102. Case: A Question from Family About Outcomes

You are caring for a patient following a severe stroke. The attending physician has been very clear with the family that it is unlikely that the patient will survive and that, if he does, it will be with very significant impairments. Still, the family takes any movement or facial change as an indication that he is improving. They are praying for his full recovery and today, at the end of your shift, the eldest child asks you when you think her father will be ready to go home.  How will you respond to the question?


Your family has strong faith convictions and a firm belief that “where there is breath, there is hope”.  Your father had a stroke unexpectedly and you found him slumped over when you came home from class.  You feel guilty because you stopped on the way home to get coffee with a friend.  The doctor said that your father’s “prognosis is poor”, but you’ve heard lots of stories about doctors being wrong. You also feel strongly that if you believe that your father will recover this will help to bring it about and that the converse is true, that if you allow yourself to think or talk about your father’s death it could cause it to happen.  So, you ask the doctor when they think your father will be able to come home. How would you respond if the physician says, “I don’t think your father will be able to go home…”?


Discussion Questions:

  • How did your response to the case shift when you read about it from a different perspective?
  • What do you see as the most important values for each person involved in the conversation?
  • What might be some of the undercurrents that influence the direction the conversation takes?
  • What makes this a difficult conversation for each participant?
  • Who else might be involved in having subsequent conversations with the family about care decisions?

References:

Barley, S. 2010. Having the difficult conversations about the end of life. The BMJ 2010; 341, published 16 September 2016 https://www.bmj.com/content/341/bmj.c4862

Lippe, M. 2018. Drawing the line between hope and false expectations. Blogpost, Reflections on Nursing Leadership. Published online 09/19/2018 https://www.reflectionsonnursingleadership.org/features/more-features/Drawing-the-line-between-hope-and-false-expectations

NSHA Library Services: Conversations about serious illness: https://library.nshealth.ca/SeriousIllness/GOC

Welsh, A. 2016. At end of life, doctors and families often differ in expectations. CBC news, published May 17, 2016. https://www.cbsnews.com/news/better-doctor-family-communication-needed-at-end-of-life-study/

Woelk, C.J. 2008. Management of Hope. Can Fam Physician; 2008 Sep. 54(9): 1243-1245 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2553443/

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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?

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?

44. CASE: Whose Business Is It?

Brent Wathorn, 78, has been living at Halfway Lake Manor for about 6 years. His main complaint has been that he is lonely and has had difficulty connecting with the other residents. This has been a source of distress for staff at times, as they would like him to feel more ‘at home.’

Norma Carkner, 75, moved to the Manor about a month ago. She has limited cognitive abilities as the result of a stroke, but is still able to express herself reasonably well and make some choices if given enough time.

Staff members have noticed that Brent and Norma have been spending much time together and have found them kissing on occasion. While there is no evidence of a sexual relationship beyond this, some of the staff is quite concerned about the possibility.

Given his loneliness, they wonder if Brent may be putting pressure on Norma. Other staff point out how happy both Brent and Norma seem together. Much of the discussion has focused on whether and to what extent they should intervene or say something to family members.

  • What values/assumptions might be at play here for staff members?
  • What ethics concerns are you considering in this scenario?
  • Should the staff discourage this relationship?
  • Should the staff notify Brent and/or Norma’s family about the relationship?


Some Values and Ethics Issues to Consider

  • Honesty, trust and truth-telling
  • Compliance with policies and procedures
  • Respect for privacy and confidentiality
  • Respect for patient autonomy
  • Respect for dignity
  • Quality of life

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

8. CASE: Who Should Decide?

This case concerns a 35-year-old developmentally delayed female patient (functional age about 5 years old); her mother is her legal guardian. The patient tested positive for a BRCA gene mutation. Her mother is concerned that her daughter may develop ovarian cancer and wants her to have preventive surgery.

Her physician does not believe this is in the patient’s best interests for the following reasons:

  1. There is only a 15-30% chance she may develop the disease
  2. The procedure does not offer a guarantee against developing cancer
  3. The patient has high risk co-morbid conditions including pulmonary stenosis
  4. The patient is highly averse to medical procedures (becomes extremely anxious and agitated).

Her physician is questioning the mother’s decision and if the surgery should even be offered. He feels surveillance/ screening for the purposes of early detection and treatment is the best option.

  • How do you approach this case?
  • What ethics issues must be considered?
  • Where do the value tensions lie in this situation?
  • Should the mother’s request for surgery be granted despite the physician’s expert opinion?
  • Should the daughter’s aversion to medical procedures be considered?
  • Who should make this decision?


Some Values and Ethics Issues to Consider

  • Capacity
  • Respect for patient autonomy
  • Respect for professional integrity
  • Substitute decision-makers
  • Resource allocation
  • Quality of life
  • Risk

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