what is hospice
Whether you are considering hospice care for yourself or a loved one, you may feel stunned, frightened, and unprepared for what lies ahead. The good news is, you no longer have to go through the experience alone. Specially trained teams exist to guide and support you during this difficult time. The teams make up the hospice movement and are committed to helping patients and their loved ones find comfort and dignity as the end of life approaches.
When you or a loved one is very sick and no longer responding to cure-oriented treatment, hospice is there, waiting for you. The hospice team consists of physicians, nurses, aides, social workers, spiritual caregivers, counselors, therapists, and volunteers. All of these people know how hard it is physically, emotionally, and spiritually to care for dying people, yet they do it tenderly and compassionately. And they are trained to support family members as well – during the time their loved one is alive and for a year after the death.
Hospice focuses on keeping the patient pain-free and lucid, and helps the patient live well until the end. In his book Dying Well: The Prospect of Growth at Life’s End, hospice doctor Ira Byock writes: “Despite the arduous nature of the experience, when people are relatively comfortable and know that they are not going to be abandoned, they frequently find ways to strengthen bonds with people they love and to create moments of profound meaning in their final passage.”
Hospice patients are typically in their last six months of life, and two-thirds of them are over 65.
Originally geared for cancer patients, hospice today addresses a broad array of life-limiting illnesses, including end-stage heart, kidney, and liver disease, along with dementia, lung disease, HIV/AIDS, and other debilitating conditions. Hospice is a concept of care; it is not a place. In 2000, 97 percent of hospice care was provided in the patient’s home or the home of a loved one. Many million Americans have benefited from the care of hospice since 1982.
Key to hospice philosophy is the support of a patient’s family during the caregiving process, as well as during the grieving that continues after a loved one’s death. The values and choices of the patient and family are respected. While patients must have a doctor’s referral to enter hospice, the patient, family, and friends can initiate the process by contacting a local hospice program.
A family has nothing to lose and everything to gain by working with the hospice team. While the end of life is a highly personal and intimate time, bringing others in who are skilled in providing end-of-life care can help tremendously. Hospice seeks to embrace a family with a whole team of members. The daughter of a dying parent said: “Once acceptance came that we were with hospice, energy came to make the days joyful.”
Hospice offers comfort and dignity until life’s end, and concentrates on the person, not the disease. The people who work in the hospice field feel truly called to do this work. In The Hospice Choice, a hospice nurse writes:
“After eight years, I also realize that I feel like I belong with the people at hospice. We talk the same language about some of life’s most difficult and mysterious times, and how they influence us as human beings.”
The greatest fear of those who are terminally ill is not death and pain, but the fear of being left alone, of dying without anyone by their side. Hospice provides patients and their loved ones the assurance that thy will not be abandoned, but attended with love and care when they need it most.