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More awareness and new state laws regarding end-of-life treatment are affecting treatment approaches. Here’s what you need to know.
All patients have at least two choices when it comes to end-of-life care: curative care and palliative care. But a handful of states have moved forward to give patients greater control over how they end their lives as well.
According to the Death with Dignity National Center in Portland, Oregon, whose mission is to promote Death with Dignity laws based on the Oregon Death with Dignity Act, a legal prescription for life-ending medications is only available in states with Death with Dignity laws.
At press time, California, Colorado, the District of Columbia, Oregon, Vermont, and Washington have such statutes. Life-ending prescriptions are also legal in Montana, due to a 2009 State Supreme Court ruling. “It is hard to generalize about state-based trends because only a relatively small number of states have adopted Death with Dignity laws thus far,” says Tricia Neuman, senior vice president of the Henry J. Kaiser Family Foundation. “But it is fair to say that discussions about end-of-life care are receiving more attention. There may even be growing interest among health plans and medical schools in providing health professionals with the skills they need to have difficult but important conversations with their patients about their end-of-life wishes.”
This greater focus on end-of-life care is partially due to the aging of the population and concerns that people may not be receiving the care they desire. “As individuals reach advanced stages of their lives, they may not have had an opportunity to discuss their preferences with their family or doctors,” Neuman says.
According to a recent Kaiser Family Foundation survey, only 25% of older adults say they have shared with their doctor their written wishes about end-of-life care.
End-of-life care has also garnered attention because of the high cost associated with medical care in the last year of life, particularly impacting Medicare and to a lesser extent Medicaid, according to Neuman, director of the foundation’s program on Medicare policy.
“When people in Medicare HMOs and PPOs elect hospice, they disenroll from their Medicare Advantage plan to get hospice care under traditional Medicare,” Neuman says. “Medicare Advantage Plans cover Medicare-covered services, but not hospice.”
Neuman says end-of-life discussions between patients and their physicians are difficult, yet have less to do with policy than culture. “Medicare recently modified its payment rules to allow doctors to bill Medicare for visits which are exclusively focused on end-of-life discussions,” she states.
There is also a trend to help patients avoid ending their lives in a manner that is inconsistent with their wishes; for example, with feeding tubes or in an intensive care unit rather than at home with supportive services.
“Even with greater interest in improving end-of-life care, about four in ten older adults do not have advance directives and many say they have not had conversations about their preferences with their doctors,” Neuman says. “Often, these decisions are made at a time when individuals are unable to make decisions for themselves.”
Patients now have options for palliative care that include active treatment for the disease and a comfort-oriented approach to help control pain and/or symptoms, says John Mastrojohn, RN, vice president and CEO of the National Hospice and Palliative Care Organization (NHPCO), the nation’s largest nonprofit membership organization representing hospice and palliative care programs and professionals.
On the other hand, hospice care is a subset of palliative care, “specifically for people who have a life-limited illness,” Mastrojohn points out. “In the United States, we define a life-limited illness as approximately six months or less to live, if the disease runs its normal course.”
Today, there are more hospice providers than ever, according to Mastrojohn, who before joining NHPCO in 2004, operated the hospice and palliative care program at Summa Health System in Akron, Ohio. “This trend obviously allows for greater access,” he says. “The primary option for people at the end of life is hospice care, mostly in the patient’s place of residence. Typically, it is the person’s own home, but it can also be a nursing home or other facility.”
With the passing of California’s End of Life Option Act in 2016, which permits terminally ill patients to be prescribed an aid-in-dying medication, and the Terry Schiavo “right-to-die” legal case, “there is an increased knowledge about what the options are available to people,” Mastrojohn says.
Mastrojohn says managed care organizations may not be adopting end-of-life protocols yet, “but are becoming more and more comfortable with conversations about end-of-life care. Having those conversations and having those conversations earlier is helping people understand their options and for them to have autonomy and control over decision-making. For managed healthcare systems, you have a better-informed consumer.”
Richard Parker, MD, chief medical officer at Arcadia Healthcare Solutions, which provides population health management services to plans and providers, says that although legal euthanasia receives a lot of press, “it is a very tiny number of patients who truly need to exercise that option. The fact of the matter is that with good hospice care and good palliative care, 99% of patients can die peacefully and relatively comfortably, without the need for terminating their own lives.”
Going forward, Parker predicts more states will pass euthanasia laws. “I think it is a national social trend like legalizing small amounts of marijuana, legalizing gay marriage, and allowing patients autonomy over their end-of-life choices,” he says. “Euthanasia is part of the national movement that politics is not going to halt.”
Managed care organizations, which have both financial and clinical responsibility, “are extremely sensitive, as they should be, to any appearance of conflict of interest in promoting euthanasia,” Parker says. “Specifically, accountable care organizations (ACOs) cannot say that they are ‘interested’ in having patients die sooner in order to save money. As a consequence of this sensitivity, I think managed-care organizations have pretty much stayed out of the debate.”
Parker says oncologists and hematologists are often reluctant to halt chemotherapy/radiation and transition patients to hospice and palliative care. “I think this is an area that frankly deserves a lot more attention,” he says. “These treatments can sometimes be deleterious in the last months of life.”