‎In July, Jennifer O’Brien received a phone call that adult children fear. His 84-year-old father, who insisted on living alone in rural New Mexico, broke his hip. The neighbour who found him on the floor after he collapsed had called the ambulance.‎

‎Ms. O’Brien is a health care administrator and consultant at Little Rock, Arc, and the widow of a palliative care doctor. She usually knew more than the family members what was going to happen next.‎

‎James O’Brien, a retired businessman, was in poor health, suffering from heart attack and lung disease after decades of smoking. Due to a spinal cord injury, he needed a walker. He was so short of breath that in addition to a quick break during meals, he relied on BIPAP, a ventilator that required a tight-fitting face mask.‎

‎Ms O’Brien said she had orders to “not revive” and “not to revive”. They had discussed his firm belief that “if his heart stopped, he would mean it was his time.”‎

‎When a nurse at the hospital was talking to her father about her options, hearing on the phone, Ms. O’Brien always gave a blunt translation to the blunt man: “Father, your heart and lungs are fine.‎

‎The next day, he refused surgery to repair his hip. A surprised anesthesiologist and an orthopedist called their daughter, apparently hoping to speak to her father to agree to the operation. He didn’t try.‎

‎”He was dying,” he said in an interview. “He will either die comfortably or, with a large surgical incision, he will die uncomfortably. Or die from something more complicated – potential infections, intestinal obstructions, a lot of things that can happen. The mortality rate after a hip fracture, although getting better, is high.‎

‎His father, who was not mentally retarded, had decided that the surgery was “stupid” and unnecessary. He supported her decision and approached a local hospital.‎

‎Families often have to intervene in such situations, and a new study at JAMA Network Open helps explain this. The authors from case Western Reserve University School of Medicine analyzed five years of data from the Cancer Registry, nursing home diagnosis, and Medicare claims to look at “end-of-life aggressive care” in 146,000 older patients with metastatic cancer.‎

‎Saran Kurukyan, a health services researcher at Case Western Reserve, said they compared nursing home residents’ care for the last 30 days of life with the care of non-institutional patients living in communities.‎

‎The team looked for signs of commonly used invasive care, including cancer treatment, frequent emergency room visits or hospitalizations, intensive care unit admissions, lack of hospital enrollment up to three days before death, and hospital death.‎

‎”There is a strong possibility that hospice should have been considered for these patients,” said Sarah Douglas, an oncology researcher and co-author of case Western Reserve University School of Nursing.‎

‎Yet the majority of both groups – 58 per cent of community residents and 64 per cent of nursing home residents – experienced aggressive treatment in their last 30 days. A quarter underwent cancer treatment: surgery, radiation, chemotherapy.‎

‎While studies have repeatedly shown that most patients want to die at home, 25 percent of community residents and about 40 percent of nursing home residents died in hospitals.‎

‎Hospice leaders, palliative care specialists, health care reformers and advocacy groups have worked for years to try to reduce such numbers. “Patients receiving this type of aggressive care experience more pain, in fact die sooner, ultimately greatly worsening the quality of life. And their families face more doubts and trauma,” Dr Douglas said.‎

‎Because the researchers used big data BRs, the study cannot identify whether some patients have actually opted for continued treatment or hospitalization. Some treatments that the authors considered invasive may instead be soothing, intended to increase comfort, such as radiation to shrink tumors that can disrupt breathing.‎

‎”These are really disturbing statistics,” said Douglas White, director of the Center for Ethics and Decision Making in Critical Illness at the University of Pittsburgh School of Medicine.‎

‎Many factors play a role in aggressive operations in patients’ last days and weeks. Some are born within the health care system itself. Doctors may hesitate to initiate difficult conversations about what dying patients want, or may be poorly trained to perform them.‎

‎Dr Douglas said, “As soon as you talk about it, people think, ‘You’re withdrawing from me.’ Even having a prior directive and a physician order for life-sustaining treatment or POLST does not always avoid aggressive treatment.‎

‎But studies also show that even when important conversations occur, patients and surrogate decision-makers often misinterpret them. “Families often leave these conversations with more promising expectations from their doctors,” Dr. White says.‎

‎His research has documented the effects of optimism bias. Surrogates understand positive prognoses more accurately than negative ones. They may understand that most people will die in this situation, but insist that their particular loved one is different, intense, strong. False hope then leads to more aggressive treatment.‎

‎Sometimes, family demands also override the patient’s own wishes. Jennifer Ballantine, chief executive of california’s Coalition for Compassion Care, knew that one of her relatives did not want much care if she was seriously ill. But when he was diagnosed with prostate cancer at the age of 79, his wife insisted that he get treatment.‎

‎”He refused. They kept saying that they just wanted to stay in the hospital,” Miss Ballantine recalled. “She kept saying, ‘Not at all. He remained silent until he died in hospital care after three months of chemotherapy, staying in several hospitals.‎

‎The health care system can improve end-of-life care. A study on people with metastatic lung cancer has shown that when palliative care is introduced immediately after diagnosis, patients’ quality of life improves and depression decreases. Although they were less likely to undergo aggressive treatment, they lived longer.‎

‎However, palliative care doctors specializing in critical illness conversations are rare in some parts of the country and in outpatient practices.‎

‎Adopting a so-called parallel care approach for hospice can also facilitate these changes. Medicare hospital benefits require patients to give up treatment for their last illness. Hospice through the Veterans Health Administration system, with a more liberal standard, allows patients to receive both treatment and hospice.‎

‎A recent study conducted on veterans suffering from the late stages of kidney disease, who are likely to die within a few days if forced to discontinue dialysis, shows the effects of concurrent care. Resting dialysis — less frequently or for shorter periods of time than standard procedures — can help control symptoms such as shortness of breath.‎

‎Dr Melissa Wachterman of Harvard Medical School says, “There is a need to stop treatment that is helping your quality of life, which can mean that you will not sign up for hospice.‎

‎In their study, veterans who discontinued dialysis when they were admitted to the hospital received only four days of care before dying, so little that even specialist hospitals found it difficult to provide full support. Almost all patients received simultaneous dialysis through the VA received hospice care for an average of 43 days.‎

‎Medicare has allowed simultaneous care pilot studies, but currently, patients and families often have to occupy the reins to demonstrate their end-of-life aspirations and determine how to fulfill them.‎

‎Some patients want to do everything possible to extend their lives, even briefly. For example, former President Jimmy Carter thinks that for those who feel the opposite, asking about palliative care and hospitals can open the door to direct conversation.‎

‎James O’Brien was one of the latter. His daughter drove 12 hours from Little Rock to Santa Fe, spending a quiet day with him. “We had some good time together,” he said. “We talked about what was going to happen.”‎

‎She was there as the hospital team provided her with medicines to keep her comfortable and withdrew BIPAP. “It was very peaceful,” he said. “I told him I loved him. I knew he could hear me. I stayed with him till he breathed his last.‎