Below, you will find links to informative resources. If you have additional resources you would like to suggest, please contact us at firstname.lastname@example.org and reference “resources.”
Power of Attorney for Health Care
Power of Attorney (POA) for health care is a form that lets someone choose a person to make health care decisions for you when the principal cannot make decisions for him or herself. The person given the power of attorney is referred to as the agent and the person granting the authority is referred to as the principal. The agent is usually a spouse, a close friend, or a trusted relative.
National Healthcare Decisions Day (NHDD)
NHDD works to inspire, educate and empower the public and providers about the importance of advance care planning.
Practitioner Orders for Life-Sustaining Treatment (POLST)
The vision of POLST is to allow people with life-limiting illnesses to state their preferences regarding end-of-life care, and be assured that those wishes will be honored by medical professionals across all settings. The Illinois POLST form is a vital component of advance care planning for the people of Illinois and is in accordance with Illinois statutes.
The National Consumer Voice for Quality Long-Term Care
The Consumer Voice is a leading national voice representing consumers in issues related to long-term care, helping to ensure that consumers are empowered to advocate for themselves. The Consumer Voice is a primary source of information and tools for consumers, families, caregivers, advocates and ombudsmen to help ensure quality care for the individual.
Illinois Association of Long-Term Care Ombudsmen
Long Term Care Ombudsmen help when residents or family members have questions and concerns about: the rights of older consumers receiving long-term care; quality of care or treatment from a long-term care service provider; appeals regarding transfers, discharges, discontinuance or changes in services; and billing and charges, including those covered by Medicare and Medicaid.
Greater Illinois Pediatric Palliative Care Coalition (GIPPCC)
GIPPCC is an independent, statewide coalition of Illinois clinicians, families, institutions, and organizations seeking to improve access to quality community-based pediatric palliative and hospice care, education, and research. GIPPCC collaborates with its members to educate, advocate for, and partner with consumers, healthcare providers and the community in order to improve and increase access to palliative care and bereavement services for children and families throughout Illinois.
National Hospice and Palliative Care Organization
As the principle resource, leader, and voice of the hospice and palliative care community, the NHPCO promotes and enhance access to, and the quality of, hospice and palliative care. The NHPCO focuses on leading and mobilizing social change for improved care at the end of life to aid individuals and families facing serious illness, death and grief in experiencing the best that humankind can offer.
Center to Advance Palliative Care (CAPC)
The CAPC is a national, member-based organization, that provides hospitals, health systems, hospices, payers and other health care organizations with the tools, training, technical assistance and metrics needed to support the successful implementation and integration of palliative care. The CAPC promotes public awareness of palliative care through Get Palliative CARE. This site provides: information for the public on adult and pediatric palliative care; a glossary and answers to some frequently asked questions; and directions on how to get palliative care.
Comfort Hospice and Palliative Care
Comfort Hospice offers hospice care in the Chicago area and has been providing compassionate care and support to the seriously ill and their families since 2011. Comfort serves Chicago and the north suburbs, northwest suburbs, west suburbs and south suburbs.
Seasons Hospice and Palliative Care
Seasons Hospice & Palliative Care is a community-based organization on an ongoing mission to find creative solutions which add quality to life. Seasons believes in the patient/family focus of hospice care, recognizes that individuals and families are the experts in their own care, and engenders hope in the lives of its patients and their family members.
Rainbow Hospice and Palliative Care
Rainbow Hospice and Palliative Care, one of the oldest and largest non-profit organizations serving Chicagoland, provides comfort and dignity for individuals dealing with advanced, complex illness. Rainbow extends support to bereaved loved ones of Rainbow patients and community members in both the greater Chicagoland area and in the Champaign-Urbana area. Rainbow Hospice and Palliative Care currently serves the following counties in Illinois: Cook, DuPage, Kane, Lake, McHenry, Will, Champaign, DeWitt, Douglas, Ford, Iroquois, Piatt and Vermillion.
JourneyCare is the combined organization of Horizon Hospice & Palliative Care, JourneyCare, and Midwest Palliative & Hospice CareCenter. The three organizations came together in 2015. The organization helps people facing serious illness and their families live life to the fullest on their own terms, with dignity and without pain. Services are provided for patients and families across 10 counties in the greater Chicago area and northern Illinois.
Hospice Patients Alliance (HPA)
HPA’s mission is to promote excellence in end-of-life care that relieves suffering at the end-of-life while allowing a natural death in its own timing. HPA works with patients, families and members of the professional health care community to improve conditions for patients and staff in hospices, palliative care units and elsewhere within our society. HPA views assisted-suicide and forms of euthanasia as incompatible with real hospice care that allows for the unfinished business at the end-of-life, including the healing of relationships within the family and spiritual growth at the end-of-life.
Compassion & Choices (C&C)
C&C works to protect and expand end-of-life options — and to ensure healthcare providers honor and enable patients’ decisions about their care. Compassion & Choices seeks to: empower people with information and tools, including a free consultation program, to receive healthcare that is consistent with their values and priorities as they approach the end of life; advance policies that allow people to make fully informed decisions about their healthcare, such as improving hospice and palliative care and ending unwanted medical treatment; and authorize and implement medical aid in dying to allow mentally capable adults in their final weeks or months of a terminal disease to advance the time of death and end unbearable suffering. Final Options Illinois is a Chicago affiliate.
Life Matters Media (LMM)
Life Matters Media aims to be the premiere provider of information, resources and support for all involved in end of life decision-making. Through fostering better communication, LMM seeks to empower the ill, aged, caregivers, surrogates and medical providers to navigate end-of- life phase with confidence and dignity. LMM provides a platform for the sharing of information, resources, communication and experiences of those fully living their final days.
Spending at the End of Life
Of the 2.6 million people who died in the U.S. in 2014, 2.1 million, or eight out of 10, were people on Medicare, making Medicare the largest insurer of medical care provided at the end of life. Spending on Medicare beneficiaries in their last year of life accounts for about 25% of total Medicare spending on beneficiaries age 65 or older. The fact that a disproportionate share of Medicare spending goes to beneficiaries at the end of life is not surprising given that many have serious illnesses or multiple chronic conditions and often use costly services, including inpatient hospitalizations, post-acute care, and hospice, in the year leading up to their death. (Published by the Kaiser Family Foundation, July 14, 2016.)
Final Acts Project
The Final Acts Project is a community-based health education initiative that serves as a catalyst to stimulate end-of-life discussions, planning, and legacy-building through the theater, creative arts and the humanities.
Hospice Election Statements and Certifications of Terminal Illness
The HHS Office of Inspector General (OIG) stated that “It is important that hospices provide complete and accurate information in election statements so that beneficiaries and caregivers can make informed care choices. It is also critical that physicians fulfill their role and complete certifications of terminal illness as required. These certifications are an important safeguard in ensuring that beneficiaries are appropriately receiving hospice care.” In its analysis, the OIG looked at Medicare hospice election statements and found in more than one third of the general inpatient care (GIP) stay election statements that the statements did not mention the required information that the beneficiary was waiving coverage of certain Medicare services by electing hospice care or that hospice care is palliative rather than curative. The OIG also found that physicians did not meet requirements in 14% of the general inpatient care (GIP) stay certifications when certifying that the beneficiary was terminally ill and appeared to have limited involvement in determining that the beneficiary was appropriate for hospice care. (September, 2016)