Home End-of-Life Care Palliative care: Five things you may be doing wrong

Palliative care: Five things you may be doing wrong

January 2016

HOW MUCH OF WHAT YOU DO for patients at the end of life is supported by evidence, not just tradition? That’s a question that one palliative care expert tackled at the 2015 University of California, San Francisco (UCSF) annual meeting on managing hospitalized patients.

Steven Pantilat, MD, professor of medicine in UCSF’s hospital medicine division, said physicians’ focus on making patients comfortable explains their reliance on strategies that aren’t necessarily backed by strong evidence.

FOR A MORE PERSONAL perspective on palliative care, read our story on a hospitalist’s struggle with palliative care and caring for his father. “Are you trying to kill your dad?”  (May 2021)

“There’s a sense that a lot of palliative care is art, and that is certainly true,” explained Dr. Pantilat, who directs the palliative care program and the palliative care leadership center at UCSF. “But as palliative care grows as an academic field, we’re seeing an increasing amount of science in our practice.”

“Oxygen gets in the way of people getting close.”


~ Steven Pantilat, MD, University of California, San Francisco

That research demonstrates that some palliative practices may not only be ineffective, but cause patients additional discomfort. Dr. Pantilat presented data related to five commonly-used strategies in end-of-life care.

Walk through any hospital, and you’ll see plenty of patients receiving supplemental oxygen for shortness of breath. That makes perfect sense for patients who are hypoxemic. But what about patients near the end of life who aren’t suffering from hypoxemia?

Dr. Pantilat said that for these patients, there is no evidence that supplemental oxygen provides any benefits. He pointed to one Australian study in the Sept. 4, 2010, issue of The Lancet as an example. Researchers “who created a randomized, double-blind placebo-controlled trial where no one knew which patients were receiving oxygen “found that supplemental oxygen did nothing to relieve dyspnea symptoms in people who were not hypoxemic.

But that finding is only part of the story. As Dr. Pantilat pointed out, supplemental oxygen can be uncomfortable, with many patients experiencing ear pain or mouth dryness. Plus, nasal canula can create a barrier between patients and their loved ones.

“Oxygen gets in the way of people getting close,” Dr. Pantilat said. “They don’t want to get in and caress their loved ones’ face or give them a kiss.”

On his service, clinicians present the pros and cons of oxygen to patients’ families and propose an experiment. “We’ll suggest taking the oxygen off and watching what happens,” he said. “If patients aren’t hypoxemic, you’ll see that nothing changes, including their respiratory rate.”

Another downside of supplemental oxygen: It may prolong dying. “As patients’ respiratory rate starts to fall, carbon dioxide is increasing, and oxygen levels are decreasing,” he said. “At some point, the oxygen level gets so low it’s no longer compatible with life. I’ll often explain to families that oxygen may be prolonging things unnecessarily, not adding to the patient’s comfort.”

What options do hospitalists have? They certainly can treat underlying causes of shortness of breath such as pneumonia and pulmonary emboli, and draining a pleural effusion often makes these patients feel much better. “As you take off a liter or two from the pleural space,” said Dr. Pantilat, “you’ll find that patients’ breathing is eased long before their lungs are actually working better.”

For patients who need this procedure repeatedly ” think of patients with cancers like mesothelioma “he considers a PleurX catheter. “You can also put these catheters in the abdomen because large ascites will also restrict breathing,” Dr. Pantilat said. “Paracentesis can relieve the ascites to ease breathing, not just abdominal discomfort.”

Opioids can also ease shortness of breath, with good randomized trials showing that opioids in low doses can effectively treat dyspnea. “You can use 2 mg of morphine orally,” he explained. “That is an incredibly small dose, and nobody will stop breathing.”

Other low-tech approaches can make patients more comfortable. “There is something about cool air blowing across your face that physiologically relieves dyspnea,” he noted. Because the windows in his hospital are sealed shut, his service provides fans so patients have the sensation that they’re breathing fresh air.

