Communication About the End of Life
Talking about death and other end of life topics can be very difficult. In the American culture, death is viewed as a “forbidden” topic often whispered about and not discussed openly. Unlike other countries and cultures, formal education about death and bereavement is not included in school curriculums. More frequently, we learn about the cycle of life and death only through personal experiences.
Although having conversations about end of life topics may not be a popular idea, it is extremely important. Communication increases the chance that you and your loved ones’ wishes will be met should anyone become ill, incapacitated, or die. Experts agree that when people do not make decisions in advance, they will likely end up in the hands of a health care system that has neither the time nor inclination to find out their personal preference for care. By making plans and decisions before a crisis occurs, you can place your loved ones in a position of power and knowledge. Instead of wondering what you may have wanted, your family can be sure that your wishes are respected.
Here are some strategies for starting a conversation with your loved ones about end of life decisions:
- There is no perfect time to have this conversation but it is wise to wait for a time when you are both in a good mood and have the time to talk.
- You may consider having this conversation in an environment where you have the other person’s undivided attention, such as in a car or on a walk.
- It might feel more comfortable to bring up the topic indirectly by focusing on yourself and your own end of life decisions. For example, “I have decided to make some important decisions should I become ill or have an accident. I am doing this to make things easier for the ones I care about. I realized I don’t know what your thoughts are about this topic. Maybe we could talk about that?”
- It is much easier to talk about the importance of end of life decisions if you have made these decisions yourself. Use your own wishes as a way to approach specific topics or questions.
- Another approach is to bring up an example of another family member or friend who is ill or has passed away. Ask your loved one how they would want things handled if they were in that situation. Emphasize the importance of writing these wishes down to increase the chances they are followed.
- Because reactions to this topic will vary, be prepared to delay the discussion to another time. Your loved one may need time to consider this issue and not be ready for a discussion right away. Note of caution: be sure to follow up.
- Following up a conversation about the end of life may require gentle persistence, but do not give up. Sometimes providing an article about end of life planning or an advanced directive document is a helpful conversation starter.
Questions to Consider and Discuss
- If you become ill and can’t make decisions for yourself, what would you like to have happen?
- Is there someone you would like to make health care decisions for you if you cannot make them yourself?
- Are there any treatments, such as life support or intravenous tube feeding, that you want to receive or refuse?
- Do you have any fears or concerns about medical treatments you might receive? If so, what are they?
- If you ever become ill and you are in pain, do you want medication even if it makes you drowsy or sleepy?
- What does “dying with dignity” mean to you?
After you have been successful talking about end of life planning decisions with your family member, what do you need to do next?
- Encourage your loved one to put their wishes on paper by filling out an advance directive or other legally recognized document. Emphasize that unless their wishes are written down, health care professionals may not recognize them.
- Encourage your loved one to discuss their wishes with family members. Talking openly about their wishes now will reduce potential misunderstandings between family members in the future.
- Emphasize the need for your loved one to provide copies of their advance directive to yourself and other family members who will be involved in their care should they become ill.
- Be sure any advance directive document is stored in a safe place that is known about and easily accessible by others.
- Family members also need to inform their doctor of any end of life decisions and provide him/her with a copy of their legal document.
Having conversations about end of life planning issues is never easy. These discussions force us to face our own mortality and the mortality of those we love. An important point to remember, however, is that having these conversations today can make the lives of those you love a little less difficult in the future.
Glossary of Terms
End of life planning involves making decisions about how you would like to be treated at the end of your life and who you would like to represent you should you become incapacitated. Communicating these decisions to your family, friends, and health care providers is an important part of the planning process. In order to make informed decisions, one needs to be comfortable with the many unfamiliar terms that are associated with preparing for the end of life. Below is a glossary of terms commonly used by medical and legal professionals who provide assistance with these matters.
Advance directive: A general term that describes two kinds of legal documents, living wills and medical powers of attorney. These documents allow a person to give instructions about future medical care should he or she be unable to participate in medical decisions due to serious illness or incapacity. Because each state regulates the use of advance directives differently, individuals need to obtain an advance directive in the state they currently reside.
