101. 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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98. Case: Talking About an Adverse Event

You are a respiratory therapist working in a large hospital seeing a range of patients, but primarily working with the teams in the Emergency Department and ICU.  With one complex patient in ICU there was a miscommunication that resulted in improper settings being used for ventilation and this resulted in the patient having a longer-than-expected ICU stay.  You feel responsible for this and as part of the adverse event disclosure process you are going to talk to the family about it.  How will you prepare for the conversation?


Your loved one, who has dementia and COPD, is in ICU and you know that there was a mistake with their ventilator because you overheard some of the nurses talking about it.  You feel that the ICU environment is making your loved one’s dementia worse, and you’re angry that someone’s carelessness has resulted in harm to your loved one.  The nurses let you know that the respiratory therapist wants to talk to you about the incident.  You’re willing to have the conversation, but you’re tired from looking after your loved one and frustrated by your whole experience in the hospital.  What is most on your mind when you go into this conversation?


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?
  • Why is it important to have this conversation from each person’s perspective?
  • Which values and principles are reflected in the commitment to ensuring that the conversation happens?
  • What can be done to help ensure that this is a “good” difficult conversation?

References:

Alberta Health Services. Disclosure Done Well – Early Disclosure: Unsure If Care Is Reasonable. Published March 16, 2018. https://www.youtube.com/watch?v=i2uEHmElX5M

Bonney, W. (2014). Medical errors: moral and ethical considerations. Journal of Hospital Administration. 3(2): 80-88. https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&ved=2ahUKEwjjwa2Z7PzgAhUV854KHa5sCPkQFjABegQIBBAC&url=http%3A%2F%2Fwww.sciedu.ca%2Fjournal%2Findex.php%2Fjha%2Farticle%2Fdownload%2F3475%2F2226&usg=AOvVaw2VCJ0K19IQYyW329XHm_C_

Brené Brown on Blame: https://www.youtube.com/watch?v=RZWf2_2L2v8

Canadian Patient Safety Institute. (2011). Canadian Disclosure Guidelines: being open with patients and families. CPSI. https://www.patientsafetyinstitute.ca/en/toolsResources/disclosure/Documents/CPSI%20Canadian%20Disclosure%20Guidelines.pdf

Canadian Medical Protective Association. Disclosure – Maintaining Trust. https://www.cmpa-acpm.ca/serve/docs/ela/goodpracticesguide/pages/adverse_events/Disclosure/disclosure-e.html

Canadian Medical Protective Association. Disclosing Harm from Health Care Delivery. Version 3, 2017. https://www.cmpa-acpm.ca/static-assets/pdf/advice-and-publications/handbooks/com_15_disclosure_handbook-e.pdf

Nova Scotia Health Authorities. 2017. Disclosure of Patient Safety Incidents. Patients First. http://www.nshealth.ca/sites/nshealth.ca/files/patientinformation/1448.pdf

95. Case: MAiD and Depressive Disorder

An assumption for the purposes of the case – these circumstances are happening in the perhaps not-too-distant future after the Supreme Court of Canada has struck down Bill C-14’s ‘reasonably foreseeable death’ criterion.

Sally York is a 54 year-old, single, unemployed woman who has a longstanding history of treatment-resistant major depressive disorder. Her mother experienced recurrent major depressive episodes throughout her adulthood, and one of her paternal uncles was diagnosed with bipolar I disorder. Sally experienced her first major depressive episode at the age of 11½ while she was transitioning through puberty. In the last 15 years, she has experienced multiple, persistent, disabling depressive symptoms including: significant depressive dysphoria, obsessive negative rumination, intense social anxiety, heightened irritability, lack of interest in normal activities of daily living and her former hobbies, impaired concentration and focus, reduced appetite and with associated difficulty maintaining a healthy weight, prolonged, early morning waking, and suicidal ideation. Sally has been followed by numerous psychiatrists and clinical psychologists over her lifetime, and she has been trialed on a wide variety of treatment modalities including three generations of antidepressant medications and multiple augmentation agents (atypical antipsychotics, anticonvulsant medications, mood stabilizers and T3 thyroid medication). She has been actively engaged in courses of many different types of psychotherapy including supportive, insight-oriented, cognitive-behavioural, interpersonal and mindfulness-based types. She has tried and failed transcranial magnetic stimulation treatment. Although Sally has been offered trials of ECT, she has never wished to pursue this treatment intervention due to her mother’s reports of bad experiences with it in the years before her death. She was involuntarily hospitalized on four occasions in the past because of temporary formed suicidal intent.

