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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101. Case: Chatting About Hopes and Goals

You are a social worker who is part of a rehab team.  During lunch, the conversation turns to one of the patients that you and your team is working with. The patient was in a scooter accident and suffered multiple fractures. They are struggling to regain their ability to walk and can often be heard expressing their frustration. Some around the table are concerned that the patient is giving up and that they seem to have “no hope for the future” – despite the expectation that they should be able to walk again. One of your team members turns to you and says, “You seem to have a good rapport with this patient, why don’t you talk to them about this?”  This is not the first time you’ve received such a request, and you appreciate that your colleagues have recognized your skill at building rapport. But there is no extra time, or any other resources provided to you to acknowledge the contribution you are making.  How will you respond to this request?  And how might you raise this at the next team meeting?


You are 23 years old and you were in a collision while riding your scooter and are now in rehab recovering after multiple serious fractures. Rehab is a lot of effort and you aren’t experiencing the improvements you expected.  Your friends have stopped coming by to visit and you feel lonely and isolated in the hospital.  You know that the health care providers are trying their best, but you find it hard not to take your frustration out on them when they’re the only people you see most days. How will you respond the next time a team member encourages you to keep trying?


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 are some of the values that might be in tension for the social worker in thinking through the situation?
  • What types of support might make it easier for the social worker to take on the work of having difficult conversations?
  • How do health care providers build the skills that help difficult conversations go well?

References:

Canadian Physiotherapy Association. Ethics and professionalism toolkit. https://physiotherapy.ca/ethics-and-professionalism-toolkit

Forbes Coaches Council. 14 Ways To Approach Conflict And Difficult Conversations At Work https://www.forbes.com/sites/forbescoachescouncil/2017/07/17/14-ways-to-approach-conflict-and-difficult-conversations-at-work/#698346ac3cfd

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/

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?

96. 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?

95. 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?

94. Case: Mr. Rattan Wants to Stay

Mr. Rattan has been a resident at Ocean Wind, a retirement community offering a range of options for accommodation, for the last ten years since his partner died.  Currently he has a studio apartment in the assisted living wing, which provides assistance with ADLs.

Mr. Rattan has been diagnosed with dementia.  In the last few months his younger daughter, who typically visits on her way home from work, has become concerned that his current living situation doesn’t meet his needs and wants him to move into the locked dementia unit in a different wing of the building.  She has started to make arrangements for Mr. Rattan to move.

When his daughter talks with him about moving, Mr. Rattan seems amenable to this option.  But twice when staff have come to discuss moving with him he refuses, saying that he’s comfortable where he is and that he doesn’t want to spend the extra money.

Mr. Rattan’s elder daughter and son have both called Ocean Wind to reinforce that Mr. Rattan has told them he doesn’t want to move and that they want his wishes to be respected.  Mr. Rattan does not have an personal directive in place.

Staff have expressed some concerns about Mr. Rattan, indicating that he seems frequently to be confused and disoriented at the end of the day.  They are also considering requesting a capacity assessment, but there is disagreement about whether that is an appropriate next step.

The manager at Ocean Wind has contacted you as the chair of the ethics committee looking for support with this case.


 

Questions:

What will make this case clinically challenging?

What will make this case ethically challenging?

How might the ethics committee support Ocean Wind in addressing these challenges?

What would change (if anything) if Mr. Rattan had a personal directive identifying his son as the substitute decision maker?

93. Case: End of Life with Dementia

Mr. Shah lives in a continuing care facility. A nurse recently commented; “My patient, Mr. Shah, has an advance directive that he wrote last year and that requests medical assistance in dying when he is no longer able to recognize his wife. His dementia has worsened quickly and recently he’s asked who his wife is after she visits, although he’s happy with her when she’s here. Are we obligated to do anything about his request for medically assisted death?”

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

91. Case: What is Best for Angela?

Angela Flores is a six year old with some minor developmental delays caused by traumatic birth.  She has recently been diagnosed with a brain tumor and her prognosis is poor.  The health care team is trying to determine goals of care and a develop treatment plan.

Angela lives with and is cared for by her paternal grandparents, Jean and Rod, but there is no formal custody arrangement in place.  Angela’s parents have separated and her mother, Tina, has moved to Ontario to seek work on the understanding that she will send for Angela when she finds a job and an apartment.  Tina is in regular contact with the health care team by phone.  Angela’s father, Aaron, is sporadically involved in her life, coming and going unpredictably.

