As caregivers, you may be in charge of a partner, parent or grandparent with Parkinson’s. Although most people don’t die from their Parkinson’s disease, they may experience other serious medical conditions, some of which may be complicated by the presence of PD. However, whether or not someone you care for has Parkinson’s, every family should have the basic legal documents that will enable them to satisfy the wishes of those who may be unable to make decisions for themselves.
We often think of getting affairs in order as part of end-of-life planning. However being prepared with basic legal documents, before they are needed, could make future difficult times a little easier. In fact, people should have these documents regardless of age. Key documents include a HIPAA Authorization, Power of Attorney, and an Advance Healthcare Directive.1
HIPAA stands for the Health Information Portability and Accountability Act, which the government established to set out legal standards for protecting a person’s health information and keeping medical records private. A fully executed HIPAA authorization provides consent for physicians and other medical professionals to discuss a patient’s condition or plan of care with other family members or friends designated on the form. This authorization enables sharing of medical information but not the decision-making.1
Power of Attorney
The term “Power of Attorney” can be broadly and narrowly defined but generally provides for someone to make legal decisions on another’s behalf when they are no longer competent to do so. It is generally part of the estate planning process.
A Medical Power of Attorney (MPOA) or durable power of attorney for health care are other terms to describe a health care proxy. A health care proxy is someone who is designated as a trusted agent to make medical decisions on a patient’s behalf if they are no longer able to make decisions for themselves.
There is also a durable power of attorney for finances, which designates someone who has authority over financial matters.2 It authorizes a trusted friend or family member to the bank and manages assets on your behalf. A new legal area has created a digital power of attorney which covers designating someone to manage digital assets including e-mail, photos, social media accounts, and other online services.3
Any type of power of attorney documents must be prepared and executed while the person is mentally competent to do so.
Advance Health Care Directive
Also known as a Living Will, an advance health care directive allows a person to establish their wishes for end of life care/life support decisions.3 This document also must be prepared while a person is competent and able to make their choices known. It generally addresses the subjects of resuscitation if the heart stops, artificial life support such as breathing on a ventilator and providing nutrition through a feeding tube. These are instructions for physicians and the health care team to follow, whether or not there is a designated health care proxy.4
The documents discussed in this article are legal documents and should be prepared by a lawyer. You may already have a trusted family attorney. Specialists in eldercare, or a trusts and estates lawyer, can also help families navigate these emotional topics. Online services exist but it is important to get advice from someone expert in regulations for the state in which you live. Most healthcare directives will be valid wherever you may seek care, so if you are traveling or spend the summer or winter in another state, your wishes should be followed. That noted, not all states have the same rules so check with an attorney to make certain your intent is preserved.4
Storing legal forms
Know where your documents are kept
Make sure the copies you have meet current legal requirements
Discuss your wishes periodically, and update forms if circumstances change
Discuss other end-of-life matters like a will, funeral and burial wishes in advance3
At the time that families require these documents someone is generally ill or dying. Emotions can be high and family members may not always agree, so an attorney can help advise how to select appropriate representatives. Having too many people legally responsible to share decision-making can result in family discord while interfering with the administration of the patient’s wishes. Should someone be incapable of making their own medical decisions in the absence of a durable power of attorney, their relatives would have to go to court. They would need to petition for a conservatorship or guardianship to gain the right to become medical and financial decision makers. That process could take time, and be a distraction for a family when it is most vulnerable.1,2,4
Sollitto, M. 3 Legal Documents Caregivers Need to Manage a Senior’s Healthcare. Available at: www.agingcare.com/Articles/legal-documents-to-make-healthcare-decisions-for-your-parent-146623.htm. Accessed 10.17.18.
Dailycaring Editorial Team. 5 Important Legal Documents for Caregivers
https://dailycaring.com/5-important-legal-documents-for-caregivers/. Accessed 10.17.18.
Goyer, A. Legal Preparations for Caregiving. Available at: https://www.aarp.org/caregiving/financial-legal/info-2017/legal-preparations-ag.html. Accessed 10.17.18.
Legal Documents Every Family Caregiver Needs. Available at: https://www.vanderbilt.edu/child-family-center/resource-articles/legal-documents-family-caregivers.php. Accessed 10.17.18.