By Felice J. Freyer
Boston Globe StaffNearly all doctors believe it’s important to talk with patients about the care they want in their final days. But most physicians work in systems that provide little help, and often they don’t know what to say or when to say it, according to a survey released Thursday.
The findings come as Medicare begins paying for end-of-life conversations and as many aging people fear spending their last days tethered to machines in a hospital. Questioning a representative sampling of 736 physicians in 50 states, the study identified an array of barriers, practical and emotional, to having the painful talk about care near death.
“These conversations are just insanely difficult, whether in the emergency room or the hospital or the office,’’ said Dr. Ziad Obermeyer, an emergency physician and Harvard Medical School professor, who was not involved with the survey. Obermeyer’s own research has shown that physicians play a critical role in end-of-life decisions.
The new survey found three-quarters of physicians believe they are responsible for initiating end-of-life conversations. But almost half frequently or sometimes feel unsure of what to say.
The results ring true to Dr. Richard Lopez, senior vice president of population health for Atrius Health, a large Massachusetts medical practice. He noted that two-thirds of survey respondents cited lack of time as a barrier. “The time pressures are real in primary care practice,’’ Lopez said.
Lopez also identified with the 60 percent of doctors who said they often failed to raise the issue because they weren’t sure the time was right. “If you have [the talk] too early, it may not be meaningful or clear enough,’’ he said. “If you have it too late, they’re struggling with their illness and may feel . . . that you’re giving up on them.’’
Most doctors in the survey, 95 percent, support the Medicare reimbursement for end-of-life conversations, and 75 percent say the new benefit, which started in January, makes them more likely to have those conversations. But only 14 percent had billed for such conversations in the first two months.
Supporting the benefit but not billing for it “just seems to me like a huge, huge disconnect,’’ said Dr. Anthony Back, codirector of the Cambia Palliative Care Center of Excellence at the University of Washington, which is connected with one of the survey’s sponsors. When patients fail to find doctors or nurses ready to discuss their wishes, he said, they often end up in an intensive care unit with tubes down the throat and intravenous lines in the neck.
Doctors should start talking in a general way with patients when they first seek any kind of care, Back said. When the patient develops a serious illness, those conversations should resume, with more intensity as the illness progresses.
The early talks might focus on patients’ values and how they would like to spend their final days. After patients become seriously ill, doctors can start addressing specific questions, such as whether they will want a feeding tube or ventilator.
Terry Fulmer, president of the John A. Hartford Foundation, one of three foundations that commissioned the survey, said advanced care planning — the process of documenting treatment wishes and selecting people who can speak for a person who is incapacitated — “is not just an extra . . . it’s just as important in its own way as chemotherapy or surgery.’’
The survey included only doctors who regularly take care of patients 65 and older. Three-quarters see many patients who could die within a year. The majority were primary care doctors, but the survey included 266 physicians who specialize in pulmonology, cardiology, or oncology.
Although many doctors are unsure about what to say to seriously ill patients, only 29 percent have had formal training in conducting these end-of-life talks. The same small percentage work in a practice or health care system that has a formal way of assessing patients’ end-of-life wishes. Yet those who receive training and institutional support are more likely to have end-of-life conversations.
Electronic medical records could be a big help, but fall short for a large minority of doctors. The electronic records can flag whether patients have documented their wishes for care, but only 59 percent of physicians reported using such a program. Among those, only a little more than half are able to read the patients’ wishes.
Dr. Lachlan Forrow, director of ethics and palliative care at Beth Israel Deaconess Medical Center in Boston, called the survey results a helpful guide. “We’re not going to solve the problem until we understand it more deeply,’’ he said.
Forrow saw in the findings evidence of a culture shift. Few doctors said having end-of-life talks is not their job, a response that would have been commonplace years ago, he said. He was also heartened to see that, when asked about the value of such talks, most doctors mentioned a desire to honor patients’ values and prevent unnecessary and unwanted hospitalizations, and fewer listed saving money as a goal.
Conducted Feb. 18 to March 7 by PerryUndem Research/Communication, the survey was commissioned by the Hartford Foundation, California Health Care Foundation, and Cambia Health Foundation. The foundations intend to follow up with focus groups of physicians, nurse practitioners, social workers, physical therapists, and others who work with seriously ill patients.
Felice J. Freyer can be reached at felice.freyer@globe.com.

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  Time For An Update?     With all of the information now available, is it time to update the standard form of a living will?     In January of this year an article in the New York Times started me on this road.  “Complexities of Choosing An End Game For Dementia” was written due to Jerome Medalie, a lawyer, who took dementia into consideration when writing his health care directives.  His motto is, “If I’m not me, I don’t want to be.”     As we all know, this disease can cause a prolonged period of complete incapacity, years in a state of lingering death.  While the current state-sanctioned and offered Living Will forms are fine for what they cover.  However, dementia affects 30 percent of us over the age of 85.  In its late stages it is hardest on our loved ones.  Many are now in search of a new “End Game,” and additional instructions are necessary.      Language would be needed to specify an irreversible and substantial loss of cognitive as well as physical abilities.  This should be followed by examples of what you feel would create a situation where you would have no quality of life, i.e. be unable to recognize or interact with your loved ones, have a complete lack of awareness of your surroundings, and/or not be able to participate in your own care.      To the extent that the law allows, you would be authorizing your health care provider and agent to follow your wishes to withhold or withdraw life support systems such as cardiopulmonary resuscitation, artificial respiration, and means of providing nutrition and hydration.      Our knowledge of this particular affliction gives us an opportunity to expand the current Living Will form.   We can specify what we would deem to be our quality of life issues and end our lives within a framework of our own choosing rather than allowing the disease to dictate.       Until the states’ forms are amended, if this is something you wish to take into account when creating or amending your living will, then legal advice is advisable.       Hopefully, in the not too distant future, all issues will be included to enhance the ability to express our wishes and make our end of life as comfortable and dignified as possible, while at the same time removing the burden from those who love and care for us.                               
Louise Kaminer LCSW                                                                                       
Stamford, CT