End of Life Planning
It’s important to consider end of life plans and make preparations regardless of where you are in your breast cancer journey. (Even adults without cancer should do this!) Although these steps can feel scary, it can be empowering to plan ahead. By making end of life preparations, you’re relieving that burden from loved ones later on and securing your own wishes.
Where to Start
Knowing where to start when considering end of life planning can be overwhelming. To help, we hosted “Shady Pink Elephant,” a three part video series highlighting useful information to help you think about your end of life plans.
Part I: The Research and Benefit of Introducing Palliative Care Early in the Cancer Journey
Kate Adelstein of the University of Virginia explains what palliative care is and why you should take advantage of it.
Part II: Let's Have Dinner and Talk about Death
Michael Hebb, founder of Death Over Dinner, explores why it’s so important to open up a conversation about death with your loved ones, even if you don’t have cancer.
Part III: The Nuts and Bolts of End of Life Planning
Stephanie Fajuri from the Cancer Legal Resource Center discusses the practical decisions related to end of life planning.
Planning Ahead: Legal Documents for End of Life Planning
In order to plan ahead you need the right legal documents so your family knows your wishes. Identify someone you can trust to help with legal matters, and make them aware of the location and status of your paperwork. Creating these legal documents doesn’t mean that you’ve given up hope or are planning to stop treatment.
Advance directives, also known as healthcare directives, are important legal documents for end of life planning. These documents detail what type of medical care you want if you aren’t able to speak for yourself. Advance directives vary by state. You can download and review forms for free through CaringInfo. There are different types of advance directives, which include:
Living Will: Details your wishes concerning medical treatments if you aren’t able to express them yourself.
DNR (Do Not Resuscitate): Request or decision by you or someone acting on your behalf if you do NOT want life-saving measures performed if your heart or breathing stops.
Healthcare Agent: Also referred to as a healthcare proxy or durable power of attorney for healthcare. This document identifies the person you want in charge of your healthcare decisions if you aren’t able to speak for yourself. You should speak with this person early so they understand your priorities and wishes. The laws vary by state on what power and responsibilities this person has.
Other Important Legal Documents
Legal Guardian: A legally appointed person responsible for making decisions for a minor (child under 18) or a mentally disabled person who is unable to make her own decisions. Laws vary by state on what power and responsibility this person has.
Power of Attorney: Grants one person the right to represent another within specific contexts, such as making decisions related to health, legal matters, banking or even conducting business on your behalf.
Will: Outlines what will happen with your financial assets or property, as well as what happens to dependents like children or pets, after your death. Without a will, your state will dispose of your property according to state law.
Legal Documents Made Easy
Navigating legal documents can be complicated, but there are many resources available no matter where you live.
Estate planning lawyers help people write instructions for the future handling of their property, finances, healthcare and the future support and care of their loved ones. You can find an estate planning lawyer near you at Findlaw. You can also find free legal services in your state through Findlaw’s State Legal Aid Resources.
Wills for Free can help you to prepare your will easily online. This is only available to residents of the United States and Canada.
Cancer Legal Resource Center (CLRC) is another great resource that provides information on legal issues over the phone to anyone affected by cancer. Contact their national telephone assistance line at 866.THE.CLRC.
Triage Cancer® is a national, nonprofit organization that provides free education on legal and practical issues that may impact individuals diagnosed with cancer and their caregivers, through events, materials, and resources. The Legal & Financial Navigation Program offers one-on-one help with issues such as work, health and disability insurance, finances, and estate planning. CancerFinances.org is an online toolkit to help people manage finances after a cancer diagnosis.
Once you have all your documents in order, you can store them at Everplan, a secure, digital archive for end of life plans.
Telling Your Family about Your Wishes
It is so important that we all talk about our end of life wishes with those closest to us. You should discuss how and where you’d like to spend your last days, who you want around and your preferences on funeral services. These resources can help you prepare for this tough but vital conversation:
- The Conversation Project has information and a toolkit to help people talk about their wishes for end of life care.
- Death over Dinner provides uplifting and interactive ways to talk about end of life wishes through dinner parties with your loved ones.
Hospice programs provide a dedicated team of medical professionals available 24/7 who help manage pain and other symptoms, teach caregivers how to help you and offer emotional support. Most times, hospice care can be done in the comfort of your own home, with inpatient hospice facilities also available. This service is usually covered by insurance, and you can consult with hospice programs anytime, even for basic information.
Hospice can be called in or consulted at any time by you or your family members. At the latest, hospice should be called when the decision is made to end treatment or when life expectancy is six months or less. Research has shown that introducing hospice care early may actually lengthen life by increasing the quality of time the patient has remaining.
Legacy Projects: Keeping Your Memory Alive
Legacy projects are a great way to engage with your family and friends while sharing your wisdom and memories. Projects such as scrapbooks, audiotaped stories, written history and cards and letters written for future events are a meaningful way to live on. For more guidance, listen to Dr. Yvette Colon’s talk on Creating Your Legacy.