The Internet is an invaluable source of information. These links can connect you
with helpful resources. We are constantly researching new sources
of information and other web sites relating to our mission. Below you will find
links to information on (click on topic):
Advance Directives
ALS - Amyotrophic Lateral Sclerosis ("Lou Gehrig's disease")
Grief and Bereavement Support
Healthcare
Hospice Resources
HIPAA and Other Technical Topics
E-mail Encryption Systems
Health Insurance Portability and Accountability Act (HIPAA)
Health Information Technology (HIT)
Patient Data Vault (PDV)
Alternative Therapies in Healthcare
Complementary and Alternative Medicine (CAM)
Everflowing - Training in Touch Techniques
Hospice Caregiver Resources
Caregiver Resource Center
Children's Healthcare Topics
Children's Cancer Support Organizations
Children's Healthcare
Children's Hospice
Family Support for the Loss of a Child
Grief and Bereavement Support
Volunteer Programs Supporting Families - Hannah's Friends
Hospice Related Education and Associations
Hospice Education & Spiritual Care
Professional Hospice Organizations
Advance Directives
http://www.uslivingwillregistry.com/
- The U.S. Living Will Registry is a privately held organization
that electronically stores advance directives, organ donor information and emergency
contact information, and makes them available to health care providers across the
country 24 hours a day through an automated system. Preparing an advance directive
involves more than simply filling out a form. The time you spend thinking about
the kind of care you want, or don't want, and discussing your wishes with your family
and loved ones is much more meaningful than simply checking off boxes on a form.
The written document is a good way to memorialize and record your thoughts and choices,
but it is no substitute for time spent discussing those choices with your loved
ones.
http://www.choicesbank.org
- The Choices Bank, the first community-based repository to make advance
directives available anytime. This is a free community service. There is no charge
for depositing your advance directive, viewing it, printing it, or for depositing
revised versions of it.
ALS - Amyotrophic Lateral Sclerosis ("Lou
Gehrig's disease")
http://www.alsa.org/ - The ALS
Association (ALSA) is the only national not-for-profit health organization
dedicated solely to the fight against ALS. ALSA covers all the bases - research,
patient and community services, public education, and advocacy - in providing help
and hope to those facing the disease. The mission of The ALS Association (ALSA)
is to find a cure for and improve living with amyotrophic lateral sclerosis..
http://www.extrahands.org/
- Extra Hands for ALS is a national voluntary service charity assisting people
with ALS, also called Lou Gehrig's disease. Extra Hands is expanding nationally
and now operates in many cities in the United States. Through Extra Hands for ALS,
high school and college students volunteer to help people with ALS and their families
by doing chores and errands or just providing company for the homebound. Students
also organize and participate in ALS public awareness events designed to teach their
peers and communities about the disease.
Grief and Bereavement Support
http://opentohope.com/ - the
Open To Hope Foundation was created to help those who have suffered a loss
to cope with their pain and find hope for the future. This site has a wealth of
information on grief, including a radio show hosted by Dr. Gloria Horsley, the
Founder and President of the Board for the Open to Hope Foundation and an internationally
known grief expert, psychotherapist, and bereaved parent.
http://compassionatefriends.org/
- the Compassionate Friends organization assists families toward the positive
resolution of grief following the death of a child of any age and to provide information
to help others be supportive. Compassionate Friends is a national nonprofit, self-help
support organization that offers friendship, understanding, and hope to bereaved
parents, grandparents and siblings. There is no religious affiliation and there
are no membership dues or fees.
http://www.grief-recovery.com/index.html
- the Grief Recovery Institute is an internationally recognized authority
that provides programs for The Compassionate Friends, The National SIDS Foundation,
The National AIDS Network, The University of California at Irvine, Chapman University,
and many others. This site includes books and articles that are very helpful to
those who have just experienced the death of a loved one.
http://www.healthadministration.org/resources/health-care-library-hospice-information-and-resource-guide/
- Health Care Library: Hospice Information and Resource Guide is a good comprehensive
collection of resources relating to end-of-life care for adults, children as well
as information for caregivers and the bereaved.
