Hospice care, defined as “humane and compassionate care for people in the last phases of incurable disease” (American Cancer Society), is needed more than ever as the populations of developed countries age. According to the CDC, the average lifespan increased by 30 years in the United States during the 20th century. Advances such as antibiotics, immunizations, X-rays and other types of imaging, and sophisticated laboratory techniques have greatly improved diagnosis and treatment of illness, particularly infectious diseases. The number of individuals in the 7th, 8th, 9th, and even 10th decade of life has swelled as medicine has developed. In the 21st century, chronic diseases including cancer are the most common causes of death.
Persons with terminal illness often remain ill for extended periods of time (unlike an infectious disease or heart attack) and over half will experience pain and other unrelieved symptoms in the last days of their lives. Caregivers of the terminally ill are also adversely affected – they are more likely to suffer depression and develop chronic disease themselves. In recent years these issues have come to the attention of public health officials and institutions. Research has revealed that not all those who would qualify for hospice care actually use it; in many cases this may be due to lack of information about the issues and choices surrounding hospice care.
Hospice care is sometimes viewed as “giving up.” Family members may have difficulty accepting a loved one’s impending death and wish to continue painful and exhausting treatments although the patient’s illness is clearly terminal. This is a normal response, but it can result in needless suffering for the patient. Most people have heard of the living will, although they may not have one themselves. A living will or advance directive is a document a person prepares before an illness occurs. It specifies the person’s wishes regarding life support, treatment, and other end-of-life issues. Even if you have discussed your wishes with your family, it is best to have it on paper for reference.
Hospice care affirms life, the best possible life for the dying person. Palliative care is given to alleviate pain and other symptoms, so that the patient can be as alert yet pain-free as possible. This allows grieving, saying goodbye, religious rituals, and other tasks the patient needs to accomplish to achieve a peaceful death. Although hospice affirms life, it also recognizes that death is part of life and that it is a process, both for the dying person and their family.
The team that provides hospice care is interdisciplinary – several types of practitioners work together. These may include doctors, nurses, counselors, home health, clergy, and volunteers. Hospice care is holistic, addressing the needs of the whole person. This is true not only for the patient, but also the patient’s family. A high level of social, emotional, and spiritual support is provided for everyone involved.
Hospice care can be delivered in many settings. In-home care is usually preferred, but when this is not possible, the patient can still receive care in the hospital or a nursing home. Many locations have specialized hospice facilities which are dedicated solely to providing hospice services.
One important facet of hospice care, unlike traditional medical care, is that it does not end when the patient dies. Family support continues during the bereavement period to help with the grieving process and with issues such as depression that may develop. These services often continue for about a year.
In the United States, Medicare, private health insurance, and Medicaid (in 43 states) cover hospice care with certain qualifications. Hospice programs may also offer sliding scale payment for those who do not qualify for the above funding sources. In the United Kingdom and many European countries, hospice care is provided free of charge, through national health services or charities.