97. Case: Surgery, Supported Decision Making and Capacity

Alex is a 27 year old resident in a supported living facility.  She has a diagnosis of developmental delay.  She is close with her younger brother, Anton.  Alex has identified Anton as someone who helps her to make decisions.  The organization that runs the facility where Alex lives has recently adopted a policy in favour of using supported decision making whenever possible.

Alex has a number of cavities and pain in her teeth is interfering with her ability to eat a wide range of foods.  She eats a soft food diet, and the staff at her facility have raised concerns about the long-term health effects of both untreated cavities and the soft food diet.

After some negative experiences in childhood with blood draws that included being held down and restrained, Alex is intensely afraid of needles and white coats.

Anton has had discussions with Alex about different options that the local dentist can provide, but Alex is adamant that she doesn’t want any dental interventions.  Alex says she will just wait until all her teeth fall out and then get dentures.  She says she’d rather deal with the long-term consequences of eating the soft food diet than face a dental appointment.  Anton observed some of Alex’s interactions with medical care when they were children, and confirms that the experiences were harrowing.

Alex and Anton’s mother is listed as Alex’s substitute decision maker, and the staff feel that Alex’s mother would be willing to authorize sedation and surgery to extract the teeth so that Alex could be fitted for dentures and return to eating a normal, varied diet (which she was happy with before her teeth started hurting).

Some staff members see this is a situation where concerns about Alex’s well-being should override the principled commitment to supported decision making.  They have identified this tension as causing some of them moral distress, and have requested support from the ethics committee.


Questions:

  • What will make this case clinically challenging?
  • What will make this case ethically challenging?
  • How might the ethics committee support the team in dealing with their moral distress?
  • What would change (if anything) if Alex hadn’t had the experience of being restrained for blood draws as a child?
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88. Case: Whose Problem Is It?

Case substantially modified from “Obesity in Kids: When Appeals to Vanity Don’t Work,” Virtual Mentor 8(10): 377-380, October 2006 – see virtualmentor.ama-assn.org

Nicholas has the option of spending the summer in an intensive weight reduction program at a health facility in Ontario. This highly regarded program accepts only 10 adolescents each summer, based on medical problems related to obesity. Nicholas has cardiomegaly, hypertension and pre-diabetes. At 14, Nicholas is 5 feet 7 inches tall and currently weighs 285 pounds.

The health team caring for Nicholas is quite concerned about him and believes that this program would be a great option. While traveling to Ontario and being separated from his family might be hard, the weight reduction program would likely have a very positive benefit on Nicholas’s health.

Indeed, one of the health team members, Matthew, feels strongly about this as he recalls what it was like to be the “fat kid” in class, putting up with the teasing and ridicule. After a family meeting, Matthew is almost incredulous that Nicholas isn’t sure about the program and that his parents aren’t really pushing him to go. He’s overheard saying to Nicholas’s mother on the way out of the meeting that, “I can’t believe that you aren’t sending him to the program. It’s his only chance! Any good parent would send their child.”

Amy, the team social worker, has been meeting with Nicholas and his parents and she shares a different perspective. Amy has noted that Nicholas isn’t really bothered by his weight in the way some other people are. He has his first girlfriend, is pretty popular, and doesn’t get teased very often by his peers (about his weight, at least). His parents are also ok with his body size. While they appreciate his health problems, they are really concerned that an (over)emphasis on his weight might hurt his self-esteem and cause him to lose focus on who he is as a whole person.

Further discussion among team members makes it clear that there is deep disagreement about how to proceed in this case. Should they put more pressure on Nicholas and/or his parents to agree to the camp? Is this over-stepping their role as health care providers? All agree that an ethics perspective would likely be helpful and give the clinical ethics consultation line a call.

62. CASE: Formula Feeding Resource Book

Andrew Godwin is a relatively new staff person working for Public Health. He is learning about the WHO Code of Marketing Breastmilk Substitutes and the importance of promoting breastfeeding as a norm in Nova Scotia, as part of the Healthy Eating Strategy.