Sally’s other active health conditions include irritable bowel syndrome, chronic mixed migraine-tension headaches, and chronic, significant shoulder girdle myofascial pain. Her chronic pain remains active despite trials of physiotherapy, massage therapy, exercise therapy, myofascial trigger-point injections, regular opioid medication, and a neuropathic pain modulator. A former attending psychiatrist believed that there was a component of somatic symptom disorder in Sally’s chronic pain presentation.

Sally’s quality of life has greatly deteriorated over the past four years due to her combined experience of persistent depression and chronic pain, although the latter has been less disabling than the former. This symptomatic worsening correlated with her financially-based decision (after leaving work for medical reasons) to move to a remote area of the Valley that is close to where her mother grew up. Without the direct support of a cognitive-behavioural therapist, Sally stopped doing her cognitive-behavioural exercises and slipped back into her former ways of looking at the world through the typical cognitive-distortions of depressed individuals, e.g., all-or-nothing thinking, mindreading, minimization of positives, etc. She spends most of her days in bed and struggles to get out of her small, government-subsidized apartment once a week to visit an elderly aunt. A friendly neighbour shops for her at the local supermarket once a week. Her medications are delivered to her by taxi through an arrangement with a pharmacy located in a nearby village. Although her medications are delivered in blister packs, she forgets to take them sometimes.

Sally has heard that MAiD is now legal in Canada but she doesn’t know much about it. She asks a cousin who lives in the nearest town, and who worked as a palliative care nurse in Halifax prior to his recent retirement, to come-by for coffee. Sally uses her enhanced knowledge from the conversation with her cousin to prepare herself for a visit to her family physician.


 

Questions

  • What is your gut reaction on a ‘first read’ of these circumstances?
  • Can legitimate distinctions be made between the experience of profound suffering arising from physical health disorders and the experience of profound suffering arising from mental health disorders?
  • How could the psychiatric symptomatology and related lived-experiences of a person with a significant mental health disorder affect her/his capacity to make a decision regarding a personal request for MAiD.
  • Are there particular mental health disorders that would preclude the making of an informed choice to request MAiD?
  • What is currently known about the capacity of individuals who suffer from treatment-resistant major depressive disorder as this pertains to their making of meaningful decisions about their health care and treatment?

94. Case: Conventional vs Chinese Medicine

Lisa Chun is a 12 year old recently diagnosed with Crohn’s disease.  She arrived as a refugee from China five years ago with her parents and her younger brother.  She has integrated well into the community and is successful in school.  She often acts as an interpreter for her parents.

Lisa is prescribed corticosteroids and biologic therapies, but she states that she would prefer to pursue treatment with traditional Chinese medicine (TCM), consisting of acupuncture and herbs.  Her parents indicate that they support her in this choice. Lisa’s parents have previously expressed discomfort about the diagnostic tests that Lisa underwent and Lisa and her family have missed a few appointments, which have had to be rescheduled.

The team is concerned about the long-term effects of not treating with conventional therapies, given that Lisa is very small for her age and is not displaying signs of puberty.

Some members of the team who have worked closely with Lisa feel that she has capacity to make this decision.  They believe that her reasoning, based on belief that TCM treatment is better able to respond to the way that Crohn’s has manifested in her body, is appropriate.  Other members of the team feel very uncomfortable with allowing her to refuse conventional therapy altogether, although they say they are willing to explore integrating TCM with conventional approaches.

