As a nonprofit health care company with a mission of ensuring the independence of our members, ICS has firmly supported the right of individuals to instruct medical providers ahead of time about how they want to be cared for in the event they become incapacitated and unable to communicate as major organs begin to fail.
We support the right to make these advance directives not just in words—we’ve published several blog posts on the subject over the years—but also in deed. Our care managers as a matter of course encourage members to discuss end-of-life wishes with loved ones, put them in writing, and share them with us and with their providers.
Advance directives are important especially for families of people who do not want heroic efforts expended to save them. As ICS Senior Vice President of Marketing and Communications Loreen Loonie wrote a few years ago about her aunt’s directive not to resuscitate, “It was her last and best gift to her family…. [It] meant that we did not have to agonize over the decision about how she would want to be treated in the circumstances she was now in—still breathing but with no hope of any recovery. She did the hard work for us, spelling out her wishes in clear language.”
When Directives Fail
To understand the importance of advance directives, it’s instructive to look at an instance when the orderly process they are intended to invoke fails.
Consider the case of Beatrice Weisman, an 83-year-old woman admitted to Maryland General Hospital in August 2013 after a stroke. Beatrice and her husband William had done what we at ICS encourage our members to do: they had had the difficult but necessary conversation about “what if” something very bad happened. Beatrice named her husband her health care proxy and made sure he understood her wishes in the event she could no longer speak or act for herself.
According to a recent article in the New York Times about the case, Mr. Weisman, following his wife’s wishes and after consultation with their children, had “authorized Medical Orders for Life-Sustaining Treatment, known as a Molst form, stating that if his wife’s heart or lungs failed, she should be allowed to die.”
Just days later, however, when staff found Ms. Weisman “turning blue in her bed,” the Times reports, “staff members began to perform CPR, which caused broken ribs and collapsed lungs. They defibrillated her with electric shocks, injected epinephrine and succeeded in reviving her.”
Ms. Weisman left the hospital requiring round-the-clock care and feeding through intravenous tubes. Four years later, she can eat meals and recognize family members, but dementia leaves her “confused and afraid,” her eldest son, Christian, says. “She asks why she’s still here. That’s a difficult thing to answer.”
“Unwanted Life Is Also a Harm”
William Weisman died a year after his wife’s discharge from the hospital, distraught over what happened to her. Christian Weisman “brought suit against Maryland General for its treatment of his mother, alleging assault, negligence, the ‘intentional infliction of emotional distress’ and other claims,” the Times reports. The case is scheduled to go to trial this November.
Acknowledging that courts have traditionally sided with hospitals performing life-saving measures against a family’s wishes, Thaddeus Pope of the Health Law Institute at Mitchell Hamline School of Law in St. Paul, Minnesota, says, “Courts increasingly accept that unwanted life is also a harm.”
What may be influencing them is the number of cases now being brought by families who feel their “saved” loved one was wronged.
According to the Times, families of patients whose advance directives were overlooked or ignored may be encouraged by recent developments in case law. For example, a California woman was able to recoup legal expenses from a hospital that took action to supersede her husband’s appointment of her as health care proxy. More significantly, perhaps, the Georgia Supreme Court ruled in another case that “it is will of the patient or her designated agent, and not the will of the health care provider, that controls.”
Clearly, the courts seem to be moving toward assigning liability to hospitals and medical providers for ignoring the end-of-life wishes of their patients, making such negligence a potentially costly mistake. Dr. Pope sums up the case for these patients and their families in a journal article: “As one advocacy campaign puts it: ‘Patients should receive the medical treatments they want. Nothing less. Nothing more.’”
How can I make sure that my wishes or my loved one’s wishes are followed?
As the Weisman’s case shows, there is no absolute guarantee that in an emergency, a hospital will abide by your living will. The best way to prevent against having your wishes ignored is making sure they are widely known, and the best way to ensure that is to discuss your wishes with your family, your care manager and your health care providers. Then, put them in writing.
New York State accepts as legally binding a document called the Five Wishes. This document sets down your explicit wishes for the following:
• The person you wish to speak for you (your health proxy) in the event you can’t speak for yourself
• The kind of medical care you want (heroic measures or “do not resuscitate”?)
• How comfortable you want to be—Do you want attention paid to your appearance? Do you want people of your faith nearby?
• How you want to be treated—Do you want to have people with you? Would you rather be with family only? Do you want to die at home?
• What you would like your loved ones to know—What arrangements would you like made for your funeral?
Aging with Dignity has a form that can help you make these important decisions while you talk them over with your family. Ask your care manager if you need help locating the form. Once completed, be sure to share it with your care manager and your primary care provider. Make sure your family is aware of your wishes so, in case anything happens to you, they can advocate forcefully and with confidence on your behalf.