Bearing the Burden - Families in Distress

Excerpted from
The Good Death; The New American Search to Reshape the End of Life
By Marilyn Webb

Even families with the best intentions and the greatest resources find themselves exhausted trying to tend to the rigorous needs of the dying. They need help in making good medical or care decisions, they need help interacting with physicians and sorting through their treatment options, and-when they do make tough decisions-they need the power to implement them.

Rather than helping families, both the medical and legal systems tend to construe family concerns as a conflict of interest with the care of the patient. Medical care is primarily patient centered, and should the family disagree with the treatment decisions that are made, the family is often suspected-sometimes even accused-of abuse.

Yet in looking at the Cobbs, it is not so clear who was the abused and who was the abuser. Hale and Sally were both abused by a medical system that refused to acknowledge the impact of extended-and hopeless-care imposed on both a terminally ill patient and his family against their wishes. Was the family wrong in trying to help Hale hasten his death? But what, then, of the doctors who kept on treating, ever prolonging the inevitable, while Hale suffered and his family did the caring?

Now that life can be almost mercilessly extended, we are finding that we have failed as a nation to assess adequately the goals of modern treatment-when treatment makes sense, when it undermines the well-being of both patient and family, and what happens then. There is no cultural agreement about when treatment should stop, and no good social provisions for long-term care.

At the very same time that Hale was in the nursing home, Jean Elbaum, who was comatose, was in a nursing home in another suburb nearby. For two years, Jean's husband, Murray, tried to have her life-sustaining equipment shut off Since she had not put her wishes about medical treatment in writing, the nursing home refused to do as Murray asked. Finally Murray won his case in court, the year before Hale died. But a second court ruled that he must pay the $100,000 the nursing home charged during the time he had tried to force it to stop his wife's treatment.

Individual families are heroically caring for their own, but they need informed, sensitive help, much like the patients these families are caring for. The ethics of caring-the idea that everyone should focus on the comfort of the sick person-do not acknowledge family members' strong emotional bonds with one another, and how they might interpret what they need to do as a result of these bonds. Nor do they acknowledge the sacrifices that medical success demands.

Nearly two decades ago-as illness began to be prolonged-the grassroots phenomenon of support organizations and self-help groups for patients and caregivers began to appear. The fact that these groups are mushrooming throughout America in itself is a clue about the magnitude of difficulties that families and patients face with illnesses that entail long-term declines.

Today such groups have formed to deal with almost all of the illnesses that Americans now die of. Patients and families across America can attend support groups for cancer, AIDS, Alzheimer's, Lou Gehrig's disease, multiple sclerosis, kidney, heart, and lung disease. They provide information on treatment and research; on how to communicate with physicians and caretakers; on what to expect and how to go through diagnostic and treatment procedures; and they offer psychological, spiritual-even physical and financial support-as well as counseling and therapy on coping with illness, decline, and death, and on the extreme burdens of caretaking.

"We know from experience," says Diane Blum, M.S.W., executive director of Cancer Care, Inc., "that information is a powerful tool that can help people cope with a cancer diagnosis and improve the quality of care they receive." The important role these groups play cannot be overrated, given studies that now show just how terrible the impact of extended dying has been on American families.

Recall the SUPPORT study that examined the cases of some nine thousand people who came into emergency rooms throughout the country with five major illnesses, including heart, kidney, lung, cerebrovascular disease, and cancer. These patients (nearly five thousand of whom died) and their families were followed from the time they were admitted until they died, or until the six-month follow-up period had ended.

Dr. Joanne Lynn, SUPPORT'S codirector, says that researchers learned that treatment decisions are in fact made not by the patient alone but by whole families, in consultation with their physicians. These decisions-and even those portions of treatment decision that the patient might make by himself-are most often arrived at with the entire family's well-being in mind. They are not, as doctors and lawyers have long believed, simply patient centered.