Angela’s grandparents are advocating for comfort measures only while Tina wants to pursue active, aggressive treatment and is asking whether there are any research studies that Angela could be enrolled in.  Aaron is currently in town and he wants to involve a homeopath in Angela’s care.

Jean and Rod appear to be frustrated with both Tina and Aaron and feel that they are best placed to make decisions for Angela.  Meanwhile, both Tina and Aaron emphasize that they are Angela’s parents and expect to be involved in decision making.  They get very upset when they perceive that decisions have been made without them.  There have been a couple of family meetings involving all four adults, and every time someone has stormed out of the meeting.

Jean and Rod are worried that Angela will be significantly distressed by the whole process of getting treatment as it will significantly disrupt her routine and there is another family member who recently died of cancer and Jean and Rod say that his treatment was painful, ineffective, and resulted in a “bad” death.  Jean and Rod are also very unwilling to involve Angela in any discussions about her diagnosis, prognosis, and treatment, saying that “there’s no way she can understand and it will just upset her.”

The health care team is also divided regarding what they believe are appropriate goals of care for Angela and some members who have worked with Angela for a long time are experiencing significant moral distress at the prospect of moving to palliative care.    They also aren’t sure how to approach conversations with the family given the level of conflict present, and are concerned that the conflict between the adults is interfering with making appropriate decisions for Angela.

How might you approach this situation?

90. Case: End the Transfusions?

Joyce Skinner is a 38 year old woman with non-curative leukemia. She is the single mother of two children, ages 11 and 8, and her ex-husband is ‘out of the (parental) picture’. Since her leukemia diagnosis, Joyce has approached her progressive hematological cancer in an assertive manner, seeing it as her responsibility to fight to stay alive and look after her children for as long as possible. Over the past few years, her attending hemato-oncologist, Dr. Jones, has arranged for her to be a research participant in a variety of experimental chemotherapy trials, which have extended her life beyond what was initially anticipated. However, about 6 months ago, Joyce’s leukemia moved into a treatment-resistant phase and her medical regime is currently palliative in nature and intent. Joyce is now residing in a hematology clinical unit of a tertiary care hospital where she is followed regularly by a palliative care consultant, Dr. Miller. In the last 3 weeks, the frequency of blood transfusions required to keep Joyce’s hemoglobin at a low functional level has progressively increased such that she is now receiving transfusions every second day. Joyce is not eligible for transfer to the hospital’s Palliative Care Unit while blood transfusions are a component of her care plan. She is very weak and is confined to her hospital bed. Her children visit her regularly with their aunt, Cathy, who has assumed parental responsibility for them. They have missed a considerable amount of school time in the last few months.

Despite the honest information provided by Dr. Jones, Joyce is in some denial about her grim prognosis and strongly believes that she can continue to ‘beat the odds’. She remains reasonably clear-headed and is capable of making health care and treatment decisions on her own. She insists that Dr. Jones continue the blood transfusions indefinitely. Her sister and Drs. Jones and Miller are of the shared opinion that the transfusions should be discontinued and that Joyce should be transferred to the Palliative Care Unit.

Dr. Jones, who sits on the provincial blood management committee, is aware that there has been an exceptional demand on existing provincial blood resources in the last few weeks due to a number of major highway accidents. The hospital is chronically under-resourced. There are typically one or more patients waiting in the emergency department for admission to the hematology clinical unit.

Questions for Collective Consideration

  1. What do you think is important to Joyce (in terms of her personal values)? What do you suspect about her personality structure?

 

  1. On what basis, if any, could Joyce claim a right to continue receiving blood transfusions? What other ethics principles and values are at play in these circumstances?

 

  1. What weight in the decision making should be given to the clinical judgments of Drs. Jones and Miller?

 

  1. Should Cathy (as an engaged family member) participate and have some authority in the decision making? Would the nature of this authority change if Joyce loses capacity?

 

  1. Is ‘bedside rationing’ of limited health resources an appropriate form of health resource allocation?

 

  1. With their mandates to manage limited health resources prudently, should the Nova Scotia Health Authority and/or the provincial Department of Health & Wellness have a role(s) in such end-of-life decision making?

 

  1. Under what circumstances, if any, would it be ethical to deny Joyce’s request for further blood transfusions?