The last goodbye: Comforting your dying patient

H er doctor entered the hospice room early in the morning to check on Beth, a patient dying of breast cancer.

He checked her morphine pump and looked at her chart. When his beeper sounded, he said he had to go and would be back in a day or two.

That was the last time Beth and her family saw him.

It's a textbook example of how dying patients and family members can feel abandoned when their doctor leaves without a final goodbye. And it's one physicians who specialize in patient communication cited from Alan Shapiro's book, Vigil, when they wrote about saying goodbye to dying patients in an April 2005 issue of Annals of Internal Medicine. The authors concluded that saying farewell is a practice worth learning, for the sake of patient and physician.

Talking about death with a patient and dealing with the end is not easy, physicians say. Some say medical school taught them to keep a distance from patients, that getting too close was dangerous emotionally.

But the medical community recently has devoted more effort to examining and improving the last goodbye between physician and patient.

More schools have incorporated the issue into courses on communicating with patients and delivering bad news. Studies have examined the emotional impact of patient deaths on doctors and how physicians can reduce stress and depression in family members of dying patients. Increasing interest in palliative care and the hospice movement have led to greater attention to end-of-life care, too.

But some doctors still are uncomfortable saying goodbye when the end is near.

"Death is difficult no matter who you are. For doctors, it's made even more difficult, because in some ways it symbolizes failure," said Massachusetts transplant surgeon Pauline W. Chen, MD. In a book released in January, Final Exam: A Surgeon's Reflections on Mortality, she explored how to be more compassionate toward dying patients.

"For doctors to be there for their dying patients, to remain with their patients in their last days, it's one of the biggest challenges we face."

Dr. Chen learned from how she handled her patient J.R., an auto mechanic with colon cancer. She liked him and appreciated his sense of humor. "He always offered to help me with my car, which was a disaster at the time," she said.

Dr. Chen operated on J.R., but his cancer had grown into his pelvic sidewalls. Later that year, J.R. sent Dr. Chen a Christmas card, but she didn't write back. "I convinced myself I was too busy, but I think a lot of it was trying to depersonalize the experience," she said.

She received a Christmas card from J.R. for three more years. Then they stopped. Four years later, Dr. Chen mustered the courage to write J.R. and heard that J.R. had died.

Dr. Chen felt bad about not writing, and she now tries to be the compassionate doctor she believes dying patients and their families crave.

"We all dream of being the doctor who is there for our patients," said Dr. Chen, who wrote about J.R. in an Op-Ed article in The New York Times last year. "I make a conscious effort that I cannot shy away from [a patient's death]."

Breaking the "not too close" barrier

While medical tradition says a doctor shouldn't get too close, studies show that's not what happens.

About one in three doctors said a patient's death had a strong emotional impact, according to a University of Pittsburgh study in a July 2003 issue of the British Medical Journal. The study looked at emotional reactions of 188 doctors who cared for 68 patients who died at two U.S. teaching hospitals.

The longer the doctor cared for the patient, the stronger the doctor's emotional reactions, the study concluded. Physicians were moved by the deaths of strangers in their care, but they were affected more powerfully by patients with whom they formed close relationships.

"When you lose somebody you had a relationship with, you yourself grieve," said Lee Grumbles, MD, assistant professor of internal medicine and director of the palliative care program at the University of Texas Medical Branch at Galveston. "I get emotional. There are certain patients I cry about when I lose them. I think that's a healthy response for a doctor."

Dr. Grumbles said it's a doctor's responsibility to be available to patients in their final days. As an educator, she takes medical students and residents with her to visit dying patients. "So many doctors have never seen the actual moment of death," she said.

Dr. Grumbles remembers doing a rotation in the ICU as a third-year medical student. As she spoke with an elderly woman who was close to death, a doctor burst in and yelled at her for not completing her rounds. He wanted her to go, but she refused to leave the woman.

"He said, 'That's the job of the nurse.' I said, 'No, it's the job of the doctor.' "

Still, some physicians would rather say nothing and avoid a final farewell.

"Mostly, because it's hard. It's emotional. We walk away from the fire because it's too hot. We don't want to get too close or we'll get burned," said Perry G. Fine, MD, professor of anesthesiology at the University of Utah School of Medicine and former senior fellow of the National Hospice and Palliative Care Organization.

Experts say it's OK to show feelings, but not at the expense of compromising clinical care. "I have seen physicians who were so upset about the patient's demise that they were another person who needed to be cared for," said Porter Storey, MD, executive vice president of the American Academy of Hospice and Palliative Medicine. "Patients pick up on physician comfort or discomfort and they appreciate being cared for, but they also want you to be the doctor. To maintain that balance is tricky."

But when done properly, research shows that doctors can provide support to families whose loved ones are near death. A study in the Feb. 1 New England Journal of Medicine found that ICU clinicians who had proactive communication and spent more time with the family lessened the burden of bereavement.

"Helping patients and families deal with death and dying can be one of the most professionally rewarding satisfactions a doctor can have," said Joseph J. Fins, MD, a member of the American College of Physicians' ethics, professionalism and human rights committee and chief of the division of medical ethics at Weill Medical College of Cornell University in New York City.

The act of saying goodbye

Seattle oncologist Anthony Back, MD, taught doctors how to communicate better in end-of-life situations in a course offered in Colorado through the University of Washington. Funded by a grant, the course teamed oncologists with actors who played cancer patients. The physicians learned how to break bad news, sometimes telling patients they have weeks to live. They also learned how to say goodbye.

The course has ended, but Dr. Back is adapting another class for internal medicine residents at the Medical University of South Carolina and the University of Washington, where he is a professor.

An April 2005 issue of the Annals of Internal Medicine article authored by Dr. Back and other communication experts said doctors give a variety of reasons for avoiding goodbyes. A doctor might worry that the patient would feel abandoned or too sad. Physicians might feel uncertain of what to say and unprepared to handle the patient's emotions. And they may consider it unprofessional to show they are upset or sad.

Saying nothing leaves patients and families feeling perplexed and abandoned, according to the article. But saying goodbye can allow the physician to bring the relationship to a close and give the patient a sense of being valued. The goodbye gives the patient a chance to say thank you and lets the physician say how the patient contributed to the physician's learning.

"You can say how important the patient has been to you. That could be the goodbye," Dr. Back said.

To say goodbye, the article says doctors should:

• Choose an appropriate time and place that provides privacy.
• Frame the goodbye as an appreciation, saying how much they enjoyed the patient.
• Tell the patient they are thinking about her or him and are available if needed.

For his goodbyes, Dr. Back follows patients until the end and calls when they can't come to the office anymore. After a patient's death, he tries to phone a family member.

"That is kind of a closure for me, where I've seen the whole thing through," he said. "That actually helps me. It's kind of a healing."

Some doctors attend patient funerals. Dr. Chen, the Massachusetts transplant surgeon, said families have invited her and she went when she could. Dr. Grumbles, the Texas palliative care doctor, goes to about one funeral a month. She helps the family cope with grief.

As patients' deaths neared, Dr. Grumbles and other doctors held bedside vigils when their schedules allowed. One former nurse who came to the hospital with terminal cancer had no family, so Dr. Grumbles and other doctors took turns at her bedside. "We weren't going to let her die alone," Dr. Grumbles said.

Richard Hellman, MD, an endocrinologist in North Kansas City, Mo., has said goodbye many times. Some patients just want to hold his hand as their breathing gets more difficult and death nears. Sometimes, that's all he can do.

"We cannot always cure. We cannot always solve," said Dr. Hellman, president of the American Assn. of Clinical Endocrinologists. "We can always comfort."