No one enjoys telling a patient it's time to consider palliative care and hospice. “Why should hospitalists get stuck having these discussions?” asked oncologist Thomas J. Smith, MD, FACP, during a session at Hospital Medicine 2014, held in Las Vegas in March.
Because patients want them to, according to a survey Dr. Smith and colleagues conducted on the cancer service of Virginia Commonwealth University. (Dr. Smith is now a professor of palliative medicine at Johns Hopkins in Baltimore.)
“We asked them, ‘Do you want to discuss this with your oncologist?’ No, by a resounding margin, people seriously ill with cancer would rather discuss advance directives and goals of care with you than me,” he told his audience of hospitalists.
Both seriously ill patients and the specialists who treat them—not just oncologists, but cardiologists and nephrologists, for example—have difficulty shifting the focus of their relationship from curing disease to maximizing quality of life, Dr. Smith said.
Thus, awkward as it sounds to plan the end of life with a near-stranger, hospitalists may be best positioned to introduce patients to palliative care and/or hospice options. Dr. Smith and Stephen J. Bekanich, MD, medical director of the palliative care services for Seton Healthcare in Austin, Texas, offered advice on how to conduct this difficult conversation.
The first step to a successful conversation is knowing when to have it. “The earlier the better,” said Dr. Bekanich. Some Medicare pilot projects now allow patients to receive hospice benefits for up to 2 years, but a more typical trigger for the conversation is about 6 months' life expectancy.
“When you see the person has 3 to 6 months to live, when you've got their second admission in 6 weeks, hepatic failure, bad COPD, say, ‘Let's set up hospice for if and when you need it,’” Dr. Smith said.
Other specific triggers that his hospital uses include heart failure with New York Heart Association Class IV or ejection fraction less than 20%, COPD with hypoxemia at rest and an FEV1 less than 30%, and liver disease with an international normalized ratio greater than 1.5 or an albumin level below 2.5 g/dL. Another common trigger is the “surprise” question: Would you be surprised if this person were to die in the next 6 month
Starting the conversation early gives patients more time to think about their choices, assess their options, and make use of services. But you may also catch them in a better state of mind. “Patients are better able to handle it because they're more well. They're less actively dying,” said Dr. Smith. “From my experience, people can get so sick that they don't have any time or energy to address these issues.”
Although early is better, it's also never too late. “How long should you stay in hospicacirc;128;157; said Dr. Smith, noting that the median stay is 13 days. “Other experts have said at least 3 months, but I think that's unrealistic. Patients are often very satisfied with these very short hospice stays. They want to keep fighting, fighting until a couple weeks left to go.”
Once the need for a conversation is apparent, do some background research before entering the room. Useful information may include beliefs about hospice in the local community. “In Baltimore, as I've learned, [hospice] is [seen as] a place where people went when you were dying of HIV/AIDS and were poor and had nobody else to care for you,” said Dr. Smith.
In Miami, Dr. Bekanich found even more surprising interpretations of the word. “Hospicio means awful things in some countries. In Bolivia and Columbia, it means a place where delinquent boys go,” said Dr. Bekanich.
There may also be individual patient or family circumstances that should shape the conversation, Dr. Bekanich said. “If the family is really religious, for example, I try to never go in the room without our palliative care chaplain. If there's somebody in the family that we know is a substance abuser, I try to never have one of these discussions without a social worker,” he said.
In the meeting
When you go into the meeting, turn off phones and pagers and prepare to spend up to an hour. “There are things you can do to cut down on that hour time, but overall, good discussions are going to take 40 minutes,” said Dr. Bekanich. “If I'm in a time crunch, I oftentimes bring someone else in. As soon as the discussion turns to ‘This is what hospice does,’ I turn it over to the social worker and I excuse myself.”
That hour probably won't be reimbursed well (although you can use critical care or extended time codes to collect the RVUs, Dr. Bekanich said), but consider the time you might be saving. “If you look at it as ‘It's going to be me admitting this patient again with the same issues or one of my partners,’ that 1 hour is nothing,” he said.
Before you launch into the tough subject, assess the patient's and family's understanding of the illness. “I have patients who have been on dialysis for 6 or 10 years,” said Dr. Bekanich. “I have yet to find someone who can talk to me about that for more than 2 or 3 minutes. It gives you a really good idea of where they're coming from if you have them explain what they know.”
Also have the patient or family explain some nonmedical aspects of their situation. “Even if the patient can't speak—they're on the vent or encephalopathic—I always talk to the family about what they were like before all this illness stuff happened,” said Dr. Bekanich. “It shows you care and makes all these connections that you would not have.”
