Dukes County Health Council: Hard conversations

Selecting a healthcare agent is a prudent step in the right direction.

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Most of us do not like to think about bad things — like being sick and unable to speak for ourselves. However, most of us do know what we want out of life. Choosing a healthcare agent, talking with them, and sketching out an advance-care plan are important ways we can easily prepare for events that we hope will not happen. In doing so, we will help assure that our wishes are carried out even if we are not in a condition to voice them. A healthcare agent (also called a healthcare proxy, or someone with medical power of attorney) is a person we designate to speak for us if we cannot speak for ourselves.

You might think that you are young and healthy, and it is not necessary to choose someone to represent you if you can’t speak for yourself; that health agents and advance-care directives are just for the old and sick. Wrong. According to the CDC, unintentional injuries are the leading cause of death for Americans ages 1 to 44, and in 2021, the third leading cause of death overall. Unintentional injuries include falls, car accidents, and accidental poisonings. Unfortunately, statistics tell us that we can expect that four individuals on the Vineyard between the ages of 20 and 40 will die as a result of head trauma in any given year. Since about 50 percent of patients with serious head trauma die, that means that about eight young people a year in our community may not be able to speak for themselves as a result of a serious accident. And even at the end of life, we have found at Hospice and Palliative Care of Martha’s Vineyard that many patients don’t have a healthcare agent, and haven’t expressed their wishes in an advance directive.

An advance-care directive is a simple document that expresses a person’s wishes if they can’t express them themselves. It supplements the choice of a healthcare agent. Together, the choice of a healthcare agent along with an advance-care directive empowers an individual to maintain control over their medical care and wishes.

So how does one get started in choosing a healthcare agent and developing an advance-care directive? It is easy. However, there are some things to think about and conversations that need to happen.

  • Choose a person for your healthcare agent whom you respect and can trust (they will be your representative if you are unable to decide at the time of critical need); you should always assign an alternate to carry out your wishes, in case your first choice is unavailable.
  • Think about your preferences. What matters most to you in life, and in your quality of life? For example, what care would I want if I were in an irreversible coma? If I was unable to breathe on my own, and had little hope of getting better, what would I want the people caring for me to do? People with serious illnesses may want to be even more specific, and express their preferences about specific therapies like cardiopulmonary resuscitation (CPR).
  • Talk with your healthcare agent and their alternate about your preferences. Have a conversation with them about what you value in life, and how they could represent you if you can’t represent yourself.
  • Consider writing down your thoughts and preferences as an “advance-care plan.” While such a document in Massachusetts is not legally binding, it can be extremely helpful to your healthcare agent, your family, and those caring for you.
  • Let family members and healthcare providers know who your healthcare agent and your alternate agent are. Provide them with copies of documents, and keep them in an accessible, safe place in your home (not in a home safe or a lawyer’s office). Let your family know where to find them. Make sure that they are in your electronic health record. Your doctor’s office will tell you how to do that.
  • Since our lives and preferences change, it is important to review and update your choice of healthcare agent and advance directive regularly, especially after significant life events or changes in your medical status.
  • There are simple forms, online programs, and getting-started tips sponsored by Honoring Choices MA (honoringchoicesmass.com) and the Conversation Project (theconversationproject.org) that make the entire process easy.

Some of us might benefit from having a MOLST form. For those individuals who have a serious or advanced illness, and may be nearing the end of life, a MOLST form is often used and recommended. It stands for “medical orders for life-sustaining treatment.” The purpose of a MOLST form is to ensure a patient’s wishes regarding life-sustaining treatments are clearly documented and preferences are honored by healthcare providers. It is a legal document that is completed and signed by a patient (or healthcare agent, if unable to sign) and their physician, PA, or NP. This form is particularly valuable in emergency situations, when EMTs, for example, are called, and treatment preferences per the MOLST can be followed. Most people do not need a MOLST.

April 16 is National Healthcare Decisions Day. It is a good reminder to review your health agent choices and advance-care directives, if you have them, and to choose a healthcare agent if you have not. Perhaps you can help start a conversation that will help others by hosting a get-together in your place of worship, where congregants discuss and complete forms together, or host a special group or party over a meal or drinks to encourage conversations in the comfort of breaking bread together and breaking down barriers. You can arrange the same sort of special time with your family members.

When you make your wishes known, you help others as well as yourself. The peace of mind that results from important conversations helps to reduce family stress by clearly outlining an individual’s wishes, improves mental and social well-being of patients, and relieves loved ones of the burden of making difficult medical decisions on their behalf.

Hospice and Palliative Care of Martha’s Vineyard is available to facilitate advance-care planning, and provide forms to complete an advance-care plan. We are also available to make a presentation to a community group. We can be reached by calling our office at 508-693-0189. Our organization is a proud partner of Honoring Choices of Massachusetts. Healthy Aging M.V. (hamv.org) and your local Council on Aging are also good sources of information and help.

Cathy Wozniak is executive director of Hospice and Palliative Care of Martha’s Vineyard. Bob Laskowski is board chair of Healthy Aging M.V.