Although studies have shown that patients with advanced cancer want their oncologists to discuss their advance care plans with them, fewer than half of those patients have that conversation. The reasons are many, including the difficulty many oncologists have in initiating conversations about noncurative options with their patients, the fear that such a conversation will lead patients to abandon hope, and the worry that the news will adversely affect patients and lead to a worse outcome. Patients may also be hesitant to broach the subject with their oncologists over concern it may be interpreted as an expression of disappointment in their oncologists and in the care they received.¹

However, open communication between physicians and patients is such an essential component of effective cancer care that ASCO devoted a four-part session to the topic of improving end-of-life conversations during its 2021 ASCO Annual Meeting. ASCO has also published guidelines to help oncologists improve effective communication with their patients,² as well as a patient booklet, Advanced Cancer Care Planning: A Decision-Making Guide for Patients Facing Serious Illness. The patient booklet provides information on care options, including palliative and hospice care, how to determine what is an acceptable quality of life, and how to choose a health-care proxy and complete an advance directive.

During the four-part ASCO session, “Candid Conversations About Death and Dying: Excerpts From The Nurse With the Purple Hair,” Amy R. ­MacKenzie, MD, FACP, Chair of the session, commented: “Medicine is a marriage of art and science…. I want to ask you to step out of your comfort zone and join us as we talk about the art of being human and the art of communication.”

Amy R. ­MacKenzie, MD, FACP

In this interview with The ASCO Post, Dr. ­MacKenzie, Associate Professor in Oncology at Jefferson University Hospitals in Philadelphia, talks about the timing for end-of-life discussions, how delaying these conversations contributes to false hope and more aggressive care at the end of life, and the importance of reassuring patients with advanced cancer that they will not be abandoned once active treatment ends.

Starting the Conversation

At what point during cancer treatment and survivorship should oncologists discuss end-of-life care with their patients?

According to ASCO’s Patient-Clinician Communication Consensus Guideline,² conversations about patients’ end-of-life preferences and their advance care planning should be initiated early in the course of incurable illness and readdressed periodically based on changes in their clinical status. These discussions should be patient-centered and focused on patients’ values and priorities. I try to fit in these talks soon after a diagnosis of metastatic disease, so if I need to revisit the conversation, it is not a shock to the patient.

Although discussing death and dying is uncomfortable for both patients and physicians, if we make these conversations part of our routine medical history intake from the initial meeting, which becomes part of patients’ electronic medical records, they become easier to have if the cancer progresses and active anticancer treatment is no longer an option. They also help ensure patients’ end-of-life preferences are adhered to during a medical emergency.

I try to fit in these [end-of-life] talks soon after a diagnosis of metastatic disease, so if I need to revisit the conversation, it is not a shock to the patient.

— Amy R. ­MacKenzie, MD, FACP

Tweet this quote

Although most physicians believe that patients should have a realistic understanding of their prognosis, the majority avoid initiating these conversations, largely due to their discomfort at having to broach the topic of end-of-life care.³ How can oncologists overcome this challenge and become more comfortable having these discussions? How should they start the conversation?

Cancer is a frightening disease and often elicits fear, grief, denial, or anger in patients. Physicians are often unsure how to initiate or proceed with end-of-life discussions largely because medical education regarding end-of-life protocols is lacking.

One way to start the end-of-life conversation and talk about advance care planning is simply to ask the patient some of the following questions: “What do you understand about your illness? Do you understand what is going on with your disease and your treatment plan? What type of health care would you want? Who would you want to make decisions for you if you couldn’t speak for yourself?” These questions may be innocuous, but they can be used to begin the conversation and let clinicians know whether patients are prepared for the information, are ambivalent, or do not yet want the information.

Then, we should ask patients what their short- and long-term goals of care and treatment preferences are and how those goal relate to their daily activities and quality of life. We often assume patients want to live as long as possible; although that is often true, many patients would rather have quality of life than quantity of life, but we won’t know the answer if we don’t ask the question.

If the treatment is not meeting the needs of patients, we should ask them what they are hoping for now and assure them that everything will be done to support them once active cancer treatment is transitioned to focus on supportive care. In some patients’ minds, stopping treatment is the equivalent of abandonment. I always tell my patients that, even if the decision is made to stop cancer treatment, I will still take care of them. It is important for us to constantly convey these messages: “I will support you. I will help you meet your end-of-life preferences if active treatment is no longer effective in halting cancer progression, and we need to transition to supportive care to alleviate pain and other symptoms.” Having that information goes a long way to helping patients feel relieved and less frightened.