Healthcare
https://www.visioncenter.org/blog/national-grants-vision-care/
- Millions of Americans have vision impairment and can’t pay for the help they need. In the United States,
tons of grants are available for Vision Care. This guide is entirely free and includes supportive tools such as:
1) The different types of grants for visions care. 2)Find out who is eligible and where to look to find them.
http://www.healthadministration.org/resources/health-care-library-hospice-information-and-resource-guide/
- Health Care Library: Hospice Information and Resource Guide is a good comprehensive
collection of resources relating to end-of-life care for adults, children as well
as information for caregivers and the bereaved.
http://www.sachealthdecisions.org
- Sacramento Healthcare Decisions is an organization focusing on educating
the public on end-of-life issues.
http://www.caringinfo.org/i4a/pages/index.cfm?pageid=1
- Partnership for Caring: America's Voices for the Dying is a national nonprofit
organization that partners individuals and organizations in a powerful collaboration
to improve how people die in our society. Among other services, Partnership for
Caring operates the only national crisis and information hotline dealing with end-of-life
issues and provides state-specific living wills and medical powers of attorney.
Hospice Resources
https://www.caring.com/senior-care/hospices/
- Hospice care is for people who can no longer benefit from regular medical treatment and are likely in their
final months of life.
Instead of continuing to try curing or delaying the fatal disease or condition,
hospice ends curative treatment altogether. Instead, its goal is to control pain and other symptoms and
make the patient’s last stretch of life as comfortable as possible. This is known as palliative care,
which is often part of hospice care but isn’t the same thing as hospice care. Patients who are still
receiving aggressive curative treatments can also receive palliative care to address pain or other issues
of comfort during that time.
Hospice can result in a significant improvement in the patient’s quality of life with a focus on the person
rather than the disease.
Hospice care can be received at home; someone can also receive this end-of-life care in a hospital, nursing
home or private hospice facility. To qualify for care, a patient must typically be diagnosed with a medical
condition likely to cause death within six months or less.
Hospice care isn’t necessarily continuous, and a patient may switch into and out of it as a medical condition
improves or deteriorates. For example, if a patient is in hospice care and goes into remission — a period of
relief from the symptoms of an illness — the hospice care can be stopped and resumed again if the symptoms
reoccur or the condition gets worse.
https://www.caring.com/caregivers/end-of-life-care/
- If you have an elderly or ailing loved one, you may be hesitant to bring up end-of-life care planning
for fear of causing unnecessary stress or anxiety. Though it’s an unpleasant, often heartbreaking task,
having this conversation can help your loved one feel more confident that their preferences will be known
and respected in their final days. They may even appreciate that you’ve initiated the conversation. In 2018,
The Conversation Project released a national survey on end-of-life care conversations that found 53% of
Americans feel relieved when another person makes the first move in broaching the topic.
According to the survey’s data, the number of families that have participated in such conversations
increased by 5 percent from 2013 to 2018. Even though that number is increasing, it is still only at 32%,
which means almost 7 in 10 families don’t have frank discussions about end-of-life care.
If you currently need to start talking to a loved one about end-of-life care, you may feel overwhelmed,
and that feeling can keep you from having the discussion. This guide will offer advice on how to talk
about end-of-life care while simultaneously providing empathy and support so you feel prepared to have
these important conversations with your loved ones.
http://www.healthadministration.org/resources/health-care-library-hospice-information-and-resource-guide/
- Health Care Library: Hospice Information and Resource Guide is a good comprehensive
collection of resources relating to end-of-life care for adults, children as well
as information for caregivers and the bereaved.
http://www.growthhouse.org/hospice.html
- this is an excellent source of information on a variety of topics provided by
Growth House.
http://www.lifes-end.org/
- The Missoula Demonstration Project, now known as Life's End Institute (LEI)
, is an innovative community project that is working to improve how people
experience dying, caregiving, death, and bereavement. This site provides resources
for those who wish to work toward the improvement of end-of-life care. LEI
has helped over 200 communities nationwide in their own efforts to improve end-of-life
care.
