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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47. CASE: Collegial Responsibilities

You are a pediatric critical care specialist working in the ICU taking care of a newborn infant who suffered a severe, prolonged reduction in blood flow to his brain at the time of birth. The consulting neurologist has indicated that the infant’s prognosis for functional neurological recovery is very poor in the unlikely event that he survives the next few days.  You and the neurologist have spoken at length with the parents about the grim prognosis. They have decided that withdrawal of intensive care modalities and the initiation of optimal palliative care are consistent with their values. They have requested a day to hold their baby and to allow extended family to come and be with them prior to stopping the mechanical ventilation.
You have now gone home after handing the case over to a physician colleague who is on call for the unit that night, explaining that the family will notify staff when they are ready to withdraw life support.

You receive an agitated call from the ICU charge nurse at 2 am, as the family has requested life support to be discontinued but she is refusing to write an order for this, saying that she knows nothing about it. The parents are very distressed about this turn of events.

[Modified version of a case authored by Alixe Howlett]

  • What are the boundary issues, if any, in this case?         
  • Are there issues with communication between team members?
  • How should this be addressed?         
  • How should you deal with this situation when receiving the call at 2 am?         
  • Who should be involved in deciding next steps?

Some Values and Ethics Issues to Consider

  • Compliance with policies and procedures
  • Respect for professional integrity
  • Patient-provider relationships
  • Trust
  • Respect for patient autonomy
  • Respect for dignity
  • Patient-family relationships
  • End of life decision-making
  • Patient-centered care
  • Professional boundaries

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