Why a Living Will Isn’t Enough
Every few years the media latches on to a case of someone in a coma or similar medical distress. The family members and doctors don’t agree on what the next step should be, generating the conflict, controversy, and story. The lesson from the media always is: Be sure you have a living will.
The answer isn’t that simple. Often in these situations there is a living will. It isn’t enough.
Medical care documents are essential to an estate plan. I’ve even recommended that these documents be finalized while decisions about other parts of the estate plan still are deliberated. But you need to consider more than one document. Let’s take a look at the choices.
Living wills. Most states now authorize living wills and adopted sample forms that are easy to use. Often you can download one from your state’s web site. The approved living will forms for each state also are located 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, it isn’t so simple to put into practice. There are areas of possible disagreement and uncertainty.
Often, it can’t be said with certainty that someone has no hope of improvement or is terminally ill. There also is debate over whether feeding and hydration tubes (and other forms of care) are artificial means of life support or means of providing comfort.
The response of estate planners is to 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 decision to be made in each circumstance. You might have seen an example on Seinfeld.
Even this approach has drawbacks. Technology and medical knowledge change. The situation that was hopeless five years ago might not be 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. Finally, there still can be disagreements over the facts and certainty of the prognosis.
Another caution about living wills is some studies found they simply aren’t effective. Treating doctors and nurses might 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, on other hand, might want to draft a living will that says you want care in all but a few circumstances.
Health care power of attorney. A living will is fine, but because of its limits, everyone should appoint a health care proxy instead of or in addition to a living will. The appointment is made through a health care power of attorney or proxy. The name of the document varies from state to state.
A health care proxy gives one or more people the authority to make medical decisions when you are unable to. 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, travels a lot, or doesn’t have some flexibility. You ease the burden on others by naming more than one person. 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 also set the default decision with the voting rules. For example, you can say the default is to provide treatment unless all the proxies agree to withhold it.
The power of attorney can be supplemented 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.
Do not resuscitate/hospitalize. DNR and DNH orders for older patients are quite common, especially for those who are frail. Research indicates CPR rarely helps these individuals recover and instead makes their passings violent rather than peaceful. The reasoning for the DNH is that at some point people do not benefit from hospitalization for every new ailment or development. Instead, they should be kept comfortable wherever they are residing.
Someone who agrees with those sentiments can decline in advance CPR or hospitalization or both.
HIPAA Authorization. This simple document authorizes medical providers to release medical information about you to the named persons without violating the privacy provisions of the Health Insurance Portability and Accountability Act of 1996. It can be incorporated into the other forms. Many medical providers won’t even give details to spouses and family members now without the authorization.
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.
Your documents also can include non-medical instructions. You can give instructions regarding music, grooming, fresh flowers, and other aspects of your environment you’d like when you are receiving care.
Of course, all of your doctors should have a copy of any documents you execute and know how to get in touch with the proxies named. Each of the proxies should have a copy. Some family members also should have copies.
Making Health Directives Work
You can take steps to increase the probability that your instructions will be followed.
* Put it all in one document. A complete plan involves at least a health care power of attorney and living will. You also can include other instructions discussed above. Consider compiling all this information in one document instead of in separate documents.
Sample all-in-one documents are available, as Five Wishes, from Aging with Dignity (www.agingwithdignity.org; 888-5-WISHES) and some other sites. These organizations charge modest fees for the documents and say they have versions for each state.
* Be sure it is valid. Some states require two witnesses for the documents to be valid. Others require three witnesses. A few require the documents to be notarized. Be sure the documents are valid in your state.
* Don’t forget about travel. The law of wherever you are when health care is needed determines whether a document is valid. If you regularly live in or travel to other states, produce a document that is valid in the most restrictive state or prepare different documents that meet the requirements of different states.
* Don’t keep it to yourself. To reduce disagreements and misunderstandings among those around you, it makes a lot of sense to discuss details with the people you designate as proxies and also general beliefs with your loved ones. Remember that a document, no matter how detailed, can’t cover every possible situation. Your proxies need to know your general beliefs so they can make decisions in specific circumstances that reflect your wishes.
* Consult different sources. Web sites and books have sample forms. Estate planning attorneys each has his or her own forms developed over the years based on personal experience and philosophy. Consult several sources to get a taste of the available options.
Though I list a number of sources of forms and documents, I don’t recommend that most people complete this on their own. This is part of an estate plan and should be finalized with the guidance of your estate planner.
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.
Keep in mind that most states allow a doctor or hospital to refuse to follow the instructions for reasons of conscience.
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 a former chaplain at a nursing home. The booklet discusses the pros and cons of different choices and includes summaries of the scientific research on different treatments. You probably could benefit from Hard Choices for Loving People, by Hank Dunn (A&A Publishers, Inc., 43608 Habitat, Circle, Lansdowne, VA 20176-8254; $6.00; 855-232-4365; Fax: 571-333-0167); www.hardchoices.com.