Finally, certain team members are concerned that they will “lose” Lisa and her family and worry that requiring a capacity assessment for Lisa (or her parents) will irrevocably damage the relationship.

Concerns have also been raised about whether there’s an obligation to contact Child Welfare if Lisa and her parents continue to refuse conventional therapy.

The team has requested support from the ethics committee to help them work out how to approach this situation.


Questions:

What will make this case clinically challenging?

What will make this case ethically challenging?

How might the ethics committee support the team in addressing these challenges?

What would change (if anything) if Lisa and her parents came from Estonia instead of China?

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?

60. CASE: Health Care Providers Under Quarantine

My story starts in early April, during a routine day shift in our minor care area. A previously well middle-aged man, recently returned from Hong Kong, presented with fever. Because SARS was already recognized and we’d gone through the recent experience of a crash intubation with our first case at Vancouver General, this patient was isolated at the triage area and we gowned and masked to examine him. Apart from a temperature of 37.8°C, his vital signs were normal and he looked well. He had no other symptoms, and his physical examination, CBC, urinalysis, and chest x-ray were all normal. Although the patient did not fulfill the case definition of SARS then in existence, I kept him in isolation just in case. When I went in to give him discharge instructions, I did not wear a mask and stood just inside the doorway, about two meters from him. Almost predictably, he returned with the full SARS syndrome just over 24 hours later. And wouldn’t you know it, by then, the case definition of SARS had changed!

I briefly wondered if I could pretend I was not in his room unmasked, but the thought of potentially disseminating a lethal virus persuaded me to do my civic duty and tell my boss. Two hours later Public Health phoned to inform me I was officially quarantined. Needless to say, my husband, also a physician, was incredulous and my kids were terrified. I thought it was kind of funny for the first day, like someone was playing a bad joke. Then the reality began to hit home, and I can tell you the reality was difficult to live with. This is what Public Health told me.

  • I must stay inside my house (preferably within my bedroom) 24 hours a day
  • I must not touch anyone in my family
  • I must wear an N95 mask if anyone is in the same room as me
  • I must not prepare uncooked food for my family
  • I must not sleep with my husband
  • I must use a separate bathroom
  • I must not touch anything in the house that the kids might later touch
  • I must not use the family computer or the main phone
  • I cannot have outside visitors
  • I cannot shop for groceries
  • I cannot go for a walk

The quarantine requirements were not voluntary, but were enforced by Public Health, who contacted me daily to gauge my cooperation. If I did not comply, it was clear that I would be legally compelled to do so. All this took place under the shadow of potentially transmitting SARS to my family, the people I love more than anything in the world. My nine days of quarantine were a blur of extreme boredom, some highly emotional episodes, and a re-evaluation of what I do for a living. One of our daughters moved out for the duration. Another celebrated her 16th birthday without a hug, cake or present from her housebound mother. And my son told me daily how much he wanted a snuggle. I felt guilty that my colleagues, all of whom are already overworked, had to pick up extra shifts to cover me during my enforced absence. As if all this were not enough, it slowly dawned on me that I wasn’t earning any income, and would have to put in extra shifts after my quarantine was over. I decided I never wanted to see another N95 mask again…

What did I learn from my experience? First, it is very isolating and lonely to be isolated. I hugely appreciated the calls and emails I received from my colleagues while I was off. It helped enormously to know they were thinking of me, and didn’t think this was my fault. Second, I think all emergency physicians should consider the financial implications of a sudden enforced quarantine. None of us have disability insurance that would commence quickly enough. To be under quarantine is difficult enough without the added burden of a financial penalty. Although I suffered an occupational exposure, I was not covered by Workers’ Compensation. I believe we need to negotiate with our hospitals and governments to put financial packages in place. Many hospitals are starting to compensate self-employed health care workers for income missed during quarantine. I would go further and suggest a per diem rate for days confined due to occupational exposures. Although no one can compensate me enough for nine lost days of my life, a token payment certainly wouldn’t hurt. Finally, as emergency physicians we do a far more difficult and noble job than I had ever realized. The consequences of what we do to care for our patients and protect the public are risks that put ourselves and our families in potential danger. This is something we never think about or acknowledge, but maybe we should. And maybe we should celebrate ourselves more than we do. I have huge admiration for my emergency medicine colleagues who had far worse exposures than I did in the early phase of the SARS crisis.

