End-of-Life Considerations
End-of-Life Considerations are something that most people don’t even want to think about
Caring for someone who is dying can be hard. This topic gives an overview of the issues and decisions to be made by people caring for someone when the end of life is near.
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End-of-Life Care for People With Dementia
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Different Care Settings at the End of Life
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Legal and Financial Planning for People with Dementia
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Advance Care Planning: Advance Directives for Health Care
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What Is Respite Care?
Respite care can provide relief for family caregivers.
Respite care provides short-term relief for primary caregivers. It can be arranged for just an afternoon, or several days or weeks. Care can be provided at home, in a healthcare facility, or at an adult day center.
Respite services are charged by the hour or by the number of days or weeks that services are provided.
Most insurance plans do not cover these costs. You must pay all costs not covered by insurance or other funding sources.
Medicare will cover most of the cost of up to 5 days in a row of respite care in a hospital or skilled nursing facility for a person receiving hospice care. Medicaid also may offer assistance.
Paying for Long-Term Care
How do people pay for long-term care? Learn about payment sources, including government programs, long-term care insurance, and other financing options.
Many older adults and caregivers worry about the cost of medical care and other help they may need.
These expenses can use up a significant part of monthly income, even for families who thought they had saved enough.
How people pay for long-term care — whether delivered at home or in a hospital, assisted living facility, or nursing home — depends on their financial situation and the kinds of services they use.
Some people believe that their current health or disability insurance will pay for their long-term care needs, but most of these insurance policies include limited, if any, long-term care benefits.
Often, people must rely on a variety of payment sources, including personal funds, government programs, and private financing options.
Personal funds (out-of-pocket expenses)
At first, many older adults pay for care in part with their own money. They may use personal savings, a pension or other retirement fund, income from stocks and bonds, or proceeds from the sale of a home.
Much home-based care is paid for using personal out-of-pocket funds.
Initially, family and friends may provide personal care and other services, such as transportation, for free. But as a person’s needs increase, paid services may be needed.
Many older adults also pay out of pocket to participate in adult day service programs, receive meals, and get other community-based services provided by local governments and nonprofit groups.
These services help them remain in their homes.
Professional care given in assisted living facilities and continuing care retirement communities is almost always paid for out of pocket, though in some states, Medicaid may cover some costs for people who meet financial and health requirements.
Government programs
Older adults may be eligible for some government health care benefits.
Caregivers can help by learning more about possible sources of financial help and assisting older adults in applying for aid as appropriate.
Several federal and state programs provide help with health care-related costs.
Over time, the benefits and eligibility requirements of these programs can change, and some benefits differ from state to state. Check with the individual programs directly for the most recent information.
Medicare
This federal government health insurance program helps pay some medical costs for people age 65 and older, and for people younger than 65 with certain disabilities and serious health conditions.
Covered services include hospital stays, doctor visits, some home health care, hospice care, and preventive services such as vaccinations.
The program does not cover assisted living or long-term care.
Medicare components include Part A (Hospital Insurance), Part B (Medical Insurance), and Part D (Drug Coverage). Medicare Advantage is another option for obtaining Part A and Part B coverage.
Call Medicare at 800-633-4227 or visit Medicare.gov for more information.
Getting Your Affairs in Order Checklist: Documents to Prepare for the Future
No one ever plans to be sick or disabled. Yet, planning for the future can make all the difference in an emergency and at the end of life.
Being prepared and having important documents in a single place can give you peace of mind, help ensure your wishes are honored, and ease the burden on your loved ones.
Checklist for getting your affairs in order
This list provides common steps to consider when getting your affairs in order.
1. Plan for your estate and finances. Depending on your situation, you may choose to prepare different types of legal documents to outline how your estate and finances will be handled in the future.
Common documents include a will, a durable power of attorney for finances, and a living trust.
A will specifies how your estate — your property, money, and other assets — will be distributed and managed when you die.
A will can also address care for children under age 18, adult dependents, and pets, as well as gifts and end-of-life arrangements, such as a funeral or memorial service and burial or cremation. If you do not have a will, your estate will be distributed according to the laws in your state.
A durable power of attorney for finances names someone who will make financial decisions for you when you are unable to.
A living trust names and instructs a person, called the trustee, to hold and distribute property and funds on your behalf when you are no longer able to manage your affairs.
2. Plan for your future health care. Many people choose to prepare advance directives, which are legal documents that provide instructions for medical care and only go into effect if you cannot communicate your wishes due to disease or severe injury.
The most common advance directives include a living will and a durable power of attorney for health care.
A living will tells doctors how you want to be treated if you cannot make your own decisions about emergency treatment.
You can say which common medical treatments or care you would want, which ones you would want to avoid, and under which conditions each of your choices applies.
A durable power of attorney for health care names your health care proxy, a person who can make health care decisions for you if you are unable to communicate these yourself.
Your proxy — also known as a representative, surrogate, or agent — should be familiar with your values and wishes.
