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