Hospice Care in Assisted Living
How Hospice Started
Hospice Care evolved, as we know it today, starting in the fifties (1950's) when a British registered nurse, Cicely Saunders, forced by her lingering health problems to study medical social work. Saunders worked with terminally ill patients and realized the need for deep compassion to help address the fears, worries and concerns of the dying. In her efforts to help the terminally ill, Saunders found that palliative comfort for physical symptoms needed to lessen the physical pain of a terminal illness.
Saunders' work focused on the patient care instead of the terminal disease itself which introduced the 'total pain' management concept. Today, this total care concept is used in hospice care. It includes psychological, spiritual, physical features of comfort and the needs of the patient's family. In the physical pain management aspect, Saunders used a variety of opioids.
In 1967, Saunders opened St. Christopher's Hospice in England. About the same time, while traveling to the United States on tour, she met Florence Wald, dean of Yale School of Nursing. Wald was so impressed with Saunders' work; she joined Saunders on tour to learn the "total patient" concepts. In the early 1970's, Wald established Hospice, Inc. in the U.S.
In the same time, Elisabeth Kubler-Ross, a Swiss psychiatrist began her work in social responses to terminal illness at a Chicago hospital. Kubler-Ross wrote a best-seller on end-of-life titled, On Death and Dying, which influences the medical profession in the United States today.
Hospice Care Today
Hospice is not a place; it is a type of medical care given to the terminally ill patients facing end-of-life events. Its medical care professionals assist patients and families to cope with death, dying and terminal illnesses. These medical professionals, trained in hospice care, continue to deal with end-of-life situations and help patients live with pain and regret, feelings of aloneness, and fear of dying. The philosophy of hospice care today, offers patients a life worth living for as long as possible with family and friends. Those receiving hospice thrive in dignity, purpose, grace and support for their remaining life.
Many nursing homes, healthcare facilities and hospitals offer hospice care on site, also to providing the same palliative care to patients in their home. Many families and patients prefer spending final days in a familiar and loving environment with the support of Hospice staff over an institution.
Role of Hospice Care in Assisted Living
The role that assisted living facilities play in residents' lives during terminal illness and at end-of-life depends on the state. For example, there are some states - Idaho, Mississippi, Montana, and North Dakota - that will not allow hospice services in assisted living facilities. The state law bases this assumption on the fact that most assisted living facilities are not properly equipped to give terminally ill residents the care required, especially as the medical needs intensify. For that reason, assisted living facilities in these states do not offer hospice care.
The South Carolina Department of Health and Environmental Control (DHEC) created a waiver process for individual needs of residents with a focus on hospice care in assisted living settings. How the process plays out; skilled Hospice services that expect to last longer than 14 days are currently not permitted to occur in an assisted living environment. For example, if a resident living in an assisted living community with a diagnosis of Alzheimer's disease needs hospice care, they will relocate to a skilled nursing facility.
If you or a loved one plans to move to an assisted living facility and has a terminal illness diagnosis, it's imperative to understand the end-of-life care terms and provisions. States like Alaska, Arkansas, Florida, Rhode Island, West Virginia and Vermont, allow residents to receive hospice services in an assisted living facility but won't accept new residents who do.
"Assisted living staff may have worked with the resident for years. When the hospice team steps in, a different set of relationships and a different kind of communication becomes necessary," Judi Lund Person, V.P. Compliance leadership for the National Hospice and Palliative Care Organization.
How to Deal with Hospice Care in the Assisted Living Settings
Know what to expect. How much care, if any and what kind of care the assisted living facility can provide? Will you or the loved one be allowed to remain at the facility when end-of-life occurs? Are you given options to hire for hospice care out-of-pocket? Does the facility offer hospice care as extra services? If so, what is the cost? What medical tasks will they perform or not perform?
Will the assisted living facility allow an outside hospice care organization to provide the resident and family with bereavement services? If the service does not offer hospice care, you can hire an outside organization.
What You Need to Know about Hospice
Is the hospice care agency accredited? Here is a list of Accrediting Agencies
Accreditation Commission for Health Care, Inc. Phone: (919) 872-8609
Community Health Accreditation Program Phone: (212) 363-5555 or (800) 669-1656, ext. 242
Joint Commission on Accreditation of Healthcare Organizations Phone: (630) 792-5000
Questions to Ask
- Is this hospice program Medicare certified? Medicare-certified programs have met the minimum federal requirements for patient care and management.
- Does the agency have written statements outlining services, eligibility criteria, costs, and payment procedures, employee job descriptions, malpractice, and liability insurance?
- How many years has the agency been in business and serving the community as a whole? Can the agency provide references from professionals, such as a hospital or community social workers? Ask for contacts and telephone numbers. Talk with these people about their experiences. Also, check with the Better Business Bureau, local Consumer Bureau, or the State Attorney General's office.
- How flexible are its policies on patient care? If the agency inflicts upfront terms and conditions that do not feel comfortable, it is not a good fit. Will the hospice care agency assess the patient to clarify any issues?
- Will they create a care plan? If so, is the plan developed with the patient and family? Are you given a copy of the plan? Read the specific duties, work hours/days, and the name and telephone number of the supervisor in charge. Is the care plan updated as needs change?
- Does the agency require a primary caregiver (family member) to participate? How much responsibility will the family caregiver have? What help can the hospice offer in coordinating and supplementing the family's efforts or filling in around job schedules, travel plans, or other responsibilities? If the patient lives alone, what alternatives can the hospice suggest?
- Who will complete the preliminary evaluation of the patient's home/assisted living facility/nursing home? Does it highlight what the patient can do as in self-care? Does it include consultation with family physicians?
- Does the agency train, supervise, and monitor its caregivers? Ask how often the agency sends a supervisor to the patient's home to review the care being given to the patient. Are the caregivers licensed and bonded?
- Who can you call with questions or complaints? What is the procedure for resolving issues?
- How is payment and billing handled? Get all costs, payment procedures, and billing in writing. Read the agreement carefully before signing. Be sure to keep a copy. What resources does the agency provide to help you find financial assistance?
- How quickly can the hospice begin services? Do they offer specialized services: rehabilitation therapists, pharmacists, dietitians, or family counselors when these could improve the patient's comfort? Does the hospice provide medical equipment or other items that might enhance the patient's quality of life?
- What are the requirements for an inpatient admission? How long can patients stay? What happens if the patient no longer needs inpatient care but cannot return home? What hospitals contract with the agency for inpatient care? What kind of follow-up do they provide?
- Ask to see a copy of the agency's patient's rights and responsibilities information.
Who Pays for Hospice Care?
Hospice care is a benefit covered under Medicare for patients with a prognosis of six months or less. A patient can remain in hospice care beyond six months if a physician re-certifies that the patient is terminally ill.
This benefit covers all services, medications and equipment related to the illness. These include:
- Physician services
- Nursing services
- Home health aides
- Medical appliances, medication, and supplies
- Spiritual, dietary, and other counseling
- Continuous home-care or inpatient care during crisis periods
- Trained volunteers
- Bereavement services
- Social work services
- Inpatient Respite
- 24/7 On-call Support
Almost all states and the District of Columbia offer hospice coverage under Medicaid. Your hospice provider will be able to tell you if you live in a state where the hospice Medicaid benefit exists.
Many private health insurance policies and HMO's offer hospice coverage and benefits.
Hospice services for the military fall under Tricare, a military service member and family benefit.
After seven years of helping her aging parents, Carol Marak has become a dedicated senior care writer. Since 2007, she has been doing the research to find answers to common concerns: housing, aging and health, staying safe and independent, and planning long-term.
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