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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 many emotions 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. Symptoms are controlled. Emotional and practical matters are taken care of.
A doctor must confirm that you or your loved one qualifies for hospice. A person with illness can go into hospice when a doctor 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.
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:
Healthcare providers or hospital staff
Your place of worship
The local agency on aging
The local Visiting Nurse Association (VNA)
Your local United Way
The Veteran’s Health Administration office
State department of health or social services
The state hospice organization
The Hospice Foundation of America at www.hospicefoundation.org
The National Hospice and Palliative Care Organization at www.nhpco.org
Hospice is provided by a team. The team usually has a doctor, nurse, and social worker trained in hospice care. It may also have a home health aide, spiritual advisor, volunteers, and others. The patient is an important part of the team. He or she can voice his or her wishes and goals. If hospice is done at home, family members give day-to-day care. A home health aide can make visits. They can help with cooking, bathing, and bathroom needs. A nurse, social worker, and other professionals will visit. And a hospice nurse or doctor is on call 24 hours a day to answer questions and handle problems.
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 may also help set up the home. They can provide medical equipment as needed. This may include a hospital bed, commode, oxygen, or other supplies. The hospice can also help the family get breaks from caregiving. This is called respite care. For a short period of time, the hospice patient 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 such as pain, nausea, anxiety, breathing distress, and sleep problems are treated. The hospice program will provide medications to ease these symptoms. The team will teach you how to use them. Treatments that are no longer beneficial may be stopped. The team will discuss what treatment changes may be needed. And caregiver training may be given to family members.
Both the patient and family can get counseling. This is to help with anxiety, grief, family conflict, and spiritual issues. Bereavement support is given for up to 13 months after the patient dies.
The hospice team helps the patient and family understand the illness and how it progresses. They can help both the patient and family review options 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 patient’s primary care doctor will have contact with the hospice team on a regular basis. If the patient’s health improves, he or she may no longer meet the terms for hospice or need hospice care. In this case, the patient can end the hospice care and start it again later as needed. A patient can go back to hospice at any time by being re-certified by a doctor. Also, a patient has the right to leave a hospice at any time for any reason. A patient can also change to a different hospice if he or she is not happy with the care.