They’ve already been in the hospital three or four times, and now they’re back,” says Howard Epstein, MD, an internal medicine-trained hospitalist and the medical director of the palliative care program at Regions Hospital, St. Paul, Minn., describing patients who have acute exacerbations of their life-threatening chronic illnesses. “It’s a challenge we face all the time.”
Hospitalists spend a good deal of their time caring for dying patients, and data show that, by many accounts, they do it well.1 But just how near these patients are to death is often uncertain, especially for patients with diagnoses such as advanced heart and lung failure. Despite their slow decline, during any episode in which they are hospitalized, they may indeed die.
“As hospitalists, we encounter these situations regularly, maybe even daily,” wrote Steve Pantilat, MD, SHM past president, in his column in The Hospitalist (July/August 2005, p. 4): “We are the physicians who care for the seriously ill and the dying. The question is not whether we will take care of these patients; rather, when we do, will we be ready and able?”
End of life and palliative care are areas that hospitalists consider important but feel their training is generally inadequate.2 The conversations with patients and families can be challenging and take time, yet the time is worth the investment and they are a critical part of quality care. “We can learn how to conduct these discussions better,” wrote Dr. Pantilat, “and can practice phrases that will help them go more smoothly.”1,3-14 (See “Practice Phrases,” p. 34.)
Is there a difference in the way hospitalists treat those acute exacerbations if they come from or are attempting to return to their homes in the community or in long-term care? Not really, says Dr. Epstein. The exceptions may be in determining what kind of assistance a patient is getting or not getting outside the hospital (e.g., they’ll return home to a “supercaregiver spouse” versus returning to an assisted or skilled nursing facility). A patient in long-term care usually has multiple comorbidities, or their functional state has declined to the point where they need more assistance, palliative care only, or referral to hospice.
When a patient who has chronic obstructive pulmonary disease (COPD) comes in with an acute exacerbation, he says, it’s a good example of when you need to ask those clarifying questions. “If they’re deteriorating and you can paint that broad picture and help them to see that and that they’re going toward some inexorable decline,” says Dr. Epstein, “then they might make different decisions with that information.”
What’s Good in a Good Death?
Phrases such as “good death” and “dying with dignity” bear some interpretation, says Eva Chittenden, MD, a hospitalist with the University of California at San Francisco and a faculty member of its Palliative Care Leadership Center. Most palliative care experts might further define this to mean dying with appropriate respect for who that person is or who that person has been up until this point. A good death, she says, might better be referred to as a death that is “as good as possible.
“People say they want to die at home, but on the other hand, they also want to live forever,” says Dr. Chittenden. The reality is that most people die in acute-care hospitals while receiving invasive therapies.5-6,15 “We want a peaceful death, we want a pain-free death, we want a death where we’re surrounded by our families,” she says, “but at the same time we want to delay that forever. And those two things come into extreme conflict.7,9