91. Case: What is Best for Angela?

Angela Flores is a six year old with some minor developmental delays caused by traumatic birth.  She has recently been diagnosed with a brain tumor and her prognosis is poor.  The health care team is trying to determine goals of care and a develop treatment plan.

Angela lives with and is cared for by her paternal grandparents, Jean and Rod, but there is no formal custody arrangement in place.  Angela’s parents have separated and her mother, Tina, has moved to Ontario to seek work on the understanding that she will send for Angela when she finds a job and an apartment.  Tina is in regular contact with the health care team by phone.  Angela’s father, Aaron, is sporadically involved in her life, coming and going unpredictably.

Angela’s grandparents are advocating for comfort measures only while Tina wants to pursue active, aggressive treatment and is asking whether there are any research studies that Angela could be enrolled in.  Aaron is currently in town and he wants to involve a homeopath in Angela’s care.

Jean and Rod appear to be frustrated with both Tina and Aaron and feel that they are best placed to make decisions for Angela.  Meanwhile, both Tina and Aaron emphasize that they are Angela’s parents and expect to be involved in decision making.  They get very upset when they perceive that decisions have been made without them.  There have been a couple of family meetings involving all four adults, and every time someone has stormed out of the meeting.

Jean and Rod are worried that Angela will be significantly distressed by the whole process of getting treatment as it will significantly disrupt her routine and there is another family member who recently died of cancer and Jean and Rod say that his treatment was painful, ineffective, and resulted in a “bad” death.  Jean and Rod are also very unwilling to involve Angela in any discussions about her diagnosis, prognosis, and treatment, saying that “there’s no way she can understand and it will just upset her.”

The health care team is also divided regarding what they believe are appropriate goals of care for Angela and some members who have worked with Angela for a long time are experiencing significant moral distress at the prospect of moving to palliative care.    They also aren’t sure how to approach conversations with the family given the level of conflict present, and are concerned that the conflict between the adults is interfering with making appropriate decisions for Angela.

How might you approach this situation?

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89. Case: Who Has a Right to Know?

Kevin is a14-year-old admitted to hospital with persistent headache, muscle spasms, tremors, significant motor impairment, fever, cough and symptoms of liver damage.

A diagnosis of lipoid pneumonia has been made and his clinicians are very suspicious that he has been inhaling nitrite compounds. Eventually they are able to confirm this when one of the team talks with friends who are leaving after a visit with Kevin.

When the physician confronts Kevin with this information, Kevin pleads with him to not tell his parents. His parents have been regular visitors and appear to be very concerned about their son’s condition. They have repeatedly asked the doctors to explain what is happening.

Several follow-up discussions with Kevin have not changed his mind; he does not want his parents to know anything about his drug abuse history. “You are my doctor aren’t you? That means what I tell you is just between you and me, doesn’t it?”

The physicians and rest of the team are unsure how to answer him. They do not know whether they should respect Kevin’s wishes in this regard.

At the suggestion of the team, the charge nurse has requested an ethics consultation. How will you prepare for this consult? What are the key ethics issues?

87. Case: Considering Alternatives

Jessie Rockford is an 8-year-old with a history of developmental delay, significant cognitive deficits, and symptoms of cerebral palsy. She is her parents’ only child and they are very loving, attentive, and concerned–they never miss a medical appointment and have carefully followed the care plan drawn up for their daughter.

However, with the passing of time they have grown increasingly concerned about her muscle spasms and contractions that seem to be causing her significant discomfort. They have consulted a local homeopath as well as a massage therapist who have both become involved with Jessie’s ongoing care.

At a regular clinic visit her parents tell the clinician about these new developments and add that they believe the treatments are helping. When the sessions are explored with Jessie, she shows no concern and seems quite content.

The health care team has some questions about this development and has called you to find out how they should respond to Jessie’s parents. Should they be supportive or discouraging of the parents’ decision?

85. Case: Adam’s Story

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.

Participants’ Roles:

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.

84. Case: Who’s Who

 

Pierre is a representative with a company that manufactures devices for use in joint-replacement surgeries.  He is often present in surgeries when his company’s products are being used.  Recently, as a patient was being wheeled into the operating suite the patient asked the surgeon who Pierre was and why he was there.  The nurse explained that Pierre was a with a device manufacturer and was there to provide support if needed.  The patient then asked, “But isn’t that a conflict of interest?”

Is there a conflict of interest?  How should the nurse respond to the patient?  And what should the hospital include in a policy designed to address these types of situations?

 


Resources:

 

83. Case: Strings Attached

 

A local business owner and philanthropist, whose parent recently died after living with Huntington disease for 15 years, approaches the hospital foundation to offer a significant donation in exchange for creating a new neurological research centre which would be named in memory of the philanthropist’s parent.  The hospital has identified its area of greatest need as improving access to primary care for patients in the remote communities it serves, but the donor is not interested in contributing to that mandate.

Is the hospital in a conflict of interest?  What is the nature of the potential conflict of interest?

 


Resources:

82. Case: Setting Up Shop

 

Arya is an occupational therapist who provides support for children with autism spectrum disorder.  She frequently recommends sensory integration tools to parents, but most of these are only available online through US-based websites and often that is a barrier for parents.  She is considering starting a side business importing and selling these products, but is aware that there will likely be a perceived conflict of interest.  Arya approaches her manager for guidance.

If disclosure is not enough to eliminate the perception of conflict of interest, what could Arya do?  If the perceived conflict of interest cannot be effectively managed, what should Arya do to meet her patients’ needs?

 


Resources:

81. Case: Lending A Helping Hand

 

Alison is a nurse who is working in an endocrine clinic part-time while also working on her Ph.D.  She is studying two different approaches to patient education about diabetes management.  She is putting together her research ethics application.  Alison makes a case for the logistical necessity of her being involved in recruiting patients. Her colleague and friend, Jason, will also help to recruit patients for the study.  Alison proposes that she will disclose that the research is for her Ph.D and that the patient’s decision about participation will not affect care, but Alison and Jason aren’t sure about what Jason should tell patients about their relationship.

Do you think that Jason has a conflict of interest?  If so, how should it be managed?  And does Alison’s disclosure adequately address concerns about her conflict of interest?

 


Resources:

80. Case: Less Talk

 

David is a patient waiting in a treatment room at a walk-in clinic.  He can hear the physician chatting and laughing with someone outside, and from the conversation he guesses that the physician is talking with a pharmaceutical sales representative.  David has been waiting for almost two hours with a high fever.  As the conversation outside continues, David becomes increasingly angry.

Do you think that the physician might have a conflict of interest?  If so, how should it be managed?

 


Resources:

79. Case: It’s the Little Things

 

A patient asks your colleague, Arya, “Where are you from?”  When Arya replies, “Winnipeg,” the patient says, “Oh, but where are you from originally?”  Arya, whose family immigrated to Canada before she was born, is clearly frustrated by this.  You were present during the exchange and were uncomfortable but didn’t know what to say at the time.

Discussion:

  • What are the ethical concerns raised by this case?
  • What might you say to Arya afterward?
  • How might your employer support Arya in addressing these sort of situations?

 

 Resources: