End-of-Life Decision-Making Complicated by Pressure from Family Members
When it comes to medical decisions that affect them, the broad consensus in Western medicine today holds that the individual patient should be the ultimate decision-maker. The wishes of the individual are ultimately more crucial than even the physician perspective, whose role is to advise on the scope of possible medical interventions, and the outcomes associated with each. Today more than ever, says an article in The Journal of Palliative Medicine, it is up to each individual to make treatment decisions, and to determine how they fit into the individual’s sense of meaning and purpose.
Nevertheless, no individual operates in a vacuum. The role of medical professionals can be powerful in swaying a patient towards one treatment or away from another. Physicians are still vested with a great deal of authority, which must be used responsibly and ethically. In the same way, family and loved ones are able to exercise a great deal of influence on the individual facing life-limiting illness. Unlike medical professionals, who hopefully are trained in ethics and patient autonomy, some family members may have no qualms about placing undue pressure on their loved ones. In some cases, individual autonomy can be compromised, resulting in care decisions that do not ultimately reflect the values and wishes of the patient.
In the article, “When Families Pressure Patients to Change Their Wishes,” Liz Blackler, LCSW-R, MBE explores what it means for patients to be coerced or pressured by family members. Providing real-life examples through an anonymous case study, Blackler suggest strategies to empower patients who are experiencing coercion, using the physician’s role to encourage the personal autonomy of the patient.
Key to Blackler’s article is the concept of “compromised autonomy.” The happens, she says, “when patients with decisional capacity are unduly pressured or coerced by their families into making medical decisions that are not in line with previously held values, beliefs, or perspectives.” Such pressure can present itself when caregivers “employ verbal threats, harassment, berating, intimidation, or other manipulative tactics designed to force vulnerable patients to change well-established beliefs or preferences.” This dynamic is particularly prevalent in relationships where there is a long-established power imbalance, or where there have been shifts in familial roles and relationship status.
Why do patients concede to pressures from their caregivers? Sometimes it is to avoid conflict or protect broader interests within the family. For example, a patient may not be interested in prolonged, invasive, futile care in the ICU, but may agree to continue interventions in order to meet the emotional needs of her family. In times such as these, clinicians may experience what Blackler refers to as “moral distress,” which occurs when a person knows the right course of action, but is unable to carry it out. “Moral distress is commonplace in critical care settings where staff is asked to provide aggressive life-prolonging medical care in a manner contrary to their personal beliefs and professional values.”
Though it may be difficult to witness, it is important to remember that sometimes patients do genuinely reconsider their own preferences in light of the needs of loved ones. Patients can sometimes legitimately set aside their own wishes for the greater good of the family. “In this situation, support should be provided to the health care team to help facilitate staff understanding of patient’s choice to align with family.” Health providers can benefit from a better understanding of the interconnectedness of families and the altruistic motives that can inspire patients to undertake care that they would not personally choose.
Blackler concludes by reiterating the importance of patient autonomy. Patients have the right and ability to make independent decisions – whether or not those align with the preferences of medical personnel or family members. Coercion is antithetical to the value of patient autonomy. And yet, says Blackler, “Patient/family discord regarding treatment decisions and goals of care often exists.” In the context of life-threatening illness, this discord can result in pressures that threaten patient autonomy. “When a patient has compromised autonomy, all measures should be taken to protect the patient’s interests while acknowledging that, at times, family emotional needs will influence and overshadow patient’s personal wishes.” Nevertheless, “It is not unreasonable for patients to make complex medical decisions with their family’s well being at the forefront.” (Journal of Hospice and Palliative Nursing, 8/2016)