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?
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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?

 

 

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

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