Planning For the Future

The Importance of Advance Directives

By Christine Norris

Co-authored by Gary L. Stein, Esq., MSW and Susan Wells Courtney

How one's life will progress over the years is a mystery to us all. Few things in life are guaranteed, but many of us try to make an educated guess as to how long we might be here and how to best plan for our future. Medical decisions are important concerns as we age, and making the decisions for your future early on, while still healthy (both mentally and physically), will help to see that things go according to your wishes when you are no longer able to make such decisions.

Putting plans together in advance is a good idea for anyone (age 18 or over), since no one knows what tomorrow may bring; the same holds true for people with a chronic condition or illness, such as MS, whose course is unpredictable. MS is especially challenging, since the disease often appears when individuals are young, usually in their 20s and 30s — which is a difficult age for many to plan their medical decisions for a time so far in the future.

This article presents some of the urgent medical issues that everyone should be addressing — not just those with MS — in order to make decisions that are important to each person and his or her family. Planning for the future through "advance directives" takes the burden away from family members who would otherwise need to make these same difficult decisions themselves, should a loved one be unable to make such choices at a later time.

Advance Directives

While planning for today's and tomorrow's healthcare needs, most people will make sure their healthcare insurance, long-term care insurance, disability insurance, and life insurance policies are all in place. But in addition to these important plans, people also need to look at their end-of-life healthcare choices and prepare for these in advance.

Known as "advance directives," these written instructions provide specific directions to doctors and family regarding a person's end-of-life choices in advance, should this person become unable to make these decisions on his or her own when needed. While advance directives can vary from state to state, in general, advance directives typically include appointing a healthcare representative or proxy as well as creating a "living will." (Please note that some sources refer to a living will as encompassing both instruction as well as the appointment of a healthcare representative. In this article, we have kept the two separated, as it appears with many state-regulated forms.)

Appointing a Healthcare Representative

Referred to as a Medical Power of Attorney, Durable Power of Attorney for healthcare, or a healthcare proxy, this document allows an individual to name a trusted person as his or her healthcare representative (also known as a healthcare agent, healthcare surrogate, medical attorney-in-fact, or healthcare proxy). A healthcare representative makes medical care decisions when his or her family member, friend, or associate is dying, unconscious, incoherent, or unable to communicate. The purpose of a healthcare representative (who is often a spouse, partner, family member, or close friend) is to guide family members and physicians in deciding to use or refuse specific medical treatments when the patient can no longer communicate or make informed decisions.

When individuals do not appoint a healthcare representative, some states will create a list or hierarchy of individuals close to the patient to serve as decision makers (a person acting in this role is sometimes referred to as the "surrogate") — dictating which individual would be asked first. For example, the list might begin with spouse, then list parent, followed by an adult sibling, and so on, until an appropriate healthcare representative may be selected. Next-of-kin is not always top on certain state's lists. Individuals who do not name a healthcare representative in advance (when able) are risking that someone less reliable or less familiar with their wishes will make decisions on their behalf, should they become too ill to think clearly and/or communicate.

When selecting a person to be your healthcare representative, choosing someone who is assertive and well spoken, as well as someone who will be comfortable acting as advocate on your behalf, is recommended. A person cannot just be named as your healthcare representative; he or she needs to agree to the position. Since the role of healthcare representative can be time-consuming and emotionally draining, the person you select should be given the right to decline from taking on the responsibility. The healthcare representative must be comfortable in the role in order to be effective on the patient's behalf.

What's Involved with Being a Healthcare Representative

The healthcare representative plays an important role in end-of-life care. Generally, the law requires the healthcare representative to make the same decisions that the person they're representing would have made, if possible. To do this, the healthcare representative should fully understand and respect the person's overall values as well as his or her religious and moral beliefs. If a particular decision is not known, the healthcare representative should make the decision based on what is known about the patient's preference for care, versus the representative's personal interests or desires. The healthcare representative may choose to discuss different decisions with the healthcare team and family members for additional input.

The healthcare representative is authorized to make all medical decisions (not just end-of-life decisions), when the patient is physically or mentally incapacitated. This includes arranging for aggressive palliative care (pain treatment), if the care recipient needs this type of assistance.

The healthcare representative's job can be quite demanding. As an advocate, he or she will need to meet often with physicians to obtain clear information on the care recipient's diagnosis (what is wrong with the patient), prognosis (what will probably happen to the patient because of the disease or injury), and the goals of care (the desired outcomes in light of the patient's prognosis).

As an advocate, the healthcare representative will be required to ask questions regarding treatment in order to make the best decisions possible. This is not always easy, and the healthcare representative will need to continue to ask questions and to speak up on the patient's behalf to ensure that he or she is receiving the proper care. The healthcare representative may benefit from the help of a social worker, patient representative, or nurse, especially if the physicians do not provide all necessary information.

