To learn more about end of life conversations from the perspective of those who work in healthcare or work with end of life issues, I interviewed a doctor, three chaplains, and a professor of social work. Although most of what they said was similar to what I found in the literature (covered in my last blog post, here), they had more realistic expectations for change and practical suggestions.
First, everyone seemed to have a slightly different concept of end of life conversations between doctors and patients. The consensus, however, was that end of life conversations are about understanding who the patient is – their values and goals – in order to understand how to best care for them as their condition worsens or when they find themselves in a medical crisis. Patients need to tell doctors what they are willing to go through during treatment and what they want to endure before moving to palliative care. Whoever the patient defines as family should be present for the conversation. Obviously, what that conversation looks like depends on the patient’s age, relationship with their physician, and seriousness of their condition. A conversation between a primary care physician and a healthy adult is very different from a conversation between a palliative care doctor and terminal cancer patient. Each interviewee also noted that an end of life conversation about values and goals does not always happen and rarely seems to happen in an emergency care setting.
The earlier the conversation occurs, the better. Interviewees advocated for building a relationship with the patient and discussing end of life before a medical crisis. When asked about exactly how early is best, however, their answers varied from “as soon as one can process the concept of death” to “diagnosis with a serious illness.” Personally, I think it is never too early to have a conversation about mortality. Obviously, the tone of these conversations can vary greatly depending on timing, but talking about death in a natural way could go a long way to decrease fear of death. Instead of ignoring and denying death until diagnosis with a serious illness, I think it is better to start the conversation as early as possible and even engage children in a conversation when they ask about death. Obviously, for many doctors who meet their patients near the end of their life spans, such as geriatricians, oncologists, or palliative care doctors, this is not very relevant. They often have no choice but to bring up end of life issues for the first time before knowing the patient well or in a moment of crisis, such as a late stage diagnosis of cancer. But primary care doctors can definitely bring up the topic when it seems appropriate, especially as patients age. The closer to death, the harder the conversation is, so starting conversations as early as possible gives patients plenty of time to think and process any bad news.
Another theme present in the interviews was honesty. Honesty means more than just not lying, it also means being transparent about the details of the disease, life expectancy, and disclosing all important information. One of the chaplains talked about the death of his father. His mother was happy to hear from his doctor that tests showed his kidneys were very healthy and interpreted that as a sign he may recover. Later that day, he died of heart failure. The doctor never lied, but he also should have been more transparent about the fact that his father’s kidneys were not the problem, his heart failure was. Honesty means not sugar-coating information, giving false hope, or avoiding disclosing information, even if the doctor is well intentioned and just doesn’t want to upset the patient.
Every person I interviewed said hospice was helpful and mostly supported medicare coverage of end of life conversations and hospital protocols that encourage end of life conversations at specified intervals, such as ER admission or diagnosis of disease. Their only concern was that end of life conversations may become an item to check off a list instead of really taking the time and effort to have a real conversation. They all, however, supported trying any way to give doctors more time and increase the frequency end of life conversations.
Every person said it is appropriate for a doctor to bring up spirituality. They said spirituality is often an important aspect of people’s identity. Spirituality encompasses values, goals, priorities, what makes you happy or sad, and how you find fulfillment in life. It is certainly not the doctor’s role to impose their own beliefs, but spirituality often greatly influences end of life decisions and is very much relevant to medical care.
There were many other practical elements of end of life conversations that the interviewees mentioned, including the importance of listening, eye contact, letting the patient talk more than the doctor, making sure to find sufficient time for a real conversation, being present to say goodbye and wish patients the best when they are discharged from the hospital and enter hospice, and suggesting the patient can record the conversation if that helps them to feel less overwhelmed by all the medical information.
Unlike journal articles full of averages and statistics, those who I interviewed acknowledged that there really are people who will refuse to talk about end of life issues and it is certainly not productive for the healthcare community to force everyone to talk about these issues if they really do not want to. But they also acknowledged that most people do want to talk about end of life, even though it is hard and often upsetting. They held patients partially responsible for not always advocating for important conversations and information.
Ultimately, a lot of what the interviewees revealed comes down to the major sociological tendency of Americans to avoid thinking and talking about death, an attitude that has permeated health care and health education. Doctors are seen as heroes who save lives. Medicine is given an almost magical quality where anything is possible with the latest technology. That doesn’t mean, however, that it is too late to change. A chaplain reported that younger physicians have received more education and are less likely to view death as a failure. Slowly, people will change their attitudes. If a patient comes in with late stage cancer and a doctor does everything possible to cure the patient, when a cure is no longer feasible and the doctors switches the priority from cure to care to help the patient to die peacefully, then that is a success, not a failure, for both the doctor and the patient.