It's an unfortunate aspect of our political discourse that sensitive issues like end-of-life care sometimes get distorted by the media, demagogic politicians or special interest groups. Even so, no matter your age or state of health, it's important to think about how you'd like to be treated if you become ill, particularly if you lose the capacity to make your own decisions. To that end, a living will is an essential part of any health care plan.
In this article, we'll take a look at 10 steps to creating a living will, which is one of several types of advance directives -- legally binding documents that represent your wishes regarding your medical care. In the process, we'll go over some of the decisions you might have to make and where to turn to for help.
In April 2010, a study published in the New England Journal of Medicine found that senior citizens who had created a living will were much more likely to receive medical treatment in line with their requests [source: Silveira, et al]. Moreover, the study found, many subjects who had living wills specified something less than full care, should they become incapacitated: They wanted not be resuscitated or to receive only such care as would make them more comfortable, in what could be their final hours. To that end, these patients succeeded in making their desires clearly and legally defined, avoiding unnecessary or unwanted procedures. Without an agreement in place such as a living will, doctors are obligated by their ethical standards to perform all possible procedures to prolong a patient's life.
It's important to also keep in mind how much medicine and end-of-life care has changed in recent decades. Rather than dying at home, most gravely ill people now spend their last days in hospitals (or in hospices and similar institutions), often after days or weeks of medical care [source: Public Agenda]. In that event, a living will ensures that a patient's wishes are respected. The document also lets family and friends spend the remaining time with their loved ones secure in the knowledge that medical decisions have been predetermined, and that they won't have to intuit what the person might have wanted.
So you've decided to make a living will. What should it contain? Your living will should contain statements both general and specific about your choices for medical care. For example, you may write that you want only procedures or treatments that will make you more comfortable and not anything that would prolong your life at the cost of inflicting pain. Furthermore, you may decide that you don't want to be subjected to certain procedures if you are in an irreversible condition, such as a persistent vegetative state.
Living wills often contain lists of procedures that you would and would not want performed. These lists should be made after consultation with your family members, doctors and any other experts you wish to consult. Your preferences may vary, depending on your wishes and beliefs and on your pre-existing medical conditions. You may decide that you would not mind a feeding tube but that a ventilator is a bridge too far; or that you'd like antibiotics but don't want to be resuscitated. A frequent question asked in this process is, under what conditions would you want to be alive?
While difficult, these sorts of choices can be particularly important if you're suffering from a terminal condition. They can help make certain that you or your loved ones' last days are spent as comfortable as possible.
A health care proxy can go by many names: power of attorney, health care agent, guardian, surrogate and so forth. All of these names are reflective of the chief responsibility of a health care proxy: looking out for a patient's interests. By designating a trusted friend or family member as your health care proxy, you are entrusting this person with the power to make decisions on your behalf and the responsibility to make sure your living will is followed.
Choosing a health care proxy is a sensitive matter, and some people decide to turn to a friend rather than a family member, based on the notion that it might be too emotional a responsibility for a spouse or sibling. In any case, make sure you discuss the issue with your potential proxy. Be certain he or she is willing to follow your wishes absolutely, even if the person disagrees with you about them.
Depending on the laws in your state and your particular arrangement, you may have to draw up separate paperwork for your health care proxy or be able to designate him or her in your living will document. All such paperwork should be filed with your doctors and health care providers.
Should a patient be unable to make his or her own decisions -- for example, because of a coma -- a health care proxy becomes the legal decision-maker on his or her behalf. The proxy's decisions are not supposed to be predicated on his or her own beliefs. Rather they're a reflection of the expressed wishes of the person he or she is representing.
To that end, a health care proxy may have to devote considerable time to his or her duties. To put it bluntly: Dying can take a long time, or an apparently terminal condition can be subject to sudden reversals. A health care proxy should be prepared to be in and out of a hospital for days or weeks at a time. He or she will have to speak with doctors, receive updates about the patient's condition, consider avenues of treatment, ask doctors and specialists about the patient's illness and what options exist and, perhaps most importantly, make decisions about whether to agree to certain procedures.
All of this means that being a health care proxy is a grave responsibility. It can also be an emotionally difficult one, particularly if the proxy must deal with family members who don't share the opinions laid out in the advance directive. A health care proxy will have to be resolute, inquisitive, organized and capable of making tough decisions. Above all, he or she will have to put the patient's established wishes at the forefront of all decision making.
When considering a living will, it's important to research any relevant laws in your state. In most states, you must be of sound mind and aged 18 years or older in order for a living will to be valid when it is signed. Your living will may also have to be signed by witnesses testifying that you signed the document while of sound mind and not under coercion.
It's also important to consider state laws when drawing up your health care proxy documents. Depending on where you live, your health care proxy and advance directive requests may be part of the same form.
You may find all of the information you need about relevant state laws on the Internet, although a lawyer's services can be useful as well. On the next page, we'll consider some of the advantages of using a lawyer in drafting a living will, and we'll also consider why you may not need an attorney at all.
If you can afford the services of a lawyer, he or she can prove crucial in providing information about health care laws in your state and your corresponding rights. Consider going to a lawyer who has experience in these matters -- ideally someone whose expertise is health care law, elder law or estate matters.
A lawyer can ensure that your paperwork is in order and that your documents are valid. Your lawyer may have the power to notarize your documents or can arrange to find one for you; he or she is also a good person to entrust with up-to-date copies of your living will.
