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Terminally ill patients feel abandoned by doctors

March 9, 2009 |  1:22 pm

HospiceOnce 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

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Comments (3)

Oh yes, this is so true. My father was diagnosed with a brain tumor. He was a bit confused, had some trouble with his balance, but not suffering terribly nor was he at death's door. Kaiser Permanente said that all they could do was irradiate his entire brain. They fried his brain and he died shortly after, but that's not the whole story. The last three or four weeks they put him in a "home hospice" program that placed an intolerable burden on my 80 year old mother, after telling us that in his post brain-fried deterioration they couldn't even keep him in the hospital. I don't recall speaking to any of his doctors again after their treatment proved worse than the disease. They threw him away like a McCain-Palin bumper sticker after the election. It's criminal. I can't even imagine how many thousands of dollars he gave Kaiser over a lifetime.

I am a firm supporter of hospice care because of exactly what is described in this article.

I became a hospice social worker after caring for a parent for many, many years who because of a chronic illness died in a hospital hooked up to many machines that kept the body functioning.

The families with whom I interacted as a social worker said that they often were given little help from their doctors once the prognosis was a terminal one. The families were always so grateful for the care and concern that hospice staff members gave them -- day or night. (Hospice is a 24-7 service.) The ability to call even at 2 am and have a nurse or social worker available made a world of difference to the families.

I eventually left hospice work, but I was honored to have the opportunity to be with the families, and I hope that I made some small difference in the lives of families at one of the most difficult times in families' lives.

Not all doctors withdraw. When my mother was diagnosed with terminal cancer, her doctor, who lived nearby, stopped by during his morning jog every day to check on her. She also had excellent, at-home hospice care from San Diego Hospice, whose staff was very kind to me, the caregiver, as well. I'm so grateful to them and to the doctor for making such a painful experience easier for both my mother and myself, and allowing us to spend her last months at home together.


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