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End-of-life care rarely discussed

Despite expert recommendations meant to encourage talks, many still do not spend their final days the way they would have chosen

David Senior for the Boston Globe

On an average day in Massachusetts, 144 people die. One is an infant. A few are children. Some are middle-aged, most are over 75.

These observations lead a 32-page report, released nearly two years ago by a state-convened expert panel charged with recommending improvements to Massachusetts’s lagging system for end-of-life care.

Since then, few of the panel’s recommendations have been implemented. Precious final days for many Massachusetts residents are still not spent the way they would have chosen — at home with loved ones — but in a hospital. And health-care providers do not routinely discuss end-of-life care preferences with patients, said Dr. Lachlan Forrow, director of ethics and palliative care programs at Beth Israel Deaconess Medical Center, and chair of the expert panel.

“I am truly baffled,” Forrow said about the lack of progress. “We are making practical recommendations for everyone to be taken care of in the way he or she would want to be.”


Forrow’s panel, which included representatives from health care, religious groups, the state medical and hospital associations, nursing homes, elder services, and the Patrick administration, suggested Massachusetts launch a high-visibility public education campaign about the need for advance end-of-life care planning. It recommended training for caregivers, who often receive little guidance about discussing the sensitive issue with patients, and said facilities should be required to report training progress to state health officials.

The panel also suggested Medicaid be revamped to ensure that all low-income patients have insurance coverage for hospice care, and state websites post information about end-of-life services available at each hospital.

Budget cuts have stalled progress on many of the panel’s recommendations, health officials said, particularly ones that suggested the state develop regulations, monitor caregiver training, and post information for consumers.

State Medicaid patients in three health plans still do not have coverage for hospice care, although Patrick administration spokesman Alec Loftus said a request to federal regulators to allow such coverage in two of the plans is pending; the third, MassHealth Limited, will continue to exclude hospice coverage because it is intended for emergency medical care only.


There has been no progress on the suggestion to require reporting of caregiver training to state health officials, though the state’s Board of Registration in Medicine has since required two credits toward end-of-life training each time a physician's license is renewed.

Some studies have found that patients who receive easy-to-understand information about end-of-life options often choose home-based comfort care instead of medical interventions. One novel batch of studies led by Harvard Medical School researcher Dr. Angelo Volandes found that many patients shown simple but graphic videos about invasive medical treatments changed their end-of-life preferences to less aggressive approaches.

“I often hear patients say that pictures speak a thousand words, but video, hundreds of thousands,” said Volandes, 41, a Massachusetts General Hospital internist.

In a study published in December by the American Society of Clinical Oncology, Volandes’s team found that people with advanced cancer who only listened to a description of cardiopulmonary resuscitation, and its likelihood of success, were more than twice as likely to choose that treatment than those who also watched a short video depicting a patient hooked to a breathing machine, and CPR performed on a simulated patient.

Volandes produces the videos — created with input from more than 100 patients, families, and specialists — and said they are designed to give patients a realistic understanding of some of the aggressive end-of-life treatments glorified on TV and in the movies. The CPR video begins with a physician gently explaining that a hospitalized patient faces choices about the type of care received if his or her heart were to stop beating. She explains that CPR is an attempt to restart the heart but that “frequently CPR does not work.”


As she speaks, viewers see one doctor repeatedly pressing forcefully on the chest of a simulated patient, while another places a tube in the patient’s mouth.

The narrator explains that if a patient wants CPR attempted, that a ventilator, or breathing machine, may also be needed, which involves threading a tube down a patient’s throat to push air into the lungs. Viewers see footage of an elderly woman in a hospital bed, with a tube down her throat and surrounded by machines, as the narrator explains that patients on a ventilator cannot eat or speak.

After viewing the video, study participants are asked about their reactions.

“What we universally hear is, ‘I am a visual learner,’ ” Volandes said. “ ‘I heard the words you said, CPR and comfort care, but I had no idea that’s what you were talking about.’ ”

Volandes has been using his videos in his own practice, and he said discussions with several Massachusetts health-care systems could lead to wider use. They are already used in about 35 health-care systems in other states, he said.

The Massachusetts health-care cost containment law approved last summer requires the health commissioner to adopt regulations ordering each licensed hospital, nursing home, health center, or assisted-living facility to distribute to “appropriate patients” information regarding the availability of palliative care — care that prevents or relieves pain and suffering and enhances quality of life, including hospice care — and end-of-life options.


It does not define appropriate patients, nor does it say how the information should be distributed.

Andy Epstein, special assistant to the state health commissioner, said officials this month started discussions with end-of-life specialists to plan this initiative.

With limited money, the Patrick administration has employed a low-budget, grassroots approach, such as visiting senior centers to hold “kitchen table”-style talks about end-of-life care options.

“When we go to senior centers and talk to the seniors they say, ‘My kids don’t want to talk about this, they don’t want to upset me,’ ” said Ruth Palombo, assistant secretary of the state Executive Office of Elder Affairs. “Then when we talk to the kids they say, ‘My parents don’t want to talk about it.’ These conversations are hard to have.”

One of the panel’s recommendations is gaining traction. A state education campaign about MOLST — Medical Orders for Life-Sustaining Treatment — has been slowly introduced in roughly 169 hospitals, nursing homes, and home-care agencies, Epstein said.

The $400,000 annual campaign trains medical staff on initiating end-of-life conversations with patients to help them complete a two-page legal document that details specific treatments each patient would want or decline if acutely ill, such as CPR, or being connected to machines that pump air into their lungs or feed them through tubes.


The MOLST forms are more detailed than Do Not Resusciate orders patients more routinely encounter, which simply state whether patients want CPR if their heart stops.

Steward Health Care, a community-based network that includes 11 hospitals in Eastern Massachusetts, aims to use MOLST forms by April 16, said Dr. Marcy Carty, who is leading the initiative.

She said the year-long preparations to launch the project included an analysis of how Steward’s facilities would mesh each patient’s paper MOLST form with the system’s increasingly electronic medical records. Amid a nationwide push to convert paper health records to electronic files, some states, including Massachusetts, are choosing to keep MOLST forms on paper, so that they stay with each patient.

“We want to make sure we discover what our patients’ preferences are, that we document them, and that we meet those preferences,” Carty said.

The numbers

67% Massachusetts residents surveyed who say they want to die at home.

24% Massachusetts residents who die at home.

17% Massachusetts residents surveyed who say they have spoken to their physicians about end-of-life preferences.

SOURCES: Mass. Bureau of Health Information, Statistics, Research, and Evaluation; Mass. Commission on End of Life Care; Mass. AARP End of Life Survey

Kay Lazar can be reached at klazar