Congress Should Aid Good Death’ Like My Mother’s
My mother died this month at age 95. This column is a tribute to her example of living — and also a public policy tribute to the manner of her death, in hospice care.
Genevieve Kondracke was a tough, giving, self-reliant survivor of the Great Depression: frugal, dedicated to duty and personal responsibility, and a realist.
When she was diagnosed in April with probable ovarian cancer, she decided against a biopsy, risky major surgery and a long hospital stay.
“Well, I signed my death warrant today,— she told me at the time. But she died peacefully, at home, visited often beforehand by her family, in no pain.
This is my second experience with hospice, and it confirms all I appreciated about the humane care that my wife, Milly, received as she died five years ago from multisystem atrophy, a severe form of Parkinson’s disease.
About 40 percent of Americans who die each year do so under hospice care, whose purpose is to keep a terminal patient comfortable, not to fight death.
As Congress considers health care reform, it should find ways to encourage hospice use — “good death— — and save not only a lot of pain and fruitless (if heroic) effort, but a lot of money, too.
My mother wasn’t an expert on health policy. She wasn’t very political (she did run for a school board post once), but she had some strong views. For instance, she was a feminist long before anyone discovered “The Feminine Mystique.—
She worked her way through the University of Illinois in the depths of the Depression. She was also a member of the women’s swimming team.
In those days, 40 years before Title IX guaranteed equality of funding for women’s sports, men’s teams traveled to other schools for meets. Women swam in their own pools and telegraphed their times to each other.
My mother hated that inequality. She was an economic Republican, but a social Democrat — pro-choice, pro-women’s advancement. She was a loyal churchgoer, but she couldn’t stand the religious right.
She was also a model of personal responsibility. For 68 years, she cared for my brother, Mike, who suffered brain damage from a high fever in infancy and is somewhat mentally disabled.
Early on, she tried to get help and training for him, but few resources were available. Then he lived with her, alone after my father died in 1976. She kept him out of trouble, helped him get odd jobs and trained him to be a good guy.
She never, ever complained about the burden, just took Mike’s care as her responsibility. She never claimed credit for it, either, though it’s a model of dedication.
Thanks to her, my youngest brother, Dave, became a champion high school and college swimmer. But when we were kids, the towns we lived in — Hamilton, Ohio, and Joliet, Ill. — had no winter swim teams.
So, in addition to teaching school full time, she became the swimming coach at local YMCAs and took her teams to meets all over the country.
She made a big difference for me, too. My father, a conventional thinker, thought I should go to college close to home, become a doctor, drive a Cadillac and belong to a country club.
She knew I wasn’t cut out for that, so she encouraged journalism and talked my father into letting me go to Dartmouth. And, at crucial times in my life, she wrote me kick-in-the-pants letters to roust me from self-pity, from alcoholism, from excess debt. I treasure those letters.
My mother had great genes, was a good golfer and stayed active deep into old age. But after several ministrokes, Dave and I persuaded her two years ago to move from her house in Illinois to a retirement home near him in Ohio.
It was to avoid falls down stairs and also, she realized, so that Mike could get acclimated to new surroundings before she died.
Wesley Ridge, the retirement home in Reynoldsburg, near Columbus, Ohio, ultimately accommodated hospice care, a blessing all around.
My mother was determined to avoid needles, anesthesia, surgeons, intensive care units, tracheotomy, ventilators, resuscitation — all the heroic measures hospitals take to keep a patient alive.
Instead, Odyssey, the hospice service, provided visiting nurses, pain medicine when she needed it, a social worker and spiritual counseling.
Congress should pay attention: a 2007 Duke University study showed that hospice use could reduce Medicare costs by as much as $7,000 per patient in the last year of life, or $2,300 on average.
Thirty percent of Medicare’s current $500 billion annual cost pays for the care of the 5 percent of beneficiaries who die each year, and about a third of that is spent in the last month of life, or $50 billion.
The Obama administration has directed a lot of attention to a Dartmouth study showing that end-of-life care varies widely from medical center to medical center — $93,800 at UCLA Medical Center, $53,400 at the Mayo Clinic in Rochester, Minn.
But it hasn’t made much of a point of the savings — and the humaneness — of hospice care.
A study published this year by the Dana-Farber Cancer Institute showed that when terminal cancer patients just had a conversation with their doctors about end-of-life options, costs of care went down by 35 percent, compared with those who didn’t.
Moreover, the study said, “higher costs were associated with a worse quality of death,— as reported by caregivers.
The hospice movement has grown dramatically since its importation from Britain in the 1970s, especially after Medicare decided to pay for hospice care in 1983.
Forty percent of terminal cancer patients now use hospice care, but the percentage is much lower for other chronic diseases.
Congress and the Obama administration should find ways to spread the custom so that eventually practically everyone, like my mother, chooses to close out a good life with a good death.