Client Education

Care Planning

Yes, You Should Plan for the End, Too

By: Denise Hamilton, Special to AccentCare

No one likes to think about his or her own mortality. But as new laws and medical breakthroughs redefine society and increase lifespan, preparing for your demise is one of the most important things you?l ever do.

Preparing for the end of life includes drawing up a will or trust to pass on financial assets, a living will to address medical treatment, a durable power of attorney for health care that authorizes a person to make medical decisions when you cannot, and even a funeral plan, which explains how you want to be buried, down to what songs you'd like sung at the service.

There are many reasons for addressing end-of-life issues while you still can. For starters, a detailed road map allows you to maintain control of your life toward its end and ensures that your desires will be followed and your legacy handed down according to your wishes.

Without such legally binding documents in place, people can fall victim to conflicting laws or feuding relatives, and their care can end up in the hands of someone who doesn't understand them or may not even have their best interest in mind.

"If you can? speak for yourself, who should be deciding?" asks Carol E. Sieger, director of legal affairs for the New York-based nonprofit organization Partnership for Caring. "In many states, there? not automatic authority to withdraw life support just because you are a spouse. You might have to go to court, appoint an attorney, spend thousands of dollars, and even then you might not get the right. If you want to give your family a great gift — one of the greatest — then fill out the paperwork and put these things in writing."

How to Have That Talk With Your Loved One

This is often easier said than done. For many, the first hurdle is how to talk to a loved one about this topic. Cultural background may play into a person? willingness to discuss death. For instance, experts say that in many Asian cultures it is considered bad luck to discuss end-of-life plans for fear it can actually hasten one? end. In Latin cultures, raising the issue may be construed as giving up hope.

"White, middle-class America is more likely to want to do something like this than almost any other group," says Dr. Leslie Blackhall, medical director of Assisted Home Hospice, a Thousand Oaks, Calif., health-care provider that has published a study on the topic in the Journal of the American Medical Association.

"It? threatening because people are afraid of their emotions and their mortality," warns Blackhall. Nonetheless, she suggests raising the topic this way: "Mom, have you ever thought about doing this (drawing up a will, a living will, etc.)? I have one, and the doctor thought it would be a good thing to do, especially in case you get sick."

For those who are already sick, Blackhall recommends another tack. "If someone tells me they're going to get better, I willl say, I'll, that's great; that's Plan A, and I'd really hoping that? what will happen. But maybe we should be prepared just in case things don? go as well as we had hoped. And often people can accept it that way, that this is the plan."

Sometimes even the most thoughtful approach falls flat. In that case, you have at least planted the seed, says Blackhall, who adds that even some of her stubborn patients relent and put their wishes in writing after some time has passed or they have had a close call with illness or death.

Each state has different laws and statutes governing end-of-life issues and distinct legal forms to fill out. All require signatures and many require witnesses or the stamp of a notary public. There are numerous Web sites and organizations that can help you find the appropriate forms for your situation and provide step-by-step instructions on how to fill them out and file them. Several such sites are listed below. 

Financial Issues: Wills and Trusts

The first step in estate planning is drawing up a will or creating a trust. Depending on the complexity of your assets and wishes, you may want to consult a lawyer. Susan Mitchell, a probate attorney in Norwalk, Calif., suggests shopping carefully for an attorney.

"You should ask how much of an attorney? practice consists of estate planning and probate and ask whether your will will be "individualized"or part of a fill in the blanks package."

Mitchell says that in addition to providing for an orderly transfer of assets, estate planning allows those you leave behind to know your wishes instead of guessing at them. Psychologically, it can also give peace of mind to children or a surviving spouse to know they are carrying out your specific directives.

Proper estate planning can also prevent unnecessary attorney fees and taxes and preserve your assets for your heirs, as well as provide for your own care should you become incapacitated, Mitchell says.

It pays to be specific. For instance, if you're left bequests to five people and ignored three others, then the court is more likely to find that you purposely excluded those three should they attempt to contest the will. The disbursement of heirlooms and other objects of monetary or sentimental value should also be clearly outlined in the will, even if you?e already made verbal assurances.

If you have underage dependents or are raising grandchildren, you?l also need to appoint a legal guardian who can be entrusted with bringing up the children according to your wishes. Likewise, if you leave money to a favorite nephew or grandchild, do you want the child to receive it when he or she turns 18? Or maybe 25? A trust gives you more flexibility on these issues.

Perhaps you want to specify that part of the money be used for tuition and living expenses. If so, how much per year? For how many years? One couple Mitchell knows set aside money to buy vehicles for each of their children when they turned 16, but specified that the money could not be used to buy two-seaters or motorcycles.

