Navigating Health Care and Physical Realities
We don’t tend to think about what happens when we are no longer able to make decisions for ourselves. We need to discuss these issues with our families or our close friends — people who will be our caregivers and support system.
Below are links to legal forms you may want to consult, as well as a glossary of terminology to help you and your loved ones navigate the myriad decisions that will need to be made.
Advanced Care Directives: Includes Palliative Care, Hospice Care, Medical Power of Attorney and Living Will
- Five Wishes is an advance directive document created by Aging with Dignity, a nonprofit organization whose mission is to “safeguard the human dignity of people as they age or face serious illness.” Individuals can use the Five Wishes document to select a health care agent and describe their “wishes” for medical treatment, level of comfort and how they want to be treated at the end of life. They can also record “what I want my loved ones to know” about topics such as forgiveness, love and reconciliation between family members and plans for funeral services. Five Wishes is available in 28 languages and meets the legal standard for an advance directive in 42 states and the District of Columbia. It is available free online or in print for a fee.
Caregiving Facilities and Programs
As people age, they often cannot remain at home without significant caregiving assistance or they need to be in a facility where they can be cared for by professionals, rather than family members or home care providers. People need to be part of the decision-making process of what kind of facility or care they want.
Long-term insurance often helps with financial issues that arise with the need for paid caregiving or placement in a facility. People need to know and understand their Medicare, Medicaid or Veterans benefits when choosing a facility. When having a conversation about end-of-life treatment, it’s important to determine what kind of facility they would prefer and where they might want to choose to live, while taking into account personal and family resources.
Aging in Place: Often a volunteer-driven program that allows people to age gracefully in their homes by providing support for chores like taking care of pets, gardening and other household activities that they can no longer manage
Assisted Living Facilities (ALF): Residential facilities where people generally have a limited living space and all activities of daily living are taken care of; residents have communal activities provided
Board and Care: Small ALFs or nursing homes that offer a more limited set of activities for people and often provide homes with professional care for dementia or seriously ill patients
Independent Living Facilities: Retirement residential communities where people have their own homes or apartments and can take care of themselves, but there are communal facilities and activities available
Long-Term Care: Provides professional 24/7 care to those who need help with activities of daily living, like feeding or washing oneself
Nursing Homes (NH): Residential facilities that care for those who are very ill and need long-term 24/7 monitoring by a professional staff
Respite Programs: These volunteer programs in communities or synagogues support family caregivers so they can run errands or take care of personal affairs. Sometimes, longer-term respite services are required if a caregiver goes out of town. Hospice programs often offer respite programs.
Step Down Facility: Residential communities that provide for Independent, ALF and NH care as a person ages and becomes less capable of independent living. A person moves from one type of care facility to another within the same community.
End-of-Life Medical Care
At the end of our lives, there are various types of hospital care that become part of the regimen. While many people want to die at home, this cannot often be arranged due to some aspect of an illness or the inability of their family to provide adequate care.
It is crucial to understand the terminology surrounding end-of-life care.
Intensive Care Unit: In a hospital setting, this area is reserved for patients with serious, life-threatening illnesses who need dedicated 24/7 monitoring. Treatment is often curative in nature.
Hospice Care: This particular end-of-life care is legally defined as a prognosis of six months to live, even though many patients survive longer. After 65, hospice is covered by Medicare. Here, nurses and other staff are not focused on curing patients, but rather providing palliative/ comfort care that focuses on treating symptoms. Patients can be served at their home or in any living facility. As death becomes imminent and if caregivers can no longer serve the patients, they are often transferred to a hospice unit, where 24/7 care can be administered without curative treatment.
Hospitals: Hospitals provide temporary care related to acute conditions that require treatment in a medical facility with monitoring and 24/7 nursing care.
Palliative Care Unit: This medical specialty is focused on pain relief and addresses the symptoms and stress of serious illness with the goal of improving patients’ quality of life. Palliative care is appropriate at any point in an illness and can be provided simultaneously to curative treatment.