Despite the advantages of using a lawyer in writing a living will, their services aren't essential. Many legal and seniors websites offer free advice and sample living wills, which can often provide all the information you need to create your own advance directive.
A recurring problem for those who have living wills is that their health care providers or family members don't know that these documents exist. It's up to you to make sure your doctor has copies of all essential paperwork, including your living will. Consequently, you should make sure to file a copy with your doctor's office and, if you are checking into the hospital for a major procedure, bring an additional copy with you.
Keep a copy of your living will in a (ideally fireproof) safe at home, and make sure your health care proxy can access it if needed. If you have an alternate health care proxy, make sure he or she also has a copy.
You should also look into whether your state operates an online living will registry. Such a registry allows you to file your living will with the state department of health. It may also provide other services, such as stickers to put on your health insurance card and driver's license or a separate card to keep in your wallet. All of these efforts are in support of one thing: making sure that your health care wishes are honored.
One's family members can be a powerful support system in drafting a living will and dealing with other end-of-life issues. However, this is also a time when differences -- over health care, over when to "pull the plug," over how to treat certain medical conditions -- can be exposed. For example, many family members might want a seriously ill relative to pursue all possible treatment options, even when late-stage treatments are often not effective and may make one's final days less comfortable [source: Spitz].
Of course, this is your health and ultimately your decision, so if you are concerned about the role of certain family members, it may be wise to make sure your plans are in writing -- not only in your living will but also in a letter explaining your decision to your family member. Such records help to show that you made decisions regarding your medical care and your health care proxy while still in a lucid state of mind.
As its name implies, a living will is not a static document. Just as your life and health status are subject to change, so will this document be. The American Bar Association's Commission on Law and Aging recommends reassessing your living will based on "Five D's" [source: ABA]:
- Decade (aging)
- Death (of a loved one)
You should also periodically reassess what your own wishes are. Perhaps you saw a friend suffer through an extended, painful illness before passing away; or you have learned more about the benefits of hospice care. Such experiences may change your mind about which procedures you're comfortable with receiving or how you'd want to spend your last days and weeks in the case of a terminal illness.
We've gone over some of the resources you should consult when making a living will -- friends, family, people who have experienced severe illnesses, lawyers, and even legal Web sites. But your doctor can play a key role in discussions that lead to the creation of a living will. It is your doctor who can speak with you about what might be expected from a particular diagnosis, or how to alter your living will to reflect your changing medical condition.
Your doctor can also refer you to specialists or tell you if an ongoing treatment plan no longer seems viable. He or she can advise you on how to discuss these complex issues with your family. Some doctors even provide a form on which you can fill out the details of your living will.
For more information on living wills, end-of-life care and other related topics, take a look at the links on the next page.
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More Great Links
- AARP Washington. "Online Living Will Registry: Register Now for Peace of Mind." AARP. March 19, 2010 (Accessed 9/18/2010). http://www.aarp.org/technology/innovations/info-03-2010/online-living-will.html
- ABA. "Consumer's Tool Kit for Health Care Advance Planning." (Accessed 9/18/2010). http://www.abanet.org/aging/toolkit/
- American Bar Association. "Whom should I select as my agent or proxy for health decisions?" FindLaw. 2004. (Accessed 9/18/2010). http://public.findlaw.com/abaflg/flg-16-7g-11.html
- Caring Info. "Storing Your Advance Directives." (Accessed 9/18/2010). http://www.caringinfo.org/index.cfm?page=817
- Caring Info. "What to Do If Family Members Disagree." (Accessed 9/18/2010). http://www.caringinfo.org/PlanningAhead/AdvanceCarePlanning/WhatToDoIfFamilyMembersDisagree.htm
- Caring Info. "How to Talk You're your Health Care Providers." (Accessed 9/18/2010). http://www.caringinfo.org/PlanningAhead/AdvanceCarePlanning/HowToTalkWithYourHealthcareProviders.htm
- Chen, Pauline W. "Making Your Wishes Known at the End of Life." April 15, 2010. (Accessed 9/18/2010). http://www.nytimes.com/2010/04/16/health/15chen.html
- Family Doctor. "Advance Directives and Do Not Resuscitate Orders." January 2009. (Accessed 9/18/2010). http://familydoctor.org/online/famdocen/home/pat-advocacy/endoflife/003.html
- FindLaw. "Sample Living Will Form." (Accessed 9/18/2010). http://estate.findlaw.com/estate-planning/living-wills/le23_9_1.html
- Forestieri, Claudia. "Advance Directives." AARP. Summer 2009. (Accessed 9/18/2010). http://www.aarp.org/health/doctors-hospitals/info-07-2009/advance_directives.html
- Public Agenda. "Right to Die." (Accessed 9/18/2010). http://www.publicagenda.org/articles/right-die
- Silveira, Maria J; Kim, Scott Y.H.; Langa, Kenneth M. " Advance Directives and Outcomes of Surrogate Decision Making before Death." New England Journal of Medicine. April 1, 2010. (Accessed 9/18/2010). http://www.nejm.org/doi/full/10.1056/NEJMsa0907901
- Spitz, Sarah. "End of Life Care: Hospice and Palliative Choices." KCRW. Aug. 24, 2010. (Accessed 9/18/2010). http://www.kcrw.com/etc/programs/pc/pc100824end_of_life_care_hos