LEGAL AND FINANCIAL PLANNING FOR CAREGIVERS

A condition as serious as cancer can create strain on your family’s physical, psychological and financial resources. How you weather this difficult time will have an impact on your family’s present and future well-being. You and your spouse with cancer will have many adjustments to make. You may face challenges to meet basic living expenses on one salary; to pay for extras not covered in your insurance plan; and to preserve investments for the future. Whether you are caring for your spouse or for an aging parent with cancer, your role as a caregiver will likely include helping the person with cancer plan for and make legal and health care decisions. As early as possible after learning your family member’s diagnosis, set aside some time for legal and financial planning.

Legal Priorities

New health care privacy laws require written documentation that you, as the caregiver, are authorized to discuss a family member’s care with health care providers. Whether you are caring for your spouse or your parent, make sure that this documentation has been filed with each physician’s office. In addition, legal experts say, it is advisable to have advance directives in place. These are notarized legal documents that stipulate a person’s preferences for health care decisions and distribution of property and assets.

Some couples feel comfortable drawing up legal documents on their own. Others may already have an attorney, or wish to find an attorney, to act as advisor and intermediary. A traditional will may be sufficient to ensure that property is distributed according to a person’s wishes, but make sure your spouse’s will follows the rules for validity in your state. If you and your husband have considerable assets, you may save on tax liabilities and delays caused by probate if you have an attorney prepare a trust which holds your assets. In preparation for a visit with an attorney, make a list of your current assets and liabilities. You and your husband should also discuss who you would designate as trustee of your estate, and as guardian of your minor children should something happen to both of you. When your spouse has cancer, it is also important to discuss his preferences for health care decisions that are typically included in an advance directive (see definition below). Your local bar association, listed in the yellow pages, can furnish referrals for attorneys who specialize in both health care law and estate planning.

If you are a caregiver for a parent with cancer, these discussions may be more delicate than they would be with a spouse. According to Les Gallo-Silver, an oncology social worker and Director of Clinical Services for CancerCare, Inc., the idea of relinquishing legal control of one’s property can cause great anxiety for the person with cancer. You can reassure your parent with cancer that, in fact, an advance directive represents a way to ensure that their financial and health care decisions are honored. When the complications of a parent/child relationship impede your discussions about advance health care and legal planning, it may be advisable to seek an oncology social worker or other professional skilled in counseling on these issues. (See "Other Resources, #1)

Terms you will hear:

• Durable power of attorney for health care (may also be called an advance health care directive) – a document authorizing someone to make health care decisions for the person who is sick. Depending on the laws governing powers of attorney in your state, this person may be called an ‘agent’ or a ‘proxy.’ If you are designated as your husband’s health care proxy, you are basically agreeing to “stand in” for him if he becomes too sick to make decisions himself. Decisions included in an advance directive usually relate to giving consent to or refusing diagnostic procedures or treatments, selecting health care providers, and directing the provision or withdrawal of life support measures, such as hydration, artificial nutrition or cardiopulmonary resuscitation (CPR).

• Living will – Similar to a durable power of attorney for health care, this document states your preferences for end of life care. It does not carry as much legal authority as the durable power of attorney. (See "Other Resources, #2)

The following do’s and don’ts may help you and your spouse decide what to include in his advance directive:

• Don’t use vague terms such as “no heroic measures,” when stipulating which life-sustaining treatments your spouse may prefer.

• Do use specific terms such as ‘no artificial nutrition or hydration’ to state his wishes for end of life care.

• Don’t use a generic form for a durable power of attorney for health care without checking the requirements for such forms in your state. For instance, some states require designation of one agent and one or two alternate agents for health care decision making. The Partnership for Caring website supplies state-specific forms which you can download. (See "Other Resources," #3)

• Do consult with your spouse’s doctors and an attorney if you are unsure about what to include in the advance directive. Provide copies to all providers for inclusion in your spouse’s medical records.

• Don’t agree to terms of an advance directive unless you are confident you understand your spouse’s wishes, and can carry them out in his place.

• Do revisit your legal documents at regular intervals (some experts advise every 6 months or so). Your spouse may get better, or your child’s cancer may recur. In addition, as someone proceeds through cancer treatment, his or her feelings about health care decisions can change.

