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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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?”

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?

85. Case: Adam’s Story

Adam Snowdon, a 16 year-old Sydney boy, was diagnosed with ALS (Amyotrophic Lateral Sclerosis) 18 months ago.  The disease has progressed rapidly over the past three months and over this period Adam has quickly begun losing the ability to use his right arm to the point now where it is no longer effectively functional.  He is also beginning to have difficulty standing and walking and is showing early signs of respiratory, swallowing and speech problems.  His doctors speculate that Adam will die within a year and that in the months prior to that he will likely become “locked in” and unable to communicate at all.

Adam has always been a rambunctious boy.  He has had numerous behavioral issues throughout his childhood, proving to be quite a handful for his parents.  He has run away from home several times, has been suspended various times and expelled from two schools. Adam has also been detained by the police on four occasions for possession of alcohol and marijuana.

Adam is currently living at home in Sydney with his mother Nancy Snowdon and older brother David who just turned 17.  Nancy works part time as a school librarian.  She has full-time custody of her two sons.  Nancy has been suffering from clinical depression for several months now.  She has been under emotional strain since Adam became ill.  She is currently taking antidepressant medication and is receiving counseling from a chartered psychologist.  Through this treatment appears to be helping Nancy, she is still struggling to cope.  On a few occasions she has missed appointments with Adam’s doctor, simply feeling unable to face the situation on her “bad days”.  On those occasions Adam missed his appointments altogether as he shows no initiative in attending his medical appointments on his own.

Adam’s health care providers have not been able to establish a trusting relationship with him.  They find it generally difficult to engage him in conversation, and he is especially uncomfortable discussing the ALS.  He refuses to discuss the details of how his disease will progress or his preferences regarding options such as ventilators etc.  He has, however, stated emphatically that he has no intention of allowing them to “put him in the hospital do die”.

Adam’s father, Ted Snowdon, is an engineer in Alberta.  He and Nancy divorced relatively amicably when Adam and David were nine and ten respectively.  Mr. Snowdon has not played much of a role in the lives of both of his sons after the divorce but he visits every summer and they all go camping.  He has remarried to Clarice Snowdon who has shown little interest in the boys.  Since Adam’s diagnosis, Mr. Snowdon has been flying out to Sydney regularly to be involved with decisions around organizing care for Adam. Mr. Snowdon feels strongly that decisions about Adam’s future care need to be made immediately.

Dr. Kerrigan is Adam’s family physician.  She is concerned that Adam’s condition is getting worse very rapidly and is anxious about the decisions that will have to be made about Adam’s care.  In particular, Dr. Kerrigan is worried about the relationships within the family.  She knows that Mr. Snowdon feels strongly that his son should be hospitalized and eventually ventilated.  He has stated that Adam is “too young” to know what he wants and is worried that Nancy is not able to handle keeping Adam at home, even with home care support.  Dr. Kerrigan is concerned that Mr. Snowdon will dominate the decision-making process at the critical time and that Adam’s and his mother’s wishes may be overridden or altogether neglected.  Beyond her concerns about the family dynamics, she is uncertain as to Adam’s decision-making capacity – and Mrs. Snowdon’s for that matter – and is also unclear on the more basic question of who ought to be making decisions about Adam’s care.

Since Adam became ill he has been seeing a neurologist at the local hospital, Dr. Watson, and Dr. Kerrigan are in touch frequently regarding Adam’s care and have discussed Dr. Kerrigan’s concerns around the family dynamics and the decision making that will need to occur in providing end of life care for Adam.  Dr. Watson has requested a consult from the hospital ethics committee.  Mr. Snowdon and his wife have flown in from Calgary just for this meeting.  Adam was asked to participate in the meeting but he flatly refused, saying he wanted to spend time with some of his friends instead.

Participants’ Roles:

Ethics consultant #1 (facilitator)

Ethics consultant #2 (ethics facilitator)

Ethics consultant #3 (recorder)


Nancy Snowdon (Adam’s mother):  Very concerned about her son’s welfare.  Feeling overwhelmed, isn’t sure what to do.

Mr. Ted Snowdon (Adam’s father):  Skeptical of Adam’s decision making capacity and can’t understand why Adam is acting the way he is.

David Snowdon (Adam’s 17 year old brother):  David is scared, angry with both parents, worried about Adam, and worried about his own life. Most of all, he wants peace for Adam.

Dr. Watson (neurologist):  wary of the complex relational issues at stake, as well as the challenges of making decisions for young ALS patients like Adam.  Wants to make decisions as soon as possible before Adam is no longer able to express his own views.  Feels in over his/her head, wants the committee to get this sorted out as much as possible.  Dr. Watson has been developing an interest in bioethics and is considering becoming a member of the ethics committee.

Dr. Kerrigan (family physician):  Concerned about the toll this is taking on Nancy, Adam and David.  Worried that Mr. Snowdon is driving discussions around care.

Jamie Lee (patient services coordinator):  Has been taking a bioethics course and is eager to apply her/his newly developed skills.

67. Case: What is Angela’s Choice?

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 he 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?

66. Case: Blood 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.

 

 

  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?

 

 

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

37. CASE: A Question of Resources

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 Dr. Jones and Dr. 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.

  • What do you think is important to Joyce (in terms of her personal values)?
  • On what basis could Joyce claim a right to continue receiving blood transfusions?
  • What ethics principles and values are at play in these circumstances?
  • What weight in the decision-making should be given to the clinical judgments of Dr. Jones and Dr. Miller?
  • Should Cathy (as an engaged family member) participate and have some authority in the decision-making? Would this change if Joyce loses capacity and Cathy becomes her sister’s substitute decision-maker?
  • Is ‘bedside rationing’ of limited health resources an appropriate form of health resource allocation?
  • With their mandates to manage limited health resources prudently, should the District Health Authority and/or the provincial Department of Health & Wellness have a role in such end-of-life decision-making?
  • Under what circumstances would it be ethical to deny Joyce’s request for further blood transfusions?

 

Some Values and Ethics Issues to Consider

  • Resource allocation
  • Distributive justice
  • Substitute decision-making
  • Patient-centered care
  • Respect for patient autonomy
  • Respect for professional integrity
  • Compliance with organizational policy
  • Quality of life
  • End of life decision-making

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