End-of-Life Care
The Adolescent & Young Adult Cancer Journey
Let’s be honest. It isn’t fair, it isn’t right, and we wish like hell cancer had never come into your life. This is the part of cancer that no one wants to talk about but we are going to because sometimes even the most hard-fought battles end in defeat.
Critical Mass: The Young Adult Cancer Alliance is a coalition of advocates who have all seen first-hand the devastating impact cancer has on the life on an adolescent or young adult. We aren’t your typical cancer organization. We are doctors, nurses, social workers, community advocates, and industry leaders who have cared for and supported individuals just like you.
The most common emotions you will likely feel at this time are isolation, fear, and anxiety. These are completely normal. Where you are in your physical and mental development is screaming: “This cannot be happening.” You may even feel like fighting harder or running away. Again totally normal. But know that you are not alone and there are experts who study this stage in life in order to support you and your loved ones.
Having a conversation about what the end of your life will look like sucks but like everything — yes, even the sucky end — there are things you can do to make the process easier on yourself and your loved ones. We’ve developed these questions to help you navigate this time.
Are there any therapies available to me at this stage even at another hospital? If so, can you walk me through my options?
The most important thing for your and your oncologist to discuss is the quality of your remaining life openly. You might find it helpful to bring in a specialist who understands all the options available to you from hospice to palliative care. There may be programs at other institutions you can take advantage of even if it seems hard to leave your current team behind. You need to make the best decision for you and if you want to live out your last few days on a beach in Hawaii we are all about it.
What can I expect as my cancer progresses? How will this impact my day-to-day life and ability to handle things without help?
By having an open and honest conversation about what to expect is the first step to emotionally accepting the end of your life. No, it is not easy and we don’t want you to think that talking about death is some magic bean of healing. But it is one step in the process that we know is important to you and your loved ones from family to friends.
How will you monitor and address any pain? Are there complimentary medicines I can take advantage of? (i.e. acupuncture)
Let’s talk about comfort. That’s all that matters. Adolescents and young adults can find comfort in a variety of ways. You may want to try natural remedies like acupuncture or you may want to ensure you have a prescription pain killer on hand. There is no right or wrong answer, only an agreement with your oncology team about what is safe and what will improve your quality of life.
Am I eligible for hospice care? Who can I work with to coordinate between them and my insurance company?
Hospice is specifically designed for this point in your life. The goal is comfort and to keep you pain-free. Depending on your wishes, you can have hospice care at the hospital or in your own home. Hospice also provides emotional support to your family and loved ones so that you don’t have to. But it is important to work with you oncologist and hospital staff on-hand to coordinate with your insurance company. Plans can differ and it is always better to know what is and is not covered before you and your medical team finalize your end-of-life care directives.
Is there a legal aid program on-site to assist with advance care planning?
Advance care planning is a nice way of saying “this is what I want.” It is important to get all this in writing and to have an open and honest conversation with your medical team and loved ones especially if you are under the age of 18 and your parents are legally responsible for your care. Ask to speak with a social worker on staff who specializes in oncology and end-of-life planning. They will be able to help you navigate through all the legal waters from advance directives (i.e. do not resuscitate) to which of your siblings you’ve decided to leave your ant farm.
What support programs do you have in place for me? My caregivers? My children?
Do not be worried if your institution does have have a support program in place that meets your needs. You can be referred to another institution or connected virtually to an organization that is prepared to specifically address adolescent and young adult care needs. Many adolescents and young adults find it helpful to prepare something positive for their caregivers and/or children. You can write letters, record a video, even compile music or movies that you love… believe it or not, this not only helps them but can also help you cope with the small amount of time you have left.
I preserved my eggs/sperm. Who can I speak with about my wishes?
Yeah those little guys or girls in test tubes need an advance care directive as well. Sofia Vergara can totally relate. There are a whole lot of options on the table and a whole lot of things to consider from medical, legal, religious, cultural, etc. viewpoints. Speak with your oncofertility team, your family, and a lawyer about your wishes.
Next steps…
After you check in with your family and oncology team, you may find it helpful to reconnect with Mission Control which has age-appropriate resources just for adolescents and young adults impacted by cancer.