Putting Finances in Order

Facing an uncertain future and mounting medical bills can be stressful for both the person with cancer and his or her caregiver. In fact, as your spouse focuses on his treatment, you may find yourself worrying even more about finances. To help allay your anxieties, begin with your current situation:

• Will your spouse be able to continue working? If his prognosis is good, perhaps he can negotiate part-time employment or a leave of absence. Otherwise, you can explore obtaining disability insurance benefits. Contact the Social Security Administration’s toll-free hotline at (800) 772-1213. The Department of Veterans Affairs (VA) offers benefits to qualified veterans (call 800-669-8477 to reach the VA Insurance Service).

• Do you have money to pay for expenses not covered by insurance? For instance, your spouse or elderly parent may require treatment at a regional cancer center. You may be able to access resources for the “extras” not covered by insurance, such as travel to a distant cancer center www.patienttravel.organd www.corpangelnetwork.org, or accommodations for spouses and family members near major treatment centers www.nahhh.org(National Association of Hospital Hospitality Houses, Inc. Besides savings accounts, property equity or lines of credit, there may be other sources of financial support. CancerCareprovides lists of other resources.

• Do you have a good record-keeping system in place? Start a file drawer for insurance claims, and keep copies of every form submitted to your insurance company. A detailed explanation for collecting health insurance benefits can be found in Chapter 12, “Straight Talk about Insurance and Health Plans,” by Irene C. Card in the book, A Cancer Survivor’s Almanac, published by the National Coalition for Cancer Survivorship. (Order the book online at www.canceradvocacy.orgor by calling toll free 877-NCCS-YES.) If you run into trouble with refusal of claims payments, the Patient Advocate Foundation [700 Thimble Shoals Blvd., Suite 200, Newport News, VA 23606; www.patientadvocate.orgcan be a resource.

• Do you set aside time each week to work on insurance matters? The paperwork connected with extended cancer treatment can be overwhelming for the caregiver at times, as Melinda, 50, vice president of a California book publishing company, found. In the last four years of his life, her husband was hospitalized 40 times. At one point, she mentioned to her brother that she didn’t know when she was going to be able to send in forms for reimbursement. He offered to handle the claims forms, so she sent the bundle to him. “Many of the companies had 800 numbers for customer service, and so even though my brother lived in another state, he wasn’t paying long distance charges.” It was one very important way for another family member to contribute and to feel included.

• Do you have a plan in case your spouse does not survive his illness? Legal experts advise that caregivers should be able to immediately access important financial information if the person with cancer dies. There may be other steps you can take if your husband’s physicians tell you that his condition is worsening. These may involve such legal transactions as shielding family assets by transferring them to a friend or relative (handled through your attorney). In this way, surviving family members have resources to continue functioning without the fear of bankruptcy. In addition, accelerating or viaticating (vye-AT-i-kating) the person with cancer’s life insurance policy is one option from which families have benefited. Viatical settlements are legitimate legal transactions. Companies specializing in these settlements buy the life insurance policies of people with terminal illnesses who have less than one year to live, as certified by their physician. The cash settlements, which range from 50% to 80% of the policy’s face value, can provide a financial “breather” for both the person with cancer and the caregiver. Some caregivers report that this option has provided a valuable way to spend quality time together without the burden of constant worry about finances. (See "Other Resources," #4)

  You may feel uncomfortable talking about the possibility that your spouse or family member for whom you are caring might die. However, you and your spouse can actually decrease your stress if you are able to talk about these issues and make your plans together. Many report that planning for their financial and health care future through advance directives enables them to focus on healing and being together.

  Other Resources

  1. CancerCare offers one-on-one telephone consultations with trained oncology /social workers, and referrals to social workers in your area – call (800) 813-HOPE.

  2. The well-known living will, “Five Wishes,” can be ordered from Aging with Dignity, PO Box 1661, Tallahassee, FL 32302-1661. Phone: (850) 681-2010, or at their website address: www.agingwithdignity.org.“Five Wishes” helps the people with cancer identify the person to make their health care decisions, the kind of medical treatment they prefer, and final messages they want to convey to their family members and friends.

  3. The Partnership for Caringoffers state-specific advance directive documents.

  4. “Cash for the Final Days,” by Gloria Grening Wolk, MSW, is a financial guide for terminally ill people and their advisors. The book, which features a foreword by Ralph Nader, details specifics of viatical settlements, and helps readers to evaluate the advantages and disadvantages of such transactions.

  5. “A Cancer Survivor’s Almanac: Charting Your Journey,” edited by Barbara Hoffman, JD, offers a wealth of resources for every aspect of financial and legal planning.

  6. Live Strong, an educational program sponsored by the Lance Armstrong Foundation, offers a variety of tools and resources listed under the heading ‘Practical Topics’ on the website: www.livestrong.org.