Treatment plus palliative
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.
Better informed consumers
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.”