Before children or adolescents are developmentally ready to assent or dissent to a particular treatment course, they may be developmentally ready and eager to be given the chance to provide input regarding how they want to be treated.
—Chris Feudtner, MD, PhD, MPH
Three years ago, a study of adolescents and young adults aged 16 to 28 with metastatic or recurrent cancer or HIV/AIDS compared the usefulness of two previously developed advance care planning guides—one prepared specifically for adolescents and young adults and one specifically for adults. The study revealed that at the top of the list of concerns by adolescents and young adults were that they be allowed to choose the kind of care and medical treatment they wanted and to express their wishes to family and friends about how they wanted to be remembered.1
The result of the study findings is Voicing My Choices™: A Planning Guide for Adolescents & Young Adults, which includes areas for adolescents and young adults to provide input on their medical care decisions, such as the type of life support treatment they want, how they want to be cared for and supported during their illness, who they want making medical decisions if they no longer can make them, and how they want to be remembered after death. The booklet can be previewed and ordered at agingwithdignity.org.
According to the National Cancer Institute, over 69,000 adolescents and young adults between the ages of 15 and 39 were diagnosed with cancer in 2011, about six times the number of cases diagnosed in children under the age of 15. Only accidents, suicide, and homicide claimed more lives in this age group than cancer.2
Being able to participate in their own care plan and state their end-of-life wishes while they are still healthy enough to take part helps young patients get back some sense of independence and control and provides them with a chance to write their legacy and feel less alone or isolated, according to Chris Feudtner, MD, PhD, MPH, Director of the Department of Medical Ethics; Attending Physician and Director of Research for the Pediatric Advance Care Team at the Children’s Hospital of Philadelphia; and Professor of Pediatrics, Medical Ethics and Health Policy at the Perelman School of Medicine at the University of Pennsylvania.
Although end-of-life directives have largely focused on the medical wishes of adult patients, over the past decade, there has been a growing movement by physicians to include discussions about advance care planning with their terminally ill young patients, said Dr. Feudtner. The ASCO Post talked with Dr. Feudtner about the importance of talking with adolescents and young adults about their end-of-life wishes and the potential ethical dilemmas posed by these conversations.
Emotionally Difficult Conversations
Please talk about the attention now being paid to the end-of-life concerns of adolescents and young adults with terminal cancer.
Health-care providers have been discussing the need to talk to children, adolescents, and young adults about the nature of their health in compassionate but truthful terms for 40 years. About 10 years ago, a broader movement started taking shape regarding how to take the adult concept of advance care planning and customize it for young patients.
Although it sounds like a good thing to do in theory, there are logistical challenges to overcome, such as where to record these directives and how to cope with the emotional challenges of having these conversations. Even if it is ethically the right thing to do, these conversations are emotionally difficult for physicians.
Many physicians think of these conversations as depressing and disturbing, but they can have good outcomes for both adolescents and young adults, who are given an opportunity to have this important discussion, and their family members, because their loved ones also benefit from learning about patients’ wishes for end-of-life care.
A Matter of Control
Is one of the main benefits of including adolescents and young adults in discussions about their end-of-life care that it gives them back some sense of control over their life?
That is one important aspect of advance care planning discussions. Adolescents and young adults often report that they feel these conversations give them a voice and some control. They feel empowered to be who they are and also to express the reality of the situation; and given that reality, they have the opportunity to express what they care about.
This is their experience; they are the ones who are most intimately involved with the situation, and this gives them an avenue to talk about it. So, yes, it’s a control issue, but it also gives young patients the ability to be who they are and provides them the chance to leave a written legacy of their life, how they want to be remembered, and their hopes for their loved ones.
When to Talk: Sooner Than Later
How can oncologists start this difficult dialogue with their patients, and when should these conversations begin?
Some physicians are reluctant to initiate advance care planning conversations because they think the timing is not right, or maybe it is going to be too upsetting for patients and their family members. We all should look at this as an area of medical care that can be improved and search for ways to get better at having these conversations.
For example, physicians can introduce the topic by saying: “I promised you I’d always be straightforward. While there is nothing new that we need to worry about, I feel that I owe it to you to have a ‘just in case’ discussion about how you would want me to take care of you if you were to get really sick and were unable to tell me what you wanted.”
Physicians can also say, “Many patients with cancer appreciate having the chance to talk about what matters most to them in case some day they get really sick and can’t tell people what they want in terms of their care.” They can also use some of the tools available in Voicing My Choices to help guide these conversations.
If a physician does not personally feel comfortable facilitating this type of discussion, he should enlist the help of someone on the interdisciplinary clinical team who does, because the comfort level of the facilitator will have a big impact on how comfortable the adolescents and young adults feel about engaging in the discussion.
In terms of when to start the talk about death and dying, the answer is we don’t know for sure. There is no evidence to show that there is a “best time.” What I can say is that when adolescents and young adults are given an opportunity to think about advance care planning while they are still fairly healthy, they do not object to it. They seem gratified to be given the chance to talk about something they know is a scary possibility and don’t slip into magical thinking that because they are talking about death when they are still healthy, it inevitably means they are not going to survive. In addition, they also may not be depressed by the conversation.
