Start talking about meaningful quality of life and end-of-life care long before the need for high-tech life support.
When Paul Scheier, a retired dentist from a suburb of Buffalo, understood that he would die of lung cancer, he chose to skip chemo and died at home under hospice care. In a survey accompanying a Consumer Reports video about him, “A Beautiful Death,” 86 percent of adults said they, too, would like to spend their final days at home.
Too often, though, Americans end up dying in a hospital, many of them in pain. As Timothy Buchman, director of the Emory Center for Critical Care in Atlanta, writes, “Death is not optional. Conversations around goals of care and meaningful quality of life ought to start long before the patient is placed on high-tech life support in an intensive care unit….Without meaningful end-of-life planning, patients will increasingly end up in medical purgatory. It’s a poor way to live, and a worse way to die.”
Death is not optional, but unpredictable. A car accident could leave you unconscious in that ICU, or you might suffer an illness and seem on the mend, then slide. Who decides what happens next when you can’t? Protect yourself with a living will that states the circumstances under which you would no longer want to receive medical services, like a feeding tube, a breathing tube connected to a ventilator, or IV lines supplying medicines. Also appoint someone to make those decisions if necessary with doctors — a “health care agent” or “health care proxy.” You may want to choose someone who could be level-headed, perhaps a friend or colleague. Written instructions are invaluable. “Asking one's spouse of fifty years to shoulder the burden of end-of-life decision-making is asking a great deal in a time of greatest crisis,” Buchman observes.
The paperwork is fairly simple, and does not require a lawyer. State forms are available at caringinfo.org. Your proxy must sign the forms and keep a copy. You can store, edit, email, and fax documents on a smartphone using the “My Health Care Wishes” app from the American Bar Association. It’s also a good idea to talk to anyone who might be at your bedside and give them copies of your documents to help prevent disagreements among well-meaning family members. Doctors are most likely to respect the wishes of a family that presents a united front. Without this paperwork, state laws will define who is in charge. And you can change your living will at any time, for any reason.
Should you find yourself facing a serious illness, the American College of Physicians recommends contemplating these questions:
- As you think about your illness, what is the best or worst thing that might happen?
- What are your hopes for the future?
- What matters most?
- What are your fears?
- Are you concerned about suffering, maintaining your dignity, or being a burden to your family?
- What is most difficult for you about this illness?
- Questions you might ask your doctor include:
- Will I know when my condition gets worse?
- When treatment stops working, will you tell me (or my family)?
- Will I get all the care I want?
- What is a do-not-resuscitate order? A feeding tube?
- I want your best advice – but my family and I want to make the final decisions. Will you support us when that time comes?
Don’t get lost in the jargon: Make sure you understand what medical care can — and can’t — do for you. “The question that is often overlooked is whether the highly technical care prevalent in intensive care units is prolonging living or prolonging dying,” Buchman observes. “Failing to ask and answer that question honestly often leads to regrets.”
If it’s clear you won’t live longer than six months, your doctor may refer you to hospice care, following the recommendations of a report from the Institute of Medicine. The modern hospice mission was first set forth in 1967, when Dame Cicely Saunders, a nurse, opened St. Christopher's Hospice in London. Instead of cures, she offered patients relief from physical pain, preservation of their dignity, and respect for the psychological and spiritual aspects of death. About 1.5 to 1.6 million Americans received hospice services in 2012, the National Hospice and Palliative Care Organization reports, and 66 percent did so at home. About half of those patients received care for less than three weeks. In some studies, older adults with common cancers who used hospice care lived almost a month longer, and more comfortably, than those who kept trying to cure their disease, according to Consumer Reports.
You can request a “hospice consultation” yourself, without your doctor’s referral, and receive a few services initially. Choose a hospice that can care for you in your home or if necessary, in a hospital or in-patient unit. Some patients improve with hospice care, leave it, and resume it again.
In a handful of states, you may have the right to assisted suicide with a prescription for a fatal dose. Most patients who take this option are under hospice care at home. They choose the moment of their death.
“There is a moment in every life when each of us comes to grips with the fact that life itself will end,” says Buchman. “What has surprised -- and gladdened -- me is the grace and courage that characterizes these conversations.”
If you are making end-of-life choices on behalf of someone else, Buchman urges you to take the patient’s point of view. “Crisis can distort anyone's perspective,” he says. Often we confuse our own desire to see a loved one live with the patient’s priority, which is “commonly to be free of pain and suffering.”
February 24, 2020
Christopher Nystuen, MD, MBA