Essential Care: Learning Patients’ Healthcare Wishes
By Barbara Worthington

A critical aspect of physicians’ care of older adults lies in ascertaining their philosophy and personal desires.

Few physicians have perfected their skills in tactfully broaching with their older adult patients the subject of their wishes for end-of-life care. Medical schools provide limited or no education or coaching on ways to launch such a dialogue. Yet the importance of such conversations between patients and their physicians has been highlighted for several reasons, not the least of which involves financial concerns.

A March study published in the Archives of Internal Medicine indicates that more than $76 million per year could be saved if 50% of the individuals who die from cancer each year would engage in end-of-life discussions with their doctors. According to the study, those who reported having such talks had 36% lower healthcare costs during the final week of life.

A 2002 study conducted at five U.S. teaching hospitals among more than 1,100 patients revealed significant costs associated with the disparity between the care patients wanted and the care their physicians thought they wanted. For patients who desired comfort care, the average one-year cost for patients who believed their care was inconsistent with their wishes was $92,000. For patients who believed they received the type of care they wanted, the average cost was $52,000.

Other U.S. studies have indicated that a disproportionate share of healthcare spending is incurred at the end of life and that patients who communicate with their physicians regarding end-of-life preferences undergo fewer life-sustaining procedures and are admitted to intensive care units in lower numbers.

The Archives of Internal Medicine study by Holly Prigerson, PhD, an associate professor of psychiatry at Harvard Medical School, and colleagues suggests a direct link between communications at the end of life with reduced healthcare costs, as well as a better quality of life.

Necessary Information
Although discussing patients’ preferences for their care at the end of life is by no means easy, it’s best if it’s addressed early in the patient-physician relationship, according to experts. The ideal situation finds physicians ascertaining their patients’ wishes long before a catastrophic occurrence renders them unable to communicate their feelings.

“Physicians need to bring up the topic and allow their patients to talk,” says Arthur Kellermann, MD, chairman of the emergency medicine department at Emory University in Atlanta. “We talk about all kinds of personal issues with our patients. This should be no different. The important thing is encouraging the patient to ask questions and express their wishes, not have matters taken out of their hands.”

Kellermann says physicians should encourage family members to initiate conversations aimed at determining patients’ wishes. He says, for example, a son or a daughter shouldn’t be reluctant to inquire while a parent is in good health, “You’re in good health now but that may not always be the case. If I am asked what your wishes are about your care, I want to make sure I represent what you want. Can we talk about it?” He admits that costs and financial concerns can enter the considerations elders face in deciding to extend their lives despite overwhelming physical odds.

Kellermann believes physicians should discuss both the costs and quality of life involved in using extraordinary measures to prolong life when there’s no hope of improvement or recovery. “This is particularly true when an appreciable share of the costs, such as for long-term skilled care, must be borne by the patient or family member. Many are appalled to think that they may spend down all the money their spouse has to live on,” he says. “Societal costs are more abstract and tend to figure less into discussions than anticipated quality of life.”

To paint a picture of the potential quality of life, Kellermann says he attempts to accurately describe what a patient’s stay in an intensive care unit is like. “I also try to accurately portray ranges of outcome, from best possible to less than that,” he says. Acknowledging that patients’ and family views span a broad range, he has found that some patients are content with a very high level of disability while others are not. He says the important concept that should be conveyed to patients is that “you are the boss and we [physicians] should respect your wishes.”

A living will, a durable power of attorney, and educating family members and caregivers pave the way to eliminating the possibility that extraordinary lifesaving measures will be implemented against the wishes of older adult patients. Kellermann suggests providing instructions for family members and caregivers not to call 911 in a moment of panic and posting a copy of physicians’ orders regarding life-sustaining treatment on the older adult’s refrigerator to be accessed in the case of a life-threatening event.

“It is vitally important that people talk to their family members because typically we turn to the family for guidance at such times,” he says. “It breaks my heart when a son and/or daughter says, ‘He never talked about it … I don’t know what he would want.’”

