Better endings are possible

Patients need ideal medical care at the end of life, but they don't always get it.

The end of life is a point when patients—facing tough decisions and suffering from many symptoms—really need ideal medical care. Sadly, they don't always get it, said palliative care experts at the Society of Hospital Medicine's annual meeting.

“We have excellent data [showing] that people suffer at the end of life. Really, end-of-life care is not yet standardized,” said Stephen Bekanich, MD, a hospitalist and medical director of the University of Utah Hospital's palliative care service.

One of the basic necessities of effective palliative care is a clear understanding between the patient and physician, said Keith M. Swetz, ACP Member, assistant professor of medicine at the Mayo Clinic in Rochester, Minn.

The physician needs to be clear on exactly which interventions are wanted. For example, the patient may have a DNR order, but still want to receive dialysis and antibiotics. And the patient should understand which benefits are realistic to expect from treatment, such as whether an intervention offers any possibility of a cure. “It's really important that [patients] understand if the care they're receiving is palliative,” Dr. Swetz said.

Treatment and device withdrawal

More and more end-of-life patients (and their physicians) will face decisions about withdrawal of devices, such as left ventricular assist devices (LVAD), Dr. Swetz said. Nearly 3 million cardiac devices have been implanted in Americans at this point, so hospitalists can expect to see more patients dying with the devices in them, he noted.

It may feel different, and more uncomfortable for a physician, to withdraw a device than to withhold a treatment that a patient doesn't want. But the actions are ethically and legally equivalent, Dr. Swetz said. “The withholding or withdrawing of a device is ethically acceptable,” he said.

Withdrawing or withholding treatment is also notably different from physician-assisted suicide (which, in the United States, is legal only in Oregon, Washington and Montana), Dr. Swetz noted, because it's the intent of the action that matters. “When [patients] die within two or three minutes of turning off the LVAD or extubation, they die of heart failure or sepsis,” he said. “They don't die of turning off the device.”

Still, such actions may be difficult for a physician, in which case it's acceptable to remove oneself. “You as clinicians do have the right to say ‘I don't feel comfortable with this',” Dr. Swetz said.

Offer sufficient pain medication

Clinicians should, however, feel comfortable providing enough pain medication to put patients at ease. “People are so afraid of strong medication. You have to realize strong medication is appropriate for patients who have a life-threatening or life-limiting illness,” Dr. Swetz said.

Insufficient use of strong pain medication can force patients to repeatedly ask for more drugs, which can make clinicians suspicious. It's important to recognize the difference between addiction and pseudoaddiction, which results from insufficient pain control.

“That's not the patient's fault; that's our fault for not writing the right orders,” said Howard R. Epstein, ACP Member, hospitalist and medical director of commercial operations and clinical design for BlueCross and BlueShield of Minnesota.

Dr. Epstein offered some clinical pearls for effective pain management in an easy-to-remember form. “Do it by the mouth, do it by the clock and do it by the ladder,” he said.

Whenever possible, it's preferable to put patients on oral pain medications, because it will simplify their transition to home or a nursing home. “Because we practice in the hospital, it's easy to start an IV,” Dr. Epstein noted. “There are just as effective ways to do it [orally].”

He also recommends scheduling pain medications—keeping in mind particularly painful points of the patient's day, like physical therapy—because by the time a patient asks for pain relief and a nurse delivers it, it's already too late. “You'll end up chasing your tail,” Dr. Epstein said.

In addition to the scheduled doses, a set dose (about 10 to 20% of the daily dose) should be available for breakthrough pain. “I've never met anybody who can guess exactly the dose to give somebody so they don't have breakthrough pain,” Dr. Epstein said.

The third step in Dr. Epstein's recommendation refers to the World Health Organization's analgesic ladder (available online) . The ladder suggests types of drugs to use for pain, and Dr. Epstein offered an additional piece of advice on drug choice: Keep it simple. “Try to use one medication and titrate it up,” he said.

He and co-presenter Stephanie Grossman, ACP Member, also recommended using an equianalgesic table to calculate appropriate doses, noting that it's important to be careful with the math. “When the numbers are complicated, I do it with a colleague, because you make math mistakes,” said Dr. Grossman, director of palliative care at Emory University Hospital in Atlanta.

The biggest mistake to avoid is ignoring pain, the experts agreed. “For many patients, analgesia is really low on the priority list,” said Dr. Epstein. “You can treat their pain and still effectively manage the disease.”

Treating non-pain symptoms

Effective management for palliative care patients often includes treatment of a number of other common symptoms, which Dr. Bekanich reviewed for meeting attendees. More than 70% of patients admitted to palliative care units suffer from nausea and vomiting. The main causes are pain medication and constipation—a common side effect of the medication for which the pain experts recommended prophylactic treatment.

Unfortunately, there's still relatively little data on treatment of nausea and vomiting. “We've only studied it in any formal way in the last two to two-and-a-half decades,” said Dr. Bekanich.

Determining the source should be the first step in treatment, and then drug and non-drug measures can be taken. “If somebody has really bad nausea and vomiting, when it's mealtime I'll have their door closed and a fan on,” offered Dr. Bekanich. Like pain medication, anti-emetics should be scheduled for patients who have had continuing problems, he noted.

Fans can also be a partial solution to the problem of dyspnea, which, although common among palliative care patients, is difficult to evaluate. Treatment should start with non-drug interventions like a pocket fan and a breathlessness plan, and then proceed to opioid therapy, or eventually benzodiazepines, if the condition is severe and unresponsive to other treatments.

Non-drug measures should be the first responses to two other end-of-life problems: terminal secretions and agitation. Both of these symptoms have a particular impact on patients' families. Agitation, in particular, creates negative memories for family members and has been associated with “an astounding rate of causing PTSD,” Dr. Bekanich said.

Options for treatment of terminal secretions include educating the family, repositioning and gentle suction, but it's not clear from the evidence which drugs are most effective, Dr. Bekanich said. For agitation, he has found haloperidol to be effective and had one definite caution: Don't use restraints, which can make patients even more agitated.

“[I'd use] one-to-one sitters before I would use restraints,” Dr. Bekanich said.