Rehabilitation Care Unit: In a hospital or stand-alone facility, this short-term treatment center aids patients recovering from a particular illness or accident. Additionally, rehab can help retrain those recovering from accidents, surgeries, strokes, etc. Often, physical or occupational therapy is involved.
Healthcare and Life Style Terminology
This glossary can be helpful in understanding end-of-life decision-making and the terms involved. (Glossary adapted from: http://www.centerforjewishendoflifecare.org/facilitating-conversations/patients-and-families)
Adjuvant Therapy: A treatment used with a medication to aid its effect
Advance Care Planning: Advance care planning is making decisions about the care you would want to receive if you become unable to speak for yourself. These are your decisions to make, regardless of what you choose for your care, they should be based on your personal values, preferences and discussions with your loved ones.
Advance Care Directive: Written or verbal instructions for your care that should be followed if you are unable to make decisions
Artificial Nutrition Hydration (fluids): There are many different kinds of artificial hydration nutrients, but there are a few features common to all of them. Always in the form of a liquid, all artificial hydration nutrients consist of various amounts of water, proteins, sugars, vitamins and minerals. The amount of each of these ingredients depends on the medical condition and needs of the patient.
Beneficiary and Family Centered Care Quality Improvement Organization (BFCC-QIO): A type of QIO (an organization of doctors and other health care experts under contract with Medicare) that uses doctors and other health care experts to review complaints and quality of care for people with Medicare. The BCC-QIO makes sure there is consistency in the case review process while considering local factors and local needs, including general quality of care and medical necessity.
Cardiopulmonary Resuscitation (CPR): A procedure used when a patient′s heart stops beating that can involve compressions of the chest or electrical stimulation.
Coinsurance: The amount charged for the cost for services after deductibles are paid. Coinsurance is usually a percentage (for example, 20 percent)
Consulting Physician: A doctor with special training or experience who is called upon to assist the primary attending physician in matters that need more specialized care
Coordination of Care: An approach in which all members of the medical team work together to plan for a patient′s care in the hospital and for discharge
Copayment: An amount required to pay for a medical service or supply, like a doctor’s visit, hospital outpatient visit or prescription drug. A copayment is usually a set amount, rather than a percentage. For example, you might pay $10 or $20 for a doctor’s visit or prescription.
Deductible: The amount paid for health care or prescriptions before original medicare, a prescription drug plan or other insurance begins to pay
Do Not Resuscitate (DNR) Order: A physician’s order not to attempt CPR if a patient′s heart or breathing stops. The order is written at the request of the patient or family, but it must be signed by a physician to be valid. There are separate versions for hospital and home use (see nonhospital do not resuscitate order).
Durable Power of Attorney For Healthcare: A document that designates the person you trust to make medical decisions on your behalf if you are unable.
Ethical Will: A document designed to pass on wisdom and love to future generations, articulating the ethical values that one cherishes and holds dear. Sometimes called a legacy letter, crafting an ethical will can be a spiritually meaningful and healing process. Rabbis and hospice professionals may be available to help you envision and write your ethical will.
Feeding Tube: A tube that is inserted into the stomach to administer liquid food. Feeding tubes are used when someone can no longer get nutrition by mouth or if they need supplemental nutrition.
Healthcare Proxy/Surrogate: Similar to a durable Power of Attorney for healthcare, this document designates the person you trust to make medical decisions on your behalf if you are unable.
HIPAA Release Form: A legal document that allows your healthcare information to be provided to a designated person. You can allow all information to be released or omit specific items.
