This is a list compiled by Naomi Naierman and Johanna Turner from the American Hospice Foundation.
Hospice is a place. Hospice care takes place wherever the need exists — usually the patient’s home. About 70 percent of hospice care takes place where the patient lives.
Hospice is only for people with cancer. More than one-half of hospice patients nation-wide have diagnoses other than cancer. In urban areas, hospices serve a large number of HIV/AIDS patients.
Increasingly, hospices are also serving families coping with the end-stages of chronic diseases, like emphysema, Alzheimer’s, cardiovascular, and neuromuscular diseases.
Hospice is only for old people. Although the majority of hospice patients are older, hospices serve patients of all ages. Many hospices offer clinical staff with expertise in pediatric hospice care. Almost 20% of hospice patients are under 65 years of age.
Hospice is only for dying people. As a family-centered concept of care, hospice focuses as much on the grieving family as on the dying patient. Most hospices make their grief services available to the community at large, serving schools, churches and the workplace.
Hospice can only help when family members are available to provide care. Recognizing that terminally ill people may live alone, or with family members unable to provide care, many hospices coordinate community resources to make home care possible. Or they help to find an alternative location where the patient can safely receive care.
Hospice is for people who don’t need a high level of care. Hospice is serious medicine. Most hospices are Medicare-certified, requiring that they employ experienced medical and nursing personnel with skills in symptom control. Hospices offer state-of-the-art palliative care, using advanced technologies to prevent or alleviate distressing symptoms.
Hospice is only for people who can accept death. While those affected by terminal illness struggle to come to terms with death, hospices gently help them find their way at their own speed. Many hospices welcome inquiries from families who are unsure about their needs and preferences. Hospice staff are readily available to discuss all options and to facilitate family decisions.
Hospice care is expensive. Most people who use hospice are over 65 and are entitled to the Medicare Hospice Benefit. This benefit covers virtually all hospice services and requires little, if any, out-of-pocket costs. This means that there are no financial burdens incurred by the family, in sharp contrast to the huge financial expenses at the end of life which may be incurred when hospice is not used.
Hospice is not covered by managed care. While managed care organizations (MCOs) are not required to include hospice coverage, Medicare beneficiaries can use their Medicare hospice benefit anytime, anywhere they choose. They are not locked into the end-of-life services offered or not offered by the MCOs. On the other hand, those under 65 are confined to the MCOs services, but most provide at least some coverage for hospice.
Hospice is for when there is no hope. When death is in sight, there are two options: submit without hope or live life as fully as ever until the end. The gift of hospice is its capacity to help families see how much can be shared at the end of life through personal and spiritual connections often left behind. It is no wonder that many family members can look back upon their hospice experience with gratitude, and with the knowledge that everything possible was done towards a peaceful death.
*A note for Canadians about cost:
In Canada (where I live), we have universal health care, which provides basic health care without user fees. Yet the provinces control health care, and some charge a fee to access the health system. Palliative care is a basic service in all provinces and territories, so there’s no charge for palliative care in a hospital. Provincial and territorial governments usually cover the medications in this situation.
If a person doesn’t need palliative care or acute care in a hospital or institution, then alternatives are considered. If a person’s condition is stable, then care may be better provided elsewhere such as in a hospice, care home, or the person’s own home. Home care services provided by the government don’t have a fee. A care home or a hospice facility likely does charge a fee that usually depends on the facility or the individual’s income. Many Hospice facilities are run in conjunction with charity organizations and are subsidized by the charity and the government, and are very affordable.
If you’re concerned about the cost of care, some provinces and territories have special programs to cover all or some of the cost of medications for palliative care patients. These may apply to care at home, in a care home or in a hospice. Most of these government programs have criteria, which can be found on palliative care or provincial websites. Your health care team can tell you more about how the health care system works and specific resources in your region.
Have you had misconceptions or experience about Hospice Care? Please comment below with your thoughts.