E-mail Encryption Systems
http://www.threadthat.com/
- ThreadThat provides tools and resources that will enable you to experience
HIPAA-compliant communications with the highest possible level of reliable, anonymous,
secure, private and confidential e-mail communications. This service encrypts all
text and associated attachments for a completely secure communication.
Health Insurance Portability and Accountability Act (HIPAA)
http://www.hhs.gov/ocr/privacy/hipaa
- the HIPAA Privacy Rule establishes national standards to protect individuals’
medical records and other personal health information and applies to health plans,
health care clearinghouses, and those health care providers that conduct certain
health care transactions electronically. The Rule requires appropriate safeguards
to protect the privacy of personal health information, and sets limits and conditions
on the uses and disclosures that may be made of such information without patient
authorization. The Rule also gives patients rights over their health information,
including rights to examine and obtain a copy of their health records, and to request
corrections.
Health Information Technology (HIT)
http://healthit.hhs.gov/ - the Health Information
Technology for Economic and Clinical Health (HITECH) Act provides a mandate to
the Centers for Medicare & Medicaid Services (CMS) to provide a reimbursement incentive
for physician and hospital providers who are successful in becoming “meaningful
users” of an electronic health record (EHR). These incentive payments begin in 2011
and gradually phase down. Starting in 2015, providers are expected to have adopted
and be actively utilizing an EHR in compliance with the “meaningful use” definition
or they will be subject to financial penalties under Medicare. The (HITECH) Act seeks to improve patient
care and make it patient-centric through the creation of a secure, interoperable
nationwide health information network. A key premise is that information should
follow the patient, and artificial obstacles -- technical, bureaucratic, or business-related
-- should not be a barrier to the seamless exchange of information. Therefore, secure
information exchange needs to occur across institutional and business boundaries
so that the appropriate information is available to improve coordination, efficiency,
and quality of care. The HITECH grants are specifically designed to work together
to provide the necessary assistance and technical support to providers, enable coordination
and alignment within and among states, establish connectivity to the public health
community in case of emergencies, and assure the workforce is properly trained and
equipped to be meaningful users of EHRs.
Patient Data Vault (PDV)
http://www.patient-data-vault.com/pdvAbout
- the Patient Data Vault (PDV) is a hospice volunteer management tool that
provides a secure place to electronically store and retrieve patient data over the
Internet using security measures that comply with the requirements of the HIPAA
Security Rule. The PDV includes a complete form library that will satisfy all the
needs you may have for volunteer communications. All data that is stored in the
PDV is encrypted and can only be accessed by the hospice that reposited the data.
The greatest benefit of the PDV is that it permits volunteer coordinators and volunteers
to efficiently communicate patient data between themselves and other hospice staff
in manner that meets all of the stringent requirements mandated by HIPAA Privacy
rules.
Alternative Therapies in End-of-Life Care
http://nccam.nih.gov/
- the National Center for Complementary and Alternative Medicine (NCCAM)
is the Federal Government's lead agency for scientific research on complementary
and alternative medicine (CAM). They are one of the 27 institutes and centers that
make up the National Institutes of Health (NIH) within the U.S. Department of Health
and Human Services. NCCAM sponsors and conducts research using scientific methods
and advanced technologies to study CAM. CAM is a group of diverse medical and health
care systems, practices, and products that are not presently considered to be part
of conventional medicine.
http://www.everflowing.org/
- Everflowing, founded by Irene Smith, is an educational outreach program
dedicated to teaching specific touch skills as an intergral component to end-of-life
care. The Everflowing training program provides educational resources and training
to bodyworkers, healthcare professionals and hospice volunteers.
