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Refusing Myeloma Treatment?

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Oncology can be perplexed by refusing myeloma treatment, according to the article linked below. Mrs. G.O. clearly states the quality vs. quantity of life debate.

When I was diagnosed with MM at the age of 34, I told my oncologist to consider giving me more chemo than normal. I was young and aggressive in my thinking. I often lament that I wish I knew then what I know now. 

To be clear, I am not saying that I would have refused treatment then. My lament is more about knowing the pros and cons of conventional MM treatment.

Mrs. G.O. instinctively knew that even low doses of therapy could cause short-term side effects to the 80-year-old MM patient. Even low doses of Revlimid and dexamethasone can cause fatigue, diarrhea, and/or constipation. Common side effects that the 80-year-old MM patient, living alone, might find difficult.

Though chemotherapy is only one of many therapies mentioned by Dr. Ezekiel Emanuel in the video below gives a thorough explanation of of what I believe is Mrs. G.O.’s thinking.



Email me at David.PeopleBeatingCancer@gmail.org to learn more about managing MM with both conventional and non-conventional therapies.

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David Emerson

  • MM Survivor
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  • Director PeopleBeatingCancer

Can Patients Really Say No to Life-Saving Cancer Care?

Mrs G.O. is an 80-year-old retired teacher who was widowed a decade ago. With no close relatives, she lives alone, accompanied by only two cats and a dog that she has rescued. “I am alone,” she told Gustavo Kusminsky, MD, consultant in Hematology and Hematopoietic Transplant Service at Austral University Hospital and lecturer in medicine at the Hospital Universitario Austral, Buenos Aires, Argentina. She said this calmly while refusing treatment for life-threatening multiple myeloma. “Doctor, I would rather not,” she added — her words lingering in the quiet consulting room. That moment is now the focus of a recent article in the journal Medicina.

In the article, Kusminsky described how he made an effort to clarify to the patient that she needed cancer treatment. He explained that the treatment was mostly oral, required no initial hospitalization, and that consultations could be spaced out. However, Mrs G.O. maintained her position.

“The patient had no signs of depression, and her argument was logical. Mrs G.O. was already receiving several medications for high blood pressure, was on anticoagulation therapy for atrial fibrillation, and managed dyslipidemia with fenofibrate. But she preferred not to receive treatment for her multiple myeloma.” Kusminsky noted.

“Doctor, I have lived my life. I am old. I am already taking too many medications. I do not have a family, and it would be very difficult to deal with the side effects and be dependent on the hospital. As long as I can take care of myself, I do not want any more treatment, at least not for now. We will talk in a few months if I am still here,” she told him before leaving.

The article mentioned that responses such as Mrs G.O. spark perplexity in modern medicine to the extent that clinicians initiate protocols to rule out depression or other psychological factors when a patient rejects treatments that could prolong their life. On the contrary, no such checks are made when patients agree to treatment, because acceptance is deemed “normal.”

Because of collective assumptions and the war metaphors often used in oncology, Mrs G.O. risked being labeled a “deserter from the battalion” of patients with cancer.

In truth, her decision invites reflection on the doctor-patient relationship, respect for autonomy, and the benefits of modern cancer care offered today, Kusminsky said.

This provides an opportunity to consider the patient’s perspective rather than a purely medical perspective.

Jennifer Hincapié Sánchez, PhD, professor in the Faculty of Medicine at the National Autonomous University of Mexico (UNAM). She is the director of the UNAM University Bioethics Program and coordinates its Institutional Ethics and Bioethics Program for the Faculty of Medicine in Mexico. Although not involved in the article, she regards it as vital. “It’s crucial to remind medical staff that their role is to promote patients’ well-being and that this is related to the life plan that patients have set for themselves, even though this vision is sometimes not aligned with biomedical progress,” she said.

Patient Autonomy

Science-guided medicine aims to prolong life, improve quality, and relieve suffering. However, acceptance or refusal of treatment remains a personal choice for anyone with cancer.