Finally, a cold cloth on the face may help. An excellent review of the evidence behind this strategy was published in April 2008 in the Cochrane Database of Systematic Reviews. “There’s a physiologic response,” said Dr. Pantilat, “that actually eases shortness of breath.”

Atropine for rattle
To treat the phlegm that gathers in the back of the throat “otherwise known as the “death rattle” “Dr. Pantilat for years has recommended sublingual atropine.

But he’s revised his recommendation, now that new data show the therapy does virtually nothing. An article published in the January 2013 Journal of Pain and Symptom Management, for instance, found that therapies like atropine offered no benefit and were not superior to no treatment.

Dr. Pantilat also noted that the death rattle doesn’t hold up to scrutiny as a particularly good prognostic sign. In a separate study published in the January 2014 Journal of Pain and Symptom Management of cancer patients on an inpatient palliative care unit, the death rattle was noted an average of 57 hours before death, but with a standard deviation of 82 hours.

While the death rattle is disturbing to family members, there are no signs that it makes patients uncomfortable. That makes Dr. Pantilat reluctant to treat it, particularly given the newest evidence on atropine. “I don’t know exactly what the harm of a death rattle is,” he said.

“Most patients aren’t conscious, so why do something that doesn’t work?”

What does work? “Try turning the patient,” Dr. Pantilat advised. “Often if patients are in one position and you turn them, the symptoms will subside until everything collects again on the other side.”

And while he avoids suctioning these patients because the procedure can be so uncomfortable, Dr. Pantilat urged hospitalists to not ignore family members’ concerns. “The more families hear from us that we understand what the symptoms are,” he said, “the better we can explain to them what’s going on.

IV fluids
There are two camps on the subject of IV fluids at the end of life, each with a strong opinion. One side insists that patients need IV fluids to be comfortable, while the other believes in IV-fluid limits.

Dr. Pantilat counts himself in the “limits” camp, in part because he’s seen so many patients develop edema. “Stopping eating and drinking is normal at the end of life,” he said. “Giving patients artificial nutrition and hydration doesn’t seem to work.”

In a study published in the Jan. 1, 2013, issue of the Journal of Clinical Oncology, researchers compared the effects of two doses of IV fluids in advanced cancer patients who couldn’t tolerate oral fluids. They gave one group 1,000 milliliters a day of normal saline and a second group 100 milliliters a day “and found no difference in symptoms, quality of life or median survival rates.

“What I take away from this is that it’s reasonable to minimize IV fluids,” he said. “But if people are really stuck on giving IV fluids, I won’t fall on my sword. We’ll provide IV fluids, but these data support minimizing IV fluids.”

Interestingly, he added, IV fluids don’t reduce thirst. “You might think that if patients are thirsty, we’d give them IV fluids, but it doesn’t reduce thirst. Sipping water helps, and sucking on ice chips helps a lot.”

Giving IV fluids creates discharge problems as well. “Now that you’ve put the patient on IV fluids, how do you provide those at home?” Dr. Pantilat asked. “The IV has to be changed every four days, but the hospice agency doesn’t want to change it. We see patients getting PICC lines simply to get IV fluids at the end of life, so it does create a management challenge.”

Docusate for constipation
According to Dr. Pantilat, there’s a good reason why patients in the hospital seem particularly focused on their bowel movements.

“You don’t know how your lungs or your heart are working,” he said, “but you sure know if your bowels are.”

Because bowel function is so important to patients and their family members, many hospitals include drugs like docusate on their typical admission orders. While bowel stimulants are an essential tool, Dr. Pantilat said there’s evidence that docusate doesn’t really help patients that much.

In a randomized trial published in the May 2008 Journal of Palliative Medicine, researchers gave advanced cancer patients either senna alone or senna and docusate. Patients who received only senna had more frequent bowel movements than those given senna with docusate.

And while a drug like docusate probably isn’t harmful, Dr. Pantilat pointed to its one obvious downside: its taste. Docusate tastes so bad, he said, that he hesitates to prescribe it for that reason alone. (For a demonstration of just how bad docusate tastes, watch a UCSF-produced video taste test on the GeriPal Web site.)