Capacity:In relation to end of life decision-making, a patient has medical decision-making capacity if he or she has the ability to understand the medical problem and the risks and benefits of the available treatment options. The patient’s ability to understand other unrelated concepts is not relevant. The term is frequently used interchangeably with competency but is not the same. Competency is a legal status imposed by the court.
Do-not-resuscitate order:A DNR order is a physician’s written order instructing health care providers not to attempt cardiopulmonary resuscitation (CPR) in case of cardiac or respiratory arrest. A person with a valid DNR order will not be given CPR under these circumstances. Although the DNR order is written at the request of a person or his or her family, it must be signed by a physician to be valid. A non-hospital DNR order is written for individuals who are at home and do not want to receive CPR.
Hospice care: A program model for delivering comfort care to individuals who are in the final stages of terminal illness. In addition to providing comfort care and personal support to the patient, hospice includes support for the patient’s family while the patient is dying, as well as support to the family during their bereavement.
Living will:A type of advance directive in which an individual writes down their wishes about medical treatment should he/she be at the end of life and unable to communicate. It may also be called a “directive to physicians,” “health care declaration,” or “medical directive.” The purpose of a living will is to guide family members and doctors in deciding how aggressively to use medical treatments to delay death.
Medical power of attorney: A document that allows an individual to appoint someone else to make decisions about his/her medical care if he or she is unable to communicate. This type of advance directive may also be called a “health care proxy,” “durable power of attorney for health care,” or “appointment of a health care agent.” The person appointed may be called a health care agent, surrogate, attorney-in-fact, or proxy.
Palliative care: A comprehensive approach to treating serious illness that focuses on the physical, psychological, and spiritual needs of the patient. Its goal is to achieve the best quality of life available to the patient by relieving suffering, controlling pain and symptoms, and enabling the patient to achieve maximum functional capacity. Respect for the patient’s culture, beliefs, and values are an essential component. Palliative care is sometimes called “comfort care” or “hospice-type care.”
Surrogate decision-making:Surrogate decision-making laws allow an individual or group of individuals (usually family members) to make decisions about medical treatments for a patient who has lost decision-making capacity and did not prepare an advance directive. A majority of states have passed statutes that permit surrogate decision making for patients without advance directives.
Withholding or withdrawing treatment: Forgoing life-sustaining measures or discontinuing them after they have been used for a certain period of time.
When preparing for your own care or the care of an aging family member, having adequate information about programs and services for older adults is important. The first step towards making informed decisions is understanding the language used by the professionals one is interacting with. The fields of Gerontology (the study of the social aspects of aging) and Geriatrics (the study of health related aspects of aging) are complex and often bewildering. Many different terms and acronyms are used that can confuse older adults and their family members. In fact, these terms can be confusing to professionals in both fields as well!
This fact sheet is designed to highlight some of the more common words individuals might encounter when planning or caring for an older adult. It is not intended to be a complete list; however, it is a good start in helping you familiarize yourself with words you might be hearing on a regular basis.
Glossary of Terms
Activities of Daily Living (ADL) – basic personal activities which include bathing, eating, dressing, mobility, transferring from bed to chair, and using the toilet.
Acute – a condition of short and sharp course. Opposite of chronic.
Adult Day Services – programs offering social and recreational activities, supervision, health services, and meals in a protective setting for older adults with physical or cognitive disabilities.
Advance directive – legal document in which people give others instructions about their preferences with regard to health care decisions in case they become incapacitated in some way. Two types of advance directives are a living will and a durable power-of-attorney for health care.
Area Agency on Aging (AAA) – regional organizations which oversee programs serving elders (12 total in Ohio). Provide information and referral services and also typically serve as PASSPORT Administrative Agencies. C
Caregiver – family, friend, professional, or paraprofessional providing care to individual in need of assistance.
Care/Case Management (CM) – offers a single point of entry to the aging services network. Care/Case managers assess clients’ needs, create service plans, and coordinate and monitor services. Typically Care/Case managers are nurses or social workers.
Center for Medicare and Medicaid Services (CMS) – formerly called Health Care Financing Administration (HCFA). This branch of the federal Department of Health and Human Services is responsible for administering the Medicare program.
Chronic – a medical condition of long duration, denoting a disease of slow progress and long continuance.