When you get to the subject at hand, it's OK to be a bit scripted in your explanation of palliative care. “This [from Diane Meier, MD, FACP] is the best definition I know: “Specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis.’ And its goal is to provide an extra layer of support,” said Dr. Smith.
The latter point can be particularly convincing, according to focus group research. “Most Americans are clueless as to what palliative care is,” said Dr. Smith. “But when you describe it as an extra layer of support to maintain your quality of life, people say, ‘Yeah, I like that.’”
You may need to dispel some myths. “They won't drug you up to keep you quiet or kill you off sooner. You can still have CPR,” said Dr. Smith. “They don't stop your medicines.”
Also, reassure patients that this conversation doesn't mean you're abandoning them. “[After saying] you're not going to get better from this, always follow that with, ‘No matter what, we'll be with you every step of the way.’ And then try to evolve a system that means it,” said Dr. Smith.
As a hospitalist, one way to follow through on that promise is to set a reminder to call and check on patients after they've entered hospice. “Patients and families really appreciate this,” Dr. Smith said.
Don't expect that patients will be entering palliative care, or making any other definitive decisions, immediately after the conversation, though. “What we're often asked to do in palliative care is change somebody's code status. That's the consult. That is never my goal,” said Dr. Bekanich. “Success is understanding the patient or family or increasing their safety or bettering their outcome.”
Even unspoken, other goals can cause problems. “They [patients and families] have a very sensitive sniffer in terms of how transparent you are. You don't want to have these meetings hiding anything or having a hidden agenda,” Dr. Bekanich said.
You do want to give everyone a chance to express his or her thoughts and feelings, even though you may have a lot of information to convey. “If 80% of the time, it's your voice, then something's wrong,” said Dr. Bekanich. “When you step into these family meetings, you have to have the mindset that they're the most important…If you can make it about them, and really shrink yourself down in that room, you'll have better outcomes.”
Even with the right techniques, progress toward big decisions may be slow, especially if a patient has just realized that his illness is terminal. “People need days to be able to process this stuff. I'll go in the room and they say, ‘I don't want to talk about code status.’ I say, ‘I just want you to think about talking to me about it in the future,’” said Dr. Bekanich.
The effects of a conversation may not be apparent until much later. “If you have one family meeting with people, there's evidence to show it makes big differences down the line. Even if you think it was a flub, or nothing was really accomplished during that time, don't sell yourself short. You may have had a big impact on their thinking,” Dr. Bekanich said.
Even a meeting with conflict can be a good thing. “It's great when people disagree in these meetings. It promotes brainstorming. If you can find your way through differences, your relationship with the patient and the family is much stronger,” said Dr. Bekanich.
If there are differences of opinion, it's particularly important to reinforce that the patient won't be abandoned. “One of the best things you can do is say, ‘I'm still going to be with you during this.’ In a friendly way, agree to disagree and make sure they know you're always going to be there,” Dr. Bekanich said.
All potential sources of disagreement among patient, family, and clinicians should be raised during the meeting. “Make sure you talk about things that are ethical, legal, or cultural issues for folks. It's sometimes difficult or sticky, but it can bring a lot of clarity,” Dr. Bekanich said.
Providing options, although not too many, is helpful. “People that feel like there's only one choice left to them, they don't do well,” said Dr. Bekanich. “They really need to hear at least a second option. Three or four options is probably ideal.”
However, those options should not include therapies that you're certain will not help the patient. “A real good example is feeding tubes in patients with dementia. If you don't feel like it's going to improve the outcome or improve the quality of life…legally and ethically, we are not obligated to offer therapies that are not effective,” Dr. Bekanich said. However, try to avoid using absolutes like “always” and “never” in conversation, he advised.
A time-limited trial of a therapy that's not likely to work can be a good compromise. For example, Dr. Bekanich will offer 6 weeks of dialysis to a heart failure patient. “After 6 weeks, we're going to say ‘How are you feeling?’ If this is getting better, we're all going to be happy. If it hasn't gone anywhere or [has] gotten worse, we need to start thinking about different options,” he said.
At the end of a trial, the benefits of discussing palliative care and hospice early on will become apparent. Dr. Smith offered an example script for such a conversation: “I wish it was different, but it's time to stop trying to treat this congestive heart failure so aggressively and let's treat the symptoms. I'm going to call those hospice people. Remember Bob the nurse and Maria the social worker? Now it's time to get them involved.”
Hospitalists may be surprised by how much easier these conversations become with a script and a plan, according to the experts. “Try it once; it works so easily,” said Dr. Smith.