Hospice Resource Center – Here are organizations that can provide a range of information and tools related to hospice care.
Medicare’s official website for Hospice information
Virginia Department of Health’s official website for Hospice information
10 Facts You Need to Know About Hospice
Caring Connections, a consumer and community outreach site with educational materials for all aspects of end of life care.
The National Hospice & Palliative Care Organization, the largest non-profit membership organization representing U.S. hospice and palliative care programs and professionals. Developing public and professional educational programs and materials for professionals and consumers.
National Board for Certification of Hospice & Palliative Nurses, promoting a certification process that advocates quality in the provision of end of life care for RN, LPN, NA, APN.
American Board of Hospice and Palliative Medicine, establishing and implementing standards for certification of physicians practicing hospice and palliative medicine.
Education in Palliative and End of Life Care, educating health care professionals, and advancing clinical competencies in palliative care.
The Center to Advance Palliative Care (CAPC), providing health care professionals with the tools, training, and technical assistance necessary to start and sustain successful palliative care programs in hospitals and other health care settings. Located at Mount Sinai School of Medicine.
Aging with Dignity, providing practical information, advice, and advance directives to ensure that wishes at the end of life will be respected.
A resource for data on death and dying. EDELE has identified websites with useful data about decedents, dying, and end of life experiences. The site offers several ways to search the database of records.
A non-profit, grassroots foundation promoting hospice philosophy of care, informing the public about end of life options, and training health care workers and the families they serve in issues related to loss, spirituality and psychosocial issues.
A national coalition to improve care near the end of life. The goal of the coalition is to bring death-related issues out in the open and help individuals and organizations pursue better ways to care for the dying.
The Connecticut Association for Healthcare at Home. The united voice and leading advocate for homecare and hospice providers throughout Connecticut.
An initiative of the ABIM Foundation, Choosing Wisely is focused on encouraging physicians, patients and other health care stakeholders to think and talk about medical tests and procedures that may be unnecessary, and in some instances can cause harm.
Hospice: What You Need to Know About End-of-Life Care
Though the word “hospice” might trigger the notion of giving up on life, the goal is to give a person the best possible quality of life — emotional, physical and spiritual comfort. And studies have shown that patients who chose hospice care lived almost a month longer than similar patients who did not choose hospice.
“Hospice is an interdisciplinary model of care. It’s holistic, person-centered and aligned with individual needs,” says Edo Banach, president and chief executive of the National Hospice and Palliative Care Organization in Alexandria, Virginia.
Older patients are using end-of-life care
Nearly 3 of 5 people who received hospice care in 2017, the most recent data available, were women. Nearly two-thirds were 80 years old or older.
• Younger than 65: 5.1%
• 65 to 69: 7.4%
• 70 to 74: 10.3%
• 75 to 79: 12.9%
• 80 to 84. 16.7%
• 85 or older: 47.5%
Hospice also offers a needed break and counseling for the family, in particular for a family caregiver.
Medicare and Medicaid typically cover the full cost of hospice services, and private insurance policies generally follow the Medicare model, says Theresa Forster, vice president for hospice policy for the National Association for Home Care & Hospice in Washington, D.C. In 2016, Medicare covered more than 90 percent of all the days patients spent in hospice.
“Regarding Medicare or Medicaid, virtually anything that the patient needs for terminal illness which is determined to be appropriate is going to be free of charge,” Forster says. “Once you go into hospice under your plan of care, you will receive it.”
Who is a hospice candidate?
A doctor must certify that a patient meets both of these requirements:
1. A fatal medical condition for which the patient is not seeking curative treatment
2. An expected prognosis of six months or less
That may change soon.
“You shouldn’t give up curative treatment in order to get hospice care, and that’s being tested right now through a demonstration from Centers for Medicare & Medicaid Services,” Banach says. “In the future we will be in a better place with fewer limitations on hospice.”
Talk far in advance
Ahead of time, perhaps even years before a decision is necessary, talk with family members about their wishes for the end of their lives. Put it all in writing, perhaps in such legal documents as an advance directive, advance care planning or a living will.
“It is a huge comfort for a family caregiver to know what a loved one would want,” says Amy Goyer, AARP family and caregiving expert.
Most hospice care is provided at the loved one’s home, whether that is a private residence, an assisted living facility or a nursing home. Hospice also could be provided at the caregiver’s home, a hospital or a freestanding hospice facility.
Members of a multidisciplinary hospice team work together to develop a care plan that centers on a patient’s medical, psychological and spiritual support. The team members can include these professionals:
- The patient’s personal physician
- A hospice physician or medical director
- Clergy or other spiritual counselors
- Hospice aides
- Occupational, physical or speech therapists
- Social workers
- Trained volunteers
Roles of caregiver, hospice workers
Typically, a family member serves as the primary caregiver and helps make decisions for the loved one when appropriate. The caregiver is engaged during a loved one’s battle against disease and later during hospice.
“What’s hard for the family caregiver is that the person has been in the mode of taking care of the patient for so long, of searching out and researching the options, and finding the best treatments and keeping that positive hope alive,” Goyer says. “Now you are flipping and not fighting that fight anymore, but you are focusing instead in fighting the fight for their comfort and following their wishes.”
Hospice workers do help in that fight with these kinds of services:
- Assisting the patient and family members with the emotional, psychosocial and spiritual aspects of dying
- Having a hospice doctor make house calls or driving the patient to doctors’ appointments
- Helping with bathing and dressing, chores, food preparation and laundry
- Instructing family on how to care for the loved one
- Managing pain and other symptoms
- Providing general companionship, which can give a family caregiver time to run quick errands or do other work around the house
Also, when your loved one dies, hospice workers can provide counseling for surviving family and friends.
How to find high-quality care
A caregiver should research hospice agencies and identify the top choice or choices well before this care is needed, experts say.
“It’s a much better idea to do diligent homework and make some decisions while things are calm,” Banach says.
Ask for recommendations from doctors, nursing homes, family members and anyone who has knowledge of hospice care.
Look for accreditation through the Accreditation Commission for Health Care, the Community Health Accreditation Partner (CHAP) program or the Joint Commission on Accreditation of Healthcare Organizations.
Visit Hospice Compare on Medicare.gov. All firms listed qualified for Medicare certification by providing 15 core services.
Visit hospice facilities or agencies in person to determine how you feel about the people you meet.
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