Once a patient becomes terminally ill, relationships between patients, their caregivers and their primary doctors may become frustrating and uneasy for everyone, according to a new study. The study, an unusual glimpse of what patients and their doctors are thinking and feeling as the end of life approaches, shows that patients sometimes feel abandoned by their doctors.
The study, published today in the Archives of Internal Medicine, involved 55 patients with incurable cancer or advanced lung disease who were expected to live a year or less. Along with the patients, 31 doctors, 36 family caregivers and 24 nurses involved in the patients' care were interviewed. The interviews were conducted at the start of the study, four to six months later and again one year later.
The authors, from the University of Washington, Seattle, revealed that patients feel they lose access to their doctor and his or her medical expertise once they become terminal. "I feel I need more help now, than I did . . ." one patient said, fearing that hospice care would end regular contact with the doctor. Patients may also miss the doctor-patient relationship regardless of whether the doctor is still providing care. "I think that it's important that you still have that contact with them even though there isn't anything they can do to make you better," another patient said.
In contrast, doctors said they were bothered by "losing track" of what is happening to their former patients after active treatment has ceased. However, physicians did not appear to recognize the desire for patients to continue to see them even when there was nothing left for the doctor to do. Caregivers feel a lack of closure, too, and would like a parting phone call or visit from the doctor after the patient's death. Doctors said they often felt they should call the family after the patient's death, but lacked the time to do so or feared becoming too emotional.
"Early on, patients and family caregivers fear that their physician, whose expertise and caring they have come to depend on, will become unavailable," the authors wrote. "Near death or afterward, they may also experience a lack of closure of that relationship."
Medical ethics emphasizes the importance of not allowing patients to feel abandoned when the care plan involves withdrawing disease-modifying treatment. This study indicates that healthcare professionals have room for improvement in making sure their patients feel cared for -- and cared about -- until the end.
-- Shari Roan
Photo credit: Kirk McCoy / Los Angeles Times