Week of May 18 - May 24, 2008

A diagnosis of Alzheimer’s disease all too often finds the patient and caregiver unprepared to deal with the important legal and financial decisions that eventually will need to be addressed. Indeed, many people have not taken time to plan ahead to communicate their wishes clearly if a major neurodegenerative disease strikes, according to recent national surveys.

Even if a person has taken some of the necessary steps to create planning documents, chances are these plans need to be thoroughly reviewed and updated in light of a diagnosis of dementia. Over time, cognitive decline strips Alzheimer's patients of the ability to think clearly and make major decisions. Ideally, major legal and financial decisions should be made before judgment and emotion are clouded, when the person with Alzheimer's can think clearly and can still make decisions.

Of course, no one plans to get Alzheimer's. It is usually not until after a diagnosis of Alzheimer's that most patients and families address legal and financial issues, such as making a will, creating a living trust, and adopting advance directives.

When families begin the legal planning process, there are a number of strategies and legal documents they will need to discuss. Depending on the family situation and the applicable State laws, some or all of the following terms and documents may be introduced by the lawyer hired to assist in this process. Broadly speaking, these documents can be divided into two groups:

• health documents that communicate the health care wishes of someone who may no longer be able to make health care decisions
• financial documents that communicate the financial management and estate plan wishes of someone who may no longer be able to make such financial decisions.

Health Documents

Advance directives for health care communicate the health care wishes of a person who can no longer make health care decisions. These documents must be prepared when the individual still has legal capacity to execute them. Advance directives for health care include Living Wills, the Durable Power of Attorney for Health Care (sometimes referred to as a Health Care Proxy), and Do Not Resuscitate orders.

A Living Will is a record of a person’s wishes regarding specific medical circumstances and treatment at or near the end of life. It can specify future decisions about life-sustaining treatment and major health care decisions when the patient becomes terminally ill or permanently unconscious. “The Living Will creates the legal framework for a terminal patient to die with dignity and protects the physician or hospital from liability for withdrawing or limiting life support,” says Jason Karlawish, M.D., of the University of Pennsylvania Alzheimer’s Disease Center. “Perhaps one of the most important things a person can indicate in a living will is how much leeway or discretion is given to the trust proxy over decisions. Most people would like their trust proxy to exercise some discretion over decisions. The key then is thinking about what kinds of values and considerations should guide that discretion.”

A Durable Power of Attorney for Health Care is a document in which an individual designates an agent, or proxy, to make future medical and other health care decisions, when the individual is no longer capable of doing so. While most regular powers of attorney become invalid upon the mental incapacity of the executor, this document in contrast, because of its “durability,” continues in effect. A Durable Power of Attorney for Health Care can be highly detailed in its instructions and can carefully limit the scope of action of the agent. Some of these go into effect immediately upon execution, while others, called “springing,” only go into effect upon the occurrence of a future defined event (often formal clinician determination of incapacity of the individual). Depending on how the Durable Power of Attorney for Health Care is drafted, the agent can have the “final say” regarding everything from minor health concerns to major medical decisions. For example, agents can be given authority to:

• discharge health care providers
• remove the patient from an institution
• choose to refuse or agree to various treatments
• have access to medical records
• make decisions about making anatomical gifts.

The agent should be someone who understands the needs of the patient. Ideally, the agent is a person who can be flexible and stay calm under pressure and the ever-changing dynamics of illness. Depending on what the patient specifies and the legal requirements of the State in which the patient lives, the agent can decide whether the person with Alzheimer's will end life at home or in a professional facility. Agents also can be legally empowered to make decisions about starting, continuing, or discontinuing life support if the patient has not specified such wishes in a living will. Life support for an Alzheimer's patient often involves the question of whether to use a feeding tube. “We generally don’t recommend enteral nutrition and hydration at the end of life. It can be uncomfortable for the patient, and there is little if any evidence that it effectively treats common problems such as aspiration, skin breakdown, and infections,” said Dr. Karlawish.

Choosing an alternate health care agent is a good idea, in case the primary agent is unavailable. In this connection, the Health Information Portability and Accountability Act (HIPAA) of 1996 sets rules and limits about who can access private medical information. Each person must state in writing who is allowed to view and obtain medical records in the event that he or she is no longer capable. Without written permission, the agent, alternate agent, family members, or other health professionals will have difficulty obtaining records needed to make informed health care decisions.

The Do Not Resuscitate order is a document that instructs health care staff, including emergency medical technicians, not to perform life-saving treatments or other heroic measures (for instance, cardiopulmonary resuscitation) in medical situations where they could be used.

Financial Documents

Financial Management and Estate Planning Planning documents for financial management communicate the financial and estate plan wishes of a person who may be unable to make such decisions. Financial management documents include the Durable Power of Attorney for Finances, Wills, and Living Trusts. Each of these documents must also be prepared and executed when the individual still has legal capacity.

