End-of-Life Planning & Advanced Directives
We understand that every individual is unique, and no two people approach decision-making the same. This is especially true when approaching decisions that have the potential to directly affect your future.
Regardless of your perspective, the need to plan is something we all have to think about and discuss with those who will also be impacted by these decisions.
The information below can help you as you engage in this decision-making and planning. As always, your Care Coordinators and clinic team are available to help talk through all these questions.
Conversations With...
In our series of recorded interviews, "Conversations With... Exploring Hard Decisions While Living with ALS," we address sensitive and deeply personal topics that often arise for individuals and families navigating ALS. These discussions focus on end-of-life planning, legacy creation, and other complex decisions that may not always come up in support groups or private conversations. Each episode features thoughtful dialogues with experts who bring compassion and insight to their respective fields, offering guidance and support for these important and sometimes challenging considerations. New information and interviews will be added periodically, ensuring the series remains a valuable and evolving resource. The series is hosted by our Chief Care Services Officer, Debbie Schlossberg, MA, LMSW, and our Hudson Valley Care Coordinator, Nancy Brenner, LCSW.
This episode is part one of two that touches upon the gift of legacy and memory. How might we want to be remembered? What creative steps can we take to ensure that our stories live on?
Special guests Mary Ellen Markant with Signature Sunsets & Marjorie Focarazzo represent the Funeral Consumers Alliance and discuss funeral planning from a consumer advocacy standpoint with emphasis on choice and affordability.
This is part two of our first episode where we discussed the gift of legacy and memory. How might we want to be remembered? What creative steps can we take to ensure that our stories live on?
Special guest, Amy Cunningham, discusses environmentally friendly alternatives in funeral planning with emphasis on green burial and personal options.
This episode addresses the benefits of pre-planning a funeral. Join our ALS United Greater NY hosts and Funeral Director Christopher Hassan as we explore key factors in pre-planning.
Advance directives are documents wherein you can express, in written form, your medical wishes related to treatments, late-stage disease options, and end-of-life care. These wishes must be documented in this way because by law, medical providers, including EMTs, are mandated to make all efforts to resuscitate and sustain life in all situations unless explicitly indicated otherwise by the patient.
The right of a competent individual to accept or withdraw medical treatment is protected by law. But while ALS does not typically affect a person’s decision-making capacity, it CAN affect a person’s ability to communicate. By completing an Advance Directive, you are sharing your medical wishes and priorities with your loved ones including, if desired, with a designated proxy who can speak for you if you are unable to. By designating a proxy, you are also ensuring that there is a trusted person who can be your voice in cases where you may not be able to communicate your own wishes and that this person has been authorized by you.
This can be a great gift to loved ones if there are any disagreements among them about decisions. Your expressed wishes communicated clearly, will always supersede anything that is written should you change your mind. Indeed, it should be reviewed periodically to ensure that it remains an accurate reflection of your wishes, but by completing an Advance Directive, you have the security of knowing that your wishes will be respected.
A complete Advance Directive includes both a Proxy Directive and an Instruction Directive so you can both identify a trusted individual to speak for you as well as provide instructions for your care that align with your hopes, dreams, and values.
One way to have a say in your future medical care is to designate a person (a proxy) you trust and give that person the legal authority to decide for you if you are unable to make decisions for yourself. Your chosen proxy (known as a health care representative) serves as your substitute, "standing in" for you in discussions with your physician and others responsible for your care. So, by a proxy directive we mean written directions that name a "proxy" to act for you. Another term some people use for a proxy directive is a "durable power of attorney for health care".
Another way to have a say in your future medical care is to provide those responsible for your care with a statement of your medical treatment preferences. By "instruction directive" we mean written directions that spell out in advance what medical treatments you wish to accept or refuse and the circumstances in which you want your wishes implemented. These instructions then serve as a guide to those responsible for your care. Another term some people use for an instruction directive is a "living will".
Combined directives -- A third way combines features of both the proxy and the instruction directive. You may prefer to give both written instructions and to designate a health care representative or proxy to see that your instructions are carried out. So, by a "combined directive," we mean a single document in which you select a healthcare representative and provide him or her with a statement of your medical treatment preferences.