Many cancer patients do not communicate their health care preferences at the end of life, either through written documents or by talking to loved ones, a study suggests. The study also found a large and growing number of people receiving intensive treatment in the last days and weeks of their lives.
The findings, published online on July 9 at Jama Oncology, underscore the need for patients to share their wishes for the end of their lives before they are too sick to do so, the authors said.
As the end approaches, many advanced cancer patients rely on their loved ones-as well as legal documents such as living wills and permanent notarial power-to ensure that the medical care they receive reflects their values, goals, and Treatment preferences.
The new study describes trends in advance care planning. Dr. Amol K, Narang of Johns Hopkins School of Medicine, and colleagues analyzed survey data on the use of advance care plans and end-of-life care talks from nearly 2000 participants in the prospective study Health and Retirement that died from cancer between 2000 and 2012.
The Health and Retirement study includes interviews every two years with a representative sample of Americans over 50 years of age. Two years after the death of a participant, a study investigator interviews a knowledgeable surrogate (often the closest relative) about the individual’s end-of-life care.
The researchers found that during the study period, the use of living wills and participation in end-of-life care talks did not change significantly among the study population.
By contrast, from 2000 to 2012, the percentage of cancer patients who designated the privileges of a permanent power of attorney to a loved one increased from 52 to 74%. However, about 40% of those responding to the survey said their loved ones have not talked to them about what care they would rather have at the end of life. And the percentage of patients who received “all possible care” as they approached the end of life rose from 7 to 58% during the study period.
The allocation of permanent power of attorney was related to the possibility of patients dying in an end-of-life care facility or in their own home rather than in the hospital. And patients who had a living will and who also had end-of-life talks were more likely to receive extensive treatment at the end of life than those who did not have either.
The results of the survey underscore the need to “find ways to move clinicians to talk to patients and caregivers about their end-of-life preferences,” Dr. Narang said in a news release.
If a patient’s treatment preferences have not been communicated explicitly, either in writing or in speech, then their substitutes “may fall into providing all possible care instead of limiting potentially intensive care, in order to prolong life “Said the researchers.
The study had several limitations, including the use of subjective survey questions and the possibility of memory errors of respondents to the survey, the study authors noted.
Cancer treatment in the United States remains “intensive, with evidence of increased rates of hospitalizations, intensive care unit stays, and emergency department visits in the last month of life, along with a persistently high rate of terminal hospitalizations, Late recommendations for end-of-life care services and heavy transitions when death approaches, “the authors wrote.
In the study population, 20 to 25% of terminal cancer patients died in the hospital, which is in accordance with previous reports.
For patients and their families, determining and expressing their end-of-life care values and preferences can be “a difficult and emotional exercise, sometimes with legalistic elements, and is often avoided,” said Dr. Michael J. Fisch of AIM Specialty Health in an accompanying editorial. “For many, the task seems intimidating and the benefit is hazy.”
The road to progress begins with “better communication by teams of trained and proactive clinicians,” Dr. Fisch wrote. “Advance instructions have inherent limitations and may be considered necessary at times but rarely sufficient to achieve optimal end-of-life cancer treatment for each individual patient.”
The main focus of health care providers, Dr. Fisch continued, should be on “fostering prognostic awareness, focusing on treatment goals rather than specific care and responding to emotions.”
The Outcome Notification Medicine Institute has called for evidence-based standards for communication between the patient and clinician and treatment planning in advance, which should lead to progress in the area, he said.