A proxy can be chosen in addition to or instead of a living will. Having a health care proxy helps you plan for situations that cannot be foreseen, such as a serious auto accident or stroke.
These documents are part of advance care planning, which involves preparing for future decisions about your medical care and discussing your wishes with your loved ones.
3. Put your important papers and copies of legal documents in one place. You can set up a file, put everything in a desk or dresser drawer, or list the information and location of papers in a notebook.
For added security, you might consider getting a fireproof and waterproof safe to store your documents. If your papers are in a bank safe deposit box, keep copies in a file at home. View a list of important papers.
4. Tell someone you know and trust, or a lawyer, where to find your important papers.
You don’t need to discuss your personal affairs, but someone you trust should know where to find your papers in case of an emergency. If you don’t have a relative or friend you trust, ask a lawyer to help.
5. Talk to your loved ones and a doctor about advance care planning. A doctor can help you understand future health decisions you may face and plan the kinds of care or treatment you may want.
Discussing advance care planning with your doctor is free through Medicare during your annual wellness visit. Private health insurance may also cover these discussions.
Share your decisions with your loved ones to help avoid any surprises or misunderstandings about your wishes.
6. Permit in advance for a doctor or lawyer to talk with your caregiver as needed.
If you need help managing your care, you can give your caregiver permission to talk with your doctors, your lawyer, your insurance provider, a credit card company, or your bank.
You may need to sign and return a form. Permitting your doctor or lawyer to talk with your caregiver is different from naming a health care proxy.
A health care proxy can only make decisions if you are unable to communicate them yourself.
7. Review your plans regularly. It’s important to review your plans at least once each year and when any major life event occurs, like a divorce, move, or major change in your health.
Which documents do you need to have in place?
When you’re getting your affairs in order, it’s important to prepare and organize important records and files all in one place. Typically, you will want to include personal, financial, and health information.
Remember, this is a starting place. You may have other information to add. For example, if you have a pet, you will want to include the name and address of your veterinarian.
Personal information
Full legal name
Social Security number
Legal residence
Date and place of birth
Names and addresses of spouse and children
Location of birth and death certificates and certificates of marriage, divorce, citizenship, and adoption
Employers and dates of employment
Education and military records
Names and phone numbers of religious contacts
Memberships in groups and awards received
Names and phone numbers of close friends, relatives, doctors, lawyers, and financial advisors
Financial information
Sources of income and assets (pension from your employer, IRAs, 401(k)s, interest, etc.)
Social Security information
Insurance information (life, long-term care, home, car) with policy numbers and agents’ names and phone numbers
Names of your banks and account numbers (checking, savings, credit union)
Investment income (stocks, bonds, property) and stockbrokers’ names and phone numbers
Copy of most recent income tax return
Location of the most up-to-date will with an original signature
Liabilities, including property tax — what is owed, to whom, and when payments are due
Mortgages and debts — how and when they are paid
Location of the original deed of trust for the home
Car title and registration
Credit and debit card names and numbers
Location of the safe deposit box and key
Health information
Current prescriptions (be sure to update this regularly)
Living will
Durable power of attorney for health care
Copies of any medical orders or forms you have (for example, a do-not-resuscitate order)
Health insurance information with policy and phone numbers
Who can help with getting your affairs in order?
You may want to talk with a lawyer about setting up a general power of attorney, a durable power of attorney, a joint account, or a trust. Be sure to ask about the lawyer’s fees before you make an appointment.
You do not have to involve a lawyer in creating your advance directives for health care. Most states provide the forms for free, and you can complete them yourself.
You should be able to find a directory of local lawyers on the internet, or contact your local library, your local bar association for lawyers, or the Eldercare Locator.
Your local bar association can also help you find what free legal aid options your state has to offer. An informed family member may be able to help you manage some of these issues.
What other decisions can you prepare for in advance?
Getting your affairs in order can also mean making decisions about organ donation and funeral arrangements, or what you want to happen to your body after you die.
Deciding and sharing your decisions can help your loved ones during a stressful time and best ensure your wishes are understood and respected.
Organ donation and brain donation. When someone dies, their healthy organs and tissues may be donated to help someone else.
You can register to be an organ donor when you renew your driver’s license or state ID at your local Department of Motor Vehicles.
You can also register online. Some people also choose to donate their brains to advance scientific research. It may be possible to donate organs for transplant, as well as the brain for scientific research. Learn more about organ donation and brain donation.
Funeral arrangements. You can decide ahead of time what kind of funeral or memorial service you would like and where it will be held.
You can also decide whether you would like to be buried or cremated and whether you want your body’s ashes kept by loved ones or scattered in a favorite place.
Be sure and specify certain religious, spiritual, or cultural traditions that you would like to have during your visitation, funeral, or memorial service.
You can make arrangements directly with a funeral home or crematory.
Put your preferences in writing and give copies to your loved ones and, if you have one, your lawyer.
Get organized before a medical emergency!
