Studies Examine Doctor-Patient Communication about End-of-life Care

Two studies led by researchers from Dana-Farber Cancer Institute conclude that a frank, honest discussion with their doctor can help terminally ill cancer patients make informed treatment choices that may lead to better quality of life before they die.

Jennifer Mack, MD, who was involved in both studies, said, “It is very helpful for these conversations to happen relatively early, not in the last days of life or when the patient is very sick, but earlier in the course of the illness when there is still time to make good decisions about end-of-life care.”

Mack said it’s important for doctors to listen to patients and help them think through their values without preconceptions, so patients can determine goals for their medical care. Mack said, “Some patients will recognize they have a poor prognosis, but will want to receive aggressive care, while others will want to focus on quality of life and time at home.”

Aggressive care isn’t always the right care

One of the studies—published in the Journal of Clinical Oncology—measured the amount of aggressive end-of-life (EOL) care received by 1,231 terminally ill patients with stage IV lung or colon cancer.

The patients were part of a cohort — a study that follows a large group of people over time – called the Cancer Care Outcomes Research and Surveillance Consortium (CanCORS). The researchers defined aggressive EOL care as actions more likely to try to prolong life than to decrease discomfort. Examples include chemotherapy in the last 2 weeks of life, multiple hospitalizations or emergency room visits during the last month of life, being in the hospital for at least 14 days in the last month of life, admission to the intensive care unit in the last month of life, or use of medical interventions such as defibrillation, cardiopulmonary resuscitation, ventilator, or intubation.

Mack said one of the downsides of patients’ spending their last days in the hospital is that they’re giving up that time at home with family or friends. And she said the idea that aggressive care is life-prolonging care is potentially a misconception.

Mack said, “I worry about that when I see patients opting for aggressive measures. But for some, it’s important to feel they did absolutely everything. So when I see a patient who understands the options and is making a choice with eyes open it’s my goal to support that.”

Doctors and patients should talk sooner

According to Mack’s study, terminally ill cancer patients who talk to their doctors about EOL care at least a month before they die are more likely to choose therapy that is less aggressive – therapy aimed more at making them feel better than at prolonging life.

In the study, those who had EOL talks with their doctor more than a month before they died were more likely to receive hospice care. They were also likely to start receiving hospice care earlier. Hospice care is designed to manage symptoms so that the patient is as alert and pain-free as possible in the last days of life. Sometimes this means discontinuing chemotherapy and/or radiation.

The study’s authors suggest that doctors initiate the EOL discussion soon after a diagnosis of incurable cancer to give patients time to process the idea that their life is nearing an end so they have a chance to make thoughtful decisions about their care. Having the discussion before the patient’s health deteriorates may help them think through their options more carefully.

Patients often over-optimistic

Another study led by researchers at Dana-Farber Cancer Institute concludes that any efforts to include earlier and more effective EOL care must address patients’ unrealistic expectations about the goals of chemotherapy. The study found that most patients with incurable lung or colon cancer who are getting chemotherapy mistakenly believe that it can cure them.

The researchers conducted surveys and reviewed the medical records of 1,274 stage IV lung and colon cancer patients in the CanCORS cohort who were receiving chemotherapy. They found that 69% of the lung cancer patients and 81% of the colon cancer patients did not understand that the chemotherapy they were receiving was not likely to cure their disease.

Although people with advanced lung or colon cancer are often treated with chemotherapy, it is not likely to cure them. Treatments such as chemotherapy, surgery, and radiation therapy may make patients feel better by relieving symptoms. They may also help patients live longer, by weeks or months. The study’s authors state that a realistic understanding of the likely benefits of chemotherapy is needed in order for patients with advanced lung or colon cancer to make an informed decision about treatments and prepare for death. The study is published in the New England Journal of Medicine.

Ironically, patients in the study who rated their communication with their doctor highly were more likely to be over-optimistic about chemotherapy’s ability to cure them. Mack said that is one reason doctors are sometimes reluctant to initiate an EOL conversation.

She said, “These are very hard discussions to have. They are obviously painful and sad for patients and families and for us as physicians. This is one of those times where we see this negative impact of delivering bad news and it’s such a hard thing to do it makes some physicians sometimes want to avoid the conversation or to portray the prognosis in a more optimistic fashion because it feels better, but ultimately it takes away the opportunity for the patient to make good decisions.”

Mack said programs have been developed to train oncologists to have these talks in ways that are thoughtful and compassionate and supportive of patients. She also said patients can be advocates for themselves. Mack said, “One way that patients can help themselves here is to ask these questions about what’s ahead if the physician is not speaking to it. If patients want to know if death is a possibility, having the courage to ask and initiate those conversations themselves can give them information they want and need and may not get otherwise. I’m not saying it’s the patient’s responsibility, but patients shouldn’t be afraid to ask these questions—because they can be important.”

The American Cancer Society medical and editorial content team
Our team is made up of doctors and master's-prepared nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.

Associations Between End-of-Life Discussion Characteristics and Care Received Near Death: A Prospective Cohort Study. Published in the December 10, 2012 issue of the Journal of Clinical Oncology (Vol. 30, No. 35). First author: Jennifer W. Mack, MD, MPH, Dana-Farber Cancer Institute, Boston, Mass.

Patients’ Expectations about Effects of Chemotherapy for Advanced Cancer. Published in the October 25, 2012 issue of the New England Journal of Medicine. First author: Jane C. Weeks, MD, Dana-Farber Cancer Institute, Boston, Mass.

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