A Durable Power of Attorney for Finances is a document in which an individual designates an agent, or proxy, to make financial decisions on his/her behalf — again often at a time in the future when the individual is no longer capable of making such decisions. It is durable and is explicitly intended to survive the incapacity of the individual. This document should be carefully drafted to give the agent the necessary powers to carry out the financial affairs of the individual. The Durable Power of Attorney for Finances can provide patients and families a great deal of flexibility in managing financial matters, and in the right circumstances, it can help them avoid the need for court conservatorship and judicial oversight of financial affairs. They can go into effect upon execution or be springing.

A Will is the most familiar financial planning document. It indicates how a person’s assets and estate will be distributed among beneficiaries (heirs) after his/her death. Instructions found in a Will include naming how dependent minors are to be cared for, spelling out specific gifts, creating trusts to manage the estate, and providing funeral or burial instructions. An individual must have “testamentary capacity” (the legal ability to make a Will) in order to create a valid Will. Although testamentary capacity is generally viewed in a liberal way by the courts, it is important that the newly diagnosed patient with Alzheimer's and his/her family move quickly to make or update a Will and secure his/her estate.

A third financial planning document is the Living Trust. In a Living Trust, a “grantor” creates a Trust and designates a person to serve as trustee and follow the Trust’s terms after the grantor dies. The trustee manages assets for a beneficiary (often the grantor) and has a legally enforceable fiduciary duty towards the beneficiary. The Trust is called “Living” because it is created while the grantor is living and not at his/her death. While alive, the grantor usually may serve as a trustee and control the assets even though they belong to the Trust. The main advantages of a Living Trust are that it can encompass a wide range of property, provide a detailed plan for its disposition after the grantor’s death, and avoid the expense and delay of probate for wills. A Living Trust can also state where property should be distributed when the last beneficiary dies or whether the trust continues to exist for the benefit of others. The trustee can also be named as the health care agent through a Durable Power of Attorney for Health Care.

Experts advise that extra care should be taken to ensure that the transfer of assets after death will take place, rather than being left in an account after the death of the person creating the trust. They also recommend naming an alternate trustee.

The family of a person with Alzheimer's also may want to consider advance planning for the funeral. As difficult as these topics may be for everyone—including the health care professional—to discuss, and although it may be several years until end-stage Alzheimer's, experts say that advance planning for death can provide a sense of peace and help reduce anxiety or a sense of urgency.

Revisit Plans Over Time

The Alzheimer's patient and caregivers may need time to consider and sort through the health care team’s planning advice. “Because there are so many challenges facing the patient and family, we need to recognize that one conversation about advance planning may not be enough. We should revisit the issue from time to time with the family and with the patient, if feasible, and reiterate to them that advance plans can and should evolve as situations change, all the while realizing that the patient’s ability to participate meaningfully in such meetings will decline over time,” commented Dr. Knopman.

Resources for Low-Income Families

Low-income families who cannot afford the services of a private lawyer can still do some advance planning, particularly in the area of health documents. The basic health planning documents, though they may vary from State to State, use terminology and instructions that are fairly consistent.

• Free Advance Directive document templates can be downloaded for each State in the USA from CaringInfo.org.
• Legal advice or help may be available from local Area Agency on Aging officials.
• Other sources of legal assistance for low income families include State legal aid bureaus, the State Bar Association, local nonprofit agencies, foundations, or social service agencies that provide umbrella services and may be able to provide referrals to organizations that offer reduced fee or free services.

Ethical Wills

An increasingly popular, but not legally binding, document is the Ethical Will. Ethical Wills are written statements by people who are dying. The Ethical Will imparts end-of-life wisdom about what the person has gleaned from life. The Ethical Will often completes “unfinished business” and ties up loose ends. These documents thus serve as a testament to the person’s philosophy of life. To an early-stage Alzheimer's patient, an Ethical Will provides the opportunity to reflect on life, share values, restate principles, convey hopes, impart lessons learned, and provide details on family culture and background.

Summary

Facing Alzheimer's is difficult and can be emotionally wrenching for all concerned. At some point soon after the diagnosis, the health care team, the patient and family should begin thinking about and addressing many end-of-life issues. Facilitating health care and financial planning can help families confront tough questions about future treatment, caregiving, and legal arrangements, and can help increase patient and family empowerment and closure.

Table of Legal & Financial Planning Documents

MORE INFORMATION:

Free Advance Directive document templates can be downloaded for each State in the U.S.A. from CaringInfo.org.

A network of highly qualified elder law attorneys is accessible throughout the U.S. at ElderLawAnswers.com .

SOURCE:

National Institute on Aging

ARTICLE BY:

Edited by Peter Berger, Alzheimer's Weekly

Reviewed for medical accuracy by Dr. Boaz Ancselovic, MD, Geriatrician, Alzheimer's Weekly

COPYRIGHT:

Copyright © 2008. Alzheimer's Weekly LLC. All rights reserved.