What other options do hospitalists have? “We give senna twice a day up to four times a day,” Dr. Pantilat said, “and we add other agents like polyethylene glycol, lactulose and sorbitol. All seem to work, and they taste way better.”

While Dr. Pantilat gave a solid thumbs-down to naloxone, he noted that a study in the May 29, 2008, New England Journal of Medicine gave good reviews to methylnaltrexone, which is used to treat stimulant-resistant opioid-induced constipation. When methylnaltrexone works, which is in about half of all patients, it usually offers relief in about an hour.

“So if your patient on opioids has gone three or four days with no bowel movement, and other approaches haven’t worked,” Dr. Pantilat said, “definitely give methylnaltrexone a try. When it works, it’s really helpful.”

Chemotherapy for quality of life
Is chemotherapy a good idea to help cancer patients live longer “and better quality “lives?

Dr. Pantilat said that typically, chemotherapy is feasible for patients with better functional status. Not surprisingly, chemotherapy in the last weeks of life is considered a marker of poor quality of life.

But the challenge for physicians is knowing when patients are in their last weeks. A study of cancer patients published online this July by JAMA Oncology found that four months before they died, 50% of patients were receiving chemotherapy.

Even more surprising, researchers found no difference in survival rates between patients receiving and not receiving chemotherapy. “The idea that chemotherapy will somehow make you live longer turns out not to be the case,” Dr. Pantilat said, “at least not in practice.”

What about quality of life? The study found that chemotherapy was associated with a worse quality of life at the end of life, even for patients with good functional status. “It’s exactly the opposite of what we have thought and told our patients,” Dr. Pantilat said. “People did worse at the end of life if they got chemotherapy.”

In part because of these data, Dr. Pantilat doesn’t recommend giving patients chemotherapy in their last months. And when trying to estimate a patient’s final days, he explained that there are plenty of clues.

The most obvious one is functional status, which studies have shown is a significant predictor of mortality. Dr. Pantilat said he likes the Karnosky Performance Status score in people with solid tumor cancer because it is relatively easy to use. “A score of 100% is normal and 0 is dead, so I focus on 50%,” he explained. A score of 50% means the patient spends half or more of his or her waking hours in a bed or chair and is associated with a prognosis of between two and three months.

“As a hospitalist and palliative care physician,” he said, “this score helps me at least raise the question about whether chemotherapy is going to be effective.”

Edward Doyle is Editor of Today’s Hospitalist.

How do you respond to …
“Our mom is a fighter.”
“Family members are saying a lot in this statement, but being ‘a fighter’ doesn’t tell you what the patient or family wants. I say something like, ‘Yes, she has been very strong, but I worry that the illness is stronger.’ I emphasize ‘worry’ because I have found that to be a very helpful phrase. It’s an expression of empathy, and it’s telling family members that if I’m worried, they should be worried too. When someone says the patient is a fighter, I’m not going to argue about that, but I’m going to reframe the conversation.”
‘Steven Pantilat, MD, University of California, San Francisco

How do you respond to …
“He wants to live.”
“It’s obvious that the patient wants to live, but what are you supposed to say? I say, ‘Of course he wants to live, but does he want to live like this?’ I might be referring to a patient suffering from multisystem organ failure who has gangrene in his fingers. People imagine that patients are somehow going to be able to live the way they were before they got sick, and that’s not always the case.”
‘Steven Pantilat, MD, University of California, San Francisco

How do you respond to …
“Are we making the right decision?”
“I say something like, ‘I can see that you’re doing what you think is best for him.’ We may not agree with that decision, but we have to recognize that these decisions are very hard and stressful for families. Supporting them in their decision-making turns out to be very important. Research has shown that expressions of empathy and support for family members increase satisfaction levels tremendously in the outpatient setting. We have every reason to think that would be true in the hospital as well.”
‘Steven Pantilat, MD, University of California, San Francisco

Published in the January 2016 issue of Today’s Hospitalist