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Hope Hospice is publishing a five-part monthly series about common family caregiver mistakes. Following is Part 1.5, a continuation of the previous discussion on preparation. This series is written by Debbie Emerson, MS, Hope Hospice Community Health Educator.
Revisit Part 1: Not Planning in Advance
I had planned for this month’s blog, second in our series about common mistakes that family caregivers make, to be about the importance of having a support system in place. Then COVID-19 happened, and I quickly realized two things. First, building a team of helpers in a time of isolation and physical distancing is challenging; we’ll cover that topic at a later date. Second, this unprecedented medical and societal devastation shines a light on the importance of being certain that healthcare, financial, and legal affairs are in order, regardless of your age. Do you and your loved ones have an advance healthcare directive as well as the other documents necessary for managing legal and financial issues (e.g., Power of Attorney) should sudden illness, disability, or even death occur?
Highlighting the urgency of this need to be prepared was an email I recently received from a gentleman who has attended Hope’s Family Caregiver Education Series. He regularly cares for his elderly parents, but this time he sought guidance about relatives who live out of state—a couple in their 40s, both of whom were diagnosed with COVID-19. The husband was not expected to survive. This couple did not have advance healthcare directives nor were documents in place that would enable the wife to handle her husband’s independent financial accounts and property. To complicate matters, the couple did not live in a community property state.
It is not uncommon, especially among the young, to underestimate the necessity of preparing for the time when we are no longer able to act on our own behalf. The first blog in this series stresses the importance of planning ahead, not waiting for a crisis to force vital decisions. As we have seen with the current global pandemic, the sudden rise of an emergency can take away options, resources, and even the freedom to travel places where we need to conduct business. I am hoping that the blessing in disguise in these terrible times is a wake-up call for us all.
Life is uncertain. However, we can all reduce that uncertainty by putting our desires in writing while we still have the mental capacity to let our spouses, family, and friends know what our wishes are, including a specification for who will have the legal means to carry out those wishes.
If you or your loved ones do not yet have an advance directive in place or have not even discussed the need for one, now is the time to get moving.
(also known as advance directives, living wills, or durable power of attorney for healthcare) are legal documents that specify your preferences for medical treatment and designate a healthcare proxy (also known as agent or surrogate) should you no longer able to make decisions due to illness or incapacitation. Other end-of-life issues that may be included in an advance directive are the individual’s preferences for comfort care, ventilation, tube feeding, and organ donation. Advance directives may be changed at any time as long as you are of sound mind to do so; just be sure any changes are shared with your physician and family.
Advance directives do not have to be complicated documents. You can obtain a form from an online source (see below), your doctor or hospital, a lawyer, your state’s department of health, or you can even write down your wishes yourself. Since advance directives are considered legal documents, whatever form you use must either be notarized or witnessed by two individuals who are not related to you and are not entitled to any part of your estate.
Be sure to choose an advance directive that adheres to your state’s laws, as these documents are state-specific.
The following online sources provide helpful information about advance directives. In addition, The Conversation Project and Five Wishes websites have been updated with information about having end-of-life discussions during the COVID-19 pandemic.
AARP: Advance healthcare directives
Contains advance directives for each state that can be downloaded and printed at no cost.
Included on the website are useful tools to help start the conversation about end-of-life wishes, both for your loved ones and yourself. The tools are available in several languages and can be downloaded and printed for free.
Contains many resources for individuals and families. The Five Wishes document meets medical and legal criteria for fulfilling end-of-life wishes, but also addresses personal, emotional, and spiritual issues. Resources are free, but the advance directive document is available for purchase.
Provides end-of-life resources including POLSTs and a free, downloadable/fillable Advance Health Care Directive for the State of California.
National Hospice and Palliative Care Organization: Advance care planning
Contains information (including webinars, videos, and documents) about communicating your wishes to your loved ones. Also includes free advance directives and resources to help you complete them.
Physician Orders for Life-Sustaining Treatment
Physician Orders for Life-Sustaining Treatment (commonly called a POLST Form) are not an advance directive, but they complement one. A POLST is completed when a person becomes seriously ill or frail. Its purpose is to advise the clinical team to what level, if any, you desire life-sustaining interventions. Emergency personnel know to look for the pink POLST in the home when responding to a 9-1-1 call, yet they are not permitted to consider an advance directive. If you are not seriously ill, you do not need a POLST, but you should complete an advance directive.
Many people procrastinate when it comes to preparing legal and financial documents. It’s understandable, as the task can be complicated and frustrating. If one has an extensive portfolio, the process can involve attorneys, estate planners, and/or financial experts. However, if you think about organizing your financial and legal affairs as a gift you are giving to your loved ones after you have passed away, you may be more motivated to begin the activity. And, if you look at it as ensuring that you can have control over what happens to your legacy, you may be even more inspired.
It has been said that with crisis comes opportunity. I urge you to use this current crisis as an opportunity to plan ahead. Give your loved ones the gift of knowing what your wishes are and give yourself the gift of peace of mind.
Here are two trusted websites that contain free resources to help you begin the process:
National Institute on Aging/National Institutes of Health: Getting Your Affairs in Order
AARP: Estate Planning in the Time of the Coronavirus Pandemic
Please note: Laws concerning healthcare, financial, and legal directives vary by state so be sure to check your state’s guidelines before preparing any of these documents. Or better yet, consult with a professional.