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For some, simply hearing the word hospice sends terror into their hearts. In my work with hospice, I learned that there is a tremendous amount of misinformation and myths that patients and healthcare workers have about what hospice is and does. It is important to ease people’s anxiety with accurate information.
One of the more common misconceptions is that hospice is there to end your life. One of the nurses I worked with told me about her early days in hospice and how when she walked into the room, the patient began screaming and hollering because he believed she was there to inject him with a drug that would kill him. Imagine the terror he must have felt believing that his death was imminent. There could be nothing further from the truth. The focus of hospice is pain relief, symptom management, and comfort, not cure. People do die in hospice, but it is a result of their terminal illness and not because they are under hospice care. Morphine and other drugs are given to patients, not to kill them but to provide them with physical comfort. Many times people live longer than expected in hospice care. Because physicians and families may wait too long to make the referral, patients may only spend a few days in hospice care before they die, which only reinforces the belief that hospice is a death sentence. One of the first patients I was assigned had a diagnosis of cancer. He was in his second year of hospice care after having been given six months to live.
Another reason people tend to avoid hospice is that it makes it harder to deny that death is approaching. Denial is a powerful thing. Those who are terminally ill and their families often try to deny the inevitable. People feel that hospice is just giving up hope, when in fact it is about providing a different level of comfort and care to the patient and family. As with any terminal illness, hope is ever changing. First is the hope of a cure, then there is the hope of being pain free or to be with family members or that death is peaceful.
Some patients are afraid if they are in hospice that they won’t be able to see their physician. The truth is that they can see whomever they want. Hospice will work closely with their physician. Hospice is about quality of life and to help the patient to live the best life possible in the time that is remaining. In hospice, you actually get more care rather than less. Patients may also worry that they will have to sign a DNR (Do Not Resuscitate). A DNR is typically signed before going into hospice and can be revoked at any time if the patient decides she wants to go to the hospital or emergency room. The patient is simply discharged from hospice care and maybe readmitted at a later time. Below are some additional truths about hospice:
- Hospice is available for all ages. Hospice works with the very young and the very old. There is no age limit with hospice.
- You can stay home to receive hospice care. In many ways, this is preferable to being on an inpatient unit. The dying are able to stay in their own familiar surroundings, allowing their loved ones to provide ongoing connection and care, while the dying can still feel a part of the family. Nurses, social workers, and clergy come to the home to assist the family and the patient. Hospice is available to patients and their families 24 hours a day, seven days a week.
- Hospice stays connected to the family. The misconception is that hospice leaves as soon as the patient dies. In truth, bereavement and support groups are available for the family up to a year after death.
As with most things, we fear what we do not know. Even though hospice has become more commonplace, there are still certain entrenched beliefs that keep people from using their services. In earlier times, people died at home with their loved ones taking care of them. Death was not as frightening and children learned what death was and how to grieve. Today, hospice is a return to those times but with a multidisciplinary, professional team working with the patient and family.
