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Discussing End-of-Life Care

By Jamie Santa Cruz

It's critical for physicians to communicate in advance with patients about their end-of-life care preferences.

Although various national guidelines call on physicians to conduct regular conversations about end-of-life care planning with older adults and with those who are facing terminal illnesses, research suggests that physicians often avoid the subject with patients. A 2014 study presented at meetings of the American Heart Association (AHA), for example, found that only 12% of health care providers reported having end-of-life care conversations with heart failure patients at routine annual visits as recommended by the AHA.1 And a 2010 study in Cancer found that the majority of physicians put off discussion of end-of-life care preferences with terminally ill patients as long as the patients were feeling well, instead waiting until patients became symptomatic or until treatment options were exhausted.2

Unfortunately, says Anthony Back, MD, professor of oncology at the University of Washington School of Medicine, avoiding conversations about end-of-life care does a disservice to patients. If patients don't establish their care preferences and communicate them to health care providers, the default is that patients will receive every available medical intervention as they approach death. This includes interventions that are burdensome to the patient, some of which have a very small chance of making a meaningful difference in the patient's health. Many patients don't actually want all such interventions, Back says. To ensure that a patient's treatment is consistent with his or her goals for care, it's critical for physicians to communicate in advance with patients about their care preferences.

Initiating Conversations Months to Years Before Death
Although physicians have a tendency to wait until patients are on the brink of death before raising the subject of end-of-life planning, it's better to address the subject well ahead of time. "Patients need time to get adjusted to what's happening to them, they need time to understand what the options are really about, and they need to get their families involved so they understand what's happening," Back says. Rather than waiting until death is imminent, he says, physicians should be making a point to discuss end-of-life planning with all older adults—even with those who do not currently have any serious chronic diseases.

Joshua Uy, MD, an assistant professor of medicine at the University of Pennsylvania School of Medicine, concurs about the importance of early discussions, noting that it is much easier to think through care preferences well in advance than to make decisions in the midst of a medical crisis. "A lot of older adults make these decisions in real time, but it's very difficult to decide when you're faced with an urgent decision how you feel about it," Uy says. "It's better to have time to think about it and form the values over time."

When patients still have a life expectancy of years or at least months, one of the main points physicians should stress regarding end-of-life care planning is the simple fact that the topic is an important one to consider. According to Back, who is also codirector of the Center for Excellence in Palliative Care at the University of Washington, patients frequently assume they can simply rely on care providers to make the best decisions for them, but they don't realize doctors can't make these determinations when it comes to end-of-life care. Therefore, Back says, "they need to hear from their doctors that end-of-life care planning is important."

At this stage, most of the discussion should center on values clarification, Uy says. "In an ideal world, people would have very coherent values that they've formed over time that they can use as a basis for making treatment decisions," Uy says. "The reality is some patients do and some patients don't." To help patients work through their own values, Uy relies on the Conversation Starter Kit (available at www.theconversationproject.org). He considers the kit a gentle way to initiate conversation because it focuses on general goals for the end of life rather than asking patients to make specific medical decisions. For physicians who worry about how much time end-of-life care conversations will take, the Conversation Starter Kit is also a good starting point because it can be given as homework.

Besides clarifying values, the other main step patients can take early on in end-of-life care planning is to designate a surrogate decision maker, Back says. They should consider what would happen if by chance they ever became too ill to communicate, and decide whom they would want to handle medical decisions on their behalf.

Initiating Conversations Days to Weeks Before Death
Although having early conversations about values clarification is crucial, the conversations themselves won't be sufficient. As patients move closer to the end of life and begin to face more specific medical decisions, deeper conversations about their preferences for care in their last days will be warranted.

When a patient is facing one or more illnesses, but the treatments are no longer having the expected effect and he or she is experiencing an increased burden from the disease (and possibly from the treatments themselves)—that's the key time when more in-depth conversations are needed, says Cory Ingram, an assistant professor of palliative medicine at the Mayo Clinic College of Medicine in Rochester, Minnesota. At this point, death may be approaching relatively quickly, and although it may be possible to continue treating the patient's illnesses, continued treatment may not necessarily be the best care for that patient.

Doctors sometimes assume that patients won't want to talk about impending death. However, Ingram says, the majority of patients actually do want to discuss it, and having the conversation can be very helpful for both them and their families. The key, he says, is to choose a time when the patient is ready for the discussion. The best way to know whether the patient is open to discussion is to simply pose the question. "Typically, I will ask people, 'I'm wondering if we could talk a little about the future,'" Ingram says. "'Would this be an OK time to talk about that?'"

