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What does DP do at patient EOL?
Care continuity still necessary, expert says
Hospitalized patients with terminal illnesses often feel abandoned by their physicians at the end of their lives. Their physicians might experience a lack of closure that is unsettling.
While no physician plans to abandon a dying patient, this often is what happens, particularly when the patient's crisis leads him or her to the hospital.
Here's a case study example: a 72-year-old woman entered a hospital emergency room with complaints of acute pain caused by metastatic cancer. The woman had no family in her Arizona community, and she was admitted only after she claimed to be unable to care for herself at home. Her community physician was out of town and unavailable.
The hospital provided treatment for her pain and begins to prepare for surgery, but it was soon discovered that the cancer is too widespread to warrant surgery. The hospital prepared to discharge the woman to a cancer specialty center that could identify the origin of her cancer, but the patient declined this transfer, saying she did not want to be transferred for further tests and could not withstand the pain or take care of herself if she were sent home.
Meanwhile, the patient expressed feelings of anger and abandonment by her physician and the hospital. The physician did not interrupt his vacation to check on her condition after she was hospitalized, and, from her perspective, the hospital seemed eager to get rid of her.
The solution ended up being a transfer to a residential hospice center that had inpatient, acute care beds. The woman's Medicare benefit paid for the acute care stay, and the woman did not live long enough to be discharged back to the community.
This type of situation is all too familiar to oncologists and other physicians who try to help patients make an end-of-life transition, according to a study about abandonment of patients at the end of life.1
"The main finding of our study was that although physicians were conscious of not abandoning their patients at the end of their lives, the patients still could be abandoned because they were sent to hospice and there was no follow-up by the doctor," says Anthony Back, MD, a professor of medicine at the University of Washington, Fred Hutchinson Cancer Research Center and a gastrointestinal oncologist at Seattle Cancer Care Alliance in Seattle, WA.
"At the time of the patient's death, the patient might not hear from the physician, and that led family members to feel like they had been abandoned," Back says. "Physicians said it felt like a lack of closure for them, but they didn't recognize the effect it had on their patients."
For example, one family member interviewed by researchers was crying and saying, "Gee, I know he's busy and has lots of patients, but we had been through so much together that I was surprised we didn't hear from him at the time of death," Back recalls.
"The physician said, 'I was out of town when the patient died, and when I got back in town I wasn't sure if I should call because I might stir things up,'" he says. "It was a little poignant. The doctor wouldn't have stirred things up, but he could have helped the spouse heal a little by acknowledging her grief and everything they had been through together."
Clearly, when dying patients are transferred from the hospital to hospice care, the hospital and hospice nurses will do a good job of ensuring a smooth transition, Back notes.
"But it's not always clear to the patient how much the physician is involved," he adds.
What the study shows is that patients are very attuned to how doctors and nurses think of them as regular people, as human beings, as opposed to just diagnoses, Back explains.
"So, it's incredibly important to us that we make sure we're respectful with that part of our relationship, and we need to learn how to integrate the biomedical part of our work with the humanistic part of our work," he says.
From a hospital discharge planning perspective, it's important to automatically follow up on patients who are transitioned to hospice care, Back says.
Someone should assist them with making an appointment to see their community physician, which helps them return to a regular routine in their lives.
"It's very powerful for patients, and it's an easy thing to do," Back says.
"The other thing I would recommend is that when a provider finds out someone has died, then he or she should call the family member and ask how things went," he adds. "You can express whatever seems authentic to you, like, 'I appreciate how hard you worked on behalf of your husband, wife, son, daughter.'"
1. Back AL, Young JP, McCown E, et al. Abandonment at the end of life from patient, caregiver, nurse, and physician perspectives: loss of continuity and lack of closure. Arch Intern Med. 2009;169(5):474-479.
Anthony Back, MD, Professor of Medicine, University of Washington, Fred Hutchinson Cancer Research Center; GI Oncologist, Seattle Cancer Care Alliance, 825 East Lake Avenue East, Seattle, WA 98109.