An article in the New York Times dealt with a highly sensitive humanitarian and medical experience in New York State, where the legalization of medically assisted death led to the emergence of a new foundation called Quiĕtus, established by a team of doctors, nurses, psychologists, and palliative care specialists to help terminally ill patients end their lives according to their wishes and under medical supervision.
The newspaper placed this experience – in an article written by Emma Goldberg – at the heart of a broader discussion about the limits of medicine, the meaning of care at the end of life, and whether it is possible for helping a patient to die to become an extension of the doctor’s role in alleviating pain and suffering.
The story stems from the experience of palliative care physician Tara Shapiro with her mother-in-law, who was suffering from a degenerative muscle disease and decided for herself that she was ready to die. When the family helped her carry out her wish in Vermont in 2023, Shapiro found herself faced with profound questions about the limits of the doctor’s role: Is the doctor’s mission limited to resisting and postponing death, or can it also include helping the patient end his suffering when death becomes imminent?
With the legalization of assisted death in New York, Shapiro decided to work with a team of doctors, nurses and psychologists to create a specialized institution that would provide patients with medical and psychological evaluation, assistance in meeting legal requirements, along with logistical support and support for families.
The cost of the service is about 12 thousand dollars, with the team pledging to help patients who cannot afford it, but establishing the institution was not an easy task, because the team was engaged in an experience that did not have many precedents. The doctors were forced to think about issues that were not a usual part of the work of medical institutions, such as finding pharmacies willing to provide the necessary medications, arranging their shipment to patients’ homes, determining legal responsibilities, dealing with insurance companies, and even thinking about how to provide the service without raising the concerns of neighbors or the objections of their colleagues in the profession.
Death facilities
The team meetings reveal that the challenge is not only related to legal and medical issues, but also to the small details that accompany death. They had to think about the equipment that doctors should carry during home visits, how to deal with patients and their families, the possibility of family disputes on the day of death, and the question of whether so-called “death facilities” should be provided to support the patient and his family.
They also discussed the most difficult question: Should the team be available around the clock if a patient feels in the middle of the night that he can no longer bear the pain and wants to end his life?
Here a clear difference emerged within the team. Daniel Cogan, who leads the organization, believed that bearing the responsibility of helping a patient die means that doctors must be available when the patient needs them, even in nighttime emergencies, as there is no meaning in promising the patient an orderly and controlled death and then leaving him waiting when his condition suddenly deteriorates.
As for the doctor, Christian Zanarto, he was more cautious, and warned that working at this pace might lead to psychological and physical exhaustion of the team. From his point of view, good care at the end of life requires doctors to maintain their energy and ability to be humane, and therefore setting time limits for service may be necessary.
These discussions reflect the nature of the mission chosen by the team. They are not dealing with an ordinary medical case, but rather with a final decision that cannot be undone. Therefore, every detail carries an ethical and human dimension. Even the arrival of the medicine to the patient’s home can be – in the eyes of the team – a source of reassurance because it gives the patient a feeling that the option to end the suffering has become available to him if he needs it.
Some doctors and medical ethicists fear that allowing a doctor to assist in dying would undermine the basic principle of the profession, which is to protect life, seek to cure illness, and restore the patient’s health.
The article places the Kyotos experience in the face of a great paradox within the American medical community. There is widespread support for the idea of legalizing medically assisted death among doctors, but a small percentage of them are willing to participate in it in practice.
An extension of palliative care
Some doctors and medical ethicists fear that allowing a doctor to assist in dying would undermine the basic principle of the profession, which is to protect life and seek to treat disease and restore the patient’s health. They believe that the doctor’s role should remain linked to treatment and care, even when the disease becomes incurable.
But Shapiro and her colleagues adopt a different vision. They do not believe that helping a terminally ill patient to die contradicts the principle of “do no harm.” Rather, they believe that the continued suffering of a person approaching the end of his life, despite the existence of a legal and medical means that allows him to choose the timing of his death, may itself be a form of suffering that can be alleviated. Hence, assistance in dying becomes an extension of palliative care and not its opposite.
As New York’s law approached implementation, the Kyotos team also faced an important practical question regarding the size of the expected demand. Experience in other states indicates that the number of patients requesting prescriptions for assisted death may be limited at first, but increase over time.
Therefore, it was not clear to the team members whether the organization would become a sustainable medical activity or a limited experiment that would meet the needs of a small number of patients, and even some team members were wondering whether leaving their current jobs and devoting themselves to this project represented a major professional risk.
In the end, the article does not provide a final judgment on the Kyotos experience as much as it puts the reader before complex ethical, medical and humanitarian questions, as the project represents an attempt to redefine the concept of “good death” in an era in which medical technology has become able to prolong the lives of patients even in the final stages of incurable diseases.
The article pointed out that the question is no longer just how can doctors prolong a patient’s life? It also became: How can one be helped when treatment is no longer possible, and alleviating suffering becomes the primary goal?
Through the story of Shapiro and her team, the article paints a picture of a new medical field still in its infancy, in which health care intersects with law, ethics, religion, and human feelings.
While the founders of Kyotos believe that giving a patient a safe and orderly option to end his life can be an expression of compassion and respect for personal autonomy, others fear that this will lead to changing the basic boundaries on which the medical profession was founded.
Between these two positions, one fact stands out, which is that legalizing medically assisted death does not end the debate about death, but rather moves it inside doctors’ clinics and to the heart of the relationship between the doctor, the patient, and the family.