“Just ask,” urged the title of a recent review in CMAJ.
The advice sounds simple, but hospitalists often find reasons to avoid asking patients about goals of care, according to review author John J. You, MD, an associate professor of medicine and clinical epidemiology and biostatistics at McMaster University in Hamilton, Canada.
In the review, published online July 15, Dr. You and colleagues offered a framework for communicating with inpatients at high risk of dying and helping them and their families make decisions about end-of-life care.
He recently spoke to ACP Hospitalist about the importance of these conversations and how hospitalists can make them go as well as possible.
Q: What motivated you to write on this topic?
A: I'm a hospital-based general internist. This is motivated largely by my own experience caring for patients on the inpatient medical ward, dating back to when I was a medical student until now. There are a large number of patients who are living either in a state of prolonged dying or certainly near the end of their lives. One of the things that we fail in as a health care service or system and as providers is having open, honest communication with them about where they're at in their disease and what to expect for the future, and to help them plan for the realities of what's going to unfold.
Q: What barriers are preventing this communication?
A: We are actually doing a funded research project, funded by the Canadian Institutes of Health Research (equivalent to the NIH in the U.S.), to look at the barriers, by asking directly the physicians and nurses who work on the hospital wards and medical wards. Hopefully, we'll learn something concrete from that.
But from observation, there are a few things. An important barrier is just the culture of modern medical care. We've got a lot of technologies and treatments that we can apply, and that's certainly benefited human health a great deal. But when people come to the hospital, they come to the hospital expecting to get better, and because we have the stuff available, the default pathway is to apply those treatments. I don't think we always pause to reflect, “Are we doing the right thing for the patient and the family?” Some of it is just human nature—nobody likes to talk about death. Patients and families are hoping that the doctors and nurses will raise the issue, and I think physicians are to some extent, depending on the person, uncomfortable broaching the topic, or feeling like “It's someone else's job” or “I'm really busy and this isn't something I need to do right now.”
Q: In response to that idea that it's someone else's job, what do you see as the role of hospitalists in these conversations?
A: Working in the hospital setting, there's a common feeling that “I don't know this patient. It's the first time I'm meeting them. Why shouldn't the family physician or the specialist who looks after this person's chronic medical problems be addressing it?” It's almost an excuse to not get into it. I think there is definitely an important role for [outpatient] physicians to play. They understand who the patient is, their family, their social network … But we have an important role to play in this conversation too. It's not like you have a single conversation that seals the deal for the rest of your life. Because there's an acute change when people come into hospital, [the conversation] has a lot of relevance to the patient, and family members are often visiting. While it's a busy and sometimes stressful time, we can't sit around and make excuses for why it's not a good idea. We all need to share in the ownership of the issue.
Q: Your review recommends considering, “Would I be surprised if this patient died in the next year?” but also includes two risk prediction tools. What do you see as the roles of these various methods of mortality prediction?
A: I see the surprise question as a really good, practical screening tool to make sure that you've got some awareness of the issue and that you're targeting your limited time to patients and families who are probably in the greatest need of having conversations about their goals of care. That's a good screening tool because it's simple. Really, I don't think it's ever too early to engage in these conversations, so if you're a little bit wrong, I don't think you're doing anyone any disservice.
More quantitative tools about measuring life expectancy or prognosis or mortality have some utility in getting at an estimate. The equally important issue to remember about this whole business of prognosticating is it's never going to be perfect. To have any kind of expectation of accuracy is fundamentally unrealistic. Sometimes as physicians we get a bit hung up by that and distracted by trying to estimate an exact time frame. To the patient and family, there might be a lot of other issues that are actually much more important, like “What's my quality of life going to be like?” and “What can I expect for the future?” and “What kinds of things will I be able to do or not be able to do?” We did provide the tools because sometimes patients and families will ask, or sometimes it may give you a good context within which to think. But, broaden the discussion around prognosis when you're talking to patients and families as well.
Q: How do you recommend dealing with patients and families who seem reluctant to have this conversation?
A: Sometimes patients or their family members are not in a state of readiness to engage in these conversations. If you're going to be a good communicator, you really have to be able to pick up on those either verbal or nonverbal cues of their acceptance or readiness to engage in the discussions and to respond appropriately. I don't think that means you don't talk about things at all, but the direction of the conversation needs to change. Denial is a pretty normal reaction to a bad situation and it's a coping mechanism that we all use. To take that away from people bluntly is not a good approach. There has to be a lot of nuance and sensitivity and compassion in these conversations.
Q: Your review includes research on the effectiveness of cardiopulmonary resuscitation (CPR). Is that a particular area where you think more conversation is needed?
A: There's a lot of misperception out there in terms of what CPR can achieve. There's a study where somebody looked at the success rates of CPR on TV shows and found that success rates were something like 77%, which is wildly different from the reality. If that's the mental image that [patients] have, there are bound to be some mistaken ideas about what we can do. It is important to make sure people are aware of what we can and cannot do and what CPR actually involves.
Q: What systemic changes would facilitate these conversations?
A: It's a complex problem [with solutions needed on] multiple levels—civic engagement, broad education reaching patients and families, education for medical trainees and health professional students to give them better confidence and skills to handle these conversations. And then changes at the system level—incentives, a better environment to have these conversations, and better ways to document and share information about the content and outcomes of any discussions. There are lots of different facets.