THE BLOG
11/19/2013 04:38 pm ET Updated Jan 23, 2014

Death and Dying: Personal Goals at End of Life

An alarming -- but not altogether surprising -- recent study shows that far too often, patients in intensive care receive what their own doctors judged to be "futile care." Published in JAMA Internal Medicine, the study of five intensive care units across a Los Angeles health care system found that nearly 20 percent of patients, one in five receive "futile" or "probably futile" treatment. In the study, doctors said they frequently provided care that did not meet patients' goals. "Treatment that cannot achieve a patient's goals or that simply maintains a state such as ICU dependence or permanent coma is contrary to professional values, inappropriately uses health care resources, and creates moral distress," concluded the study.

According to the study, reasons physicians cited for deeming treatment "futile" included "burdens grossly outweigh benefits, patient will never survive outside an ICU, patient is permanently unconscious, treatment cannot achieve the patient's goals, or death is imminent."

Of the 123 patients perceived by physicians as receiving futile treatment, 84 (68 percent) died before hospital discharge, 20 died within six months of ICU care, and the 19 survivors remained in severely compromised health states. The monetary cost of this treatment was estimated at $2.6 million -- but the human cost of needless suffering for patients and their families is of course, inestimable.

For many people, the idea that personal goals are as important at the end of life as they are at the beginning is still a challenge, yet, creating goals can be a critical step in ameliorating needless suffering. The JAMA study showed that in more than half of the 221 cases deemed futile or possibly futile, the physician in charge considered the treatment so because he or she believed it would "never reach the patient's goals."

What can we do to ensure that our loved ones, or we ourselves, get the care that meets our personal needs and goals? A close look at some key decision points can shed some light.

1. What are the goals of care?
Setting personal health care goals is central to successfully navigating today's changing health care system. The need for patients to better understand, articulate and advocate for their own end-of-life wishes is especially important in today's complicated health care arena.

The goals of curative treatment, for example, are very different from those of palliative and hospice care (pain and symptom management) at the end of life. When someone is having curative, life-extending treatment, the goal is to help them get better, but at end-of-life, unless the patient and/or family members make their goals clear, there can be a great void.

End-of-life goals vary greatly, depending on personal and family wishes, the progression of the illness, previous experience with death, and other reasons as individual as each patient. Often, end-of-life goals include being at home, in a familiar environment, surrounded by loved ones. Beyond that, I've heard people in their final months or days say I want to be pain-free no matter what. I've heard others say I want to be present and alert, no matter the pain.

2. The importance of end-of-life conversations
This study points up the need for families to talk to one another about end-of-life wishes, to have that all-important "conversation," which might really be a series of conversations. The deeper a family's understanding of a person's wishes before a trip to the emergency room, the better the chance that the preferences will be followed.

What level of medical intervention is desired when life is limited? What level of physical compromise is acceptable? What are your priorities? These are questions that must be discussed among patients, their physicians and their loved ones when life is limited.

In a much-cited New Yorker article on hospice care, the author and surgeon Atul Gawande confesses that even doctors avoid these difficult conversations and admits to his own personal and professional awakening on the subject. He recounts the story of a friend, herself an expert on end-of-life care, who resisted such a conversation with her own seriously ill father.

By asking him, "What level of being alive is tolerable to you?" and hearing his surprising answer -- to be able to eat chocolate ice cream and watch the football game -- she was able to help him navigate his most consequential medical decisions as he battled what turned out to be a terminal illness.

When you or someone you love is facing a terminal diagnosis, what questions should you discuss? I recommend starting with these three:

• What is most important to you now?
• What are you most concerned about?
• Who knows your medical care preferences and can speak for you if you cannot speak for yourself?

I also recommend asking questions of the physician, starting here:

• How can I be sure that you and the medical team will honor my wishes for care?
• Will you let us know when treatments are becoming less beneficial?
• What role might palliative or hospice care have in my treatment plan?

The effects of holding frank end-of-life conversations continue even beyond a patient's death. Caregivers who had such discussions reported less depression during bereavement than those who had not, according to a 2008 study in the Journal of the American Medical Association.

3. What does "everything done" mean to you?
In the final stages of congestive heart failure, Bart Andrews lay in bed, minimally responsive and gasping for breath. He was surrounded by his adult children, whose conversation kept returning to the refrain, "We want everything done for him."

As the conversation unfolded, the adult children told years-old stories of when their mother died. " remember Dad saying he didn't want to be hooked up to a tube, or a ventilator, like Mom was," said one. Then, one by one, the others voiced similar memories.

"They needed time to explore," recalls a VNSNY Hospice Nurse. "An important part of any family conversation is to understand what is meant by 'do everything.'" Does it mean surgery, feeding tube, ventilator, or does it mean pain medication, oxygen, antibiotics if necessary, and other measures aimed at comfort and quality of life?

Eventually, and in dialogue with the care team, the family agreed that their father would not want a ventilator. The goals of care then shifted to making him comfortable in his final days. It was only through the good, hard work of family conversations that consensus was reached by all involved about the best course to follow in an incredibly difficult situation.

As the study found, health care teams are not infallible in intensive care situations. Having the patient's and family's goals as guidance is more critical than ever before. "It's a very complex process making decisions for very ill patients who are on the brink of death," said Dr. Neil Wenger, director of the UCLA health care Ethics Center at the David Geffen School of Medicine, and senior author of the futile-care study. "The main message is that early discussions and advance planning are absolutely critical."

I emphatically second that message. This study is evidence of what can go wrong when doctors, patients and families fail to have frank and open communication about end-of-life care. It is also, in the clarion call of its conclusion, "a first step toward refocusing care on treatments that are more likely to benefit patients." And that is good for everyone.