'TC She is a 92-year-old woman -- anybody's mother, anybody's patient.
Because of bad circulation, she developed a foot ulcer, for which surgeons offered two choices: Amputating the foot in a fairly simple surgical procedure, or a more complicated bypass operation to save her foot by grafting other blood vessels onto the decayed area.
Her chances of walking were limited either way because of her severe arthritis. But her family wanted to save her foot. So she chose the bypass, and at first things went well. Then she had a heart attack on the operating table, which led to congestive heart failure. In the intensive care unit, she was put on a respirator. Soon, she developed a wound infection for which she needed powerful antibiotics, which triggered debilitating diarrhea, which in turn was compounded by post-operative confusion caused by the long hours under anesthesia.
After all this, the woman, whom her doctor did not wish to identify by name, still has the ulcer -- and still faces amputation.
What befell her at the hands of well-meaning, but overzealous doctors is, to many older people, a nightmare worse than death, a story of too much intervention, too scantily explained.
In fact, far from being unusual, says Dr. Muriel Gillick, a Harvard Medical School geriatrician, this is a typical case of "the dwindles," the cascade of disasters that can ensue when a frail older person is aggressively treated for one problem but winds up with a host of others that doctors could have foreseen -- but rarely mention.
Caught in between
Many older people are so robust, she says, that they should, and often do, make medical decisions just the way a younger person does -- going for a cure wherever possible. And some are so close to death the choice is clearly between pointless medical heroics or palliative care and a death with dignity.
But for millions of others, especially the intellectually or physically frail, it is not the big life-or-death decisions that cause the most anguish for both patients and families, but the smaller decisions, where choices don't come with red flags and where, as Dr. Gillick puts it, "there is something between life and death, and it's called hell on Earth."
Part of the problem, say Dr. Gillick and others who study how medical decisions are made, is that doctors are good at informing patients of big complications like death. But they are -- less explicit -- and patients less inquisitive -- about smaller problems that, taken together, can make life not worth living.
On top of that, doctors often remain mum about complications that are likely to land in some other doctor's lap.
Increasingly, however, those who study medical decision-making are finding ways to help cut through the mess. The three legs of this decision triad are:
* Don't put too much stock in the importance of chronological age per se.
For many older people, says Dr. Robert Butler, chairman of geriatrics at the Mount Sinai Medical Center in New York, the most important thing is daily functioning and the most important question is how good that functioning will be in the months -- not just days -- after treatment.
* Many medical decisions can and should be reassessed early and often.
Most people act "as if one decision makes all kinds of future decisions, but we don't have to do it that way," says Dr. Joanne Lynn, a Dartmouth Medical School professor. "You can try something, keep assessing it and be willing to stop."
* Get help in thinking things through. This is especially important if you are caught between specialists who care more about saving "their" organ than about your overall well-being.
"Make your doctor give you some kind of assessment of where you stand, which doctors don't do," says Dr. Gillick. "Doctors don't want to tell people the bad news . . . they don't like to put it all together . . . they view it organ by organ, or disease by disease."
Dr. Jeanne Wei, chief of gerontology at Boston's Beth Israel Hospital, agrees.
"It's not uncommon that an intervention for one disease can confound another," she says, "so somebody has to stand back and see all of what's wrong with you, look at all the treatments and consolidate them."
And if you're still stuck in the throes of medical decision-making, there are some other tricks, too.
Several years ago, two medical ethicists, Drs. Linda L. Emanuel of Massachusetts General Hospital and Ezekiel Emanuel of Dana-Farber Cancer Institute, developed a 30-minute "structured interview" for doctors to use when helping patients make difficult medical decisions.
The Emanuels applaud the movement toward living wills, advanced directives and health care proxies, but all too often, they say, preferences are fluid, and both patients and doctors stumble when asked to be explicit about their values and specific about what treatments they would and would not want.
Their solution is a work sheet that uses six "pretty dismal" scenarios, as Dr. Linda Emanuel puts it. Two scenarios involve coma; two involve dementia; one, a situation the patient comes up with, and the last, a temporary inability to make decisions.
For each scenario, the doctor helps the patient sort out which of eight or nine treatment options she would like; which she would reject; which she might try with frequent re-assessments and the option to change course.
Even if a patient eventually winds up in an unforeseen situation, Dr. Emanuel says, the fact of having gone through this exercise makes it easier for caretakers to guess about what the patient would want, which is especially helpful "when people end up so sick they can't talk to us."
And there is another, increasingly popular strategy as well for those agonizing about medical options.
Dr. Albert Mulley, chief of general internal medicine at Massachusetts General Hospital, has developed nine interactive videos, now available at 100 hospitals and HMOs nationwide.
The patient simply punches into a computer the specifics of her case, then listens as specialists explain the pros and cons of each treatment and as other patients, both satisfied and dissatisfied, describe how their choices worked out.
Making a choice
And what do you do after you've absorbed all this outside help? Listen to your heart, which many older people do well, sometimes to the astonishment of their middle-age offspring.
Two and a half years ago, for instance, Celia Margolskee, 93, who lives at the Hebrew Rehabilitation Center for Aged in Roslindale, Mass., decided not to have surgery for colon cancer because it seemed to her like too much suffering for too little gain.
Her daughter, Helen Cutler of Brighton, recalls being amazed that the doctor "just left it up to her." Yet her mother, then 91, had no trouble, she says, deciding to skip surgery and "just take her chances."
Since that decision, Ms. Margolskee adds, she has had no
regrets. Recently, a neighbor of Ms. Margolskee's at Hebrew Rehab, Valetta Lampie, 101, echoed that view.
Ms. Lampie, who is legally blind, has decided not to risk surgery for cataracts and a more serious eye problem.
The doctors "don't tell you too much," she says.
But she will.
"I don't want to take a chance on losing the small amount of sight I have," Ms. Lampie says. "At my age, I don't imagine I'll have many more years, but I want to make the most of what I have."