Courtesy of Opinionator |11.18.2015 | VJ Periyakoil
The End features essays by people who work in fields dealing with death and dying, like medicine, ethics and religion, as well as personal essays by those who have experienced the death of a loved one.
Participants in a Stanford University project write guides for family members concerning end-of-life decisions.
Of the many factors that affect the experience of dying, the one that patients and families often have the greatest control over is making decisions that are in the patient’s best interest. I recently participated in research on barriers to quality end-of-life care as part of a study released today in the Journal of Palliative Medicine. Some of the hurdles we identified, such as financial limitations or access to top doctors, may require societal change. But I am focusing here on the personal part of the puzzle that all patients, whatever their socioeconomic status, should have the potential to influence.
Most of us will lose our ability to make medical decisions for ourselves in the last phase of our lives. Patients with illnesses like dementia may lose the ability to make decisions months or even years before they die. Others who die of illnesses like cancer, liver disease and kidney disease may lose the ability to make decisions during the last days of their lives.
As the illness progresses, many struggle with distressing symptoms like severe pain, nausea, air-hunger, confusion and agitation. At this point, most patients just do not have the bandwidth to process complex medical information, weigh the risks and benefits and make choices.
When the patient is unwilling or unable to make medical decisions, the health care proxy is activated and he or she is obligated to make all health choices on behalf of the patient. These may be related to withdrawing or withholding life support, instituting artificial liquid feeding, attempting resuscitation and even whether or not to participate in autopsy and organ donation.
The concept of proxy decision-making assumes that a human being is capable of temporarily suspending personal beliefs and biases, metaphorically entering the head of the patient, and making decisions that the patient would have made under the given circumstances. Processing complex medical information and making high-stakes decisions for another person is always fraught with uncertainty and stress. Proxy decision-makers are often unprepared, and many may not be cognizant of the patient’s values and wishes. Even when the patient has well-documented advance directives, ultimately, the proxy has the power to override these directives.
As part of our research, my lab at Stanford interviewed many patients and patient’s family members on this topic; some of their stories are included in this video.
There are three common traps that the proxy decision-maker should be aware of in trying to make decisions for the patient – many of them life-altering decisions that must be made in a stressful situation with little time to think. In the examples below, patients’ names and details of their cases have been altered to protect their privacy.
The first and most common trap is what I call the Call of Love. Darlene, a patient with advanced lung disease, completed advance directives and the Physicians Order of Life Sustaining Treatment stating clearly that she did not want to be resuscitated if her heart were to stop. A bad pneumonia pushed Darlene into respiratory failure and she lost consciousness and would have died. Her partner, Carl, who could not imagine a life without Darlene, used his proxy status to override her directives. Darlene was resuscitated and stabilized on life support and eventually discharged from the hospital. However, Darlene was terribly upset at Carl for preventing her from dying naturally, which is what would have happened if resuscitation had not been attempted. When Carl argued that his decision to override Darlene was correct as she was “saved,” Darlene angrily responded, “That’s because you think that I want to live this way with this horrible disease. How can I ever trust you again?”
Proxy decision-makers can and do override the patient’s stated wishes. If resuscitation prolongs the patient’s life, the proxy views this as evidence that the right decision was made. While some patients are willing to allow the proxy to override their decisions, most expect the proxy to uphold their wishes.
The second trap to avoid is the Call of Duty. Jong, a Korean-American patient, was dying with metastatic cancer. A cycle of chemotherapy wiped out his immune system; he then succumbed to a vicious bug and was admitted to the intensive care unit for maximal life-support. Jong did not have advance directives and his wife, Soo-jin, was his default proxy decision maker. Despite maximal therapy, Jong’s condition deteriorated and the medical team wanted to withdraw life support and allow him to die.
Soo-jin was a soft-spoken woman who was respectful and deferential to the doctors. However, she categorically refused to entertain any discussions about withdrawal of life support.
One evening, after yet another long and ineffective discussion, I asked the question that had been echoing in my head. Is this what Soo-jin would want for herself, were she in her husband’s shoes? Of course not, she said. She would want to just die peacefully. So why was she subjecting her husband to this fate? “The duty of a good wife is to save her husband,” she said softly and with steely determination. The call of duty is loud and difficult to ignore. Here, the role as a dutiful spouse or parent or sibling obligates the proxy to execute decisions for the patient that the proxy would never stomach for himself or herself.
The final trap to avoid is the Call of Redemption. James was an octogenarian with severe heart failure. He had been hospitalized several times in the past year. Over the holidays, he lost consciousness and his neighbor called 911. He was admitted to the intensive care unit and placed on life support. Despite maximal medical therapy, his blood pressure remained extremely low, his kidneys shut down and he could not be aroused. The social worker tracked down his son, John, who lived in another state. John was busy with his life and had not visited his father for a few years. When he arrived, the I.C.U. team met with him and asked for his permission to withdraw high-intensity treatments to allow his father to die.
As John sat at the bedside of his dying father, all he could remember was the Thanksgiving dinners he had missed, and the phone calls he should have made to his father. Now, arriving to see his father at death’s door, John’s strong instinct was to take on the role of the defender and fight to protect his father from the doctors who wished to withdraw life support. In situations like this, the proxy (knowingly or unknowingly), is primarily motivated by his own need to have one last opportunity to repair the broken relationship and make amends to redeem himself.
As each of us identifies our proxy decision makers, the question we should ask is not just how much they love us but rather, how capable are they of implementing our wishes and preferences? The question each proxy should ask when making decisions on behalf of others is, who am I truly serving — the patient or myself?
VJ Periyakoil is a physician and director of palliative care education and training at Stanford University School of Medicine.