Terminally ill patients need frank conversation about prognosis, cancer group says
January 24th, 2011
07:14 PM ET

Terminally ill patients need frank conversation about prognosis, cancer group says

 In an effort to improve the communications between doctors and patients, the American Society of Clinical Oncologists (ASCO) just released a new policy statement and a patient guide for conversations about the time when treatment options run out.

"While improving survival is the oncologist's primary goal, helping individuals live their final days in comfort and dignity is one of the most important responsibilities of our profession," says ASCO president, Dr. George W. Sledge, Jr.   The organization is urging its members to make the first move and initiate these very difficult conversations.

When a patient is told he or she has advanced cancer, the first thought is to fight it, beat the cancer. But what happens when the available treatments don't work anymore? What does the patient want their oncologist to do next? If patients don't have advance directives or a will, and never tell their doctors how far they want to go, it can have tragic consequences says Dr. Allen Lichter, a radiation oncologist and ASCO's CEO.

He gives an example where a patient with advanced, incurable cancer is rushed to the hospital in an ambulance in an area where emergency medical personnel have to put a breathing tube into a patient who stopped breathing.  Because he is intubated, the patient can no longer speak. Since there no advanced directives on how he wants to be treated exist, the patient spends the next 3 days in the intensive care unit (ICU) and then dies. The patient never had a chance to say good-bye to his wife and children, but the family is bankrupted by $25,000 in medical bills stemming from the stay in the ICU.

The point Lichter is making is that this same patient could have benefitted from hospice care. But as this new position paper points out, "the transition from a focus on disease-directed treatment to an emphasis on palliative care all too often occurs within days of the end of life."

"We [ASCO] support respecting patients wishes in the end but if we don't have the discussion and don't know what that is then we can't necessarily respect those wishes," says Lichter.

One reason why these discussions aren't happening is because patients and their doctors don't want to give up, which is why ASCO recommends this conversation occur early in the treatment process. "We do not necessarily insist that you do this" says Lichter, but he says more needs to be done to "remove barriers" that prevent these discussions from happening.

Another barrier is that Medicare will not reimburse doctors for taking the time to have these conversations. Just days after the latest provisions of the health care reform law kicked in at the beginning of the year, the government rescinded one that allowed doctors to charge for the end-of-life counseling or advance care planning.

Lichter suggests that fear of the so-called 'death panels' which were such a big part of last year's political conversation was probably looming large. But he points out that these are no easy conversations that can be dealt with in 5 or 10 minutes that are tacked on to a wellness visit. "These conversations can take hours," says Lichter.

He suggests that when someone is preparing a will, lawyers are paid for their services. Right now doctors can't receive Medicare reimbursement for having conversations about the medical decisions patients face.

"Surveys have shown about 85% [of patients] want to die at home," says Lichter, but he points out that most Americans – maybe up to 80% die in hospitals." Lichter adds that studies have shown when a patient dies in the hospital, depression in surviving family members is 4 times higher compared to family members whose loved ones die at home.

With this position paper, ASCO is calling on "physicians, medical schools, insurers and others to help improve quality of life for people with advanced cancer." The position paper gives concrete examples of issues doctors should address with patients: Do they want to participate in a clinical trial (only about 3% of adult cancer patients do – this is the research that leads to new drugs for future cancer patients); how to maximize quality of life; candid conversations about cancer treatments and alternative options (less than 40% of terminal cancer patients have these types of conversations). It also provides information for patients on its website http://www.cancer.net/patient/Coping/End-of-Life+Care/Preparation+at+the+End+of+Life.

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