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?

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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?

 

 

63. CASE: Breastfeeding Concerns

Natasha is 15 years old and you, an RN, are meeting her for the first time at a prenatal visit. Her boyfriend, Josh, is 17. Natasha is planning on feeding her baby breast milk substitute as she thinks it will be easier. She has heard that it is harder to lose “baby weight” while breastfeeding, and is worried about fitting into her bikini this summer. She also tells you that she has heard that breastfeeding makes breasts saggy and is worried that Josh won’t be attracted to her anymore. Her mother, on the other hand, is pressuring her to breastfeed.

  • What values are at play here and for whom?
  • Are there any ethics issues in this situation?
  • How would you continue the discussion with Natasha?

Some Values and Ethics Issues to Consider

  • Respect for autonomy
  • Patient-family relationships
  • Patient-centred care
  • Responsibility for health
  • Stigma and blame

62. CASE: Formula Feeding Resource Book

Andrew Godwin is a relatively new staff person working for Public Health. He is learning about the WHO Code of Marketing Breastmilk Substitutes and the importance of promoting breastfeeding as a norm in Nova Scotia, as part of the Healthy Eating Strategy.

He has received several phone calls from new parents asking him why the province’s formula feeding resource book is not online and requesting him to consider adding it to the electronic resources. What should Andrew do?

  • Identify the values that are relevant to this discussion and select the ones that you think should guide Andrew’s response. 
  • Would it be appropriate to post this booklet online? Why or why not?

Some Values and Ethics Issues to Consider

  • Duty to provide care
  • Honesty, trust and truth-telling
  • Respect for autonomy
  • Transparency
  • Community/ public health ethics
  • Compliance with policy
  • Patient-centred care

58. CASE: Harm Reduction

Medical Officers of Health from British Colombia, Nova Scotia, and Saskatchewan have written to advocate for emphasizing harm reduction in the approach to cannabis and other illegal drugs (including possible legalization).

“Evidence-based drug treatment programs are cost effective, and significant benefits should be derived, at both individual and societal levels, through an increase in scale. Consistent with the recent recommendations of the House of Commons Standing Committee on Public Safety and National Security, this would include expanding access to existing evidence-based models of care such as medical and non-medical withdrawal programs, programs to manage concurrent mental health problems and addictions, ambulatory and residential treatment programs, and opioid substitution therapies. Similarly, given the substantial health (e.g. infectious disease, overdose death) and social (e.g. crime) concerns caused by heroin addiction in urban areas and the potential for heroin by prescription to reduce these harms among those for whom conventional treatments fail, the prescription of heroin could be considered for selected patients with opioid addiction that is refractory to all other treatment modalities.

Various harm reduction strategies, such as needle exchange programs and methadone maintenance therapy, have also proven effective in reducing drug-related harm and have not been associated with unintended consequences. The joint recommendations recently released by several United Nations agencies, including the World Health Organization, provide a strong scientific basis for expanding harm reduction efforts. Beyond these recommendations, the recent consensus statement from Canada’s National Specialty Society for Community Medicine, which endorses the scale-up of supervised consumption facilities, reflects the compelling national and international evidence to support the controlled expansion of these programs in urban areas with high concentrations of public drug use and related harms.”

  • What values are being prioritized in this argument?
  • What other values, if any, might be important/relevant to consider?
  • What would you suggest if you were asked to be part of a group looking to help local government develop and prioritize approaches to similar issues?

Some Values and Ethics Issues to Consider

  • Duty to provide care
  • Empathy
  • Respect for autonomy
  • Respect for dignity
  • Vulnerability
  • Community/ public health ethics
  • Community relationships
  • Living at risk
  • Patient-centred care
  • Patient safety
  • Quality of life
  • Resource allocation

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

26. CASE: Withdrawal of Life-sustaining Treatment, or Euthanasia?

An ethics request came from nursing staff caring for a patient dying with end-stage throat cancer on acute surgical service. The patient has requested a removal of her tracheotomy and a chance to die as she chooses. She had agreed to try the trach for a while, but is finding it negatively impacts her quality of life too greatly. Her spouse (in his 80s and not physically well) is present and her whole family is agreeable to her request.

The conversation with the patient continued for several days to give her ample time to consider the implications of her decision and allow her to change her mind if she wanted. She remains adamant, has capacity, is well-informed, and has made her decision voluntarily.

Difficulty has arisen because a few staff members on her team see this course as “assisting suicide” and have refused to continue to care for her. Other staff members are uncomfortable and concerned about possible legal repercussions.

