How to Talk With Teens and Young Adults About Their End-of-Life Goals
A Conversation With Abby R. Rosenberg, MD, MS, MA, FAAP
Although death rates for adolescent and young adults (AYAs) with cancer have been dropping 0.8% a year from 2009 to 2018, cancer remains a leading disease-related cause of death among this patient population. This year, the National Cancer Institute (NCI) estimates that 88,260 AYAs, defined by the NCI as those between the ages of 15 and 39, will be diagnosed with cancer, and more than 9,000 will die of their disease.1
Despite recognition of the importance of age-appropriate medical and psychosocial care for these patients, little guidance exists on how best to communicate with them about their goals and wishes at the end of life. The result is that the majority of these patients receive at least one type of medically intensive end-of-life care, including chemotherapy, treatment in the intensive care unit or hospital emergency department, or hospitalization in their final month of life.2 Although it is unclear how often AYAs are included in discussions about prognosis or end-of-life care, studies suggest that not having these conversations often leads to patients feeling more anxious and requiring more pain medication.3
Family members of these young patients often face more emotional distress, too, if end-of-life conversations do not occur. A narrative review of published research on end-of-life communication for AYAs with cancer, by
“Having these difficult conversations may alleviate distress in the long run and creates a sense of trust and support for both patients and their parents.”— Abby R. Rosenberg, MD, MS, MA, FAAP
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, and her colleagues, has found that although none of the parents in these studies who talked about death with their child later regretted doing so, 27% of parents who did not have this conversation with their child later reported they wish they had; subsequently, these individuals suffered greater moderate to severe depression than those with no regrets.3
In a wide-ranging interview with The ASCO Post, Dr. Rosenberg, Director of the Palliative Care and Resilience Lab at the Seattle Children’s Research Institute and Associate Professor, Division of Hematology-Oncology at the University of Washington School of Medicine, discussed when and how to initiate end-of-life conversations with terminally ill AYA patients; what some of their greatest concerns may be; and the barriers preventing oncologists from initiating these conversations.
Determining Age-Appropriate End-of-Life Discussions
What is the appropriate age to have an end-of-life conversation with an adolescent patient?
My best answer is that it depends on the child and the family. We know from research that children as young as 8 understand the concept of death and, when applicable, that they are dying of cancer. However, how to engage in this conversation within the context of family structures and values is more nuanced. This is particularly true among adolescents who are developing their own autonomy while also being cared for by loving parents.
In medicine, we tend to believe that children have a right to know whether their cancer is progressing and treatment is not working, even when their parents are protecting them from the truth. However, we also support the autonomy of parents to make decisions in their child’s best interests. To make it more complicated, aligning and partnering with parents is also part of our job. We and parents need to be a team to provide the best care for an adolescent patient. I think the best approach with adolescents is stepwise: work with parents first, ask them how we should talk with their child, and make a plan to do that together.
Truth-telling, and specifically sharing a poor prognosis, is always difficult. One way I navigate this process is from the very beginning, when I meet a new patient and his or her family, regardless of the status of the patient’s cancer, the first thing I say is, “One thing you should know about me is that I’m really direct and honest, and I will always tell you the truth, even when it is not something you want to hear.” Then, when it is time to have these difficult conversations, I say: “Remember when I told you I would always tell you the truth? Well, I’m afraid I have some difficult news to share with you now.”
Reducing Anxiety and Providing a Sense of Control
How does having end-of-life conversations reduce feelings of anxiety in young patients?
It might seem counterintuitive, but talking compassionately and honestly about prognosis gives AYAs a feeling of control and independence. I think physicians and parents have the sense that these conversations cause more distress and anxiety. However, the uncertainty of not knowing what is happening actually causes heightened distress. AYAs with cancer know their bodies and often know when their cancer is progressing. When we avoid these conversations, we send these patients a message that death is a taboo topic, so this makes them feel unsupported and lonely. They don’t know who to talk to about their feelings or who to trust.
Often, I find that patients are trying to protect their parents and parents are trying to protect their children. However, having these difficult conversations may alleviate distress in the long run and may create a sense of trust and support for both patients and their parents.
Timing for End-of-Life Conversations
What is the timing for these conversations, and how should oncologists initiate these discussions with their young patients?
The optimal timing for introducing end-of-life issues is unknown, but earlier is better. The data suggest that prognosis is on the minds of teens and young adults as well as their families, and they want to have these conversations sooner rather than later, even if the situations are hypothetical. All medical discussions should begin before there is a medical emergency and possibly at the time of diagnosis. We should raise the possibility of palliative and end-of-life care at various points during the treatment trajectory to provide a “bridge,” if treatment becomes unsuccessful, and again to address end-of-life concerns at disease relapse or when there are critical changes in the treatment plan.