I don’t know that we will ever be able to say with certainty what the best timing is for such a conversation, but the feeling among many physicians that having these discussions too early is somehow a bad thing does not seem to be true. The conversation should be offered as an option sooner rather than later because it does not appear to be harmful. But you must keep in mind that adolescents and young adults are individuals, and they should have a say in when this conversation would make sense and be meaningful to them.
The Ethics of Patient Autonomy
If a patient is under the age of 18, do you need permission from the parents before these discussions can begin?
This question addresses the ethics of autonomy of the patient, specifically for a child or adolescent who over time has an emerging capacity for autonomy, and how to respect this emerging autonomy while at the same time also respecting the responsibility and authority of parents to safeguard the well-being of their child. At both a conceptual and a practical level, it does not make sense to disregard parents by not involving them in the timing of these conversations. So one wants to approach parents with deep respect for their commitment to their children and their authority to make treatment decisions until their children are 18 or emancipated.
At the same time, you want be aware this is a very stressful situation for parents, and the conversation is going to be difficult not just potentially for the adolescent and young adult, but also for the parents. So what we want to do is support all of them in having this conversation and help them to realize that although the conversation will be challenging, it is something they may have already been thinking and worrying about. If they can hear each other talk through the issues they are confronting, it allows them the opportunity to join together and support each other, rather than be opposed or apart from each other.
What are some other ethical issues physicians may confront as a result of initiating end-of-life discussions with their young patients?
There are basically two issues. One is how to navigate the space between a child’s emerging autonomy of adolescence and not just respect that autonomy but enable it to develop. If you don’t engage younger adolescents in discussions about what they are going through and the treatments they are going to receive—and elicit their input—it is going to be difficult later on as their cancer progresses to transition them suddenly to the point where they have to cope with the inevitability of what is happening and make all of their decisions on their own.
It is better for younger patients to acquire the ability to make good choices for their own health by giving them the chance to have real informed input about what types of choices will be made on their behalf and that informed input might actually shift from decisions that are made for them to decisions that are made by them.
There is more of a role over time for informed input in medical decisions. Some people call it “informed assent,” but I would broaden that concept beyond informed assent. It is rather “informed input,” which means that rather than giving someone an option either to assent or not, the patient can talk about what matters to him (or her) in terms of treatment or end-of-life care, is informed about the process of figuring out what is the right thing to do, and is given the opportunity to be involved in care decisions.
In other words, before children or adolescents are developmentally ready to assent or dissent to a particular treatment course, they may be developmentally ready and eager to be given the chance to provide input regarding how they want to be treated.
The second ethical consideration is to be honest with them about the degree to which they are going to be able to craft the treatment to fit their preference. We have to be sure not to overpromise or misrepresent our commitment to honor their preferences.
If we are going to seek patients’ assent, we also need to honor their “dissent” about what they do not want at the end of life. And since we often are not willing to honor patients’ dissent, we have to be careful not to make promises we are not willing to keep.
The bottom line is if we are going to involve adolescents in decisions about what the best thing is to do for them, we have to involve them with the utmost integrity, assuring them that we will honor our commitments to the promises we made about their preferences and their views. It is better to be straightforward about our lack of commitment to honor our young patients’ preferences than to make a promise and not live up to it.
A Sense of Connectedness
Does including adolescents and young adults in the decision-making of their end-of-life care help them accept death?
I don’t use the phrase “accept death.” I don’t believe we fully understand what goes on in the minds of people as they actively start to die. In my practice, I have observed that sometimes when patients decline, they often become isolated and lonely. Having a conversation about what might happen once this process begins and asking patients how they want to be cared for allow them to have a stronger connectedness with their loved ones, and then they don’t feel as isolated. And because of that connectedness, I have observed that patients are calmer and more comforted.
I think people want to believe their loved one accepted death, because it is easier to cope with the loss of that person, but I don’t know that it is true. Our goal is to figure out whether we can help people feel connected vs separate and calm vs panicky as they are dying.
We have no scientific evidence that having these conversations results in end-of-life care that helps patients feel more connected and calmer, but we have reason to believe that it is true. What scientific data do show is that having these conversations does not appear to upset people and that there is a general sense of appreciation for having had the conversation. ■
Disclosure: Dr. Feudtner reported no potential conflicts of interest.
1. Wiener L, Zadeh S, Battles H, et al: Allowing adolescents and young adults to plan their end-of-life care. Pediatrics 130:897-905, 2012.
2. National Cancer Institute: A snapshot of adolescent and young adult cancers. Available at http://www.cancer.gov/research/progress/snapshots/adolescent-young-adult. Accessed July 14, 2014.
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; Senior Medical Advisor to the LIVESTRONG Foundation; and Chief Medical Officer of Critical Mass: The Young Cancer Alliance.