Creating a Living Will

Family and friends may think that they know what's best for their loved ones. But does anyone really know the choices that another would make at a time when various medical treatments could either be used to prolong life or withheld to allow for a more natural death? End-of-life choices are very personal and require careful planning to ensure that they are carried out in accordance with the patient's wishes. An advance directive known as a living will provides specific instructions for a person's end-of-life choices.

Also known as a "directive to physicians," a "healthcare declaration," a "medical directive," or an "instruction directive," a living will may specify a range of instructions. These may include such instructions as a desire to die at home with hospice care, or a request to withhold tube feeding. A living will goes into effect when this person can no longer make his or her own choices (when he or she is terminally ill, permanently unconscious, or dying).

A living will is best prepared before a person is seriously ill, but may be drawn up when a person is diagnosed with a terminal illness or becomes permanently disabled. Many young and/or healthy people are also discovering the importance of preparing such a document in advance.

Additionally, without evidence of a patient's wishes, medical professionals may continue life-prolonging treatment. This is not only because they're trained to do so, but also to protect them from any liability.

Individuals are advised to include instruction for their wishes regarding palliative care (which includes pain management and hospice care), as well as other end-of-life issues in a living will. Some people may want to discuss their end-of-life wishes with a spiritual or religious advisor.

When you decide what to include in your living will, sharing this information with close family members and your doctor is important. Even if everyone doesn't agree with the decisions, they must be encouraged to respect those decisions. Also, by discussing these delicate matters in advance, disagreements among family members later on may be avoided.

Do-Not-Resuscitate Order

According to the American Academy of Family Physicians' website at www.familydoctor.org, a do-not-resuscitate (DNR) order is a request not to have cardiopulmonary resuscitation (CPR) if your heart stops or if you stop breathing. Patients who are most likely not to benefit from CPR are those with advanced terminal conditions.

DNR orders are written by doctors. Those who would like to have a DNR order in place are advised to discuss this with their doctor, either at the physician's office or at the hospital. Anyone wishing to have a DNR at home (an "out-of-hospital" DNR), should also speak with their physician. An out-of-hospital DNR order must be signed by a physician to be valid and respected by emergency medical service (EMS) professionals.

For an example of New Jersey's out-of-hospital DNR order, readers may visit the New Jersey Health Decisions' website at www.njhealthdecisions.org and select "out-of-hospital — do not resuscitate orders" from the options on the left side. Readers without internet access may call the organization at (973) 857-5552.

Validating, Distributing, and Changing Advance Directives

Different states have different requirements for making the documents legally binding; these often require signatures from two witnesses or the signature from a notary. This is explained on the sample forms for each state.

Once your advance directives' documents have been completed and signed, several copies of these documents will need to be made and given to:

• the appointed healthcare representative
• the care recipient's physician
• the hospital
• the long-term care facility
• the care recipient's lawyer (if involved in one's care)

Some individuals may choose to share a copy with another family member or their spiritual or religious advisor.

Additionally, the healthcare representative should keep the originals in a safety deposit box and also keep one copy at home where it's easy to find. Of course, the patient should have a set of copies kept in a safe, easy-to-find location as well. As mentioned in the earlier listing, if the patient goes to the hospital or to a long-term care facility, copies should be given to the appropriate staff and placed in the patient's medical records.

Gary L. Stein, Esq., MSW, executive director of New Jersey Health Decisions, explains that advance directives (Medical Power of Attorney, living will, etc.) may be cancelled or replaced with new ones at any time simply by informing all of those given the previous documents and destroying the old documents. All individuals with the previous copies will need to be given copies of the new documents. (While this is the case in most states, readers are advised to confirm what laws apply in their own state; these are usually noted with the forms for the individual state — mentioned later.)

For many individuals, knowing that they may change their advance directives is very important. One's condition or outlook, as well as medical treatments available, may change over the years.

Working with a Lawyer

Gary Stein notes that forms for advance directives in each state are usually self-explanatory and most families do not need to consult a lawyer unless one anticipates problems with their family, medical team, or healthcare facility. For those who choose to use a lawyer, consulting one who is well versed in elder or healthcare law is recommended. To find one locally, individuals may contact their local Area Agency on Aging (AAA), which may be found in the blue pages of the telephone book under Human Services. Such lawyers may also be found by visiting the National Academy of Elder Law Attorneys website at www.naela.org, which lists a registry of specialists in elder law.

