Here at The Oldish, we try never to shy away from conversations that may be uncomfortable but will ultimately lead to a better quality of life and hopefully a better death. End-of-life planning is one of those topics that most families don’t like to discuss but failing to create an advance care directive can lead to confusion and stress during an already difficult time as well as unwanted medical intervention. But even when a patient has talked with their doctor about their wishes for life-sustaining medical treatment, a system has yet to be established in which hospitals can quickly and reliably retrieve records regarding end-of-life plans.
According to a recent New York Times article, without a nationwide standard, patients who had expressed the wish for no further heroic measures, such as intubation, may be mistakenly resuscitated during an emergency. Doctors may note a patient’s end-of-life wishes in their progress reports but electronic records systems vary between hospitals making these notes hard to find without a national registry.
A number of private apps and software programs are being developed to help patients let their wishes be know to health care providers and family. Cake, a digital startup out of Boston, has created a user-friendly online platform that guides people through end-of-life planning and advance care decisions. When you are ready, you are able to share your profile with loved ones or your primary care physician. While helpful, the software doesn’t solve the problem of getting the information in a doctor’s hands quickly during a health care crisis. And although a smartphone app may be helpful, patients may not have their phone with them when admitted to hospital or be able to ask someone to search it for a directive.
Mistakes are made regarding life sustaining treatment occur all too often; a 2003 Seattle Public Health study found that 35 per cent of 911 calls from long-term care facilities for people in cardiac arrest were for patients with a standing do-not-resuscitate order. Without a better way to quickly access and respect a patient’s end-of-life wishes, unwanted and expensive hospital care will continue to rise along with a rapidly growing senior population. By 2060, the number of American residents over the age of 65 is expected to double from 46 million today to more than 98 million.
Until a national registry or common electronic records system is established, a personal advocate who can be called upon in case of emergency and who has a copy of any advance care plans is often the best insurance we can have. It’s that or perhaps having your wishes tattooed on your chest?