Palliative Care for Adolescents and Young Adults: How to Support

Palliative Care for Adolescents and Young Adults: How to Support Your Loved One

b-present Team | October 24, 2024

Palliative care is often misunderstood as something only for the elderly or those in the final stages of life, but it’s much more than that. Unlike hospice, which is typically focused on end-of-life care, palliative care is available at any stage of a serious illness and aims to improve the quality of life by managing pain, symptoms, and stress.

Adolescents and young adults (AYAs) with cancer in particular have distinct developmental and psychosocial needs that may be unrecognized or go unmet during their cancer experience. By reflecting their unique needs, goals, and concerns in a palliative care plan that is integrated with their overall care, the care team and support network can work together to improve their overall cancer experience by addressing not only their physical needs, but also their emotional and social challenges as well.

This article will introduce you to the topic of palliative care, particularly as it relates to AYAs, and will help you better understand the kinds of meaningful support you can offer to meet their social and emotional needs during one of the most critical times in their lives.

So, What Exactly is Palliative Care?

Palliative care is a specialized medical approach focused on relieving the symptoms, pain, and stress of a serious illness, like cancer. Unlike treatments aimed at curing the illness, palliative care centers on making the patient as comfortable as possible—physically, emotionally, and spiritually. This care can be provided at any stage of the illness, from diagnosis onward. It involves the patient, their family members, caregivers, friends, significant others, and others in their social network.

What is Palliative Care for AYAs?

For adolescents and young adults, palliative care focuses on improving their quality of life by managing pain, symptoms, and emotional stress related to a serious illness. Beyond physical comfort, it addresses their emotional well-being, social needs, and desire for normalcy, control, and autonomy. This holistic approach treats the person as a whole, considering their mental, emotional, and social health in addition to their physical needs. It also helps them navigate fears, relationships, plans, and evolving identities, as well as considering more difficult topics like legacy planning, giving them the opportunity to plan for and create meaningful memories, complete unfinished goals, and provides a sense of control and purpose.

To learn more about AYA-specific palliative care needs and challenges, the following article, “Palliative care for adolescents and young adults with cancer” provides a great overview.

The Unique Needs of AYAs in Palliative Care

AYAs are in a period of life when they are forming their identity, exploring relationships, and planning for the future. A serious illness can completely disrupt this process, leading to feelings of isolation, loss of control, uncertainty about their future. Palliative care teams recognize this and offer specialized approaches to help AYAs cope with these challenges. Some of the questions for AYAs with cancer to consider include:

Their hopes and priorities for the future
Who and/or what brings them comfort
What makes them feel better physically
What scares them
What do they want to avoid
What do they want their family and friends to know
What do they need from their health care team

Answers to these questions will help the palliative care team ensure they understand how to best address and meet their physical, emotional and spiritual needs from diagnosis onward.

How You Can Support an AYA Receiving Palliative Care

Learn about palliative care. Learning about palliative care can equip you with tools to better understand your loved one’s needs and offer care that is thoughtful, intentional, and aligned with their wishes. Check out resources like the American Cancer Society and Get Palliative Care to learn more.

Respect their independence. Adolescents and young adults value their autonomy, and illness can make them feel as though they’ve lost control of their lives. They need to be involved in decisions about their care, whether it’s choosing the type of activities they want to engage in, their daily routines, or even which friends or family members they’d like to spend time with. Respect their desire for independence and involvement in their own care and where appropriate, help ensure their needs are being met.

Acknowledge their feelings, AYAs may experience a range of emotions—from anger to sadness to anxiety. Avoid dismissing their feelings and only offer solutions when they have asked for your input. Sometimes the best way to support them is simply by listening and letting them know their feelings are valid. Be there to create a safe, judgment-free space for open conversations without pressure.

Offer connection Feeling disconnected is a major challenge for AYAs dealing with a serious illness. Understand what social, educational or recreational activities are important for them to continue. Where appropriate, help them stay connected to friends, school, or even hobbies they can no longer participate in physically. Palliative care teams often have social workers or therapists who can support this connection, so ask for resources and ideas. Virtual hangouts, video games, and creative activities can help them feel included.

Be mindful of their privacy. Be sure you understand and respect their privacy wishes. This can include if/how you share updates with others and whether or not they want you present during medical appointments. Always communicate openly, and if unsure, ask them directly what they’re comfortable with.

Encourage creativity and expression AYAs often find comfort and meaning in creative activities. It can be a welcome distraction, and an opportunity to be in the moment. Creative outlets like journaling, drawing, or making music can help them express feelings that are hard to put into words. Find out what activities are of interest and assist with any materials, supplies or equipment needed to support those activities.

Help them continue to move forward. Many AYAs are at a stage where they are thinking about their future, but a serious illness can shift their goals and their timeline. Make time to explore their hopes, goals, and unfinished plans. How can you help them with those needs and ensure they continue moving forward? Whether it’s learning a new skill, exploring a different path, graduating from school, taking a dream trip, or spending time with someone special, palliative care teams can often help with legacy planning or creating meaningful experiences to fulfill these goals. Even small steps toward these goals can provide a sense of achievement and normalcy.

The Importance of Palliative Care for AYAs

Palliative care for AYAs aims to preserve their identity and sense of normalcy even in the midst of a serious illness. It allows them to voice their concerns, make choices, and maintain dignity. Caregivers play an essential role in supporting this autonomy. For caregivers, understanding the importance of these aspects can help you show up in ways that feel supportive and affirming to them.

Final Thoughts: Just Be There

Every one of us has the capacity to make a difference for someone going through cancer. Remember, it’s not about having all the answers or knowing the perfect thing to say—it’s about following their lead, honoring their wishes, and showing up authentically with patience, compassion and empathy. If you are struggling to find answers, don’t be afraid to lean on the palliative care team. They are a great resource for advice and guidance. Strive to make each day better, in whatever form that takes. Connect, hold space, listen, laugh, create new memories, and be a source of love and support. Your presence is the most meaningful gift you can give – improving their well-being, helping them feel seen, supported and empowered during an uncertain and difficult time.

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