Medical futility is sometimes a tug-of-war between hospitals, families
Medical futility is sometimes a tug-of-war between hospitals, families
Hospitals struggle to balance patient, family end-of-life needs
Nearly every hospital has them, and most doctors have seen them, treated them, and agonized over them. They are patients with a slim, if not nonexistent, chance of recovery, who continue to receive intense, invasive, and costly procedures because there is no other clear alternative.
Frequently, such patients are near death, permanently unconscious, and no longer able to make their wishes known. Yet their families, uncertain of what to do or unable to accept the reality that their loved ones cannot be restored to them, continue to insist that "everything" be done.
"Very often we see so much suffering with our patients because families do not understand or don’t want to let go," says Sister Judy Laffey, RN, chaplain and chair of the ethics committee for the Pittsburgh-Mercy Health Care System, a three-hospital Catholic health system in Pennsylvania. "Sometimes, they don’t follow the clear wishes of their family members. I have even seen some disregard a patient’s living will."
What options do clinicians have when they believe further treatment of a patient’s condition will not be beneficial, and may even prolong a patient’s suffering, yet family members continue to insist? There are no easy answers, and many hospitals’ solutions are complex and controversial, health care providers say.
What is futile care?
For many years, medical ethicists and health care providers have struggled with the issue of medical futility: the question of whether physicians and caregivers are obligated to provide care they believe to be of no benefit to the patient. In fact, the American Medical Association recommended in 1997 that all hospitals develop a medical futility policy governing when hospitals and clinicians could decide to stop treatment or not provide treatments deemed non-beneficial.
The problem, say many experts, is that no one can agree on what "futile" really means. Some clinicians feel that any treatment that effects a change in the patient’s condition cannot be deemed futile, while others believe that medical treatment should be aimed at restoring a patient to some meaningful function. Otherwise, it should be deemed inappropriate.
"But there you get into the quality-of-life discussion, and that can be a very slippery slope to go down," says Andrew Blustein, JD, partner in the health care law firm of Garfunkel, White and Travis in Great Neck, NY. An individual’s quality of life is largely based on his or her own perspective. A life that may not seem worth living to some might be quite valuable to others.
Blustein frequently assists hospital ethics committees in developing guidelines for dealing with questions about futile care. But, he warns, there are also legal implications for these decisions.
"Not every state is the same in terms of what actions are permissible and which individuals can make substituted judgments [medical decisions for incapacitated patients]," he notes. "Sometimes, an ethics committee may decide something that is ethical but not legal in their particular state."
Advance directives should be encouraged
Because determining futility is so difficult, most hospitals have focused on helping patients and families discuss end-of-life issues and on implementing a decision-making process that respects the needs and wishes of both families and patients, says Laffey.
"We are working really hard at our hospitals to get more education to the laity about advanced care planning and starting that conversation with their loved one," she says. "It’s the conversation that people just don’t want to have. They say, I don’t want to talk about that now,’ and then they never talk about it."
A frequent scenario, she says, is a patient who presents to the emergency department with a catastrophic injury, still living, but with no potential for recovery.
"For example, they present with severe bleeding in the brain, and it becomes apparent that their quality of life is not going to be very viable," she explains. "They might end up spending some time in a nursing home and be on a ventilator or a feeding tube and be in a vegetative state."
The patient will eventually die, but by then he or she will also have undergone several expensive and invasive procedures that had little likelihood of improving the patient’s condition.
If such possibilities were discussed in advance, scenarios like these might never occur, she says. "People would know what their loved one would have wanted, and even though it might be hard to allow that person to get comfort care, they would know it was the person’s wishes."
At Mercy Hospital in Pittsburgh, clinicians usually approach the family of a dying patient about palliative care after caregivers have expressed an opinion that nothing more can be done to improve the patient’s condition, says Kenneth Greer, MD, medical director of the hospital’s intensive care unit.
"In the ICU, or any other unit, the team of physicians caring for a patient, in addition to discussing the patient’s care from a technical standpoint, will also raise the question of, Where is this patient going? What are we really doing for this patient?’" he says. "Do we think this is a case where we will be able to restore a patient to his or her pre-hospital condition? Or are we not going to be able get them back out of the hospital?"
A representative of the health care team, usually the attending physician, and a family counselor or member of the ethics committee arranges a meeting with the family, Greer says. The hospital staffers then ask the family members whether they knew the patient’s wishes regarding his or her care.
"We ask them to try to determine what the patient would want given the situation, not what they would want, but what they think that person would want," he explains. "Let’s say the person has had a major stroke, probably will not wake up, and will be in a nursing home, dependent upon someone to feed and care for them, or be on a mechanical ventilator. We present them with the medical data and then we leave it in their hands."
In most cases, the family and the care team will already have had many discussions about the patient’s condition, so this one is not a surprise, he adds.
In most cases, once a patient has reached a point where recovery is impossible or highly unlikely, families will choose to focus on comfort-care measures instead of insisting on treatments that are invasive and have little chance of helping the patient, he notes.
It’s important to emphasize that refocusing the patient’s care does not necessarily mean withdrawing care, Greer says; it simply means making decisions about which treatments would be appropriate given the person’s condition.
"Sometimes it involves limitations. Sometimes it involves taking the patient off ventilators or other life-support devices, but the goal is to use pain medication as needed to ensure that the dying process is as painless as possible for the family and patient," he explains. "We as caregivers kind of pull back from going in frequently to check knobs and devices and do tests. We allow the family to be with the patient as much as possible and have as much privacy as possible. We continue to check to see that they are comfortable and that the family’s needs are being met."
While this approach works in the majority of cases, it occasionally does not, he acknowledges.
"When there are families who do not see it the way we do, we are very much obligated to continue to treat the patient according to the family members’ wishes," he notes.
It is not our decision, but theirs’
If there is strong disagreement, caregivers may recruit the family’s clergy or a member of the ethics committee to continue talking with the family. Still, he says, "It is not our decision, but theirs. We treat the patient as appropriately as possible, realizing we are not going to save the patient but are working within the will and request of the family."
Although the providers at Mercy do a good job of working with families in this situation, it is still very frustrating for clinicians to provide care they believe to be without merit, Laffey adds.
"On one level, I think we have to wait until the family gets to some point where they can let go," she says. "But when you know that nothing you are doing is going to help the patient and the family is waiting for a miracle that just isn’t going to happen, it is very frustrating. From an ethical standpoint, you are looking at both the amount of money and resources spent on this patient and also at the suffering that is caused."
One day, health care providers must get to a point where they can determine that certain treatments are no longer in a patient’s best interest and act on that determination, she says. But, given the current level of debate over futility, that day is probably very far away, she says.
Sources
• Andrew Blustein, JD, Garfunkel, Wild & Travis, P.C., 111 Great Neck Road, Suite 503, Great Neck, NY 11021.
• Kenneth Greer, MD; Sister Judy Laffey, Pittsburgh Mercy Health System, 1400 Locust St., Pittsburgh, PA 15219.
Nearly every hospital has them, and most doctors have seen them, treated them, and agonized over them. They are patients with a slim, if not nonexistent, chance of recovery, who continue to receive intense, invasive, and costly procedures because there is no other clear alternative.Subscribe Now for Access
You have reached your article limit for the month. We hope you found our articles both enjoyable and insightful. For information on new subscriptions, product trials, alternative billing arrangements or group and site discounts please call 800-688-2421. We look forward to having you as a long-term member of the Relias Media community.