  • What values are involved here and for whom?
  • What ethical considerations have to be balanced in such quarantine situations? How is the most appropriate balance achieved?
  • How would you respond to this physician’s concerns? Do you feel there is any legitimacy to her complaints?

Some Values and Ethics Issues to Consider

  • Duty to provide a safe work environment
  • Duty to provide care
  • Respect for individual liberty
  • Community/ public health ethics
  • Consent
  • Disclosure of adverse events
  • Health care provider relationships
  • Risk
  • Patient safety
  • Compliance with policy
  • Disclosure of adverse events
  • Non-maleficence
  • Privacy and confidentiality

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

39. CASE: Setting Priorities

In the wake of a mass casualty event, a hurricane that devastated much of Nova Scotia, blood resources within the province are extremely scarce. There is not enough blood to meet all the legitimate blood-related health needs of Nova Scotians, and the blood supply is not expected to increase significantly in the next two months. Tough choices have to be made. The following three patients have been admitted to a rural general hospital and are in need of blood transfusion:

Jim is a relatively healthy, 87-year old man who requires a colectomy for a benign hemorrhagic bowel disorder. He is scheduled for surgery along with many urgent others, and it is anticipated that he will not rise to the top of the waiting list for at least two months. To bridge the gap between now and then, he requires regular (e.g., q 3 weeks) transfusions. Jim lives independently in the community and is very engaged with two of his children and six grandchildren who live in the local area.

Sue is a 42-year old woman admitted to the palliative care service whose progressive leukemia is causing her to be significantly fatigued and short of breath. The attending hematologist estimates that regular blood transfusions would allow her to remain functional at home for about another eight months. She has three children ages 4, 7 and 11. The family is dependent on the single income of her husband who is a plumber.

Kevin is a six-year old boy with a poor prognosis cancer diagnosis. His present quality of life is poor – he is confined to bed and spends most of his time asleep. He is not experiencing any pain. Kevin is able to communicate with his parents for an hour or two a day. His medical oncologist estimates that regular blood transfusions would extend his life for about another five months. It is anticipated that Kevin’s quality of life will remain essentially unchanged during this period of time. Kevin’s parents are demanding that their son receive these blood transfusions.

Dr. Fairchance, as the hematologist on-call, is asked to make a decision about which of these three patients should be started on blood transfusions. She recognizes that there is currently enough available blood to meet the needs of only one of these patients. Dr. Fairchance is also asked to prioritize the other two patients in the unlikely event that more blood becomes available in the next week or two. As the medical resident on-call, you have been requested to assess Jim, Sue and Kevin and to report back to Dr. Fairchance regarding their present health status. She would also like you to assist her with the rationing decision.

  • What factors should be considered in micro-allocation decisions? How do you prioritize them?
  • What principles and values would inform your decision-making?
  • What decision-making process would you use to work through this decision?
  • Is there a better way than ‘bedside rationing’ to allocate scarce health resources?
  • What are the implications – organizational or otherwise – of your decision?

 

Some Values and Ethics Issues to Consider

  • Resource allocation
  • Distributive justice
  • Priority setting

29. CASE: Complicated Caring

Mr. Sundown is a 78-year old African Nova Scotian who is a patient in an internal medicine clinical unit at the Halifax Infirmary. He has a variety of serious medical conditions including diabetes, coronary artery disease, and advanced COPD. He is experiencing progressive respiratory failure on the basis of a difficult-to-treat pneumonia. Mr. Sundown has Alzheimer’s disease and, when out of hospital, lives at home in Dartmouth, where he is totally dependent on his family and visiting VON nurses.

