The case of Terri Schiavo captured most of the nation’s attention and spurred greater interest in Living Wills and related estate planning tools. For years at Retirement Watch we’ve insisted that health care documents are an essential part of an estate plan. We’ve even stated that these documents should be prepared while decisions about other parts of the estate plan still are being deliberated.
But the recent debate clouded some of the issues about the different health care decision options. Let’s review the choices.
Do not resuscitate/hospitalize. DNR and DNH orders for older patients are quite common, especially those in frail condition. Research indicates CPR rarely helps these individuals recover and instead ensures that their passings are violent rather than peaceful. The conclusion some draw is that at some point patients do not benefit from hospitalization for every new ailment or development. Instead, they should be kept comfortable at home or in the nursing home in which they reside.
Someone who agrees with those sentiments can decline in advance CPR or hospitalization or both.
Living wills. These documents get the most attention. Most states now have laws authorizing living wills and have adopted sample forms that are easy to use. Often you can download one from your state’s web site and complete it at home. The approved living will forms for each state are located on the web at www.caringinfo.org.
A living will in its basic form states whether or not you want certain levels of care in certain circumstances. The basic, traditional living will states: “If I have a terminal condition, and there is no hope of recovery, I do not want my life prolonged by artificial means.”
Though a simple idea, the living will is not simple in practice. There are areas of possible disagreement.
For example, family members and doctors disagreed over whether Terri Schiavo had no hope of improvement or was terminally ill. There even is debate over whether feeding and hydration tubes (and other forms of care) are artificial means of life support.
Because simple living wills can be difficult to apply in many circumstances, estate planners often draw up custom living wills. With clients they work through detailed questionnaires, sometimes totaling sixty pages or more. The questionnaires give different scenarios. The client decides the treatment to be given in each circumstance.
Even this approach has problems. Technology and medical knowledge change. The situation that was hopeless five years ago might not be hopeless today. Also, we don’t really know what a person is feeling or experiencing in all these circumstances. Of course, even a questionnaire of sixty pages or more cannot cover every possible scenario. You could end up in a situation that is not directly covered in the living will. Finally, there still can be disagreements over the facts. There might not be a medical consensus over whether a patient is terminal, has no chance of improvement, or is in a vegetative state.
In addition, studies have shown that living wills simply aren’t effective. Often, the treating doctors and nurses do not see the documents until after treatment has been administered. Some ignore the documents because they are afraid of lawsuits. At other times, doctors interpret the documents as approving treatment when others have a different interpretation. Finally, if one or more key family members ask for treatment, doctors normally comply even if the living will says otherwise.
Often unsaid is that the intent of most living wills is to stop or remove care. You might want to draft a living will that says you want care in all or almost all circumstances.
Health care proxy. Because of the deficiencies with living wills, I recommend that everyone appoint a health care proxy. This appointment usually is done through a health care power of attorney, though the name of the document varies from state to state.
A health care proxy gives someone the authority to make medical decisions when you are unable to. The power can be conferred on one or more people. The persons with the power of attorney need to be available to the care providers, so you might not want to name someone who lives a sizeable distance from you, who travels a lot, or who is otherwise difficult to locate. You ease the burden by naming more than one person. This might also protect you. For example, you can name three people and require that treatment be withheld only if they all agree. Some people appoint only family members. Others believe that the decision can be less emotional if at least one trusted non-family member is named.
You can supplement the power of attorney with a living will or other document that expresses your philosophy and wishes under at least some circumstances. The combination of a power of attorney and living will often is called an advanced health care directive. The additional document provides some guidance to the people holding the health care power of attorney.
Your documents also can include non-medical instructions. You can give instructions regarding music, grooming, fresh flowers, and other aspects of your environment.
Of course, all of your doctors should have a copy of the health care power of attorney and know how to get in touch with your proxies. Each of the proxies should have a copy. Family members also should have a copy.
None of these tools provides a perfect solution. In most cases, difficult decisions will have to be made by loved ones. But you can ease the burden and provide a framework for making the decisions by providing these documents. Keep in mind that most states allow a doctor or hospital to refuse to follow the instructions for reasons of conscience.
You need two other documents. One, which can be incorporated into the health care power of attorney, is the HIPAA authorization. This authorizes medical providers to release information to the named persons without violating the privacy provisions of the Health Insurance Portability and Accountability Act of 1996. The other document is a financial power of attorney so that someone can manage your finances when you are unable to.
If you spend time in more than one state, check with an attorney to be sure that your documents will be effective in all states involved.
Most of us need help in thinking about the difficult treatment decisions, whether for ourselves or others. A useful guide is a booklet written by the former chaplain at the nursing home my wife runs. The booklet discusses the pros and cons of different choices and includes summaries of the scientific research of different treatments. You probably could benefit from Hard Choices for Loving People, by Hank Dunn (A&A Publishers, Inc., P.O. Box 1098, Herndon, VA 20172-1098; $4.00; 703-707-0169; Fax: 703-707-0174); www.hardchoices.com.