Challenges Facing Advanced Medical Directives

Too often conversations about an advanced medical directives get bogged down in discussions of treatments and procedures rather than patient goals, such as avoiding life on a ventilator in a nursing home rather than going home and being able to live reasonably well.

“My feeling is we communicate very poorly and it feels very confusing to families and challenging to physicians,” said Dr. Margaret [Gretchen] Schwarze, a vascular surgeon at UW – Madison who led a survey of surgeons to discover their attitudes toward operating on patients with advanced directives.

Advanced Medical Directives in Relation to Surgery

Directives often have a clause that they don’t apply during and immediately after surgery because that is an artificial situation where breathing and heart and other body functions are being controlled.

Schwarze’s survey, with 900 responding surgeons, found that 50 percent view preexisting advance directives as a barrier to surgery. The study and an accompanying editorial were published in Annals of Surgery last month.

Schwarze, who describes herself as supporting an academic interest in ethics in addition to her medical job, said she was curious why surgeons have such a hard time withdrawing life support from their patients. She wondered if they were just protecting their mortality statistics.

She concluded that surgeons viewed their relationship with patients as partnerships or contracts before entering the operating room. Most surgeons want everything at their disposal to bring a patient through an operation successfully.

“If the patient said no ventilator or no CPR, the surgeon would say he couldn’t abide by that because he feels very responsible,” she said. “If he takes a patient into the operating room and the patient dies, he would feel he had played a role. Some of this is an intense feeling of responsibility and not wanting their hands tied behind their backs during an operation.”

The reviewers of the research said more needs to be done to communicate with patients ahead of surgery and reach some agreement on treatment because operations carry a fair amount of risk: general anesthesia is associated with transient incapacity, postoperative ICU admission increases the risk of prolonged impairment and then up to one-third of all patients older than 65 years admitted to the ICU die within six months of hospital discharge.

There is a pressing need for patients to communicate their wishes for medical treatment to their providers and agents. The danger the commenters saw was that a patient who would not relinquish his or her advanced directive might not be able to benefit from a high-risk elective surgery because of a surgeon’s refusal to operate.

Schwarze told of patients she had who were very frail but needed an amputation and wanted to maintain their DNR in case they failed medically during the operation.

“I have had fights with anesthesiologists who wouldn’t deal with them,” Schwarze said. “Or I have had patients with metastatic cancer who wanted relief from a bowel obstruction, but if they [cardiac] arrested in the operating room they didn’t want to be resuscitated.”

Some interventions, such as CPR, make sense in an operating room where they have a far higher success rate than in an emergency room and have good recovery rates.

“When people are making treatment decisions they have to think about their goals,” Schwarze said.

Medical Billing & End-of-Life Decision Making

Susan Jacoby, who wrote in the New York Times recently about her 89-year-old mother deciding to enter hospice rather than go through more treatment, said a third of the Medicare budget is now spent in the last year of life – and a third of that goes for care in the last month.

While those costs are compiled in the end of a patient’s life, the way Medicare billing works, physicians can’t be paid for time they spend talking with patients and families about the choices they have and the possible outcomes.

“The way Medicare is set up, when you have an office visit it is very clear what you are supposed to talk about and the level of billing to get paid for each visit,” explained Schwarze. “I can talk to a patient about smoke cessation for 1 to 3 minutes and that is a certain code, but 3 to 10 minutes is another code. Unfortunately there is nothing similar to pay physicians to talk about advanced care planning.”

So when patients arrive at the hospital with a serious condition, often they haven’t had a lot of discussion with a physicians about what a feeding tube or chest compression can do.

“Patients don’t have a chance to think through or talk about who will speak for them. Then they show up in the emergency room and you are trying to make these really profound choices without the opportunity to think through what those choices are,” she said.

When the Health Care Reform Act proposed paying doctors for the time they spent talking to patients about end of life care, Republicans, notably Sarah Palin, raised the cry of death panels, although no such thing existed. The bill simply offered to pay physicians for the time they spent counseling patients and explaining their choices and possible outcomes.

The Associated Press, in a fact check article on the issue, reported:

“A provision in the House bill written by Rep. Earl Blumenauer, D-Ore., would allow Medicare to pay doctors for voluntary counseling sessions that address end-of-life issues. The conversations between doctor and patient would include living wills, making a close relative or a trusted friend your health care proxy, learning about hospice as an option for the terminally ill, and information about pain medications for people suffering chronic discomfort.”

The goal of the conversations, added Schwarze, is to make sure the treatment is in line with what a patient wants. With her patients, every case is different, but she has some who have been through several rounds and concluded that another operation is too much, or they don’t want to be stuck on a ventilator in ICU, or placed in a nursing home with poor quality of life. Others want very aggressive treatment.

The best palliative care physicians will lay out options and possible outcomes because, as Schwarze explained, “medicine has its limits and we should describe them.”

Surgeons get paid well for operating, and they get paid nothing for talking about end of life decisions. Some of that can be done by a social worker or nurse, but sometimes the authority of the physician is important to the patient.

Leeway for Surrogates

Finally, Schwarze said individuals and their agents should discuss leeway so the agent or surrogate doesn’t feel guilty for making a decision that might go against expressed wishes but ultimately benefit the patient.

“For example, a patient said he wanted to die at home, but his pain couldn’t be well managed at home. The surrogate decided to bring the patient to the hospital so he wouldn’t suffer. Give the surrogate some leeway – it doesn’t mean prolonging life but it might mean going to the hospital to relieve pain,” added Schwarze.

She said, “Sometimes when we prolong life we prolong suffering.”

To read the first part of this two part series, “A Medical Directive Gives You Control: Making Door County the Best Place to Die,” visit http://www.ppulse.com.