Is it ethical to act on the request of a 41-year-old woman with advanced breast cancer, who has been developmentally delayed since birth, for no further cancer treatment?
This was the question posed in one of our classes at the Johns Hopkins School of Nursing. In the course, Philosophical, Theoretical, & Ethical Basis of Advanced Practice Nursing, students are asked to debate an ethical issue in front of our peers and instructors with the goal of developing practical knowledge and skills to address ethical issues commonly faced in nursing. Students are asked to prepare for both sides of the argument, and a position is chosen for them based on a coin toss at the time of the debate.
In this situation, the positive and negative arguments both had valid points related to the treatment of individuals with disabilities and decision making capacity based on the virtue ethics principles of autonomy and beneficence.
The positive position in this debate is that it is ethical for the health care team to act on this woman’s request for no further breast cancer treatment.
- Respecting autonomy means honoring a person’s right to make his or her own decisions, assuming the person exhibits the traits of an autonomous person. One of the main issues in the intellectual and developmental disabilities community has been challenging professionals who make one-sided decisions for clients about how they should live their life.
- A developmental delay does not necessarily exclude this woman from having the ability to understand the consequences of her decision, to use reasoning skills to make this decision, to deliberate with others and explain her choice, and to make a choice as illustrated by Applebaum in the New England Journal of Medicine.
- A provider’s role is to disclose accurate medical, treatment, and prognosis information and to engage in shared decision making with the individual with the purpose of empowering the individual making his or her own decision.
- In contrast, a provider does not have domain over an individual’s values—and by denying her wishes to stop treatment—the provider acts as if he or she does not recognize and value the individual as a person capable of making her own decisions.
- There are circumstances under which a provider could have cause for concern about a decision by an individual with an intellectual or developmental disability. Decisions that would cause “concern” might include refusing medication that would prevent an adverse outcome, refusing prevention or treatment that is standard of care, refusal to follow recommended diet, refusal to follow safe sex practices, or refusal of continuous positive airway pressure. Sometimes decisions such as refusal of breast cancer treatment can be confused with cause for concern because the decision strikes an unsettling tone in health care provider’s values to ‘help’ or cure.
- True concerns about this woman’s decision should be addressed in a thorough investigation into her decision-making capacity, as with any individual.
- In conclusion, the provider should not decide what is in this woman’s best interest, given that a moral patient-provider relationship has been established and she can exhibit the traits of an autonomous person with full capacity.
The negative argument is that it is not ethical for the health care team to act on her request for no further cancer treatment.
- As an adult, this woman will never recover development at her age, which means we need to both adjust care processes for her while protecting from paternalism through virtue ethics.
- In living memory, people with disabilities were often institutionalized en masse, experimented on without knowledge, and forced to have treatments against their will or the will of their loved ones. Recent observational studies by Tuffrey-Wijne et al. from England and Australia show that individuals with disabilities are commonly not included in discussions about their treatment options. With this knowledge, we must practice respect for autonomy—starting with learning more about her, the affect her developmental delay has on her decision making capacity and autonomy, and her understanding of the likely impact of stopping treatment.
- While we can appreciate that she has communicated a choice to stop treatment, we need to understand circumstances under which she communicated a choice to start treatment and identify if any evaluation of her capacity was completed when deciding to start treatment or since that time.
- We practice beneficence in this case by ensuring that she receives the greatest benefit from her treatment. Additionally, we can apply the World Health Organization bio-psycho-social model of disability that aims to address the health inequities and poorer outcomes for people with disabilities around the world as described by Arnott. Using this model, we can meet her biological needs through access to symptom management as well as her psychosocial needs of support and quality of life.
- Beneficence is an important strategy to support the greatest benefit for the population, including providing effective treatment for all people with disabilities and the population overall.
- Due diligence is required however, to prevent paternalistic actions if she does have capacity to make this choice because violating her autonomy would result in great harm against her and the provider’s virtues.
At the conclusion of our debate, we agreed on several points including:
- The next step is the thorough assessment of this individual’s capacity to order a stop in cancer treatment and respect her autonomy confined to her ability to understand, reason, deliberate, and choose.
- Importance of learning more about her personal wishes and reasons for wanting to stop treatment.
- The need for facts related to any prior evaluation of this individual’s decision-making capacity prior to starting this treatment plan, or if the providers were happy to treat so long as she agreed with the treatment plan as determined by medical experts.
- It is not unusual to have differences in opinion about the cause for concern or alarm for someone making the consequential decision to stop treatment for potentially life-threatening conditions or for severe symptoms.
ABOUT THE AUTHORS:
MEGAN DUEVEL ANDERSON
Megan is currently a student in the Master of Science in Nursing (MSN) Entry Into Nursing Program and plans to graduate in May 2018. She graduated from Dartmouth College with a Master of Science in Health Policy and Clinical Practice Research in 2008. She is an active member of the Johns Hopkins School of Nursing Student Senate and a Fellow in the Helene Fuld Leadership Program for the Advancement of Patient Safety and Quality.
CHARLOTTE WERNER
Charlotte is currently a student in the MSN (Entry Into Nursing) Program and plans to graduate in May 2018. She graduated from Cornell University in 2012 with a Master of Science in Nutritional Sciences. She is a member of the Research Honors Program at JHSON.
