Case of the Quarter

Part 2 

(If you missed part 1, find it below)

The clinical team requests an ethics consult to discuss Tara’s parents’ wish not to tell Tara about her prognosis or that the team is stopping the curative treatment and moving forward with comfort care.  

The clinical team and Tara’s parents meet with Ethics Services. First, the Ethics team clarifies that Tara’s diagnosis is terminal with no curative treatment available. The team then discusses Tara’s capacity with respect to her condition and prognosis.  According to Dr. Sloan, Tara can understand information about her disease and the reality of her condition, and she appreciates the consequences (risks and benefits) of various interventions.  

Next, the team gathers more information about Tara’s social background, including her relationship with her parents and any religious or cultural considerations. The team learns that Tara deeply values the strong relationship she has with her parents, close friends, and religious community. According to the care team, despite her ability to make decisions on her own, Tara and her parents generally made decisions about her health care together. 

The team also learns that, according to the family’s faith, to which Tara is herself deeply committed, absolute candor may hasten a person’s death. According to Tara’s parents, a lack of truthfulness about Tara’s condition is not only permissible but also mandatory to protect her from harm.  

While they appreciate Tara’s family’s commitment to their faith, the clinical team worries that Tara, who deeply values the close relationships in her life, will not be given the opportunity to say goodbye to her loved ones if she still believes there is a chance that her cancer may be cured. Given Tara’s perceptive and mature state of mind, the clinical team also express concern that she will inevitably become aware of the advanced stage of her disease, which could be isolating if it is not acknowledged by her family or her care team. From the clinical team’s perspective, not telling Tara the truth about her prognosis undermines the principle of autonomy, or the idea that a capable person has the right to live their life according to their own preferences and wishes. 

 
Poll 

Which of the below could be relevant ethical considerations in this case?  

1. The principle of respect for autonomy 
2. The principle of nonmaleficence (i.e. to not harm)
3. Tara’s wishes and preferences
4. All of the above 

Part 1

Tara is a 16-year-old girl with leukemia. After an extended period of treatment, the curative interventions are no longer effective in stopping or slowing down the disease progression. The clinical team has determined that Tara should be transitioned to comfort care to manage her symptoms and provide palliative support.   

Tara has a very close relationship with her parents, who have been deeply involved in her care. This week, Tara’s oncologist, Dr. Sloan, informed her parents that the treatment is no longer working as hoped and all curative options have been exhausted. Moving forward, Dr. Sloan recommends comfort care to reduce pain and symptoms. Tara is psychologically very mature and has, in the past, been involved in making decisions related to her health. On previous occasions, she has shown that she can understand information about her disease and the interventions.  

Although Tara has been involved in making decisions related to her health care in the past, on this occasion, her parents have made it clear that they do not want Tara to be told that the curative interventions have failed and that a comfort care approach is now being planned. They believe that disclosing this news to Tara would be harmful because it will cause her to develop fear and lose hope, which will, in turn, negatively affect her health.  

Dr. Sloan recognizes that Tara shares a close relationship with her parents. She worries that disclosing this information to Tara, against her parents’ wishes, may jeopardize the clinical team’s relationship with the parents. However, given Tara’s maturity and past involvement in her health care decision-making, Dr. Sloan feels uncomfortable at the thought of not telling Tara the reality of her condition and her prognosis. Furthermore, Dr. Sloan believes that by not disclosing this important information to Tara, she may have false hope and be denied the possibility to prepare for her imminent death. Alternatively, Tara may already know she is dying and be living with that knowledge in isolation.  

Poll 

What would you do in this situation?  

1. Honour the parents’ request not to tell Tara.
2. Tell Tara.