When having these conversations with young patients, it is important to avoid a lot of medical jargon and to speak in a language they can follow. I always start the conversation by asking patients what they have heard about their cancer diagnosis and follow up at every visit by asking, “What is on your mind? What are you worried about? What should we talk about today? How much information do you want me to share with you? Is it okay if I speak privately with your parents?”
Brandon Hayes-Lattin, MD, FACP
Adolescent and Young Adult Oncology explores the unique physical, psychosocial, social, emotional, sexual, and financial challenges adolescents and young adults with cancer face. The column is guest edited by Brandon Hayes-Lattin, MD, FACP, Associate Professor of Medicine and Medical Director of the Adolescent and Young Adult Oncology Program at the Knight Cancer Institute at Oregon Health and Science University in Portland, Oregon.
When we talk about communication preferences, I often start the conversation by asking patients if they have ever thought about what might happen if their cancer treatment doesn’t work, as we hope it will. Then, together, we explore hypothetical situations in which the cancer is progressing. I’ll wonder aloud: “I hope we never have to confront this possibility, but if you get really sick and can’t make decisions for yourself, I want to be your advocate.”
One of the most common reasons oncologists avoid these conversations with their young patients is that we are afraid of taking away their hope, but here is the thing. We don’t actually have the capacity to take away a person’s hope. In the moment after the patient hears me say we cannot cure the cancer, the patient is still hoping I am wrong, still hoping to outlive my prognosis, still hoping to get out of the hospital and see friends, still hoping not to suffer, and still hoping for a miracle.
I always ask patients what they are hoping to achieve with their treatment. After they say, “cure,” I ask, “What else?” again and again and again. Our job is not to preserve unrealistic hope. Our job is to help patients identify the hopes they can actually achieve.
Giving Voice to Young Terminally Ill Patients
What are some of the biggest concerns AYAs have at the end of life?
We know that AYAs have clear and consistent opinions about their ideal end-of-life care. When asked what is important to them, these patients often say they want to be physically comfortable and free from pain; they want to be at peace, spiritually; they want to share their wishes and thoughts with loved ones; they want to understand their treatment options; and they want to die a “natural” death, although the meaning of this last term is unclear.
Other opinions and preferences are more variable. For example, although many young patients prefer not to return to hospital settings at the end of life, their specific preferred location of death depends on family and cultural values, the availability of hospice (which is often limited for younger patients), and other resources needed to ensure their comfort. Taken together, this means talking about end-of-life concerns earlier and more frequently than we typically do and balancing the evolving the wishes of patients with the changing needs of the family and the capacity of support systems.
There is a great advanced care planning guide called “Voicing My Choices™: A Planning Guide for Adolescents & Young Adults” (https://fivewishes.org/docs/default-source/Samples/vmc-sample.pdf?sfvrsn=4), which provides young patients with a tool to express their thoughts on how they want to be comforted, supported, treated, and remembered after death. The guide incorporates topics that are most important to young patients, including having input in their medical care and treatment decisions; how they want to be cared for and supported during their illness; and who they want making medical care decisions if they can no longer make them.
Overcoming Challenges to End-of-Life Communication
What are some of the barriers that prevent oncologists from introducing end-of-life conversations with AYA patients?
In addition to our worries about taking away hope, I think there are three main concerns. First, we love our patients and don’t want to cause them pain or harm, so we avoid causing the distress that comes from hearing bad news. This often means delaying tough conversations. As we’ve been discussing, that delay tactic ends up causing more distress down the road.
Second, oncologists are trained to destroy cancer; that is our mission. So, we tend to talk about treatment options more than we talk about the implications of prognosis and patients’ own goals and values.
Third, studies show that oncologists take it as a personal failure if we cannot cure a patient. We want to keep trying, constantly looking for new treatments. That sense of personal failure and loss when a patient dies can be devastating for oncologists. Still, if we want to provide high-quality care, and really want to respect patients’ autonomy, hopes, and values, we have to do the hard work that comes with having difficult conversations.
When we are sitting in front of a patient who will die of cancer, it is incredibly difficult to accept that we have not achieved the holy grail of ensuring no one will ever die of cancer again. Although having these conversations is challenging for oncologists, they help ensure that patients’ end-of-life goals are met and that patients experience a better-quality end of life.
DISCLOSURE: Dr. Rosenberg reported no conflicts of interest.
1. National Cancer Institute: Cancer Stat Facts: Cancer Among Adolescents and Young Adults (AYAs) (Ages 15–39). Available at https://seer.cancer.gov/statfacts/html/aya.html. Accessed June 2, 2021.
2. Mack JW, Chen LH, Cannavale K, et al: End-of-life care intensity among adolescent and young adult patients with cancer in Kaiser Permanente Southern California. JAMA Oncol 1:592-600, 2015.
3. Sansom-Daly UM, Wakefield CE, Patterson P, et al: End-of-life communication needs for adolescents and young adults with cancer: Recommendations for research and practice. J Adolesc Young Adult Oncol 9:157-165, 2020.