92. Case: Franklin Isn’t Safe at Home

Franklin Pictou is a 68 year old with limited mobility receiving post-surgical follow up care in the home. He wishes to remain in his dwelling, which is not especially clean and poses hazards to him (uneven stairs, loose carpets, wood stove for heat, and mould) and to health care providers (bed bugs).

He chooses to stay at home because, as he says, “he likes it here” and he cannot find an alternative living situation that he can afford in which his large dog would be welcome.

Which factor do you think is most important in Franklin’s choice of where to live?

  • Cost of alternatives
  • Familiarity of home
  • Comfort of home
  • Having his dog with him
  • Feeling in control of the situation
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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.

12. CASE: Should Steve Go Home?

Throughout his life, Steve was the athlete that everyone admired. He played all sports well, especially excelling at basketball. While being quite competitive, Steve was a team player who enjoyed being a part of the team experience.

Unfortunately, while ‘horsing around’ with his friends last summer, Steve dove off a dock into water that was too shallow. His head cracked on the bottom resulting in a spinal cord injury. He is no longer able to walk and has slowly been regaining some control over a few of his fingers.

At 17, Steve felt that his life was over and has had difficulties participating in his rehabilitation program, saying things like, “What’s the point if I’m never going to walk again?” and, “I can’t even go to the bathroom by myself!”

Steve’s family, friends, and health care team rallied around him providing lots of support and encouragement. Over the past month-and-a-half, the health care team noticed some positive changes in Steve’s involvement in his rehabilitation program. He is participating more and talking about wanting to get out of the rehab facility. Accordingly, the health care team was working with Steve on a discharge plan in three weeks, if his progress continued. All of this seemed to indicate that Steve was beginning to see a new life for himself – until one of the Recreation Therapists came to the team meeting three days ago.

Steve and Andrea, the Rec Therapist, developed a close working relationship over his time at the rehab facility. Steve often shared with Andrea what he was really thinking and this has been helpful for the health care team to identify what interventions and supports may be needed. Steve confided to Andrea (three days ago) that the only reason that he was working so hard at learning to use his motorized wheelchair was so that he could control the joystick well enough to ensure that he could kill himself by driving off the same dock where his injury occurred.

A consult with a psychiatrist who specializes in persons with spinal cord injuries reports that Steve is not depressed and does not seem to have the intent to follow through with his plan of suicide. He said that this expression may have been primarily an indication of Steve’s ongoing frustration and adjustment to his spinal cord injury.

Even with this information, the team is conflicted about what to do. Their own hopes that they were making progress with Steve have been challenged too. The team agrees to consult the ethics support service.

  • How would you handle this request?
  • What values appear to be shaping the dynamic for team members? For Steve?
  • What are the ethics concerns?
  • How should the health care team reconcile the difference in opinion between the psychiatrist and those who believe Steve’s plan to commit suicide?

 

Some Values and Ethics Issues to Consider

  • Capacity
  • Respect for patient autonomy
  • Moral distress of health care providers
  • Respect for professional integrity
  • Honesty, trust and truth-telling
  • Patient-provider relationships
  • Compliance with policy

6. CASE: To Feed or Not to Feed?

You receive a call on the ethics line about a patient’s relative (next-of-kin and legal decision-maker) force-feeding her sister who is a patient on the unit (pushing food into the patient’s mouth and then holding her mouth closed, pinching her nose, etc. until she swallows). Apparently, this was not an uncommon approach to getting her to eat in the group home where she had lived very happily for 10 years prior to admission (she is 58 years old). The charge nurse feels this is abusive and dangerous behaviour, not acceptable in the hospital setting, and has told the relative this. The patient currently receiving TPN-GI does not feel she is a candidate for a peg-tube. The psychiatrist has assessed the patient as depressed and medication has been started- it takes several weeks to reach full effect, so the team is waiting to see how this will go. The option of ECT has been looked into also, but the anaesthetist feels the patient is too fragile to receive the sort of sedation needed for this procedure. The team does not feel the patient is appropriate for the acute care orthopedics unit (she is unlikely to walk again, is incontinent, immobile, dependent for ADLs with little sign that this will ever change, so not likely to get back to a group home situation in the community). The team’s concern appears to be “we need our beds for patients we can operate on and fix”, although they have not voiced this opinion explicitly. The charge nurse has learned the patient’s relative is angry with the team because she feels the patient is being discriminated against on the basis of her cognitive and physical disabilities so that PT and OT are not working hard enough with her. Staff says this is not the case- the patient is refusing to participate (originally she was told that if she walked and ate she could get back to her group home- this has not happened and the nurse feels she has given up, and is exerting the only sort of protest she can by not eating or cooperating with staff efforts any longer). Finally, there is concern about the possibility of a feeding tube down the road – should the patient get one if she continues to refuse to eat, even after the depression is adequately treated? Is this a decision the relative can make? There are also questions about the possibility of modifying the patient’s diet to be more palatable to her, realizing that this is also more dangerous given her high risk of aspiration.

  • How would you work through this case?
  • Which issues are ethics issues and which are medical decisions?
  • Who needs to be involved in making necessary decisions to move forward?

Some Values and Ethics Issues to Consider

  • Patient-family relationships
  • Respect for professional integrity
  • Moral distress of health care providers
  • Resource allocation
  • Substitute decision-makers
  • Respect for dignity
  • Staff morale
  • Quality of life
  • Duty to provide care

1. CASE: Sensitive Information

John is a young man with a traumatic spinal cord injury that has resulted in paraplegia. He is leaving the rehab hospital on a weekend pass and has confided to his chaplain that he intends to kill himself. The chaplain calls the ethics service for assistance.

  • Should the hospital issue the pass?
  • What are the ethics issues involved?
  • What information do you need to find out to move forward?
  • Who would you invite to a discussion about this issue?

Some Values and Ethics Issues to Consider 

  • Respect for autonomy
  • Beneficence
  • Non-maleficence
  • Duty to provide care
  • Living at risk
  • Moral distress
  • Compliance with policy
  • Respect for privacy and confidentiality