End-of-life care metric tracks how time grows more valuable for terminal cancer patients

A research team at Lund University in Sweden has studied how patients with advanced cancer seek care during the final stages of their lives. By studying their care patterns, the research team has developed a measurement method that relates health care needs to the changing value of time for patients at the end of life. The less time they have left to live, the more precious time feels. The work is published in the journal Value in Health.

Every year, just under 1% of Sweden’s population dies, yet those deaths account for 10% of health care resources. A large proportion of the cost goes toward hospital stays, even though many patients would prefer to avoid intensive treatment in their final days. This imbalance raises important ethical questions about value and fairness in health care, and about how resources should be allocated when each day becomes more valuable as one gets closer to death.

“It remains the case that we are probably providing potentially unnecessary medical care to patients with serious illnesses. If, instead, we could adjust the timing and course of their treatment when we see things going in the wrong direction, patients’ quality of life could improve during their final days,” says Jenny Klintman, a researcher at Lund University and a consultant physician at the Oncology Department at Skåne University Hospital.

In the study, which involved 192 patients in northeastern Skåne, the researchers examined the patients’ care pathways with regard to when, where and how often they sought care during the final stages of their lives.

They were then able to identify patterns and determine the number of visits to A&E and hospital admissions made by people with serious illnesses, and at which points in the health care system they were treated and ultimately died.

“We noticed, for example, that after a couple of visits to A&E, patients are often readmitted for a longer stay. At that stage, the care team could intervene to discuss the transition from curative treatment to care that relieves symptoms, and refer the patient to specialist palliative care. Sometimes we need to have the courage to stop a course of treatment when there is a risk that it will not benefit the patient,” continues Klintman.

Tools for better health care decisions

Klintman believes there is a high level of awareness within the health care sector of the problem of patients being treated in the wrong place, which may be due to a lack of continuity, poor oversight and stress. Improving health care will therefore require methods of measuring how resources are used. The study, which is based on an analysis of care pathways, is a clear tool that could form the basis for improved clinical decisions.

“Toward the end of life, every day takes on ever-greater emotional and existential significance, and each day is experienced as more precious. Relationships, small pleasures and meaningful activities become relatively more important. At the same time, spending their final days in the hospital places an increasing strain on the patient.”

To reflect this shift in the burden experienced by the patient, the research team devised a measurement method that frames health care interventions in relation to the changing value of time. The measurement method is based on economic, mathematical and ethical principles, whereby the importance of each day increases as life nears its end. Though the patient’s time is running out, each day feels more precious.

“For someone who has only weeks left to live, every day becomes infinitely more precious than a day for someone who is not ill. This makes it even more important to use the time you have on things that feel meaningful, and not to spend more time in the hospital than is necessary,” says Juliet Jacobsen, a doctoral student in medical oncology at Lund University and a consultant physician in palliative care at Massachusetts General Hospital in Boston.

In health care, the term “time toxicity” is used to refer to the time a patient spends on hospital visits, treatments, travel to and from the hospital, and side effects.

The researchers compared patients who were in the late stages of their illness and were not receiving specialist palliative care with those who had been admitted to a palliative care unit at an early stage.

The result for patients who gained access to, for example, specialized palliative home care was that their time toxicity was significantly reduced, as they no longer had to be shunted between different health care providers and receive treatments that led nowhere.

“Living with a terminal illness is about relationships and culture, not just medicine. How you spend your final days, and with whom, will shape your family’s memories and identity long after your death,” says Juliet Jacobsen.

She believes that health care staff need to look beyond mere treatment and life-prolonging measures and have the courage to discuss with patients what they feel is important in the final stages of life. Yet many people are reluctant to discuss a patient’s prognosis, often because they fear causing anxiety or lack experience in conducting sensitive conversations.

This makes it difficult for patients to get a clear picture of their condition and the treatment options available. The model involving a conversation about the patient’s serious illness highlights the patient’s perspective and what is important to them during the final stages of their life. The model is currently being rolled out in various parts of Sweden and provides practical support for health care staff during difficult conversations.

“The government’s latest cancer strategy highlights the importance of timely palliative care—something that the Swedish Cancer Society also emphasizes as being crucial to patients’ quality of life. It is important that we don’t just ‘soldier on,’ but dare to ask the right questions to give patients the opportunity to set priorities and reflect on the final stages of their lives,” concludes Klintman.

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Gaby Clark

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Andrew Zinin

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