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MAKING SURE PATIENTS GET WHAT THEY WANT AT THE END OF LIFE

A SINGLE SHEET OF PAPER, WIDELY DISTRIBUTED IN OREGON AND 15 OTHER STATES, ALLOWS PATIENTS NEARING THE END OF LIFE TO MAKE CLEAR CHOICES ABOUT WHAT KIND OF MEDICAL CARE THEY WANT TO RECEIVE. UNLIKE FORMS USED MASSACHUSETTS, THIS IS A SET OF MEDICAL ORDERS, SIGNED BY A DOCTOR. HEALTH PLANNERS IN MASSACHUSETTS WOULD LIKE TO IMPORT THE IDEA, SO THAT PATIENTS GET ONLY THE LAST ATTEMPT INTERVENTIONS THEY WANT. AS WBUR'S MARTHA BEBINGER REPORTS...THE PROGRAM COULD HELP CONTROL HEALTH CARE COSTS.

VIDEO: I remember sitting with my arm around my mother after my father died and we were talking gently about him (fade under)

BEBINGER: In this video reenactment a woman has just watched her father pass away in a nursing home when an EMS crew bursts into the room.

VIDEO: I said, do not resuscitate, and one fireman said, do you have orders to that affect and I said yes, but in the meantime, they grabbed the body, threw it on the floor and started pounding away…

BEBINGER: Many people who have lost parents or grandparents say their relative wanted a peaceful death…but that the obligation to try to keep a patient alive often undermines that wish. One reason, say organizers in Oregon, is that the forms used in most states…sometimes known as health care proxies…are not medical orders so medical providers…in an emergency…don’t always follow them. Oregon’s “Physician Orders for Life Sustaining Treatment” or POLST form spells out clear medical directions.

VIDEO: whether or not to resuscitate if the person is not breathing, a section of medical interventions, with choices such as comfort measures only (fades under).

BEBINGER: Susan Tolle, who directs the Center for Ethics in Health Care at the Oregon Health and Science University, says the POLST form is used statewide in nursing homes and hospice programs. A recent study of patients in 8 nursing homes found that they only received treatment they wanted.

TOLLE: Not one single person in a year, in the 8 nursing homes, got intensive care, ventilator support or CPR. This document works to respect patient wishes in their last chapter of life.

BEBINGER: In Massachusetts, members of a council looking for ways to improve health care and control costs are enthusiastic about the program.

LEE: There is no silver bullet but if there were a silver bullet this would probably be it.

BEBINGER: Tom Lee is the Network President for Partners Health Care and is on the state’s Health Care Quality and Cost Council. He says Partners is talking about making end of life wishes part of a patient’s medical record. But even with the right program in place, Lee says it will be hard to talk to patients about death.

LEE: I bring it up with patients and I would say half my patients are uncomfortable and don’t want to have the conversation. But when I do have the conversation, what I like about this document is that there’ll be a crisp, clear output so that we, the patient and the doctor, understand what we are going to do.

BEBINGER: There is the potential to save money if patients are not placed on respirators, hooked up to IVs or not hospitalized against their wishes. The Dartmouth Atlas Project, a program that tracks health care costs, says Medicare spends almost $19,000, on average, on Massachusetts patients with a chronic illness in their last six months of life. Oregon has not measured whether the POLST form saves money…and doesn’t plan to try. Dr. Susan Tolle says states should not even bring cost into the conversation about how to improve end of life care.

TOLLE: The backlash could be enormous if there is even the appearance of a desire to launch this program with the intent of saving money.

BEBINGER: Director of the Quality and Cost Council, Katherine London, says the group will not emphasize cost savings on end of life care. It will try to trim health care spending in other areas such as better management of chronic diseases, avoiding hospital based infections and giving patients more information about where to go for the best care at the best price. London says the goal for end of life care is to help patients decide what kind of last minute interventions they want and then to make sure those wishes are followed.

LONDON: If you have a terminal illness do you want to have your chest broken open and have extraordinary measures taken. There are all kinds of questions and people have very deep-set feelings about these, but it’s very important to have those set up ahead of time, before you’re brought into the emergency room.

BEBINGER: Council members are expected to discuss the next steps to bring the POLST program to Massachusetts at a meeting this morning.

That's the end of the story...but there are a few lingering questions. Organizers of the POLST program in Oregon say you can't talk even suggest that medical orders to guide end of life care might save money because that suggestion will breed mistrust and no one will participate. Do you agree? Is that area of spending off limits or are there other ways to shrink the jump in health care expenditures in the last six months of a patient's life?

This program aired on November 7, 2007. The audio for this program is not available.

Martha Bebinger Twitter Reporter
Martha Bebinger covers health care and other general assignments for WBUR.

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