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Helping a Loved One Die with Dignity

As baby boomers increasingly face the responsibility of caring for a dying loved one — and making sure their final wishes are met — they often find themselves unprepared for the emotional roller coaster and ensuing battle that can lie ahead.

Her mother's painful and drawn out death nearly a year ago requires daughter Rose Evans to continue to seek professional help to deal with her emotional pain. "I couldn't begin to tell you how awful I felt. I was crying everyday," Evans says.

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Evans' mother, Rose Bellmore, battled mouth cancer, pneumonia and a host of other maladies for five weeks that left her in pain — and alive against her will. Even though Bellmore had prepared an "advance medical directive" — instructing her doctors that she wished to die without heroics and with dignity when the time came — her wishes were ignored.

Although Evans says Bellmore's doctors understood her wishes, they did not observe them in Bellmore's final days because Bellmore's medical directive — though with her when she was admitted to the hospital — disappeared and was never found.

Without paper in hand, Bellmore's doctors, in fact, tried to keep Bellmore alive with life-sustaining equipment in her final days.

"The emotional part was just unreal...when the doctors wouldn't listen or others wouldn't listen, we were besides ourselves," Evans says. If she could go back in time, Evans adds, she would have stayed at her mother's side and made sure her medical directive was tacked above her bed. "I'd throw a fit and say this is what she wants!"

Even though Bellmore and her family were knowledgeable about advance directives, they — like many families — ran headlong into a medical system designed to keep people alive, instead of allowing them die according to their wishes.

Each day, dying patients' wishes are rejected for numerous reasons. These include a doctor's refusal to accept a patient's request to bypass life-sustaining treatment based on moral grounds, fear of lawsuits or criminal charges.

From Bad to Worse

Bellmore wrote her medical directive in 1994 when her health began to fail because of pulmonary fibrosis. In it, she designated a health-care power of attorney (who appoints a "proxy" to carry out the dying patient's wishes) and instructed that she wanted no life-sustaining procedures should she become terminally ill.

In fact, Bellmore chose one of two common ways to set up a medical directive. The other is a living will that lays out what life-saving measures should occur if you are incapacitated by a terminal illness.

Four years later, doctors discovered that Bellmore's mouth cancer had recurred and told her that she surgery was too risky because of her pulmonary fibrosis; they recommended radiation therapy. When the radiologist told Bellmore that she would need a feeding tube and that her lips and tongue would turn black, Bellmore refused to go through with it and opted for surgery, believing that if she died, her death would be more peaceful.

As she prepared for surgery, Bellmore reminded her doctors that she did not want to be put on a tracheotomy tube or ventilator. Her doctors "knew very clearly she did not want to be resuscitated under any circumstances," Evans says.

Five days after the surgery, however, Bellmore had no breath or a pulse. She was placed on a tube and ventilator and her family was not notified. After Bellmore was resuscitated, she wrote her family: "What went wrong, and why?"

"They did all this heroic stuff," Evans says. "This is what my mom absolutely did not want done!" At that point, Evans says, "everything went from bad to worse."

Evans then launched a full-court press with hospital administration, doctors and the hospital's bioethics commission to have her mother's wishes met. It wasn't until three weeks later, however, when Bellmore developed a second case on pneumonia during her stay and failed to respond to antibiotics that doctors finally relented and removed the ventilator. Fifteen minutes later Bellmore died.

Eventually, Evans took her mother's case to Compassion in Dying, a Portland, Oregon-based national education, service and lobbying organization that advocates end-of-life choices and pain management. The organization put Evans in touch with others families who had similar experiences.

"The [Evans] family was given the runaround and manipulated," says Barbara Coombs Lee, president of the organization.

It's precisely because of cases like Bellmore's that states have begun making medical directive laws more patient-friendly, says Charles Sabatino, an attorney with the American Bar Association's Commission on Legal Problems of the Elderly. While all 50 states and the District of Columbia recognize advance directives, Sabatino cautions people to fill out such forms according to each state's laws because requirements may be different. Some states, for example, require witnesses and/or notarization.

Making Medical Directives Stick

Typically, the two biggest barriers to meeting a dying patients' wishes met are lack of communication with family and doctors — and the reluctance by many physicians to allow a dying patient to go without a medical fight.

"One of the biggest reasons advance care planning fails is that physicians and patients haven't discussed it," says Damon Marquis, author of Advance Care Planning: A Practical Guide for Physicians. "So many people think advance care planning is a piece of paper and an one-shot deal. But it's not."

Make your wishes known to your family and doctors when you are well enough to communicate, advises Coombs Lee. "Completing the form should be a family affair and should not be done in isolation," she stresses.

"The goal of an advance directive is not only to encourage health care providers to carry out our own wishes if we become incapable of saying so, but also to lighten the burden of decision-making on family and loved ones to whom this duty will fall," Coombs Lee says.

A well written medical directive is likely "to change the tone of the conversation" for the better between families and doctors who are trained to give more — not less — treatment, Coombs Lee adds. Although the American Medical Association is raising awareness among physicians about end-of-life care, Coombs Lee says physicians' attitudes are evolving "slowly."

You want to also be sure a directive is in your medical file, otherwise, as Bellmore's case illustrates, doctors may not honor the patient's wishes. This is especially important given that "most times that directive doesn't end up in the medical chart," says Sabatino. "Most commonly, the documents are never seen or read."

Finally, choose a physician based on his/her willingness to talk about and respect a patient's views on end-of-life care. "It's never too early to talk about this issue with one's physician," says Coombs Lee.

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