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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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?

78. Case: Health Care for New Canadians

 

Ahmed arrived recently in Canada as a refugee from Syria.  He was diagnosed in the refugee clinic with prostate cancer and has arrived for a follow-up visit.  The interpreter has called in sick and Ahmed speaks very little English.  Ahmed’s 13-year-old son, Bashir, has accompanied him and is acting as a translator for his father.  The health care team at the clinic would like to make some decisions today about treatment approaches, but Bashir seems uncomfortable with translating both questions and responses.

 

Discussion:

  • What are the ethical concerns raised by this case?
  • As a member of the health care team, how would you proceed?
  • What types of refugee health resources might be developed to support patients, families, and health care teams?

 

Resources:

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?

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

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

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

22. CASE: Double Effect?

The following call comes in to the ethics line:

“Hi. It’s Celine from Oncology. We have a patient here who is in the end stages of lung cancer and is in a lot of pain. The patient and his family are strongly Catholic. The patient’s pain doesn’t seem to be well-controlled. But the family won’t authorize increasing his dose of hydromorphone because they are concerned, based on the physician’s description of possible side effects, that they will be artificially shortening his life. One of the family members accused the team of trying to euthanize the patient. This is causing the team a lot of stress. Can the ethics committee help us out with this?”

  • How will you respond to this request?
  • Who would you speak to in order to gather the necessary information?
  • What are the conflicting values in this situation?


Some Values and Ethics Issues to Consider

  • Spirituality/ religious beliefs
  • Capacity
  • Patient-family relationships
  • Respect for patient autonomy
  • Substitute decision-making
  • Moral distress among health care providers
  • Respect for professional integrity
  • Professional competence
  • Beneficence and non-maleficence
  • End-of-life decision-making

19. CASE: Craig’s Right to Choose?

Craig Renaldo is a 14-year old boy who was recently diagnosed with a right lower leg malignant vascular tumour. Staging investigations have been negative for distant metastases. Craig’s attending medical oncologist, Dr. Purvis, consults a pediatric orthopedic surgeon, Dr. Mendes, who recommends a below-knee amputation. Dr. Purvis concurs with this recommendation given the aggressive nature of the tumour and the lack of other effective treatments – chemotherapy and radiotherapy have had poor response rates in relevant clinical trials. Dr. Purvis estimates that Craig has a seventy percent chance of survival with the surgery and a twenty percent chance without it.

Craig grew up in the Jehovah’s Witness (JW) faith and has been very active in the JW youth community. For the last two years, he and his younger sister Stacy have been living with their maternal aunt and uncle due to the tragic death of their parents in a motor vehicle accident. Uncle Bob and Aunt Kay are strong adherents to their JW faith. Craig and Stacey have a twenty-year old sister, Jane, who is a college student. She left the JW faith community after the death of her parents.

Craig and his aunt and uncle participate in an informed consent process for the proposed surgery including a lengthy sit-down discussion with Dr. Purvis and Dr. Mendes and some other members of the health care team. At the end of this dialogue, Craig and his aunt and uncle, in full agreement, emphatically state that they will not consent to blood transfusion during the surgery due to their religious beliefs. Dr. Mendes indicates that he is unwilling to operate on Craig without such consent given the vascular nature of the tumour and the high likelihood that whole blood transfusions will be required.

The surgical resident contacts Jane who has not been permitted to see or speak to her siblings for the past two years due to her JW fellowship. She expresses concern for the welfare of her brother and is alarmed by the refusal of consent for blood transfusion. Jane strongly believes that blood should be transfused if it is absolutely necessary during the surgery.

The unit manager contacts Legal Services and the health district’s legal counsel, in turn, contacts the Children’s Aid Society (CAS). The CAS supervisor indicates an interest in being involved in health care decision-making in these circumstances. A formal clinical ethics consultation is arranged.

  • What are your ‘gut’ responses to this scenario?
  • What ethics principles and values are at play?
  • Who should make this decision?
  • If the decision is a substituted one, how should such a decision be made?

 

Some Values and Ethics Issues to Consider

  • Substitute decision-making
  • Capacity
  • Spirituality and religious beliefs
  • Patient-family relationships
  • Respect for professional integrity
  • Respect for patient autonomy
  • Compliance with policy

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