16. CASE: Shifting Gears

Nedra has been fighting ovarian cancer for 3 years. When first diagnosed, Nedra had surgery followed by intensive chemotherapy. Although it initially looked like she might be moving into remission, things started to change about 6 months ago. Nedra started experiencing some bone pain and it was discovered that her cancer had metastasized. Although radiation treatment seemed to make a difference initially, recent scans indicate that there are new spots in the bones throughout her body and the previous ones are growing. Despite this news, Nedra has steadfastly been committed to her treatment and wants to continue fighting.

The health care team knows from previous conversations with Nedra that a number of years ago she became estranged from her family. They did not accept her when she “came out” as lesbian and they have refused to see her and her partner, Willow. This rift has only been recently bridged – in part due to the seriousness of Nedra’s cancer – and is still mending. Nedra mourns the loss of time with her family and is struggling with her anger towards them as well. Nedra hopes that there is something else to try that may give her a bit more time as she wants to be able to get things in order with her family.

Unfortunately, Nedra came into emergency a week ago with delirium. Further tests have confirmed that she has brain metastases. She has good and bad days; some days she is aware and able to discuss what is happening, but clearly her capacity is fluctuating.

Willow is Nedra’s substitute decision-maker. In discussions with both Nedra and Willow, an increased focus on palliative care and lessening treatment has been discussed and agreed to, given what is happening. This is clearly a change from Nedra’s previous position of treatment at all costs. And, as a result, this change in the goals of care has exacerbated some of the family problems.

Nedra’s parents and brother do not believe that Nedra has actually changed her mind and are convinced that Willow is interfering with the treatment decisions. They claim that Willow is not supporting Nedra’s previously expressed wishes and it seems that when they talk with Nedra that she is inclined to start thinking about treatment again.

The health care team is struggling with providing care for Nedra, feeling that everything that is done is under scrutiny and subject to challenge. Dealing with the pressure to do more coming from Nedra’s family is taking its toll on the health care team, as well as Willow. Some team members are unsure about how to understand Nedra’s change in the goals of care.

• How would you assist the health care team, Nedra, Willow and the family to work through these issues?
• Does Nedra have the capacity to make this choice?
• Is Willow acting appropriately as the substitute decision-maker?
• Should Nedra’s rocky relationship with her family be considered in the decision-making?

Some Values and Ethics Issues to Consider

• Respect for patient autonomy
• Substitute decision-making
• Capacity
• Patient-family relationships
• Advance care planning

15. CASE: Acceptable Judgement?

Sara Thornton, an unemployed 19-year old woman, lives with her 28 year old sister, Fran, and Fran’s boyfriend, Alan. Both sisters were diagnosed with bipolar I disorder in their mid-adolescence. They are both estranged from their alcoholic mother, the only living parent.

Fran has learned to manage her illness reasonably well through lifestyle changes, participation in group psychotherapy sessions, and the regular use of mood stabilizer medications. She has a stable, functional relationship with Alan and works full-time as a paralegal at a local law firm.

Sara, on the other hand, ‘loves to party’ and has an established pattern of binge drinking to dangerous intoxication. She snorts cocaine several times a month. Despite her older sister’s advice, she often takes ‘drug holidays’ from her mood stabilizer medication in order to enjoy the up-shift phase of her mood cycle and to ‘get a lot of stuff done.’ She has a rather stormy relationship with her current clinical psychologist at the Bipolar Clinic of the local psychiatric hospital.

Fran was informed about psychiatric advance directives at her last visit with her private psychiatrist. She decides to complete one and provide the instruction that she wishes to be treated with antipsychotic medications and ECT if these treatment modalities are considered necessary by her psychiatrist in the event that she loses capacity and is hospitalized for her mental illness. She has a past history of refusing medications while in full-blown mania and this has delayed her recovery from these episodes. She names Alan as her proxy substitute decision-maker.

Fran encourages Sara to write a psychiatric advance directive (PAD) as well. Sara decides to name a friend of hers, who is also a person with mental illness, to be her substitute decision-maker. Because she had a bad side-effect experience with the use of an atypical antipsychotic medication during one of her manic episodes, Sara indicates in her PAD that she does not wish to receive antipsychotic medication if and when she loses the capacity to make her own health care decisions during a manic episode. Following hospital policy, Sara’s social worker forwards her completed PAD to her electronic health record.

Three months later Sara presents to the psychiatric hospital ED in full-blown, acute mania. She is threatening to kill her new boyfriend. She is admitted to hospital on an involuntary basis. The psychiatrist on her clinical unit, Dr. Control, knows both sisters from previous hospitalizations and calls Fran about her sister’s emergency admission. With support from Fran, Dr. Control challenges the validity of Sara’s PAD claiming that, in all likelihood, Sara lacked capacity when she made it. He orders intramuscular antipsychotic medication for management of Sara’s acute mania. The nurse preparing this medication for injection notices that Sara’s PAD was witnessed by her family doctor. She calls the ethics support line.

• How would you handle this request?
• What issues need to be considered?
• Who should be making care decisions in this case?
• Who should determine the validity of a personal directive?

 

Some Values and Ethics Issues to Consider

• Capacity
• Substitute decision-making
• Respect for professional integrity
• Respect for patient autonomy
• Professional competence
• Care for the vulnerable
• Beneficence and non-maleficence
• Advance care planning