Act sooner, not later, while you’re well enough to make the best choices

The best time to prepare for end-of-life care is before you need it, while your health still allows you to make decisions about your future medical care. Studies have repeatedly shown that early talks with doctors that let patients and families plan for the future make the last days of life more comfortable for patients and help their loved ones cope.

These discussions, specifically about the potential need for palliative or hospice care, three to six months or more before death, give the patients and their families more time to process the information, evaluate their care choices and make informed decisions about the future.

But not all patients get the opportunity to express their preferences for end-of-life treatment or help plan for their own care. Instead, many patients receive needless aggressive care that may reduce quality of life in their final days. Two new studies explain why this may be so and highlight the benefits of patients having early, frank discussions with their doctors about exactly what they want.

Transitioning from active treatment to comfort

According to one study, discussions between patients and doctors about end-of-life care more than 30 days before death were associated with less aggressive care and increased use of hospice care. Any discussions held closer to death reaped little benefit for patients and didn't seem to spare them from aggressive treatment such as chemotherapy in the last two weeks of life or from dying in the intensive care unit rather than at home.

Prior studies have shown that patients who use hospice have better symptom control and may even live longer. To reach their conclusions, researchers at Dana-Farber Cancer Institute collected data from a larger national study, the Cancer Care Outcomes Research and Surveillance Consortium (CanCORS). They examined the medical records of 1,231 people who had advanced lung or colon cancer, beginning from three months before their terminal diagnosis until their death. They tracked all documented discussions between patients and doctors about end-of-life care.

Focusing on quality of life

Patients who discussed preferences with their doctors early on seemed to have a clearer understanding of their mortality. When they recognized their cancer couldn't be cured, most decided on less aggressive care at the end of their life, preferring instead to focus on symptom management and quality of life. (This is what doctors do when they’re seriously ill.)

The timing of discussions affected care as well. About a third of the discussions were held less than a month before the patients died, and 65 percent of the patients were already hospitalized at the time—when it was probably too late to make end-of-life plans. Unfortunately, avoiding discussions about hospice may lead instead to patients going to the emergency room in severe pain and being admitted to the hospital.

Fully one-quarter of people with cancer die in the hospital, yet studies show they'd prefer to die at home. Patients whose discussions occurred less than a month before death were more likely to have aggressive, sometimes debilitating, treatment that would normally be aimed at prolonging life but would seem of little value to terminally ill patients. Patients can avoid the ER if they have early discussions and get hospice involved sooner—and subsequently live longer and better.

Seventeen percent of patients didn't recall having any end-of-life-care talks, even though the conversations were documented in medical records. Patients who received no end-of-life counseling hoped aggressive treatment, such as chemotherapy or intensive care, would cure them or extend their lives, when in truth this would never be possible, thus delaying referrals to more beneficial palliative or hospice care.

Preventing miscommunication

The authors of the study, published in the December 10, 2012 issue of the Journal of Clinical Oncology, suggest that some patients are unable to comprehend or recognize end-of-life discussions. The researchers call for more effective communication between patients and doctors and recommend that doctors regularly assess their patients' understanding of the situation.

National guidelines for oncologists recommend discussions about palliative and hospice care at the time advanced cancer is diagnosed, noting that counseling allows a patient the opportunity to have a voice in his or her own health care and planning, instead of leaving the decision up to the patient's family. The guidelines suggest a doctor who knows the patient well should initiate the talk. Waiting too long to bring up end-of-life care may force patients to have the talk with clinicians who are relative strangers.

Source: Prepared by the Editors of The Johns Hopkins Medical Letter: Health After 50

Publication Review By: the Editorial Staff at

Published: 17 Jul 2013

Last Modified: 17 Jul 2013