Diane E. Meier, MD, director of the Lilian and Benjamin Hertzberg Palliatiave Care Institute at New York’s Mount Sinai School of Medicine, includes such conversations with her patients as part of her ongoing relationship with them. Just as she inquires about their immunization status and their use of seat belts and sunblock, she makes a practice of determining older adults’ thoughts and wishes related to their care.

“These conversations are of very high importance,” she says, admitting that because of the nature of the practice of medicine, “We don’t know who’s at the end of life.” For that reason, she prefers the term “decision support” rather than end-of-life discussions. Her experience has shown that most older adults are living with chronic diseases. “They may live with them for decades,” she says. “Knowing their philosophy is critically important to know how they want to interact with the healthcare system.”

Meier says patients and family members can regain some small component of control over what happens to them when they enter the “healthcare marketplace” if older adults appoint someone to make medical decisions for them and make their wishes known. When planning for the potential loss of decisional capacity, Meier says, it’s critical to choose a human proxy for negotiating and decisionmaking.

Encouraging patients to express their thoughts and choices “removes the value judgment,” she says. It allows patients to direct and choose their healthcare and “shows respect for their autonomy.” It allows patients to make decisions on how to handle information and to present their personal perspectives on a potential “fate worse than death.”

While Meier readily admits that it’s disturbing to contemplate one’s functional dependency and cognitive impairment, she doesn’t favor documents that specify individual treatments. “I don’t encourage patients to complete living wills,” she says. “These decisions have to be made in real time,” considering specific circumstances along with the knowledge of the odds of recovery. She believes a healthcare proxy and the physician with knowledge of the situation can make the best decisions. “Living wills are essentially useless and potentially harmful.”

“It’s important to stress that this is about empowering people to make their own decisions,” says Kellermann. He suggests that physicians be made aware of the importance of such discussions through professional societies and peer-to-peer conversations. “Doing this right—accurately and compassionately—takes time, and time is something most physicians don’t have,” he says.

In some cases, when patients are advised of their situations, medical options, and potential outcomes, they elect to forego extraordinary life sustaining measures. “When people have a full understanding of what modern medical care can and can’t do, they prefer to be at home with loved ones,” Meier says. That’s often preferable to being treated in a hospital “with tubes and needles stuck in them.”

Palliative care involves minimizing pain, shortness of breath, and discomfort while maximizing dignity, the ability to interact, and quality of life. According to Kellermann, palliative care “focuses on quality of time, not quantity of time.” Allowing patients to make choices in their healthcare provides them with a real peace of mind.

Because of threatening bacteria strains, “Hospitals aren’t always the safest place to be,” Meier says. “Patients are much safer from infection and medical errors if they’re not in the hospital. But they need adequate information to weigh their options.”

“Unfortunately, many people, including doctors, shy away from the topic. Some patients want to deny that they will ever reach the end of life or fear that bringing up the topic will cause their spouse or children distress,” says Kellermann. “The far greater distress comes when I have to try to have this conversation in an ER waiting room at 2 am and nobody knows what to say.”

He emphasizes, “People need to understand that thinking ahead and clearly expressing their wishes is not only the best way to ensure that their wishes will be followed, but they will relieve their loved ones of guilt over the decision.”

Meier advocates for programs that would require medical students, interns, and residents to demonstrate competency in conducting such healthcare discussions in front of faculty members with actor patients. “We should not put doctors out there who have no idea how to address these issues,” she says. She’s a proponent of adopting a system under which physicians are paid for talking with patients and their families. She believes it’s essential to create incentives for adopting such practices. “What we don’t pay a lot for is what’s really needed. And that’s dialogue and decision support,” she says.

She recommends that patients and family members schedule appointments specifically to discuss options related to healthcare choices. “The real satisfaction of the work of being a doctor or nurse is in the relationship.”

— Barbara Worthington is editor of Aging Well.