Anna Ruth Rosenblatt
Throughout life, we plan. We plan weddings, families, careers, retirements and more. Yet reaching these milestones is not a guarantee. We cannot ensure that we will marry, have children or have a successful career; the only thing we can be sure of in life is that it will end. We will all die and currently terminally ill patients in America are doing it wrong.
Fortunately, hospice and palliative care is transitioning to the forefront of many difficult conversations. The Institute on Medicine formed a Committee on Approaching Death which has compiled a 600page book titled Dying in America, and USA Today and other leading publications have begun publishing encouraging articles about hospice. Hospice offers a far more comfortable and compassionate death than intensive care units of hospitals for both the patient and their family, but many are unaware of this option.
In order to share this information, Americans must start talking about dying. These conversations were pushed even further away when Republican lawmakers attacked provisions in the Affordable Care Act that proposed Medicare reimbursement for physicians educating patients about end of life provisions such as living wills and directives, calling them “death panels.” Closing the doors of communication for many patients and leaving families uninformed.
When faced with imminent life or death choices, most people will advocate for a physician to do “all they can” for a loved one despite, or without knowledge of the repercussions and alternatives. In his article, “How Doctors Die,” Dr. Ken Murray of the University of Southern California talks about the discrepancy between how physicians treat patients compared to how physicians treat themselves at end of life. “The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. […] I cannot count the number of times fellow physicians have told me, in words that vary only slightly, ‘Promise me if you find me like this that you’ll kill me.’” Physicians know that these methods are costly, painful and usually ineffective. Yet they continue to put patients through these treatments because they are being asked to do so by families, fear legal repercussions or, because of the feeforservice model that incentivizes it.
Under the Hippocratic Oath, physicians are sworn to help the ill and injured, but in America we have forgotten that often, at end of life, the best way to help people is to stop trying to cure them. In four years of medical school, end of life care is taught for merely seventeen hours. Every patient that a physician treats will eventually die, yet this aspect of life, death, is virtually avoided in the medical curriculum. Physicians must be taught how to help people live at the end of life in the most meaningful and comfortable way possible; something that hospice has been doing for decades.
For those facing no hope of recovery, hospice works to make a patient feel prepared and comfortable in their final months and provides support to the family going through loss. The services of hospice include palliative services, social worker, religious counseling, grief counseling and many others. These services are immeasurable to those who receive them but hospice cannot help those not referred. To be eligible for hospice a physician must determine that a patient is terminal and likely has less than six months left to live. Physicians must counsel their patients and inform them of this option. They must learn how and when to speak with a patient about death and when to bring hospice into the conversation.
Currently hospice is underused, and often at the end of exhausting, expensive and painful intensive care stays. A recent study done at Ohio State University reported that the first day for a patient on intensive care can cost $10,794. These expenses are considerable and their effectiveness is questionable at best. Intensive care stays are also extremely difficult for the patients loved ones. USA Today reports that over 25% of hospice use in 2009 was for three days or less, a very short amount of time compared to the six months plus available to them. In three days it is difficult for many to complete their taxes, yet here we are expecting patients and their loved ones to prepare for death in that time. As Americans we must ask ourselves, given more complete information would patients still make these same choices? To be eligible for hospice care, a physician must determine a patient terminal with less than six months left to live, (don’t worry they won’t kick you out if you live longer).
Americans are dying in hospitals, going through painful, expensive and largely unnecessary treatments when we could be dying in the comforts of our own home surrounded by those we love. We are dying wrong. If you or someone you love is facing terminal illness it is hard to consider yourself lucky, but in many ways you are. Death has handed you advanced notice – use it. Be an advocate, make a plan, share it with everyone—doctors, a spouse, family members, everyone. Talk about hospice and DNR (Do Not Resuscitate – look it up, it’s important). Plan so that when the time comes, even if you are unconscious, you can be a part of the conversation of how you live.
Anna Ruth Rosenblatt is currently a health policy student at New York University Robert F. Wagner School of Public Service. She has worked as a volunteer at Hospicare and Palliative care in Ithaca, NY, and is a self acclaimed Life Enthusiast.