Your Advance Directive: A Gift to Your Loved Ones
The holiday season is for most people an opportunity to celebrate family, friends, and life, so it may seem a strange time to talk about end-of-life planning. However, as the year draws to a close and people gather with loved ones from near and far, it may in fact be the ideal time for many to begin thinking about and discussing their wishes for medical treatment in the event of a sudden decline in health. For the elderly especially, but also for all other adults, it is important to take the time to think through your wishes and make those wishes known to your closest friends and relatives, who may one day be called on to make decisions for you. By formally and legally recording those wishes in an advance directive, you provide your loved ones with a precious gift: a road map that will help to direct the medical decisions they make on your behalf and a key to maintaining peace and stability within your family during an emotionally difficult time.
Advance directives are legal documents that describe your wishes regarding your future medical care decisions. They take different forms in different states, but generally they include information about who will make decisions for you, under what circumstances, and what end of life treatment or lack thereof you want. In Tennessee we use several different advance directives. A complete advance directive in Tennessee actually consists of three different documents: a living will, an advance care plan, and a power of attorney for health care.
A living will, which is recognized in all states, is effective only if you are in a terminal condition or persistent vegetative state from which you are not likely to recover no matter what is done. The living will states whether or not you would wish to have treatment withdrawn to permit a natural death free from pain in such a situation. In addition, the living will can authorize the use or non-use of a feeding tube or other artificial means of providing nutrition and hydration.
An advance care plan permits you to nominate a health care agent and to clearly describe what conditions offer an acceptable quality of life and which conditions you would find unacceptable. In addition to terminal illness and coma, which are covered by a living will, an advance care plan also addresses states of permanent confusion (e.g. dementia) and permanent dependence in all activities of daily living (e.g. paralysis). For all of these conditions, the advance care plan permits you to choose which specific treatments to authorize or withhold, including CPR, life support, tube feeding, and newly developed procedures. The advance care plan also addresses your burial or cremation preferences and hospice preferences, and it offers space for you to state your additional wishes.
A durable health care power of attorney (HCPOA) identifies your chosen health care agents and defines their scope of authority. While the advance care plan allows for nomination of agents, the form provides no detail about their rights and limitations. The durable HCPOA offers broader authority over personal issues and is not limited to simply medical decisions. The HCPOA tends to be a more powerful and more flexible document because it appoints your advocate and provides instructions and authority for situations often encountered by people with progressive or chronic illnesses, including (but not limited to) choosing a place of residence, hiring and firing caregivers and physicians, access to private health information, consenting to medical treatment, protecting rights to privacy, making funeral arrangements and anatomical gifts, and taking court action if needed.
All three of these documents comprise your advance directive. Though they all deal with similar issues, each one serves a discrete function and is a necessary piece of your plan for the future. It is important to ensure that they are compatible with one another and give a clear, unified picture of how you wish to be treated (or not treated) in particular circumstances. Remember, your family may one day look to these documents to help them make the right decisions on your behalf, so you should do everything necessary to avoid ambiguity or conflicting statements among your documents.
Recognizing the need for an advance directive is common sense for most people; most of us do not wish to place the emotional and moral burden of making health tough healthcare decisions on our loved ones. Despite this, various studies report that only 20 to 30 percent of people nationwide have an advance directive in place. This may be due to lack of understanding of what an advance directive is and how it is used, but it is more likely because most people find it extremely difficult to think seriously about end-of-life issues, much less talk to their loved ones about such situations. Most of us prefer to put off those conversations until we are already in the midst of a crisis. The problem is that in a crisis situation we may be unable to communicate our wishes to our loved ones – and the crisis may come at any time, at any age, without warning. Take, for example, the infamous Terri Schaivo case, in which a very young woman was suddenly rendered unable to communicate her wants and needs to her husband and parents, setting off a very public and stressful court battle that lasted fifteen years. Imagine how different it would have been for her loved ones if she had, while in good health, prepared a package of legal documents – an advance directive – making clear to her family and physicians exactly what kind of medical treatment she would want and what treatment she would refuse in just such a situation.
There are many resources for helping you and your family to start thinking and talking about end-of-life issues. The Conversation Project offers starter kits and online resources to help broach this difficult subject. A similar nonprofit organization, DeathWise, offers Wise Conversation workshops in some states and provides step-by-step instructions for learning about and planning for end-of-life issues. Engage With Grace is another conversation-starting movement which asks all adults to answer five questions about their medical wishes and the extent of their legal preparation to make sure those wishes are met. Many other educational and conversation-generating resources are available on the National Healthcare Decisions Day website.
Legal and medical professionals also have a significant role to play in helping individuals and families to start talking about advance directives. The March 5th NPR story “The Town Where Everyone Talks About Death” illustrates the power of professionals to overcome taboo topics and help people get the care and planning assistance they need. Thanks to the efforts of medical ethicist Bud Hammes, 96 percent of people in La Crosse, Wisconsin have an advance directive in place when they die – leaps and bounds beyond the national average of 20 to 30 percent. The majority of people in La Crosse enjoy the peace of mind of knowing that their medical wishes will be fulfilled even if they are not able to speak for themselves – and they also rest easy knowing that if they are called on to make difficult medical decisions for their loved one, they will be guided by that person’s instructions for his or her own care.
Throughout the holidays, as you gather with those you love, take stock of the legal documents you have in place and think about the ones you have yet to complete. Consider how best to guide your family and friends in the event that they are asked to make medical decisions for you, and think about ways to open the lines of conversation. Talk to a legal professional to help you get started on an advance directive that works with your other planning documents and is recognized by your state. During this time of gift-giving, ask yourself: what greater gift can you bestow on those you love than peace of mind?
