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
- Patient-family relationships
- Advance care planning