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.Continued...