Myth - Hospice means hopeless, it is "giving up".
Truth: Choosing hospice does not mean a death sentence. What hospice does mean is a total change of focus. It means the person is in control: making choices about what is most important in his or her life. Hospice philosophy emphasizes the creative and positive outcomes to be realized by defining and achieving personal goals and by living life as fully as possible.
It is not uncommon for people entering hospice care to experience an improved sense of well being and comfort. This sometimes happens because pain management and symptom control issues are openly discussed and effectively resolved. Sometimes, this sense of well-being is a reflection of the person's sense of control gained from defining her/his goals and from active participation in developing the plan of care.
Living with end-stage disease and dying well takes work. Hospice workers handle that job very well and help people in hospice and their families to have some of the most memorable moments of their lives.
Myth: To be eligible for hospice, I have to be in the final stages of dying.
Truth: Every hospice experience is unique, but one key thing families tell us about hospice is that "we wish we had known about hospice sooner". Hospice team members also know that having more time to work with a person and family means better quality of life. Because the goal of hospice is to achieve the highest quality of life possible, some people may actually live longer than expected without the burden of symptoms and aggressive care.
People on hospice care and their families receive care for an unlimited amount of time, depending upon the course of the illness. There is no fixed limit on the amount of time a person may continue to receive hospice services.
Myth: Hospice is a place where people go to die, I have to leave my home.
Truth: Hospice isn't really about dying. Hospice is about living as well as one can every day we have. It is about adding life, quality of life, to someone's final days, weeks or months. Hospice is a program of services available to the person and her/his loved ones where ever they may be. Most hospice care takes place where the person already lives: in their own home or a family member's, a nursing home, or an assisted living facility.
Myth: Hospice is when there is nothing more a doctor can do.
Truth: Hospice is care designed for people living with a life-limiting illness. There is so much more that can be done to assist individuals and families in living their lives fully, completely, and without pain until the end of their lives.
Myth: Hospice care is only for cancer or AIDS patients.
Truth: More than 50% of people on hospice are diagnosed with conditions other than cancer or AIDS. Anyone with a life-limiting illness can receive hospice care. Heart disease, kidney disease, COPD and dementia are a few of the illnesses that can benefit from hospice services.
Myth: Hospice is the absence, withdrawal or denial of care.
Truth: People who choose hospice receive medical care to control pain and other symptoms. Medical care continues with a holistic approach, honoring the wishes of the individual and explaining choices. All medical care is managed whether it is related to the hospice illness or not. All hospice programs protect the person's right to choose care, and readily discuss the benefits and limitations of all treatments with the person.
Myth: You must have a "Do Not Resuscitate" order while in hospice.
Truth: This is an individual/family choice. A person can certainly choose to be resuscitated. The hospice will generally not provide this type of care, but will explain what you need to do to access such services. The hospice team will provide information that might be useful in making such decisions.
Myth: You must have a primary care giver to be eligible for hospice.
Truth: In the past, some hospices required a primary care giver because the hospice cannot provide 24 hour care except in crisis situations. Most hospices do not require this any longer. The hospice will ask you to make a plan for what will happen when you need round the clock care.
Myth: Families are not able to care for people with life limiting illnesses.
Truth: Family members and friends are encouraged, supported, and trained by hospice professionals to care for their loved ones. Hospice staff is on call to the individual and their families 24 hours a day, 7 days a week, to help family and friends care for their loved ones.