When the trach is finally removed, an unexpected crisis develops. The sedation given during the procedure wears off several hours later, such that the patient becomes very short of breath and agitated, which distresses the family and the staff caring for her. Staff felt they were not adequately prepared to handle this sort of crisis and did not have ready/ timely access to palliative care or ENT physician support to deal with it.

The nursing unit manager thinks it would be helpful to have an ethics-focused discussion facilitated by people not connected to this inpatient unit.

  • In this scenario there are a number of different ethics concerns affecting the patient and family as well as staff members. What issues would you consider important to include in the discussion with staff who attend the meeting?
  • What values may be stake for the various participants in this scenario?
  • What steps would you take to prepare for this meeting?
  • Does this case have policy implications? If so, what are they?

 

Some Values and Ethics Issues to Consider

  • Capacity
  • Respect for patient autonomy
  • Informed consent
  • Respect for human dignity
  • Patient-centered care
  • Patient-family relationships
  • Moral distress among health care providers
  • Medical error
  • End-of-life decision-making

18. CASE: When the “Truth” is Painful

Mrs. Sally Parrot, a 73-year old widow, has mild dementia of a presumed neurovascular type. She resides in her own small apartment in Serenity, a private continuing care community in Bedford, where she receives some assistance with housekeeping, meal preparation and organization of her medications. Sally is actively engaged in Serenity’s structured activities and, in particular, enjoys participating in the music program and walking group. One of her two children, Lorna, resides in Halifax and visits her once weekly.

Sally was recently diagnosed with slowly progressive, metastatic bowel cancer. After talking it over with Lorna and her son Fred, Sally decides to go ahead with a series of recommended palliative treatments: a short course of chemotherapy, de-bulking bowel surgery and low dosage radiotherapy.

After the chemotherapy, which she has tolerated well, Sally is admitted to hospital for her surgery, which involves removal of a section of large bowel that contains the primary tumour. Unfortunately, she develops post-operative delirium, which has been slow to clear over the past few weeks in hospital. At the present time, she is reasonably clear-headed in the morning, but her cognition deteriorates in a ‘sun-down’ fashion as the day progresses.

Seeing how her mother has reacted to surgery, Lorna begins to wonder if the planned third phase of treatment, i.e., palliative radiotherapy, is the still the way to go. She decides to wait until her brother arrives later that week from Australia to sort this out. In the meantime, during the late afternoons and evenings, Sally has begun to ask her health care providers about why she is in the hospital. They tell her that she is in hospital for surgical treatment of her bowel cancer. However, Sally does not retain information for more than ten minutes late in the day due to her delirium-related confusion, so each time the direct care nurses inform her that she has cancer in response to her question, she responds in the same way – with surprise and significant emotional distress.

The nurses consider truth-telling in the disclosure of health information to be an important professional value and practice. However, they begin to wonder whether they are doing more harm than good in responding to Sally’s repeated questions in an honest and forthright way.

A group of nurses who are experiencing moral distress in these challenging circumstances get together and, with the knowledge of their health services manager, contact the clinical ethics service to make a formal request for ethics support.

  • What are the ethics issues in this case?
  • How would you work through the issues with the health care team?
  • Is withholding the truth from a patient ever the right decision?
  • Should alleviating the distress of the patient and/or the health care team be more of a priority than upholding the value of truth-telling?


Some Values and Ethics Issues to Consider

  • Honesty, trust and truth-telling
  • Capacity
  • Substitute decision-making
  • Respect for patient autonomy
  • Moral distress among health care providers
  • Patient-family relationships
  • Respect for human dignity
  • Patient-centered care
  • Respect for professional integrity
  • Beneficence and non-maleficence

17. CASE: Too Much to Expect?

92-year old Ellie MacPherson has recently moved to a long-term care facility. She had found that the increasing difficulty she was experiencing due to arthritis with getting dressed, making her meals and getting out of the house meant that she could no longer live on her own.

Ellie brought a number of her favourite clothes to the long-term care facility. While she was initially asked what she would like to wear, this practice has changed. Now the person assisting Ellie with getting dressed chooses the clothes for her. Ellie expressed her frustration with this situation saying, “I’m 92 years old! Don’t you think I can choose what to wear? I’m not a baby!”

The response she heard back was that it took too long for Ellie to choose her clothes and that she would have to make do: “Other residents in the facility need assistance with getting dressed as well and I can’t spend all my time on you.” Ellie’s family has requested an ethics consultation to address the issue.

  • Is Ellie’s complaint unreasonable?
  • Is this an ethics issue?
  • How would your ethics committee handle this inquiry?

 

Some Values and Ethics Issues to Consider

  • Resource allocation
  • Patient-centered care
  • Respect for human dignity
  • Patient-provider relationships
  • Quality of life
  • Respect for patient autonomy