If you are thinking about hospice, you know that the decision can be a difficult one. It means that you or your loved one is nearing the end of life. It is normal to feel very emotional when hospice is discussed. You or your loved one’s healthcare providers can help guide you in making the decision. But keep in mind that the goal of hospice is to provide comfort. This is done for both the person who is ill and his or her family. Hospice is about ensuring quality of life during the time a person has left. Emotional and practical matters are taken care of while symptoms are controlled.
Beginning the hospice process
A healthcare provider must confirm that you or your loved one qualifies for hospice. A person with advanced cancer, heart failure, severe lung disease, or other illness can go into hospice when a health care provider believes he or she has about 6 months or less to live. You can then choose a hospice to make this time as comfortable as possible.
Choosing a hospice
When you are looking at hospices, ask questions. What are their services? Where do they provide care—at home or in a facility? Ask for a copy of the hospice’s Patient’s Rights and Responsibilities. To learn more about your local hospices, contact:
The hospice team
Hospice is provided by a team. The team usually has a healthcare provider, nurse, and social worker trained in hospice care. It may also have a home health aide, spiritual counselor, volunteers, and others. The people receiving treatment are an important part of the team. They can voice their wishes and goals. If hospice is done at home, family members give day-to-day care. A hospice aide can make several visits each week to help with bathing and bathroom needs. The number of visits made by the hospice aide is decided by the hospice team and depends on the needs of each client. A nurse, social worker, and other professionals will also visit. A hospice nurse or healthcare provider is on call 24 hours a day to answer questions and handle problems. Ask your healthcare provider if he or she participates in a hospice program if you wish to stay under his or her care while enrolled in a hospice program. If he or she does not participate, your hospice care can be managed by the hospice program's medical director.
Preparing for care at home
Hospice is often done in the home. Family members are the main caregivers, with support from the hospice team. The team may help you arrange care. They can provide medical equipment as needed. This may include a hospital bed, commode, oxygen, or other supplies. The hospice team can also help the family get breaks from caregiving. This is called respite care. For a short period of time, the person receiving hospice care can be put into a facility. This lets caregivers take care of other needs. If hospice is already being done in a facility, all of these things are taken care of on-site.
Symptoms are treated. These include pain, nausea, anxiety, breathing distress, and sleep problems. The hospice program will provide medicines to ease these symptoms. Treatments that are no longer helping may be stopped. The team will discuss what treatment changes may be needed. Caregiver training may be given to family members.
Both the person receiving treatment and family members can get counseling. This is to help with anxiety, grief, family conflict, and spiritual issues. Bereavement support can continue up to 1 year after the person dies
The hospice team helps the person receiving treatment and family members understand the illness and how it progresses. They can help both the person and family members review choices so decisions can be made. The team can help with finding legal resources and answering insurance questions. And they give information about how to make funeral and memorial arrangements.
The person’s primary care provider will have contact with the hospice team on a regular basis. If the person’s health improves, he or she may no longer meet the terms for hospice or need hospice care. In this case, the person can end the hospice care and start it again later as needed. A person can go back to hospice at any time by being recertified by a healthcare provider. Also, a person has the right to leave a hospice at any time for any reason. A person can also change to a different hospice if he or she is not happy with the care.
The cost of hospice care
Medicare, Medicaid (in some states), most private insurance groups, and HMOs cover hospice care. Families may be asked to meet some costs that are not covered by insurance. Public and community support through donations, grants, memorial gifts, and fundraising events make it possible for hospices to cover the cost of care. People are generally not turned away for financial reasons.