Originally published in the Fall 2010 issue of PDF News & Review.
By Janna Dutton, J.D.
If you or a loved one is living with Parkinson’s disease (PD), it is likely that you have made decisions about your treatment plan, along with your health care team, a group that may include a movement disorders specialist, a physical therapist, a speech therapist and others.
At some point, however, all of us — whether we live with Parkinson’s or not — may find ourselves unable to make necessary health care decisions. If we go under general anesthesia for surgery, for example, or if we become unconscious due to an accident, others will have to make medical decisions for us. For people who have Parkinson’s, there is the additional possibility that communication difficulties, increased physical disability and/or cognitive impairment may interfere with the ability to convey preferences for different treatment options.
An important way to plan for these possibilities is to appoint a trusted person to be your health care agent, also called a proxy. In the Summer 2010 issue of News & Review, we began a four-part series on legal issues and Parkinson’s by discussing the importance of long-term care. In this second article, we address how appointing a health care agent is essential to ensuring that your health care wishes will be carried out.
What is an Agent for Health Care?
When you designate an agent for health care, you are appointing someone who will make decisions on your behalf when you cannot.
Once you have appointed an agent, he or she may have legal decision-making powers immediately, but you will continue to have the right to make your own health care decisions until you need assistance. You can also put in place restrictions delaying your agent from making legally enforceable decisions for you until a doctor determines you are unable to do so. This option will take additional time and paperwork.
What Decisions Can an Agent Make?
The details vary according to state laws, but in general, your designated health care agent can be empowered to make any and all decisions concerning your personal care (e.g., home health care or assisted living decisions), your medical treatment and your hospitalization. The choice is yours as to whether the agent’s power is to be limited or whether he or she has the flexibility to make all decisions for you.
Your agent may have authorization to speak with your doctor during appointments. He or she can communicate your preferences regarding changes to the dosages of your medications or your treatment regimen in general. The agent can also voice any objections — religious or otherwise — to certain types of care.
Your agent can authorize adjustments to your care as your situation changes. Additionally, he or she often must make decisions about care at the end of life, such as whether to initiate such interventions as withdrawing intravenous fluids, pain medications, antibiotics and feeding through a tube. In most states, your agent will also have authority to access your medical records and to direct the disposition of your remains.
The most important thing to remember is that your agent is required to make all decisions with due care for you, for your benefit, according to the terms of health care power of attorney documents you have signed.
Choosing a Health Care Agent
Whom should you choose as your agent? It should be someone whom you trust and know well. Many people choose their spouse, another family member or a close friend. While you can choose more than one person, having only one person in charge ensures that there will be no disagreement down the line among the people concerned for your well-being.
In making your decision, remember that your agent may have to serve as an advocate. He or she should be prepared to negotiate with health care providers to make sure your wishes are honored. It is extremely important that the person you choose is someone with whom you can communicate honestly so that he or she understands and carries out your wishes.
Your agent can be anyone over the age of 18. If you choose a doctor as your agent, remember that he or she will no longer be able to serve as your care provider, in order to avoid a conflict of interest.
At any time, you can cancel your health care proxy, change the person you have designated, or update any instructions on your legal documents.
How to Designate a Health Care Agent
You can designate a health care agent by filling out a legal document called a health care proxy or a medical power of attorney. To find the form in your state of residence, contact the bar association or area agency for the aging in your state, or download it from the Caring Connections website (www.caringinfo.org). States differ in their requirements for witness signatures and notarization of the document, but in general, it is not necessary to hire a lawyer to create a legally binding document.
Communicating Your Wishes
Talk to the person you have chosen as your health care agent, and to your family members and health care providers, about your preferences for care. This decision may be one of the most important you will ever make, and the people you love and respect can help you choose the right course of action for you.
To think through your preferences and open up these conversations, it may help to write a living will, a legal document that puts in writing how you wish to be cared for during a terminal illness. Whereas the document appointing a health care agent grants power to an agent to make decisions in many situations, including those that have not been anticipated, a living will provides a way for you to express your instructions for care in specific medical situations. States vary in their requirements for living wills, so if you want it to be legally binding, be sure that it is written in accordance with the laws of your state.
One resource that I recommend to help people to express their thoughts is “Five Wishes” (www.agingwithdignity.org). It is geared toward end-of-life issues, but don’t let that put you off from taking a look. This document asks questions, in a systematic way, about the kind of medical treatment you want or do not want, as well as how comfortable you want to be and how you want people to treat you.
Guiding Your Own Care
Appointing a health care agent is a challenging process of thinking about your values and fears, and talking with your loved ones. But doing it early, when you have this luxury to talk with your family, helps you take control of your health care and your life, and will ease decisions for your family later on.
With a plan in place, you and your family can have confidence that your wishes will be carried out.
Ms. Dutton is an Eldercare Attorney with Dutton & Casey, P.C. She recently presented this topic at one of PDF’s PD ExpertBriefings. Her next article will address financial management for people with PD.