Because wills must go through probate court, which often ties up an inheritance for at least six months, some people opt to create a living trust, which means it is created during the grantor? lifetime, as opposed to a testamentary trust, which goes into existence upon the grantor? death and must be probated. Because living trusts are more complex, attorneys usually charge more to set them up than to draw up wills. But they are not for everyone, and a probate attorney can advise you on the best way to handle your specific situation.

If you opt to set up a living trust, it is wise to fund it by transferring your assets into it. A revocable trust usually names you as the executor, with complete control over it during your lifetime to revoke or modify it for any reason. Upon your death, your named executor takes over and can distribute assets immediately. A trust will not exempt your heirs from paying taxes but it may reduce attorney? fees, which traditionally are based on a percentage of the probate estate? value.

Medical Issues: Living Will, Durable Power of Attorney for Health Care,
Do-Not-Resuscitate Order

There are several important legal forms that address medical care, including the living will and the durable power of attorney for health care. Experts stress that these documents don? just concern senior citizens. "Everyone over 18 should complete it," says Carol E. Sieger, director of legal affairs for Partnership for Caring, a New York-based nonprofit.

Some of the most tragic cases she sees involve younger people in comas or who are otherwise mentally incapacitated and have left no instructions about their medical care. She cites the case of a man in Central California who lies in a coma following a car accident. His wife has asked that he be removed from life support. The man? sister and his mother have filed court documents demanding that he be kept on support. The result: an ugly and unresolved legal battle that has torn the once-close family apart.

"There are people spending thousands of dollars on legal battles because they didn? sign a ?orm that they can download free from our Web site," Sieger says. The form costs $5 to file with the court.

The living will consists of written instructions regarding what type of treatment you would or would not want to have at the end of your life. The form varies from state to state, but often lays out a number of end-of-life scenarios such as coma, terminal illness or persistent vegetative state and usually gives a list of aggressive life-sustaining medical treatments that you can choose, such as being placed on a ventilator or given artificial nutrition and hydration, CPR, dialysis or aggressive antibiotic therapy.

You can also write in additional wishes. But you won? find the terms "heroic measures" or "extraordinary means" used much anymore, Sieger explains, because they are too vague and mean different things to different people.

"With the living will, you?e just trying to paint a picture and hit all the main points," Sieger says. "Timing is usually not specified, because you want your agent to make that decision. There? no way you?l be able to hit on every medical scenario. But your agent [the person you designate to make medical decisions for you] should be given broad authority to make decisions and the documents should be kept simple, because you don? want to unintentionally restrict the agent."

There are also innovative advance planning programs that complement or even replace the traditional living will. Some have not been legally approved in every state, however, so you should check with your lawyer to make sure it can be used where you live.

One of the most thoughtful is a document called "Five Wishes" that helps you express how you want to be treated if you are seriously ill and unable to speak for yourself. It is the brainchild of Tallahassee, Fla.-based attorney Jim Towey, who worked at Mother Teresa? home of the dying in Calcutta, India, and then spent a year living in an AIDS hospice studying the wishes of dying people.

"It was so clear that people approaching the end of their lives had many concerns, and we wanted to develop a document that would help deal with their spiritual, emotional and personal concerns as well as the medical," says Towey. "A lot of times it isn? just tubes and treatment but comfort and reconciliation and dignity."

Towey says it? no wonder that most people don? want to contemplate their death.

"When you say, ?m, if you go into a coma, do you want to be put on a respirator??that conversation is a total bummer and you may not get far. But if you say, ?m, if you go into a coma, do you want your hand held, do you want music playing, do you want your pain managed, do you want your children in the room with you and who do you want out of the room??then you can get a dialogue going. We?e designed this to be used in the living room instead of the emergency room."

The second crucial medical form is the durable power of attorney for health care. This appoints another person ? be it spouse, adult child or friend ? as an agent to act on your behalf in determining medical treatment when you are unable to speak for yourself. It is operative any time you are unable to speak for yourself, not only at the end of life. "Put the power into the hands of the people who know you and love you and understand you, because these aren't always medical decisions," suggests Sieger. "They?e spiritual, ethical and moral decisions as well."

Sieger also recommends having a long talk with the agent so that he or she has a full understanding of your medical desires, what you consider to be ordinary and extraordinary treatment and what you mean by "quality of life."

If you're already had one written up, check to make sure it hasn't expired. The do-not-resuscitate order is a third type of medical legal document, which deals only with cardiac arrest. It must be signed by a physician, after consultation with a patient or his agent. It says that if you go into cardiac arrest, you are not to be resuscitated. This can be filled out ahead of time, but it is often executed during an illness, when it is determined that CPR would not medically make sense.

What About Conservatorships?

