CaringInfo.org · National Hospice and Palliative Care Organization (NHPCO.org) · Hospice Action Network · National Hospice Fdn. · Hospice Of New Jersey
When facing a serious, life-limiting illness, you want to feel both prepared (so you can make decisions) and present – so that you are mindful of today’s needs. You will want to understand and use the resources available to you, whether you are a patient or caregiver.
Serious illness is a communications challenge for everyone. The doctors use words you don’t understand; there are so many different people to talk with—a cast of thousands in the medical world, those closest to you, friends and family further out, colleagues, neighbors. The entire situation is stressful, and sometimes all the communication just makes it all harder.
Some of the communication is incoming—listening to the doctors, understanding what they are saying and your choices, listening to those close to you, and often listening to interested, well-meaning others. Some of the communication is outgoing—telling the doctors what you and your patient want, sharing your fears, hopes and wishes with those close to you, and providing information to your community. Least acknowledged is the communication you have with yourself.
Both palliative care and hospice care are focused on the needs of the patient and their quality of life, with hospice specifically focused on the period closest to death.
There are medical resources such as palliative care and hospice, financial resources such as Medicare and insurance, legal resources such as advance directives, and personal resources such as bereavement care. There are also many informal supports such as connections with others going through similar experiences. We want to help you navigate all this so you can have the experience that is best for you.