92. 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?”

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90. 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?

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

39. CASE: Setting Priorities

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

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

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

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

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

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

 

Some Values and Ethics Issues to Consider

  • Resource allocation
  • Distributive justice
  • Priority setting

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

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

25. CASE: A Difference of Opinion?

Mary is a 90-year old woman who has been in hospital several weeks. She has a COPD exacerbation, increasing difficulty swallowing, and pneumonia. She has said repeatedly she is tired of being in hospital and tired of fighting to breathe. She doesn’t want a feeding tube or her IV but wants to be allowed to die comfortably.

Mary’s daughters who have been regular, frequent visitors, say she has always been a fighter and would never want to give up. They believe she is just discouraged and are requesting everything be done to keep her alive including a feeding tube, IV hydration, and mechanical ventilation if it becomes necessary.

The resident in charge of Mary’s care calls the ethics request line.

  • What are the ethics issues in this situation?
  • What underlying values are at stake?
  • Should Mary or her daughter’s have decision-making authority?
  • How would you respond to this call for ethics support?
  • Who should be involved in the discussion?

 

Some Values and Ethics Issues to Consider

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