In the News
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Telegram & Gazette
May 15, 2006
Dying wishes
Families speak out about end-of-life treatment
By Elizabeth Cooney TELEGRAM & GAZETTE STAFF
A portrait of Emily M. McConnell sits in the foreground at the home of her daughter. Mrs. McConnell died Jan. 2, 2004, a week after her 99th birthday.
The notion in this country is that death is a taboo topic. … (People) just want to be invited to talk about it and they will.
Two elderly women, clear of mind and full of spirit, spelled out to their daughters what they wanted their funeral arrangements to be.
Emily M. McConnell chose the hymns she wanted played at her memorial service.
Statia M. Kruczek picked out a blue casket and packed away in a marked box the clothes she wanted to be dressed in, even down to the underwear to go beneath the dress she had worn at her grandson’s wedding.
Their daughters recall the good humor and sharp awareness their mothers brought to the planning. Mrs. Kruczek and her daughter made a day of it, having her favorite lunch and joking about what the weather would be like for a graveside service. Mrs. McConnell considered having her ashes spread at her daughter’s camp in New Hampshire, but decided on the family plot in Newton instead when her daughter said they might have to sell the vacation spot someday.
As their health deteriorated, the women specified the care they hoped to receive once there was no hope of recovery. They never met and have only the year of their death in common. They knew what they wanted but only one of them got it.
At 99 years old, Mrs. McConnell died a peaceful death at a long-term care facility with hospice services, three months after stating she wished her long life would be over.
“She died in peace with dignity,” said her daughter, who asked not to be identified. “Her care couldn’t have been better.”
At 93 years old, Mrs. Kruczek died in pain and distress in a hospital, despite her clear wishes for relief and strong desire to enter hospice care the next day.
“I think of it every single day,” said her daughter, Elaine Kopcinski of Sutton. “I was prepared for my mother to die, but not like this.”
The way people die in Worcester was the subject of a survey sponsored by the Central Massachusetts Partnership to Improve Care at the End of Life, a coalition representing people from the health care, legal, labor, religious and social services professions. With names gathered from the “next of kin” entry on 3045 death certificates in 2004, questionnaires were mailed to 900 people. They were queried not on what was important to them at the end of life, but what they thought their loved ones wanted at the end of life — and whether they got it.
These surrogate responses created a snapshot of dying in Worcester. A total of 373 people replied with their best guesses on what counted: being treated with dignity and respect, being kept clean, being spoken to in one’s own language, having pain relieved and uncomfortable symptoms eased. They weighed in on how often those needs were met.
The results show where Worcester is doing well — dignity and respect 94 percent of the time — and where it is not — relief of pain and uncomfortable symptoms in only 80 percent of cases. The partnership plans to share its data privately with individual practitioners and institutions in order to improve care of the dying. That information was not shared with the newspaper.
At the end of the survey, the researchers left a space for comments. This time, the loved ones spoke their own minds.
The flood of observations surprised even people who regularly confront death and dying.
“The notion in this country is that death is a taboo topic,” said Dr. David A. Kaufman, chairman of the partnership’s health care group and chief of critical care medicine at St. Vincent Hospital. “All people want is permission. They just want to be invited to talk about it and they will.”
Mrs. McConnell’s and Mrs. Kruczek’s daughters were not the only respondents to add their voices. More than 200 people had thoughts to share.
Many said they never got to say goodbye. They needed to know what to expect, and when, as death became inevitable. A common theme was feeling abandoned by doctors once the prognosis was poor.
When comfort care was all that could be offered, some families felt overwhelmed at the responsibility of providing it at home. They felt they couldn’t relieve their loved ones’ pain. Transfers to and from hospitals and nursing homes were too much to bear.
Hospice services were a godsend for some, but in too short supply for others.
No one told us what was going on, families said, or if they did, not in a way that the person who was dying could comprehend. Fifty-one doctors were involved in one case, one respondent said, but not one of them listened.
Some people found hospitals understaffed or unsympathetic. Others cherish memories of compassionate care from health care providers up and down the ladder.
“Their expressions of grief, towards someone they hardly knew, will never be forgotten,” wrote one person.
And as death approaches, dignity should not be left behind, another said.
“When you have most of your abilities taken away, the few you have left are very important, and if that means you need help to use the bathroom, then help should be there.”
Most disturbing were the reports of unrelieved pain.
That was true for her mother, Mrs. Kopcinski said.
Her mother had lived in her own home up until the time of her hospitalization, supported by her family and twice-a-week visits to elder day care.
“She wasn’t quite ready to move in with me,” her daughter said. “Maybe when she was 100, she used to say. We really thought she would.”
At age 93 Mrs. Kruczek was hospitalized with congestive heart failure, a mild heart attack and a peripheral vascular disease. She developed a blood clot in her leg, which was operated on. She was transferred to a rehabilitation facility but was readmitted to the hospital the next day with an irregular heartbeat.
Her prospects for recovery were poor that Sunday, said Mrs. Kopcinski, a nursing supervisor at another hospital. Her mother and her family decided it was time for comfort measures only. Mrs. Kopcinski discussed this decision with her mother’s doctor and planned to seek hospice services on Monday, the same day she expected the comfort measures only orders, called CMOs for short, to be explained in detail. Decisions would be made about what treatments would be ordered for her mother and who would be assessing her needs hour by hour.
Mrs. Kopcinski went home briefly, but her sister called her to say their mother was in pain and gasping for breath. She returned to see her mother breathing extremely rapidly. Three calls were placed to the doctor, who had left the hospital. He had ordered what Mrs. Kopcinski described as grossly inadequate amounts of morphine, given her mother’s respiratory distress.
Mrs. Kopcinski paged the doctor herself, insisting that a morphine drip be installed. After a delay, her mother got the drip, but it was only a few minutes before she died. Her final words were, “How much longer?”
“No patient should die like that,” she said. “This should not happen within the walls of the hospital.”
Mrs. Kopcinski later found out that the CMO had been ordered by her mother’s doctor on that Sunday, before the family had specified what they wanted it to mean.
“We knew my mother had to die. It was just the way she died,” Mrs. Kopcinski said.
At the other end of the spectrum is the way Mrs. McConnell ended her days.
She had been living in a long-term care center for six and a half years. In October 2003, she chose to refuse food and medications for her congestive heart failure and other ailments. Pain medicine was given through a patch. Her grandchildren and great-grandchildren were able to say goodbye. She joked with her daughter about how long it was taking her to die once she was ready to go.
A service designed for people near death was held at her bedside in December. It included her favorite hymns — “How Great Thou Art,” “The Old Rugged Cross,” “Amazing Grace” — and her favorite prayers — the Lord’s Prayer and the 23rd psalm. She was able to say the prayers and know who was with her.
She told her daughter that her mother and father were visiting her in dreams.
“The closer you get to the end of life, the nearer you get to the beginning,” said her daughter, a nurse who later became a school psychologist.
Mrs. McConnell died in her sleep in January 2004, a week after her 99th birthday.
“Her end-of-life care was superb,” her daughter said. “My mother was fortunate.”
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