Among the study's major findings was the enormous impact of illness on American families. Most important, researchers found that the consequence of serious illness and its medical treatment-the long-term care that may be needed after a patient is over an initial crisis-can have a major, and sometimes catastrophic, impact on the patient's entire family, even putting other family members dangerously at risk. In looking at the impact of serious illness on 2,661 of the patients who survived long enough to return home, the SUPPORT study researchers found that for 55 percent-or more than half of them-the family unit as a whole experienced one or another very serious problem, or a whole complex of problems, as the result of that one member's illness. Three-quarters of all these patients lived more than six months, so the time during which these problems occurred was considerable.

The serious adverse effects on the families included the following:

• In 34 percent of all the families studied, the patient was so impaired that he or she required a large amount of caregiving assistance from another family member.

• In 20 percent of all the families in the study, someone had to quit work or make a major life change to give the care needed.

• For 29 percent, a major source of family income was lost; in 31 percent of the study's families, most of the family savings were spent. (The study didn't address the debts that remained or whether families were forced, as some are, into bankruptcy.)

• For 17 percent of all the patient families, the cost of the illness caused a major change in family plans, including moving to a less expensive home, delaying medical care for another family member, or altering someone's educational plans.

• For 12 percent, another family member became ill or unable to function normally because of the physical or emotional stress of one family member's illness.

The SUPPORT researchers point out that their data merely confirm other studies: One study of four hundred cancer patients found that 90 percent of them were dependent on another person for assistance with personal care, shopping, or transportation, and that their caregivers reported a similar loss in savings and having to go into debt.

A second study, of heart bypass patients, found that a third of their spouses reported "severe anxiety" and nearly half said their financial situations were "highly inadequate." A third found that spouses of patients with Alzheimer's disease had poorer mental and physical health than the general population.

National attention has been focused on the lack of health insurance and the financial pressures that uncovered medical care inflicts on families. But 96 percent of the patients in the SUPPORT study were covered by health insurance or Medicare. Acute medical care was not what created financial burdens. Rather, what was devastating were the home-care costs-which were not covered by Medicare or by other medical insurance-the financial, emotional, and physical costs of providing the additional daily care that seriously ill and dying patients required once they were out of the hospital.

In fact, when researchers looked further, they found that while many patients might opt against choosing life-prolonging treatment so as not to burden their families, those patients and families who chose treatment aimed at "comfort care" rather than "life-extending care" experienced the greatest economic hardship. Researchers attributed that to the relative lack of home-care coverage in our medical care system, which favors in-patient acute care.

Although families bear the impact of extended treatment most heavily, they have had to fight to influence treatment decisions. And instead of establishing support systems for beleaguered families, our society has brought forth phalanxes of lawyers, ethicists, physicians, and social commentators who threaten-as we have seen-to put limits on the kinds of medical choices families can and cannot make, and to monitor them if they suspect abuse of services or even of the patients themselves.

Interestingly, while some other researchers suggest that relatives may not be the best decision makers because they might have a financial interest in one decision or another, the SUPPORT study found that the possibility of economic hardship identically affected the preferences of the patients and the family surrogate, and had nothing to do with any disagreements about the goals of care.

"Families are those who grieve for the patient's suffering and death, who have a history of making decisions that account for the well-being of all concerned, and about whom the patient most likely would have had the most concern," Dr. Lynn says. "Somehow to imagine that the society could, or should, set up systems that remove the family from decision making is almost outrageous."

Although some fraction of American families may be downright abusive, even healthy families aren't well served by the current, unrealistic medical model: "We must save the patient; it's not our concern whether the family has the resources to give him long-term care." Patients' rights and legal protections, Dr. Lynn concluded, are not the real concerns of healthy American families.

Among the more astounding findings she cites come from the work of her colleague David Reiss, M.D., a psychiatrist at George Washington University Medical Center. In examining the long-term survival of kidney disease patients in a dialysis program, Dr Reiss learned that those patients who came from the healthiest, most intact, best educated, most supportive families were the ones who survived the shortest length of time. In fact, strong family bonds almost predicted short survival.