Continuing Care Retirement Community (CCRC) – a retirement community offering multiple levels of care (independent living, assisted living, skilled nursing care) housed in different areas of the same campus and which give residents the opportunity to remain in the same community if their needs change. Provides residential services (meals, housekeeping, laundry), social and recreational services, health care services, personal care, and nursing care. Requires payment of a monthly fee and possibly a large lump-sum entrance fee.
Custodial Care – care that does not require specialized training or services. Assistance with activities of daily living, as well as with self-administration of medications and preparing special diets. Examples: help in walking, eating, and taking medicine. These may be referred to as Activities of Daily Living (ADL). D
Dementia – a term which describes a group of diseases (including Alzheimer’s disease) which are characterized by memory loss and other declines in mental functioning.
Durable Power of Attorney (DPOA) – a document which names a person who will act as someone’s agent and who will make decisions on their behalf, if they are incapacitated. The power of attorney can be restricted to a specific area (such as health care) or can cover broad decision-making responsibilities. Consult an attorney for more details.
Durable Medical Equipment/Home Medical Equipment (DME/HME) – equipment that enables independent functioning such as walkers, wheelchairs, oxygen, lift chairs, etc. E
Emergency Response Systems/Personal Response System (ERS/PRS) – also called lifelines or personal emergency response systemsa call button usually worn by the older individualwhich can be pushed to get help from family, friends, or emergency assistance in case of emergency. F
Fee for service – a method of charging for services rendered. G
Guardianship – legal arrangement in which the court appoints a surrogate decision-maker to act on someone’s behalf because they are declared incompetent. May include guardianship of the person, estate (finances), or both. The guardian may or may not know this person, depending on the situation at the time of the appointment. H
Health Maintenance Organization (HMO) – an organization that provides a comprehensive range of health services including hospitalization, preventive care, and diagnosis. HMOs require members to use specific health care services (doctors, hospitals, etc.) in the HMO’s “network.” The HMO will pay less or nothing if members go outside the network.
Home Delivered Meals (HDM) or “Meals On Wheels” – (MOW)delivers nutritionally sound meals five or more days a week to those who cannot purchase their own groceries or prepare meals.
Home Health Aide (HHA) – a semi-skilled professional, often employed by a home health agency, who provides in-home assistance with activities of daily living (ADLs).
Home Health Care – includes a wide range of health-related services such as assistance with medications, wound care, intravenous (IV) therapy, and help with basic needs such as bathing, dressing, mobility, etc., which are delivered at a person’s home.
Homemaker Services (HMKR) – help with light housekeeping, laundry, shopping, and meal preparation.
Hospice – services for the terminally ill provided in the home, a hospital, or a long-term care facility. Includes home health services, volunteer support, grief counseling, and pain management. I
Intermediate Care Facility (ICF) – a health care facility that provides care and services to individuals who do not need skilled nursing care, but whose mental or physical condition requires more than custodial care and services in an institutional setting.
Instrumental Activities of Daily Living (IADLs) – household/independent living tasks that include using the telephone, taking medications, and money management.
Incontinence – loss of bladder control. Incontinence is not a disease, but a symptom of an underlying condition. Incontinence affects both men and women of all ages and is NOT a normal part of aging. Should be discussed with a health care provider. L
Living will – a document which states a person’s preferences for future medical decisions including the withholding or withdrawing of life-sustaining treatments such as artificial nutrition and hydration or the use of equipment such as ventilators and respirators.
Long-Term Care (LTC) – range of medical and/or social services designed to help people who have disabilities or chronic care needs. Services may be short-term or long-term and may be provided in a person’s home, in the community, or in residential facilities (nursing homes, assisted living facilities).
Long-term Care Ombudsman – a representative responsible for investigating patient complaints about long-term care. Ohio has 12 regional LTC ombudsman offices. The central ombudsman is located at the Ohio Department of Aging (1-800-282-1206). “Citizen’s Representative” who protects a person’s rights through advocacy, providing information, and encouraging institutions and agencies to respect citizens’ rights. M
Managed Care – a health care plan in which monthly premiums are paid for a complete package of services through an HMO (Health Maintenance Organization) or similar type of provider.
Medicaid – federal and state funded program of medical assistance to low-income individuals of all ages. There are income eligibility requirements for Medicaid. Contact local Department of Jobs and Family Services for more information.