Home care: Services provided in the home, such as nursing and physical therapy
Hydration: The process of providing water or fluid by mouth, tube or intravenously
Intubation: The process of inserting a tube into a patient′s lungs to help with breathing
Life-Prolonging Treatment: Medical treatments that aim to cure or remedy an illness
Living Will: A document stating a patient′s wishes regarding medical treatments
Long-Term Care: Care that supports patients with chronic impairment for an indefinite period of time provided in nursing facilities, at home or in the community
Medicare Advantage Plan (Part C): A type of Medicare health plan offered by a private company that contracts with Medicare to provide elderly patients with complete Part A and Part B benefits. Medicare Advantage Plans include Health Maintenance Organizations, Preferred Provider Organizations, Private Fee-for-Service Plans, Special Needs Plans and Medicare Medical Savings Account Plans. If you’re enrolled in a Medicare Advantage Plan most Medicare services are covered through the plan and aren’t paid for under Original Medicare. Most Medicare Advantage Plans offer prescription drug coverage.
Medicare Health Plan: Generally, a plan offered by a private company that contracts with Medicare to provide Part A and Part B benefits to people with Medicare who enroll in the plan. Medicare health plans include all Medicare Advantage Plans, Medicare Cost Plans and Demonstration/Pilot Programs. Programs of All-Inclusive Care for the Elderly (PACE) organizations are special types of Medicare health plans that can be offered by public or private entities and provide Part D and other benefits in addition to Part A and Part B benefits.
Medicare Part A (Hospital Insurance): Part A covers inpatient hospital stays, care in a skilled nursing facility, hospice care and some home health care.
Medicare Part B (Medical Insurance): Part B covers certain doctors’ services, outpatient care, medical supplies and preventative services.
Medicare Prescription Drug Coverage (Part D): Optional benefits for prescription drugs available to all people with Medicare for an additional charge. This coverage is offered by insurance companies and other private companies approved by Medicare.
Medigap Policy: Medicare Supplement Insurance sold by private insurance companies to fill “gaps” in original medicare coverage.
Mi Sheberakh: A Jewish prayer of healing for the sick traditionally recited in the synagogue, though commonly used in the hospital environment.
Nonhospital DNR Order: A physician’s order that provides direction to emergency medical services, home care, hospice and hospital emergency services personnel to withhold cardiopulmonary resuscitation (CPR). This must be signed by a physician.
Nonsteroidal Anti-Inflammatory Drugs (NSAIDs): A class of pain medications such as Ibuprofen and Aspirin
Opioids: A class of pain medications that have some opiate narcotic properties but are not derived from opium.
Original Medicare: Original medicare is a fee-for-service health plan that has two parts: Part A (Hospital Insurance) and Part B (Medical Insurance). After paying a deductible, Medicare pays its share of the Medicare-approved amount, and the patient pays the remaining share (coinsurance and deductibles).
Palliate: Relieve the symptoms of a disease or disorder
Palliative Care: This medical specialty is focused on pain relief and addresses the symptoms and stress of serious illness with the goal of improving patients’ quality of life. Palliative care is appropriate at any point in an illness and can be provided simultaneously to curative treatment.
Percutaneous Endoscopic Gastrostomy (PEG): A surgical procedure for inserting a tube into the stomach to provide nutrition and hydration
Premium: The periodic payment to Medicare, an insurance company, or a health care plan for health or prescription drug coverage
Primary Attending Physician: A patient′s main doctor, who coordinates all referrals to specialists
Psalms: The first book of the third section of the Hebrew Bible, called Tehillim in Hebrew. Psalms are commonly recited during times of difficulty.
Respite Care: Temporary, short-term relief and assistance for caregivers
Resuscitation: Similar to CPR, a protocol used when a patient′s heart stops beating; it can involve compressions of the chest or electrical stimulation.
State Health Insurance Assistance Program (SHIP): A state program that gets money from the Federal government to give free local health insurance counseling to people with Medicare.
Subacute Care: Short-term care in a nursing facility, usually for physical therapy
Symptom: A feeling a patient has that indicates a disorder or disease.
TTY: A TTY (teletypewriter) is a communication device used by people who are deaf, hard-of-hearing, or have severe speech impairment. People who don’t have a TTY can communicate with a TTY user through a message relay center (MRC). An MRC has TTY operators available to send and interpret TTY messages.
Ventilator: A machine that breathes for a patient when he or she is unable to do so independently
Viddui: A Jewish confessional prayer recited at the deathbed