Some evidence showed that patients who decline treatment do not always experience rapid decline. Many can live acceptable, even fulfilling, lives on their own for varying periods, even though they know that there is a possibility of shorter survival. Valuing fewer side effects and better quality of life. This suggested that quality of life is subjective and cannot be measured solely by biomedical standards but also by the meaning each person finds in their existence, even in the face of serious illness.

“There is a myth that quality of life is only valid when defined by objective success. Our task is to explain that it is subjective, and life can be meaningful despite limitations.” Kusminsky said.

Mrs G.O. knew her prognosis and treatment options but chose not to pursue treatment, which, while medically advisable, did not align with her values or vision of life.

Hincapié Sánchez stated that the priority is always to honor the patient’s choice. Clinicians must ensure that the patient has all necessary information that is always appropriate to their sociocultural context before making the decision.

“If the decision persists despite being informed and aware of the effects of the patient’s choice, all we can do is provide support, manage the pain, and seek the patient’s comfort,” she emphasized.

Medical Omnipotence 

Physicians should not view the refusal of treatment as an abandonment of the fundamental principles of the profession. Rather, it means respecting patient priorities and recognizing medicine as a dialogue between science and humanity, not as an exercise of control.

However, many clinicians struggle with such decisions because they conflict with their impulse to act and a sense of medical omnipotence. Hincapié Sánchez attributed these difficulties to medical training.

“We are taught to preserve life at all costs. If treatment even slightly prolongs life, many doctors continue to recommend it. The question becomes: Is it valid to extend life when its quality is in doubt?” she asked.

“Medicine is more than a science; it is an art. It is the most human in the sciences and the most scientific in the humanities. Let us not lose sight of the human element that allows us to see the patient as a person, not just a disease to be treated,” Hincapié Sánchez urges.

Kusminsky describes a common therapeutic obstinacy — doctors’ reluctance to stop “doing something,” to avoid “throwing in the towel,” or to uphold “hope is the last thing to be lost.”

“But physicians are growing more aware of these situations, and change is slowly coming,” he said. However, he added: “Of course, there is the issue of the perceived omnipotence of doctors — their words descending with authority to ‘prescribe’ treatment, issue ‘medical orders,’ or dictate ‘pharmacological’ therapy.

For the specialist, such terminology reflects a view of the doctor-patient relationship not as a mutual, two-way exchange, but as a vertical, paternalistic dynamic.

He suggested looking at ancient Greece for perspective. “Hippocrates, or rather the Hippocratic school, taught that the doctor-patient encounter is inherently one of compassion. We must approach this in that way. Reflecting on that bond, improving communication, humanizing relationships, and, above all, being available to listen are key,” Kusminsky said.

Another intersection that has long fascinated Kusminsky is between literature and medicine. This interest led him to explore the field of narrative medicine, serve on the board of directors of the Argentine Society of Narrative Medicine (SAMEN), and join the roster of speakers at the upcoming second SAMEN Conference in Buenos Aires on July 10 and 11, 2025.

“Narrative medicine uses storytelling tools to absorb, process, acknowledge, and empathize with patients’ illness narratives, aiming to restore humanism to practice,” he explained.

According to Kusminsky, the circumstances under which Mrs G.O. expressed her wish not to begin treatment immediately reminded him of a text by Melville’s famous “I would prefer not to” from Bartleby, the Scrivener.

This reflection inspired him to publish an article cited at its beginning. At the same time, it reinforced his belief that what patients say can itself be a form of narrative that extends beyond the confines of clinical history.

Mrs G.O. chose not to pursue treatment for multiple myeloma. However, she returned to Kusminsky’s office approximately 2 months ago. She felt well, and her disease slowly progressed; however, she still had no clinical signs or symptoms.

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Kusminsky and Hincapié Sánchez have declared no relevant financial conflicts of interest.

This story was translated from Medscape’s Portuguese edition.

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