Medicare – federal health insurance program for persons age 65 and over (and certain disabled persons under age 65). Consists of two parts: Part A (hospital insurance) and Part B (optional medical insurance which covers physicians’ services and outpatient care in part and which requires beneficiaries to pay a monthly premium).
Medigap – insurance supplement to Medicare that is designed to fill in the “gaps” left by Medicare (such as co-payments). May pay for some limited long-term care expenses, depending on the benefits package purchased.
Mental Health – has to do with how you feel about yourself, how you feel about others, and how you are able to meet and handle the demands of life. It describes the ability to balance problems with appropriate coping skills. N
Nursing Home (NH) – a place where patients reside who need medical or personal assistance. Nursing homes may be called Skilled Nursing Facilities (SNFs), Intermediate Care Facilities (ICFs), and Custodial Care Facilities (CCFs). Not all nursing homes are Medicare approved facilities. O
Ohio Department of Aging (ODA) – state agency that oversees aging services programs (including PASSPORT) within Ohio.
Ohio Senior Health Insurance Information Program (OSHIIP) – program sponsored by the Ohio Department of Insurance which provides free information and advice about health insurance, including Medicare, Medicaid, Medigap, long-term care, and other health insurance. To find local OSHIIP center in your area, call 1-800-686-1578.
Older Americans Act (OAA) – federal law enacted in 1965 to provide money for programs and direction for a multitude of services designed to enrich the lives of senior citizens. P
PASSPORT – Ohio’s home and community-based long-term care service program for low-income persons age 60 and over. Call your local Area Agency on Agency for more information.
Peer Review Organization (PRO) – group paid by the federal government to review hospital treatment of Medicare patients. A patient has the right to appeal to a PRO if there is a question about care or length of stay.
Personal Care Assistance/Home Health Aide (PCA/HHA) – nonmedical services to assist older persons in the home such as bathing, dressing, cooking, cleaning, laundry, and running errands.
Power of Attorney (POA) – a legal document which gives another person (usually a spouse, other relative, or friend) the power to act on your behalf. In order to grant a power of attorney, you must be competent, and you do not lose the legal right to act on your own behalf.
Provider – individual or organization that provides health care or long-term care services (e.g., doctors, hospital, physical therapists, home health aides, and more). Q
Qualified Medicare Beneficiary (QMB) – a state program that uses Medicaid money to pay the Medicare deductibles and copayments for persons whose income is low enough to qualify. Qualifying income is above the poverty level. Contact local Department of Jobs and Family Services for eligibility information. R
Respite Care – service in which trained professionals or volunteers come into the home or provide short-term care at a nursing facility (from a few hours to a few days) for an older person to allow caregivers some time away from their caregiving role. Adult day service may be another way to provide “respite.” S
Senior companion – adults age 60 and over provide companionship to older adults with special needs. Companions volunteer 20 hours per week. Stipend and travel expenses are provided (companions must meet income guidelines.)
Skilled Care – “higher level” of care (such as injections, catheterization, and dressing changes) provided by trained medical professionals, including nurses, doctors, and physical therapists.
Social Security Administration (SSA) – a branch of the federal Department of Health and Human Services, responsible for determining the Medicare eligibility and enrollment process.
Specified Low Income Medicare Beneficiary (SLMB) – state program that uses Medicaid money to pay the Medicare Part B premium for person whose income is low enough to qualify. Qualifying Income is above the poverty level. Contact County Department of Jobs and Family Services.
Spend down – Medicaid financial eligibility requirements are strict and may require beneficiaries to spend down/use up assets or income until they reach eligibility level.
Support Groups – groups of people who share a common bond (e.g., caregivers) who come together on a regular basis to share problems and experiences. May be sponsored by social service agencies, senior centers, religious organizations, as well as organizations such as the Alzheimer’s Association. T
Telephone Reassurance – program in which volunteers or paid staff call homebound elders on a regular basis to provide contact, support, and companionship.
Title III services – services provided to individuals age 60 and older funded under Title III of the Older Americans Act. Services include: congregate and home-delivered meals, supportive services (e.g., transportation, information and referral, legal assistance), in-home services (e.g., homemaker services, personal care, chore services), and health promotion disease prevention services (e.g., health screenings, exercise programs). Contact your local Area Agency on Aging to see what services may be available in your area.