Glossary of Terms
501(c)3 – A 501(c)3 is the most common type of tax-exempt status for non-profit organizations. It allows the organization to forego paying federal income tax if, as in our case, its activities have a charitable purpose. Donations and giving to the organization are also tax-exempt.
Advanced Directives – An advanced directive is a legal document which allows a person to spell out their decisions about end-of-life care ahead of time. It is a way to tell family and healthcare professionals what their personal wishes are which should avoid conflicts later on.
AND (Allow natural death) – AND is a term used when discussing wishes for end of life care. It conveys a person’s desire to allow natural death peacefully and with dignity in place of unnecessary heroic measures and complex invasive medical procedures.
Assisted Living Facility – An ALF, also known as a Personal Care Home, is a long-term care residence that provides supervision and assistance with personal care, safety, and other daily activities. There is around the clock professional caregiving support, but no skilled nursing help for complicated medical conditions. The room and board, and personal care services, are all “private pay,” unless the person has a Long Term Care Insurance policy, which may defray expenses. Each facility must be licensed. They are inspected and regulated by the Pennsylvania Department of Human Services.
Bereavement Care – Bereavement care is a very important component of hospice care that provides ongoing support for family survivors for one year or more after the death of their loved one. Several different types of programs may be available uniquely designed for spouses, parents, and children. The hospice provider also may offer different family events, gatherings, and memorials throughout the year to support the survivors.
Continuous Care – Continuous care is a short-term level of hospice care that can be received at home, or anywhere the person is living, if symptoms become difficult. Around the clock short term care can be provided on site by nurses, home heath aids, and others in acute care crises. The cost of this care is paid for by the hospice benefit of a person’s insurance. It is a very important level of care that a hospice agency should offer; and the agency must be adequately staffed and willing to provide it. Make sure your hospice agency will do continuous care in your home if you might suddenly require it.
Compounding Pharmacy – A compounding pharmacy is one that is able to mix and prepare personalized medicines on site based on a physicians exact orders. Some hospice patients may benefit greatly from a unique combination of medications.
DNR (Do Not Resuscitate) – DNR orders tell a doctor, healthcare providers, or emergency personnel to not give resuscitative measures (CPR) if a person’s heart and / or breathing stops. Some hospice agencies may require a DNR order as a condition of admission into their services.
EOL (End-of-Life Care) – End-of-life care is a general term that describes compassionate care given during advancing terminal illness.
Home Health Aide – A home health aide is a person who cares for people in their home and assists with tasks such as bathing, dressing, food preparation, light housekeeping, and errands. Having the support of a home health aide helps people to stay in their homes longer. In hospice care, home health aides visit intermittently but are not there around the clock.
Hospice – Hospice is a “service” brought to where ever the person calls “home’. It is a “philosophy of care” that is deeply respectful and attuned to the special needs of the dying. Hospice addresses the needs of the whole person, mind, body, and spirit. Their compassionate mission is also inclusive of the family and other loved ones throughout the entire dying process. Their involvement continues afterwards with bereavement care for the survivors.
Hospice Agency – A hospice agency (also known as a “hospice provider”) is a healthcare organization that offers a complete array of medical hospice care services to terminally ill people no matter where they live. A hospice agency may be owned independently, by a hospital, a nursing home, or as part of a national corporate franchise. Make sure your hospice agency is Medicare certified and licensed by the state of Pennsylvania.
Hospice Provider – * See hospice agency…
Hospice Residence – A hospice residence is a place to live and receive 24 hour supervision, care, companionship, and emotional and spiritual support for end-of-life care. It is an alternative to nursing homes if the person can no longer stay, or wants to be, in their own home. It is sometimes called a hospice house. None of our 13 hospice providers offers residential care in our local York community.
Hour of Hope – An Hour of Hope gathering is a way to educate our community about the vision and mission of Pappus House. This gathering can take place in people’s homes or in a larger venue, such as a social, church, or business club. A forty-five minute presentation is given followed by a question and answer period. We welcome any opportunity to share our mission with the community and enlarge our circle of support.
In-Patient Hospice Facility – An in-patient hospice facility or unit is a place to care for people who are receiving hospice care and need extra attention and medical interventions for symptom management that cannot be given in the home-setting. It is for acute short-term care and often the person is able to return back home. In-patient hospice care can be provided in a hospital, a nursing home, or a free standing in-patient hospice facility.
Interdisciplinary Services – Interdisciplinary services are combined sources of help that are available when receiving hospice care. Although the professional roles may be different, the entire hospice care team is unified in their approach with meeting the unique needs of each of their patients. The interdisciplinary service team includes nurses, home health aides, a social worker, grief counselors, chaplains, physical, occupational, or speech therapists, and a physician.
LPN (Licensed Practical Nurse) – A licensed practical nurse is a nurse who has received special training and is licensed after passing a state licensing exam. They care for patients under the supervision of a registered nurse or a physician.
NHPCO – NHPCO stands for the National Hospice and Palliative Care Organization located in Alexandria, VA. It is the largest non-profit membership organization representing hospices and palliative care programs and people in the United States. Their mission is to improve end-of-life care and expand access to hospice services. Their website is an excellent resource to refer to. Visit the website: www.nhpco.org.
Nursing Home – A nursing home is a licensed medical facility that offers comprehensive skilled nursing care for people needing 24 hour monitoring and medical assistance. Many people live in nursing homes because they can no longer live alone at home, have advancing disease and infirmity, or are recovering from a traumatic injury. They are licensed by the Pennsylvania Department of Health.
Palliative Care – Palliative care is providing comfort measures and interventions aimed at easing symptoms and distress at “any stage of any illness.” Specially trained and certified physicians and nurses offer additional ways of managing and coping with advancing chronic illness so that the highest quality of life for the individual can be preserved. Palliative care is not only for people receiving hospice care or those having a cancer diagnosis.
Personal Care – Personal care describes assistance that is given when a person has difficulty, or can no longer manage their own needs for hygiene, safety, food, and shelter.
Plan of Care – A plan of care is a set of individualized goals and directives put into a written document for each and every patient that can be revised as needed. A plan of care is developed after assessing the physical, emotional, and spiritual needs of the person and then determining the most helpful comprehensive course of action. It is used to guide and evaluate the care. All of the caregivers align themselves with this plan in accordance with the resident’s preferences and wishes. A plan of care is developed by the hospice provider.
RN (Registered Nurse) – A registered nurse is one who has graduated from an accredited program, passed a state examination board, and is both registered and licensed to practice nursing in their state.
Social Model Hospice Home – Social model hospice home is a relatively new and developing term in our culture. Simply put, a social model hospice home provides a “warm safe home to live in” and a “loving family to belong to” at the end-of-life when living at home is no longer an option. It is created by the community for the community and is open to all people. Our community home for end-of-life care in York will be an example of a social model hospice home.
The Conversation Project – The Conversation Project is a helpful guide for people wanting to initiate a dialogue between their loved ones concerning end-of-life care. Suggestions and support are offered on this website to address the myths, fears, and resistances surrounding the last stages of life. Having the courage to begin the conversation is the first step in drawing families closer towards sharing what is most meaningful and enduring between them when it matters most. Visit the website: www.theconversationproject.org
The Five Wishes – The Five Wishes is a booklet and legal document that can be downloaded from the internet. It is a personalized statement of how a person wants to be cared for if seriously ill. The questions are easy to understand and add thought and depth when forming a living will. It is a document that the family can refer to and honor at the end of life regarding their loved one. Visit the website: www.agingwithdignity.org