Jeanne Burke- Circle of Life

While I wish I could say there is a cookie-cutter approach to conversations about end-of-life, there is not. Each family’s situation and circumstances are unique to them. Doing some research ahead of time allows you and your loved ones to know what decisions need to be made and what your options are or might be. By starting these conversations early, you give yourself time to think through what or how a decision will impact you or your loved ones emotionally, financially and on many practical levels. As I write I will use the words you or your loved ones. While cumbersome, it is because I believe that when we do the work ourselves, we are often more comfortable when it’s time to have similar conversations with those who are important to us or rely on us for care.

Do you know if you are you asking and answering the right questions? Each decision has the potential to be open to interpretation, leaving someone at a disadvantage in times of high stress decision making. As one daughter so aptly put- “There is so much gray area,” she says. “You’d hope the living will would spell it all out, but it doesn’t.”

A few areas to consider:

Know what healthcare coverage is in place: Are there multiple insurance policies or just one? Does coverage include long-term care or is there a separate long-term care insurance policy? Can you enlist the guidance and support of a case/care manager? If so, at what cost to you? Is there a maximum benefit allowance or is it based on the number of visits? Is palliative care covered? Do any life insurance policies have a long-term care rider or allow you to access monies to use towards healthcare costs? What are the requirements for accessing money in IRA, 401K or other retirement or investment accounts?

Many families believe that Medicare will pay for everything if they or their loved one needs specialized care in a nursing home or rehabilitation facility. Unfortunately, this is not the case.  Being aware in advance of what the various costs associated with care at end of life or long-term illness (which can be significant) can help you prepare for what may be a long financial commitment. You can learn more here about the cost of long-term care options in the U.S.

Know what documents you will need to have in place: In the U.S. the documents that are required to ensure your wishes are followed at end of life are often specific to the state, or even county, you live in. There are several resources available to learn more~ you can click on the image above or view the resources at the  National Healthcare Decisions Day website. It is important to know what you will need to have in place, who needs to sign and/or witness it, and who will need to know (and understand) what you are requesting exactly. Do you know where you need to keep these documents? If you travel, especially for those who live elsewhere for extended periods, do you know how to ensure that you have the documents in place for each place you stay or travel?

Know who is going to be the healthcare or financial advocate and when that responsibility begins: Who is or will be assigned the role of Durable Power of Attorney for Healthcare (the person who makes decisions specific to healthcare when you or your loved one no longer have/has the capacity to do so)? Who will be assigned that role to take care of financial tasks? If those assignments have not been made, do you know when it will be time to have your loved one sign the appropriate paperwork to enable you to speak directly on their behalf? If it is already complete, does each party assigned a task know the wishes of the person they are to speak and advocate for, and are they able/willing to do so (regardless of whether or not they agree with those decisions)? Many providers recommend that the decision-maker for healthcare is different than the decision-maker for finances. These can be touchy subjects to talk about in many families. Educating yourself ahead of time and knowing what the various options are will help the conversations go a little more smoothly.

Know who plays what role in the family: What questions are on the table about what is expected as a primary or secondary caregiver? How are decisions made in the family? What is everyone willing and able to contribute~ in time, hands-on support, organizing, delegating or financially? Who is the person most likely to carry out wishes as directed? (At times, this may be someone outside the family.) Who else will be or is willing to be involved in care or support and in what ways?

These are just a few questions to consider and decide about as you contemplate questions beyond what is covered in Advanced Directives or a living will.  In essence, there is more to the question~ do you wish for extraordinary measures to save or maintain your life?  As you Identify what is important and meaningful to you and your loved ones you build the foundation to outline and document what you need and want to plan for. Also, know these decisions are not permanent. Periodic review to revise your decisions is important, especially after a significant life event and when gaining new insight or understanding.