Many patients worry that wanting to stop treatment may disappoint their oncologists, and many may be hesitant about saying whether they want more active treatment. Thus, it’s important to keep checking in and asking if the treatment is still meeting their goals. I tell my patients that I have some guidelines for their care, including always wanting the treatment to give them some benefit, ensuring it is safe for them to stay on therapy, and affirming they still want to continue treatment.

I want patients to feel comfortable telling me what they want to do going forward. I reassure them that I will not be disappointed if they choose to opt out of aggressive treatment.

Contributing to Patients’ False Sense of Hope

How does avoiding these conversations contribute to patients’ false sense of hope and result in more aggressive care at the end of life?

Although physicians may be well intentioned, shielding patients from their prognosis and avoiding words such as “death and dying” to maintain hope may cause more stress and anxiety for patients and their families because death might come as a surprise. Starting these conversations early helps ensure goal-concordant care, increases patient satisfaction of their care and quality of life, reduces suffering, and eliminates the need for invasive and costly care that provides negligible clinical benefits.

To ensure that patients understand their prognosis, we should use simple language tailored to their educational level and avoid medical jargon, such as “response rate” or “positive test result.” Then, we should ask patients to explain what they understand about their illness. By nature, we are fixers and want to cure our patients, so it is difficult for us to use accurate language to describe patients’ prognosis. However, if we want to help our patients have a peaceful death, we should get away from this notion of being able to “fix” them and be honest and empathetic—but also direct—about their situation. For example, use statements that can give patients time to absorb information: “The imaging scan shows the cancer has come back. Your treatment is no longer working.”

Improving Clinicians’ Communication Skills

Although most medical schools offer lectures on death and dying, medical trainees report feeling unprepared to engage in these conversations and to manage their own feelings about death.⁴ How can medical training be improved to provide physicians with the necessary communication skills to approach these discussions with patients?

Several years ago, Anthony Back, MD, Professor of Medicine at the University of Washington and the Fred Hutchinson Cancer Research Center in Seattle; Robert Arnold, MD, Distinguished Service Professor of Medicine and Director of the Institute for Doctor-Patient Communication at the University of Pennsylvania; and James Tulsky, MD, Chair, Department of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute and Chief of the Division of Palliative Medicine at Brigham and Women’s Hospital, cofounded VitalTalk (vitaltalk.org). This nonprofit organization teaches advanced communication skills and faculty development courses to help clinicians deliver bad news to patients and discuss goals of care in an empathic manner.

I took the VitalTalk course, and it was a practice-changing experience for me because the feedback I received was so helpful. I was observed participating in roleplay with patient actors and was able to receive real-time constructive suggestions on how better to conduct difficult conversations. I now approach these conversations with patients differently. The single most important thing I learned from that course was to sit in silence. We don’t always need to fill the space with talking. We need to make end-of-life conversations part of our medical culture. Talking about death, dying, and transitioning to hospice care should not be taboo topics we seek to avoid.

If we want to help our patients have a peaceful death, we have to … be honest and empathetic—but also direct—about their situation.

— Amy R. MacKenzie, MD, FACP

Tweet this quote

Becoming Comfortable When Talking About Death

In your ASCO presentation, you discussed the prevalence of Death Cafes, an international movement in which people gather to discuss death and dying. It is reported that, since their inception in 2011, nearly 13,000 Death Cafe meetings have been held worldwide, with almost half of those gatherings in the United States.⁵ Is this an indication that people are becoming more comfortable when discussing death?

The COVID-19 pandemic tragedy brought death to the forefront of many of our conversations. I think people are more comfortable talking about death now, and that’s a good thing. Death is a part of life, and we shouldn’t be afraid to talk about it. My hope is that we can shift the conversations with our patients and each other. 

DISCLOSURE: Dr. MacKenzie has an immediate family member who holds stock or other ownership interests in Tenet Healthcare and has served as a consultant or advisor to Science 37.

REFERENCES

1. Gesme DH, Wiseman M: Advance care planning with your patients. J Oncol Pract 7:e42-e44, 2011.

2. Gilligan T, Coyle N, Frankel RM, et al: Patient-clinician communication: American Society of Clinical Oncology Consensus Guideline. J Clin Oncol 35:3618-3632, 2017.

3. Hancock K, Clayton JM, Parker SM, et al: Truth-telling in discussing prognosis in advanced life-limiting illnesses: A systematic review. Palliat Med 21:507-517, 2007.

4. Sutherland R: Dying well-informed: The need for better clinical education surrounding facilitating end-of-life conversations. Yale J Biol Med 92:757-764, 2019.

5. Death Cafe: What Is Death Cafe? Available at https://deathcafe.com/what/. Accessed August 18, 2021.