End of Life Planning
We often assume our loved ones will know our wishes about medical care should we become incapable of making our own decisions. More often than not, however, we have never actually discussed these wishes with family members or a designated individual. Care issues become even more important when facing a debilitating disease like dementia.
Life-planning decisions should be discussed as early as possible so you and your loved ones can thoughtfully consider options and voice your values. Talking about these plans may make you uncomfortable or seem irrelevant if you're young, but the earlier you start, the better off you and your loved ones will be. You will have more time to think about what you really want. These documents can be updated and changed over time as needed.
Consider appointing a trusted person who will know where you keep important papers and have a plan for handling legal and financial matters in the event you are unable to do so. Getting your affairs in order is one of the greatest gifts you can give your loved ones.
Health care directives are a set of documents that describe your health care wishes.
- Health care declaration or "living will": a written explanation of the type of care you would like should you be unable to communicate at the time of illness; specifically this document addresses the use of artificial life support, mechanical ventilators, cardiopulmonary resuscitation (CPR), feeding tubes, pain medication, etc. It is important to note if you choose to refuse life support, this does not mean you refuse all care; you can request specific life support measures, comfort care and pain medication.
- Durable power of attorney for health care (DPOA for health): a document granting power to someone you choose to make health care decisions should you not be able to do so. These decisions address treatment, selection of health care providers, institutional or home care, organ/body donation and more. This is a simple document that can be completed without hiring an attorney. DPOA forms are available in most hospitals, office supply stores and online.
These two objectives can often be handled in a single document. The living will/advance directive allows you to name a person to direct your health care when you cannot do so. This is your "health care representative" or "attorney-in-fact" for health care. Make sure you choose someone who will follow your instructions and insist that your wishes for end-of-life care be respected. You should discuss your choices with your doctor and your identified health care representative to ensure they understand and agree to honor your wishes. If your doctor cannot agree to honor your living will/advance directive, that doctor should refer you to one who will.
Legal planning also includes elements of financial planning:
- Durable power of attorney for finances (DPOA for finance): a document granting power to someone you choose to make financial decisions should you become incapacitated to do so. It can help people with dementia and their families avoid lengthy and expensive court actions that may take away control of financial affairs.
- Living trust: a legal document that establishes a legal entity, called a "Trust," which holds title to your assets. The trust is managed by a "Trustee," which can either be yourself, or someone you appoint. The trust will include your instructions on how to manage your assets during your lifetime and distribute your assets after death. A properly executed trust will enable your beneficiaries to avoid probate.
- Will: a legal document that describes how your property will be transferred and who will care for your children (if applicable) after your death. Making a will requires you to choose and name an executor (the person who will manage the estate) and the beneficiaries (the people who will receive the estate).
Financial planning is the process of setting up a plan for how to cover your financial needs while you are alive, manage your money when you are no longer able to, and disperse your money after your death. Financial planning should start as early as possible so the person with dementia can be thoughtfully involved in the discussion, voice their values and legally sign any documents. Once someone is diagnosed, you will most likely need to adjust the management of their money and ensure the protection of their assets.
Planning ahead means:
- Having joint signatures on all financial accounts
- Discussing future financial affairs with an adviser
- Arranging how and when the person with dementia will access their finances
- Making a financial power of attorney
- Naming beneficiaries on all banking, investment and retirement accounts
- Arranging for payment of long-term health care: use of private insurance, Medicare, Medicaid (Medi-Cal in California) and Supplemental Security Income (SSI) when applicable
- Preserving the family assets: ensuring that the patient’s spouse and any disabled family members are adequately protected
- The distribution of the person’s assets on his or her death. (If the person has a disabled spouse, child or other family member that they wish to provide for, special arrangements need to be made.)
If a bank account is held jointly, the joint owner can continue to manage the account without any change in arrangements. However, the person with neurodegenerative disease still has equal access to the account as well, and this can create problems if they use the account inappropriately. To avoid these difficulties the person with dementia can give authority, while legally competent, to another person to operate the account. It is important to remember that this authority will become invalid if the person with dementia is no longer legally competent. If they are unwilling to agree to a change of arrangement it may be helpful to consult a financial planner or bank representative about a possible solution.
Talking about a loved one’s impending death is frightening and difficult, which leads many to put it off until later. Although discussing death can initially be uncomfortable, you undoubtedly want to understand your loved one’s final wishes, so you can carry them out as fully as possible. Life-planning decisions should be discussed as early as possible so your loved one can thoughtfully consider options and voice their values. People often assume that their loved ones know their wishes about medical care but have never discussed it. In our experience, families are always grateful that they dealt with these difficult questions early on, rather than at the last minute.