Until recently, family members usually stepped in when people grew too ill or mentally feeble to take care of their personal and financial needs. In many cases, they did this informally. In others, the courts appointed a family member as conservator.

But in the last 20 years, a group of professional caretakers has sprung up in cases in which there are no close family members or feuding family members can? agree on care for their elderly or incapacitated loved one. These are professional conservators who are appointed by a local probate court and must file regular records of their accountings to ensure that they are properly handling a client? needs and assets.

Recently, there has been a spate of news stories about professional conservators who have embezzled money, property and possessions from the clients they had a fiduciary duty to protect. As a result, there have been calls for reform and tighter regulation of the profession, which is virtually unregulated today.

To be sure, most professional conservators have high standards and do an ethical job. But experts say that if circumstances force you to seek a professional conservator, you should take several basic steps.

Attorney Mitchell explains that it is possible to name your proposed conservator in an estate planning document and that you can further differentiate between who you want to care for your personal needs and who you want to handle your finances.

When searching for a conservator, use your informal network and get recommendations through word-of-mouth, suggests Dianna Morrison, a family consultant with the Southern Caregiver Resource Center, a nonprofit organization based in San Diego. Morrison also suggests obtaining referrals from probate attorneys, local government agencies on aging or elder-law attorneys. Local senior citizen centers and the American Association of Retired Persons are also good bets.  

Funeral Arrangements

Planning your funeral has become a cottage industry today, with many funeral homes offering prepaid burial plans and a handful of organizations and publications that can walk you through the process.

However, while "it always pays to plan ahead, it rarely pays to pay ahead," says Lisa Carlson, executive director of the Funeral Consumers Alliance, a nonprofit group based in Hinesburg, Vt.

Carlson cautions against pre-paying for funerals because in most states, the money is not well protected if the funeral home goes bankrupt or if you move to a different city or state and attempt to get your money back.

However, Carlson does encourage consumers to plan for the end of life and even offers a 20-page booklet that can fit into a 6-by-9-inch plastic pouch and be stored in the freezer for safekeeping. "Before I Go, What You Should Know" provides such information as how you? like to be buried and more esoteric facts, such as the name of your dog? veterinarian and where to cancel your e-mail account.

"The fact is that 85 percent of the American public believes in a living will and advance directives, but only 25 percent have done anything about it," says Carlson. "It? our goal to get this pouch into the freezer of every American."

In general, Carlson recommends that consumers write a detailed memorandum of how they? like their funeral handled. Most states will honor this testament. But she cautions against writing such wishes into your will, since that document is generally not opened and read until several days after the funeral.

The Funeral Consumers Alliance has compiled a list of 120 funeral planning consumer groups throughout the nation and can provide comparative pricing and in some cases even negotiated rates for burials it has obtained from cooperating funeral homes. Carlson says funeral laws vary from state to state and that several states have even approved laws allowing people to designate agents for body disposition, which means handling all the details of the funeral.

"Caring for the Dead: Your Final Act of Love" (Upper Access Book Publishers), by Carlson, provides state-by-state information about who regulates funeral homes, how well-protected your prepaid funeral is, what documents you need, where to find and file them and laws surrounding home burial, cremation and embalming. It also walks you through the process of arranging a funeral without a funeral director.

Funeral practices also vary depending on culture and religion. For instance, Orthodox Jews and Muslims forbid cremation.

Resources:

Some worthy end-of-life reading:

•  "To Comfort and to Honor: A Guide to Personalizing Rituals for the Passing of a Loved One," by Jeanne Daly McIntee (Augsburg Fortress Publishing)
•  "Saying Goodbye With Love: A Step-by-Step Guide Through the Details of Death," by Sheila Martin (Crossroad Publishing Co.)
•  "I Don? Know What To Say," by Dr. Robert Buckman (Vintage Books), a book for caregivers about how to improve communication with terminally ill loved ones.
•  "As I Journey On: Meditations for Those Facing Death," by Sharon Dardis and Cindy Rogers (Augsburg Fortress Publishing).
•  "These Last Words," by Jake Jansen, John Gascoyne, Terry Anderson and Gail Olsheski (The Concept Alliance).
•  For more information about the Funeral Consumers Alliance and referrals to local organizations in your state, see http://www.funerals.org/  or call the alliance at (800) 765-0107.
•  For more information about Partnership for Caring and downloading medical legal documents, go to http://www.choices.org/.
•  For more information about Five Wishes, see http://www.agingwithdignity.org/.
•  For details about groups that deal with end-of-life issues and to receive an informational packet, go to http://www.lastacts.org/  or call (800) 844-7616.

  Denise Hamilton is a Los Angeles-based freelance journalist and Fulbright Scholar who writes a health column for the Los Angeles Times.