During this admission, the clinical unit nurses and attending physician are having a difficult time communicating with him. On some occasions, Mr. Sundown appears to recognize his wife and children and speaks a few seemingly appropriate words.

Mrs. Sundown and her children make regular visits to the hospital. Mrs. Sundown is a physically healthy person. She is shy and tends to defer in her decision-making to her eldest son, Peter, who has power-of-attorney for both his parents. He lives in Toronto and usually visits home twice yearly. There are two other siblings, Don and Paulette, who live in Halifax.

Mrs. Sundown and Peter are members of a fundamentalist faith. Mr. Sundown is a life-long agnostic, while Don and Paulette attend protestant churches. They all get along pretty well as long as no one brings up religion.

At a health care team conference, there is discussion of the possibility of withholding further potential treatment (including mechanical ventilation) for Mr. Patterson whose health condition is rapidly deteriorating. The attending physician and most other members of the treatment team believe that this is in Mr. Sundown’s best interests, given his apparent low quality of life and what they perceive to be his potential for prolonged suffering.

On a review of Mr. Sundown’s health record, the charge nurse notices that Peter Sundown is listed as the next-of-kin on the admission notes, and that an advance directive has not been made. Family members report to the attending medical resident that Mr. Sundown has not clearly indicated his wishes/ preferences for medical care and treatment at the end-of-life.

The attending physician is aware that the relevant intensive care unit is full and that there are five other very ill patients waiting for urgent admission. He calls for an ethics consult.

  • What issues should be discussed during this meeting?
  • Who should be present at this meeting?
  • What weight should resource allocation have in this case?

Some Values and Ethics Issues to Consider

  • Advance care planning and personal directives
  • Substitute decision-making
  • Spirituality and religious beliefs
  • Resource allocation
  • Respect for patient autonomy
  • Respect for human dignity
  • Patient-family relationships
  • Quality of life
  • Capacity
  • End-of-life decision-making

28. CASE: Mind the Gap!

Mrs. Hardriver is admitted through ER to a general surgery unit for emergency surgical management of an acute small bowel obstruction secondary to her advanced colorectal cancer. After surgery, Palliative Care is consulted and they agree to admit Mrs. Hardriver to their service. As there is no palliative care bed available at the time of referral, the surgical unit agrees to keep her until one is freed up. Three days post-op, Mrs. Hardriver develops significant delirium and lapses into a semi-conscious state, which is thought to be secondary to her known, multiple brain metastases.

Mr. Hardriver, his wife’s legitimate substitute decision-maker, informs members of her attending medical team that she has been ‘a fighter’ all her life and that, at the time of admission, she told him that she wished to have everything possible done to save her life, including admission to an intensive care unit after surgery. He produces a valid, up-to-date advance directive, which contains instructions that are consistent with Mr. Hardriver’s account of his wife’s previously expressed wishes. A health record review reveals that Mrs. Hardriver had always rejected the option of ‘Do Not Resuscitate’ on previous hospital admissions for management of various complications of her colorectal cancer.

Despite Mrs. Hardriver’s expressed wishes, Mr. Hardriver believes that a palliative care (only) approach is in his wife’s best interests at this time. The consensus view among the medical team and other attending health care providers is supportive of his position. However, Mr. and Mrs. Hardriver’s daughter Sara believes her mother’s expressed wishes should be respected and calls the ethics committee.

  • Given this (near) consensus among the decision-makers, is it reasonable to seek an ethics consultation? Why or why not?
  • When should a substitute decision-maker be able to override a personal directive?
  • What is the ethics committee’s role in assisting Sara in this difficult situation?

Some Values and Ethics Issues to Consider

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