Caregiving Resource Center
https://www.caring.com/caregivers/
- Family caregivers tend to the health and well-being of their aging parents,
spouses and other loved ones, often while juggling careers, children and other
obligations. This link provides info on nearly 100 key resources to help you better navigate caregiving.
https://www.caring.com/caregivers/end-of-life-care/
- If you have an elderly or ailing loved one, you may be hesitant to bring up end-of-life care planning
for fear of causing unnecessary stress or anxiety. Though it’s an unpleasant, often heartbreaking task,
having this conversation can help your loved one feel more confident that their preferences will be known
and respected in their final days. They may even appreciate that you’ve initiated the conversation. In 2018,
The Conversation Project released a national survey on end-of-life care conversations that found 53% of
Americans feel relieved when another person makes the first move in broaching the topic.
According to the survey’s data, the number of families that have participated in such conversations
increased by 5 percent from 2013 to 2018. Even though that number is increasing, it is still only at 32%,
which means almost 7 in 10 families don’t have frank discussions about end-of-life care.
If you currently need to start talking to a loved one about end-of-life care, you may feel overwhelmed,
and that feeling can keep you from having the discussion. This guide will offer advice on how to talk
about end-of-life care while simultaneously providing empathy and support so you feel prepared to have
these important conversations with your loved ones.
Children's Cancer Support Organizations
http://www.hopeforcancerkids.org/ - the Children's Cancer Community
(CCC), a collaborating partner on Hannah's Friends, has provided emotional
& financial support to children diagnosed with cancer and their families in the
North Bay area of Northern California for over 10 years. All services are provided
at no cost to the children with cancer and their families. CCC regularly awards Memorial Scholarships
to cancer survivors and their siblings and holds three monthly family support in
the North Bay.
Children's Healthcare
http://www.childrenshospitals.net
- the National Association of Chidlren's Hospitals and Related Institutions (NACHRI)
promotes the health and well-being of children and their families through support
of children's hospitals and health systems that are committed to excellence in providing
health care to children. It does so through education, research, health promotion
and advocacy. On this site you may search for children's hospitals by geographic
region, programs, services, research, and more.
http://www.childrensoncologygroup.org/
- the Children's Oncology Group is a National Cancer Institute-supported
clinical trials cooperative group devoted exclusively to childhood and adolescent
cancer research. Their mission is to cure and prevent childhood and adolescent cancer
through scientific discovery and compassionate care.
http://www.hopkinschildrens.org/
- the Johns Hopkins Children's Center offers one of the most comprehensive
pediatric medical programs in the country, from performing emergency trauma surgery,
to finding causes of and treatments for childhood cancers, to delivering a child’s
good bill of health. The Harriet Lane Compassionate Care Program
at the Johns Hopkins Children's Center provides palliative care, the comprehensive
management of the physical, psychological, social and spiritual needs of children
with life-limiting conditions and their families.
http://www.healthadministration.org/resources/health-care-library-hospice-information-and-resource-guide/
- Health Care Library: Hospice Information and Resource Guide is a good comprehensive
collection of resources relating to end-of-life care for adults, children as well
as information for caregivers and the bereaved.
Children's Hospice
http://www.hospicecc.org/ProgramsServices/ComfortforKids
- the Comfort for Kids program provides comprehensive, in-home healthcare
and support for San Francisco Bay Area children with life-limiting illnesses. With
ten years of experience, Comfort for Kids is respected as a leader in providing
pediatric palliative and hospice care in Northern California.
http://www.chionline.org/
- the Children's Hospice International (CHI), a non-profit organization,
was founded in 1983 to promote hospice support through pediatric care facilities;
to encourage the inclusion of children in existing and developing hospice, palliative,
and home care programs; and to include the hospice perspectives in all areas of
pediatric care, education, and the public arena. CHI provides education, training
and technical assistance to those who care for children with life-threatening conditions
and their families.
http://www.georgemark.org/
- the George Mark Children's House is the first freestanding children's respite
and end of life care facility in the United States. The House, located in San Leandro,
California, offers respite support (round-the-clock), transitional care, and end
of life care for children with life limiting or terminal illnesses. All care is
informed by the principles of palliative care. Additional support services are available
to all family members. Services are provided regardless of a family's ability to
pay.