If you need a lawyer but are unable to afford the legal costs of preparing advance directives, some elder law attorneys work at reduced rates for seniors or persons with disabilities unable to pay their usual fees. Call your local AAA for information and referrals. AARP also offers its members and their spouses reduced fees for work conducted by attorneys specializing in elder law, via its Legal Services Network at www.aarp.org/lsn. The Consumers' Guide to Legal Help on the internet (sponsored by the American Bar Association) also has resources for obtaining reliable legal assistance at www.abanet.org/legalservices/findlegalhelp/ home.cfm.

Resources for Forms and Additional Information

Forms for healthcare representatives and living wills are available through the internet and through various agencies. Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO), is a national consumer engagement initiative that seeks to improve care at the end of life. by visiting their website at www.caringinfo.org, individuals may download and print their state's advance directives (including forms to appoint a healthcare representative and make a living will). This website provides information on state-specific guidelines and sample forms for setting up advance directives.

While these forms for advance directives may have different names in different states, their overall purpose remains the same — in general, to appoint a healthcare representative and create a living will. The website mentioned lists each state separately, and once selected, the documents may be downloaded to your computer, along with complete instructions for filling them out and distributing them in accordance with state law.

Supported by a grant from The Robert Wood Johnson Foundation, Caring Connections provides free information on end-of-life care. In addition to advance care planning, they also offer free resources on caregiving, pain, financial issues, hospice and palliative care, as well as grief and loss. Individuals may also contact NHPCO for information and free publications by calling (800) 658-8898.

The American Bar Association (at www.abanet.org) has published a guide entitled, The Consumer's Tool Kit for Advance Health Care Planning. This helpful publication assists with creating advance directives and provides information on such topics as: how to select your healthcare representative, personal priorities and spiritual values, conversational scripts to promote family discussion of advance directives, guide for healthcare representatives, and additional resources. This guide may be downloaded and printed by going to www.abanet.org/ elderly/toolkit/home.html. The phone number for the American Bar Association's service center is (800) 285-2221.

The Division of Bioethics at the Montefiore Medical Center/Albert Einstein College of Medicine has a guide entitled, Making Health Care Decisions for Others: A Guide to Being a Health Care Proxy or Surrogate. This guide may be found by going to http://eph.aecom.yu.edu/web/division_details.aspx?id=3 and clicking on the guide name at the lower portion of the page. If unable to access the guide, a copy may be obtained from MSAA by calling (800) 532-7667.

Another good resource is AARP's website at www.aarp.com. End-of-life information may be found by going to the section labeled "Family, Home and Legal" and then selecting "End of Life" from the options on the left. AARP may also be contacted by calling (888) 687-2277.

The Eldercare locator may be found at www.eldercare.gov, or you may also reach them by calling (800) 677-1116. Here you can find state and county area agencies on aging. The site also offers resource information on reputable lawyers in your area that may charge lower fees or work pro bono (at no charge) to help seniors or people with disabilities to draft living wills. Legal advice may also be found through the National Academy of Elder Law Attorneys at www.naela.org or by calling (520) 881-4005.

Conclusion

Gary Stein states, "People may recall highly publicized cases, such as those of Karen Ann Quinlan from New Jersey or Terri Schiavo from Florida, who were kept alive for extended periods of time through artificial means. Many people in this type of condition would not want to live indefinitely on breathing machines or through tube feeding. This preference has been supported through many public opinion polls. Additionally, many may worry that disagreements can tear their loved ones apart.

"This scenario may be avoided by planning ahead. I cannot overstate the importance of appointing a trusted family member or friend to advocate on your behalf. In addition, expressing your wishes for your care and then documenting these wishes in your advance directives, best ensures that you get the kind of care you want."

About the Author

A former editor of The Motivator, Christine Norris is now a freelance writer specializing in health and wellness issues.

Helpful Resources

Heffelbower, Ruth, D. What Happens After We're Gone? Estate and Life Planning for Families in Which a Dependent Member Has a Disability or Mental Illness. Mennonite Mutual Aid, Advocacy, and Education Resources, 1996.

Kalb, Rosalind, C. Ph.D. Multiple Sclerosis: The Questions You Have. The Answers You Need. Demos Medical Publishing, LLC, 2004.

Palermo, Michael. AARP Crash Course in Estate Planning: The Essential Guide to Wills, Trusts, and Your Personal Legacy. Sterling Publishing, 2004.

Pond, Jonathan. Your Money Matters: 21 Tips for Achieving Financial Security in the 21st Century, The Berkley Publishing Group, 1999.

Helpful Websites for More Information

• www.americangeriatrics.org/education/forum
• www.bazelon.org
• www.kidney.org
• www.medicalalert.org
• www.neriscience.com
• www.uslivingwillregistry.com
• www.caringinfo.org

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