Opinions: Viewpoints

Should I be afraid to die in an intensive care unit?

Connie Holden, R.N., M.S.N.

My professional response to this question is molded by 25 years of experience as a nurse, while my personal response grows out of having been at the bedside of my parents as they died.

My 49-year-old mother was stricken with a massive heart attack and succumbed in an intensive care unit, after eight hours of invasive, barbaric, yet appropriate, care that was aimed at saving the life of this loving, vibrant woman. Her poor body died, only after the needles, tubes, pumps, and ventilator were removed. I remember staring at her feet, the only part of her body that I could connect with the mother who had held and loved me.

We were allowed back into the room only after the machinery was removed and her heart was no longer beating. There was nothing dignified about her dying, except the fact that she was allowed to do so. My head knows that this is the way in which her death needed to play out. My heart wishes it could have been different.

Ten years later, my dear 67-year-old father took his last breath with his family at his side. While his two-year battle with laryngeal cancer was filled with its share of dehumanizing and ultimately futile treatments, such as surgery and radiation, his peaceful death, on a hospice unit in Minneapolis, was a world apart from the horrors of my mother's last hours. I witnessed, firsthand, the special "midwifery" of professionals who know how to guide the passage from this life.

Are the people who die in intensive care units a completely different set of patients? I believe they are not.

Many people who die in this nation's intensive care units could die at home or on a palliative care or hospice unit. Because we demand it and/or doctors suggest it, even the chronically and terminally ill find themselves in intensive care units. It is the feeble hope of prolonging life that puts these poor souls in line for a miserable, undignified death, while their families are huddled in sterile waiting rooms.

What needs to change? Physicians must be empowered and trained to refuse to provide futile care. Hospitals should provide low-tech palliative care for those who are dying within their walls. This nation's 2,200 hospice programs must continue to assist families to provide for a home death whenever possible. As individuals and as a public we must come to accept the normalcy and inevitability of death.

And so the answer to the question is "yes." Images of intensive care deaths will haunt daughters for as long as they continue to occur.

John Hansen-Flaschen, M.D.

People enter ICUs not to die, but to live. Whether the patient is a school girl struck down by a bus, a mother afflicted by a run-away pneumonia, or a grandfather threatened by a complication of surgery, the primary purpose of intensive care is to fight off death and restore health. Like fire fighters, critical care specialists are often successful in averting catastrophe. But we do not always succeed, and we can cause great damage by our efforts.

Recently, much attention has focused on the experience of dying in an ICU. Research studies paint an unattractive picture. Some families report fear, miscommunication, and indifferent or inconsistent care. Many ICU patients appear to suffer pain or breathlessness in their final days of life. Their bodies end up bruised and swollen as if they died out on the street.

It does not have to be that way. When a patient fails intensive treatment, an enlightened ICU staff can shift from life support to comfort care. By removing some of the tubes, shutting off the monitors and turning down the lights, we can convert an ICU into a well-attended bedroom or a chapel that a family can make their own. At $2,000 to $5,000 a day, the best ICUs can (and do) provide the best hospice care available anywhere.

Should you fear death in an ICU? Only in the wrong ICU.

How can we ensure appropriate intensive care for ourselves and our family members?

First, ask these two questions before sending a loved one to an ICU. (1) Does your family member want to continue living, even if the personal price is high? (If the person is so severely ill or impaired that he or she can never again express thanks for being alive, the answer is probably no). (2) Does he or she have a reasonable chance of recovering from a critical illness? (If the person is frail and elderly, or suffers from a severe, chronic or terminal illness, the answer is likely to be no).

Second, be there with the patient in the ICU for at least several hours every day. Physicians and nurses tend to do their best for uncommunicative, critically ill patients when the family is present at the bedside.

Third, expect attentive care and effective communication. Many people do not understand that they can choose their hospital, even under desperate circumstances. In major metropolitan areas, most critically ill patients can be transferred safely within hours by ground or air ambulance to a regional referral ICU at the request of the family.

Fourth, be prepared to let go when a trustworthy doctor advises that the battle is lost. Too many patients suffer on in ICUs at the insistence of well-intentioned but misguided families who believe it is their duty never to "give up." When the time is right, letting go is not an abandonment but a gift.

Connie Holden, R.N., M.S.N., is the Executive Director of Hospice of Boulder County, Boulder, Colo. She sits on a variety of ethics committees and serves on the Colorado Governor's Commission on Life and the Law, the International Work Group, and the National Prison Hospice Association. Connie can be reached at Hbcholden@aol.com John Hansen-Flaschen, M.D., is Chief of the Pulmonary and Critical Care Division and Director of the Comprehensive Lung Center at the University of Pennsylvania in Philadelphia, Pa. Dr. Hansen-Flaschen practices critical care medicine in the regional referral medical intensive care unit at his hospital. He also lectures and writes about ethical issues in medical intensive care and decisions near the end of life.
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