friends instead.
Ethics consultant #1 (facilitator)
Ethics consultant #2 (ethics facilitator)
Ethics consultant #3 (recorder)
Nancy Snowdon (Adam’s mother): Very concerned about her son’s welfare. Feeling overwhelmed, isn’t sure what to do.
Mr. Ted Snowdon (Adam’s father): Skeptical of Adam’s decision making capacity and can’t understand why Adam is acting the way he is.
David Snowdon (Adam’s 17 year old brother): David is scared, angry with both parents, worried about Adam, and worried about his own life. Most of all, he wants peace for Adam.
Dr. Watson (neurologist): wary of the complex relational issues at stake, as well as the challenges of making decisions for young ALS patients like Adam. Wants to make decisions as soon as possible before Adam is no longer able to express his own views. Feels in over his/her head, wants the committee to get this sorted out as much as possible. Dr. Watson has been developing an interest in bioethics and is considering becoming a member of the ethics committee.
Dr. Kerrigan (family physician): Concerned about the toll this is taking on Nancy, Adam and David. Worried that Mr. Snowdon is driving discussions around care.
Jamie Lee (patient services coordinator): Has been taking a bioethics course and is eager to apply her/his newly developed skills.