Family Support for the Loss of a Child
http://www.attitudinalhealing.org
- the International Center for Attitudinal Healing helps people support one another to
overcome conflict, fear and feelings of isolation that can accompany a life crisis,
and encourages a choice of peace and love. They offer a variety of services such
as giving emotional and spiritual support to family members of a life-threatened
person, visiting people who are confined to their homes or the hospital because
of an illness, and offering loss and grief support.
http://www.thefamilylink.com
- the Family Link is is a nonprofit guest house for families who are visiting
people with aids or other life threatening illnesses in the San Francisco area.
http://compassionatefriends.org/
- the Compassionate Friends organization assists families toward the positive
resolution of grief following the death of a child of any age and to provide information
to help others be supportive. Compassionate Friends is a national nonprofit, self-help
support organization that offers friendship, understanding, and hope to bereaved
parents, grandparents and siblings. There is no religious affiliation and there
are no membership dues or fees.
Grief and Bereavement Support
http://opentohope.com/ - the
Open To Hope Foundation was created to help those who have suffered a loss
to cope with their pain and find hope for the future. This site has a wealth of
information on grief, including a radio show hosted by Dr. Gloria Horsley, the
Founder and President of the Board for the Open to Hope Foundation and an internationally
known grief expert, psychotherapist, and bereaved parent.
http://www.grief-recovery.com/index.html
- the Grief Recovery Institute is an internationally recognized authority
that provides programs for The Compassionate Friends, The National SIDS Foundation,
The National AIDS Network, The University of California at Irvine, Chapman University,
and many others. This site includes books and articles that are very helpful to
those who have just experienced the death of a loved one.
Alternative Therapies in Pediatric Palliative Care
http://nccam.nih.gov/
- the National Center for Complementary and Alternative Medicine (NCCAM)
is the Federal Government's lead agency for scientific research on complementary
and alternative medicine (CAM). They are one of the 27 institutes and centers that
make up the National Institutes of Health (NIH) within the U.S. Department of Health
and Human Services. NCCAM sponsors and conducts research using scientific methods
and advanced technologies to study CAM. CAM is a group of diverse medical and health
care systems, practices, and products that are not presently considered to be part
of conventional medicine.
Volunteer Programs Supporting Families
- Hannah's Friends
http://www.hannahsfriends.org
- Hannah's Friends volunteers are compassionate individuals from a family's local
community who are specially trained to serve the unique yet wide-ranging needs of
families that are coping with a child’s life-threatening illness. Our volunteer
force is comprised of individuals from a variety of disciplines, from young adults
to a core team of healthcare professionals skilled in dealing with the multitude
of issues families may face on their journey of caring for a child with a life-threatening
illness.
Hospice Education & Spiritual
Care
http://mettainstitute.org/index.html
- The Metta Institute is a new organization and outgrowth of the Zen Hospice
Project (ZHP), nationally recognized as an innovative model in the movement to improve
end-of life care. The Director, Frank Ostaseski helped form ZHP in 1987 and guided
the program for 17 years. Currently, Metta's primary program is
The End-of-Life Care Practitioner Program, first developed in 2002 as a
project of ZHP's Institute on Dying. The goal of this innovative training is to
establish a national network of educators, advocates and guides for those facing
life-threatening illness and the individuals and systems that serve them.
Professional Hospice
Organizations
http://www.hospicefoundation.org/
- the Hospice Foundation of America is a not-for-profit organization that
provides leadership in the development and application of hospice and its philosophy
of care. Through programs of professional development, research, public education
and information, Hospice Foundation of America assists those who cope either personally
or professionally with terminal illness, death, and the process of grief.
http://www.nhpco.org/ - the
National Hospice & Palliative Care Organization (NHPCO) is the largest
nonprofit membership organization representing hospice and palliative care programs
and professionals in the United States. The organization is committed to improving
end of life care and expanding access to hospice care with the goal of profoundly
enhancing quality of life for people dying in America and their loved ones.
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