He has received several phone calls from new parents asking him why the province’s formula feeding resource book is not online and requesting him to consider adding it to the electronic resources. What should Andrew do?

  • Identify the values that are relevant to this discussion and select the ones that you think should guide Andrew’s response. 
  • Would it be appropriate to post this booklet online? Why or why not?

Some Values and Ethics Issues to Consider

  • Duty to provide care
  • Honesty, trust and truth-telling
  • Respect for autonomy
  • Transparency
  • Community/ public health ethics
  • Compliance with policy
  • Patient-centred care

25. CASE: A Difference of Opinion?

Mary is a 90-year old woman who has been in hospital several weeks. She has a COPD exacerbation, increasing difficulty swallowing, and pneumonia. She has said repeatedly she is tired of being in hospital and tired of fighting to breathe. She doesn’t want a feeding tube or her IV but wants to be allowed to die comfortably.

Mary’s daughters who have been regular, frequent visitors, say she has always been a fighter and would never want to give up. They believe she is just discouraged and are requesting everything be done to keep her alive including a feeding tube, IV hydration, and mechanical ventilation if it becomes necessary.

The resident in charge of Mary’s care calls the ethics request line.

  • What are the ethics issues in this situation?
  • What underlying values are at stake?
  • Should Mary or her daughter’s have decision-making authority?
  • How would you respond to this call for ethics support?
  • Who should be involved in the discussion?

 

Some Values and Ethics Issues to Consider

  • Informed consent
  • Capacity
  • Substitute decision-making
  • Advance care planning and personal directives
  • Quality of life
  • Respect for human dignity
  • Respect for patient autonomy
  • Patient-family relationships
  • End-of-life decision-making

10. CASE: At a Crossroads…

Sandra Livingstone, age 45, was admitted to the hospital with diffuse ischemic encephalopathy – a very significant, global brain injury – secondary to sustaining a massive stroke at home. It is now ten months after her admission. Ms. Livingstone is on an acute internal medicine unit where she has been living since her discharge from the intensive care unit.

She is unable to communicate with others and appears to be in profound distress, spending much of her time screaming and obstructing the attempts of nurses to care for her. She is unable to eat and drink due to neurological damage to her swallowing mechanism. She has just managed to remove her J-tube for the fourth time despite being in arm restraints and having her hands padded on a twenty-four hour basis. Trials of various medications to target her intense agitation have been unsuccessful.

The consultant neurologist, Dr. Bailey, recently reassessed Ms. Livingstone. In his opinion, her neurological status is now stable and the prognosis for further neurological recovery is extremely low. He comments that “this is the way she will always be”.

Ms. Livingstone had not made a personal/ advance directive prior to her stroke. Her statutory decision-maker is her father, Mr. Livingstone, a person of strong religious faith. He believes that his daughter is “still in there” and that she will eventually recover sufficiently to allow him to take her home. He refuses to discuss the possibility of withdrawing life-sustaining treatment, i.e., her J-tube.

The clinical unit’s social worker, Mr. Roberts, has been exploring alternative residency options for Ms. Livingston. Given her current health status and long term, significant care requirements, Ms. Livingstone cannot be formally classified for placement in a continuing care facility. Her local rural hospital has declined to accept her for care through a transfer from the tertiary care centre.

A health lawyer from Legal Services and a clinical ethics consultant are asked to participate in a health care team conference to explore potential ways forward.

  • What issues should be discussed at this meeting?
  • Which of these issues are ethics issues?
  • What decisions need to be made?
  • How should the decision-making be prioritized?
  • What resource allocation and policy issues in this case have ethical implications?

Some Values and Ethics Issues to Consider

  • Substitute decision-makers
  • Capacity
  • Compliance with policy
  • Spirituality/ religious beliefs
  • Patient-family relationships
  • Respect for human dignity
  • Quality of life
  • Resource allocation

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