You should consider health care directives, power of attorney and appropriate places to live as care needs change. Some questions to consider include:
- If I have difficulty breathing, do I want to be placed on a respirator (an artificial breathing machine)?
- If I develop an infection or pneumonia, do I wish to be treated or just receive comfort care?
- If I can no longer swallow safely, do I wish to have a feeding tube placed into my stomach or to receive nutrition through an IV?
- If my heart stops beating, do I wish to receive CPR?
- Do I want to donate organs or my body for autopsy, research or transplant patients?
The answers to these questions will help you complete your legal preparations and can be changed or updated throughout your life.
Autopsy can be invaluable to both families and researchers by confirming a neurodegenerative disease diagnosis.
- The diagnosis given in a clinical setting is based on neurological, neuropsychological and radiological assessments. However, this diagnosis is pathologically proven by autopsy. By confirming or refuting our clinical diagnosis, the autopsy improves our ability to diagnose neurodegenerative disease earlier and more accurately.
- Without nervous system tissue donations, the development of better treatment for future generations would be severely limited. Many types of tissue are rare and greatly needed.
- With an autopsy, the effects of neurodegenerative disease on the brain can be studied in detail and evaluated visually.
An autopsy does not delay or complicate any funeral, cremation or burial plans. Removal of the brain or spinal cord does not prevent an open casket, embalming or other traditional funeral arrangements. In most cases, the autopsy plan is compatible with the family’s culture, choice of funeral home and religious practices.
End of Life Planning Resources
- NIH Senior Health End of Life pages: Web pages put together by the National Institutes of Health (NIH) on preparing for the end of life and care options at that time.
- ADEAR Legal and Financial Planning for People with Alzheimer's Disease Fact Sheet: A fact sheet that discusses healthcare advance directives, gives an overview of financial and estate planning documents, describes the ways different kinds of experts can help, and lists three steps for getting your affairs in order and other tips.
- UCSF Advance Health Care Directive Kit: A free guide to help you express your health care wishes.
- American Bar Association: The voluntary professional association of American lawyers.
- California Coalition for Compassionate Care: A statewide partnership of more than 95 regional and statewide organizations promoting high-quality, compassionate end-of-life care for all Californians.
- Caring.com: Caring.com helps family caregivers make better decisions, save time and money, and feel less alone as they face end of life decisions.
- National Caregivers Library: a series of articles discussing general end of life issues, funeral planning, grief and loss, as well as hospice care.
- Caring Connections: Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO), is a national consumer and community engagement initiative to improve care at the end of life, supported by a grant from The Robert Wood Johnson Foundation.
- Caring Conversations: This workbook from the Center for Practical Bioethics helps you approach difficult conversations with loved ones on end-of-life planning.
- Compassion and Choices: A nonprofit organization that provides support and counsel, local referrals, assistance with legal planning and advocacy through their Client Support Services (accessible online or by calling 800-247-7421).
- ElderLawAnswers: An elder law information site with many resources, in-depth articles, elder law lawyer lists and state-by-state information.
- Family Caregiver Alliance: A caregiver resource center for brain impaired adults, support groups, education, care planning, research and advocacy. End-of-Life Decision-Making is a helpful fact sheet that answers a number of common questions and links to other resources.
- Five Wishes: From Aging with Dignity, an accessible workbook that helps you document your medical, personal, emotional and spiritual wishes. Five Wishes meets legal requirements under the advance directive statutes in all but 10 states.
- Funeral Consumers Alliance (FCA): Funeral Consumers Alliance is a nonprofit organization dedicated to protecting a consumer's right to choose a meaningful, dignified, affordable funeral. The Funeral Consumers Alliance of San Mateo and Santa Clara Counties, and its affiliate, the Funeral Education Foundation (FEF), is a local chapter of the FCA.
- HospiceNet: The Hospice website is for patients and families facing life-threatening illnesses. Their "Hard Choices for Loving People" article, written for those making medical decisions on behalf of loved ones, may be especially helpful.
- Legal Issues in Planning for Incapacity: a question and answer on legal issues from the Family Caregiver Alliance
- List of estate planning attorneys, financial planners and CPA planners by US state from the National Care Planning Council
- Medicare: Information about the federal health insurance program for people age 65 or older.
- The National Academy of Elder Law Attorneys: A professional association that can help families find qualified lawyers.
- State legal aid offices or social service agencies may be able to find legal assistance for you.
- Your bank or lawyer can recommend a certified financial planner.
- For help with medical planning, consult your physician, hospital ethics office or your lawyer.