If the patient is ready to talk, the best place to begin is to determine how much the patient understands about his or her illness and prognosis. It's critically important for both patients and their families to have a clear understanding of the main issues, so Ingram recommends inviting patients to share what they see as their main medical problems. For example, he says, patients may perceive their primary medical problems to be high blood pressure and diabetes, when they're actually in respiratory failure. If there is a disconnect between what the patient perceives and what the physician perceives, physicians can then ask whether they can offer some additional information about a patient's condition.

Once patients have a clear understanding of their illnesses, says Ingram, the next step is to ask them about their fears and hopes and what's important to them as they look ahead. Physicians should help patients explore the tradeoffs they're willing to make in their care (eg, daily dialysis), and determine what patients are hoping for in terms of next steps.

Starting with these kinds of open-ended questions is helpful because they aren't threatening, Back says. "Doctors are always wanting to start with the most actionable item—they'll start asking about hospice. But for a lot of patients, even for those who have a serious illness, that is a scary question and a very scary place to start."

Whereas earlier conversations about end-of-life care should focus on values clarification, the conversations should become more specific as patients move closer to the end of life, Uy says. For example, there's no point in discussing end-stage renal disease when a patient is still in the early stages, but once patients have reached a more advanced stage of disease, they'll need more specific information about vascular access, what it's like to be on dialysis, or what it's like to stop dialysis.

Be prepared for patients to change their minds about care wishes as death draws nearer. A patient who has indicated a particular preference in an advance directive years ago may not have the same preference today, Back says. For that reason, it's important to think in terms of a series of conversations rather than a single one and to encourage patients to share their evolving thoughts on the topic.

One word of warning: Talking about end-of-life care is bound to prompt anxiety and emotion for patients, but that shouldn't dissuade physicians. If a patient gets emotional, "It's not a sign the conversation isn't working," Back says. "It's normal." When a patient gives emotional cues, he says, physicians should simply respond with empathetic comments to help the patient feel more secure: "I know this is hard to talk about," or "Tell me what you're worried about here."

Storage and Accessibility of End-of-Life Care Documentation
Although encouraging patients to formulate their wishes for their care is a crucial step, it is equally important to document and store patient directives in such a way that they will be accessible. According to a new report from Software Advice, the most popular method for storage is paper records, with 45% of patients indicating this is their preferred method and 31% of care providers also saying that they rely on paper records. The remainder of the health care respondents indicated that they used either computer scans or electronic health records (EHRs), and 12% indicated they were unsure what method they use.3

When asked about the most efficient storage method, however, a combined 65% of health care providers said they believe that EHRs are "much more" or "somewhat more" efficient for storage than paper. Furthermore, those who use EHRs reported higher levels of confidence about their ability to retrieve the documentation quickly.

"Our research has shown that EHRs can be extremely reliable, effective, and accessible if advance directives/POLST [physician orders for life-sustaining treatment] are consistently stored in a dedicated part of the software," says Gaby Loria, market researcher at Software Advice and the author of the report.

Unfortunately, Back says, the reality is that many EHRs currently lack a good place in the system to hold end-of-life care documentation. Therefore, although he believes that storage in EHRs is ideal, he believes patients should continue to keep a written copy of their care wishes, and their surrogates and care providers should retain written copies as well. Uy agrees that, for the time being, patient wishes should be stored in paper records and in EHRs.

Conversations about end-of-life care are never easy, but physicians should take comfort in the fact that they are ultimately giving their patients a gift by having the discussion. "When patients have these conversations, [they] are more likely to get the care they value in the setting they value," Ingram says. "Going through these processes results in patients and families having a better experience in the midst of what is otherwise a hard situation."

— Jamie Santa Cruz is a freelance writer based in Englewood, Colorado.


1. Doctors reluctant to discuss end-of-life care with heart failure patients. American Heart Association website. http://newsroom.heart.org/news/doctors-reluctant-to-discuss-end-of-life-care-with-heart-failure-patients?preview=5988. June 4, 2014. Accessed February 8, 2015.

2. Keating NL, Landrum MB, Rogers SO Jr, et al. Physician factors associated with discussions about end-of-life care. Cancer. 2010;116(4):998-1006.

3. Loria G. EHRs' potential for improving end-of-life care documentation. Software Advice website. http://www.softwareadvice.com/long-term-care/industryview/ehr-end-of-life-report-2015/. January 6, 2015. Accessed February 8, 2015.