People are dying in more pain and with more psychological stress today than in 1998. This seems outlandish, but so says a new 12-year study, recording the final year of life experiences of over 7,000 terminally ill individuals. The results are unsettling: the chance of being in physical pain increased by nearly 12%; psychological distress, depression and confusion increased by over 26%.
“Dying is not easy, but it needn’t be this hard,” according to Dr. Ira Byock, a palliative care expert, responding to the study’s findings in a New York Times op-ed. His piece, Dying Shouldn’t Be So Brutal, argues that Americans approaching the end of their lives “deserve the security of confident, skillful attention to their physical comfort, emotional well-being and sense of personal dignity.” Their families, Byock assets, “deserve respect, communication and support.”
What should be done? As outlined in a recent Institute of Medicine report, Dying in America, these changes include requiring medical schools to train future doctors in palliative care and also in how to have difficult conversations with patients about coping with illness and the end of life.
But that’s not enough, Byock argues. To effect these changes, the public needs to demand them. Specifically, Byock says, “we need outrage.” Outrage of the same type that the baby boomers of the 70’s used to create hospice care and reform childbirth practices. He paints a picture of a citizen-based movement to create a “Safe Dying Act.” This act would ensure that new doctors coming out of medical school would in fact be trained to help people cope with the ends of their lives. Nursing homes would be better staffed so residents could get the proper care and attention they need. And perhaps most important of all, such an act would repeal the rule that Medicare beneficiaries must “give up” on treating their illness in order to receive hospice care.
Boomers – are you looking for the next challenge? This could be it.
Randi J. Siegel, MBA, is the President of DocuBank (docubank.com), which ensures that the emergency information and healthcare directives of its 200,000+ enrollees are available 24/7/365 through the largest advance directives registry in the U.S., as well as access to an online safe for storage of digital assets and other vital documents. Working with estate planning professionals since 1997, Randi frequently speaks at national estate planning conferences and has appeared on radio and television as an authority on registries. A member of the Philadelphia Estate Planning Council, the International Society of Advance Care Planning and the Coalition to Transform Advanced Care, Randi is active in health education and public engagement related to advance care planning/advance directives. She serves as Pennsylvania liaison to the National Healthcare Decisions Day initiative and as a board member of the Center for Advocacy for the Rights and Interests of the Elderly. Randi is an ongoing contributor to the Academy blog.
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