We all try to delay the inevitable, but in the case of terminal illnesses, delaying hospice care can result in more pain and grief for patients and their families.
Hospice is designed to reduce the suffering of people near the end of life. Rev. Ron Jetter, Executive Director of Lower Valley Hospice and Palliative Care, says the main goal of hospice care is to give patients dignity and control back. But hospice can do more than that. A 2007 study published in the Journal of Pain and Symptom Management found that hospice patients lived an average of 29 days longer than non-hospice patients.
A physician refers a patient to hospice when the patient is not expected to live longer than six months. Hospice care focuses on quality of life instead of trying to cure illnesses. Treatment is for reducing pain in all aspects of a patient's life rather than making attempts to prolong existence.
In the United States, hospice started in the 1970s as services offered by volunteers trying to ease the transition for both the dying and their loved ones. It is now a recognized medical service certified and covered by Medicare.
Unlike traditional medicine, hospice offers a holistic approach, working to provide care for eight types of pain: physical, mental, emotional, spiritual, social, financial, bureaucratic and cultural. Hospice care works to alleviate pain in all areas of life, both for the patient and for the patient's family.
Hospice staff work with the patient at their home, nursing homes or assisted-living facilities. They also work with families to ease the burden of caring for a terminally ill relative. A hospice will also work to keep a patient's finances under control and deal with bureaucratic mazes, leaving more time for patients to tie up the loose ends of life. Hospice workers provide emotional support to the patient and to the patient's family, even offering grief counseling for over a year after the patient passes. When hospice is given enough time to help, they can greatly ease the transition from life to death.
Despite its reputation, a referral to hospice is not always the end for a person. Jetter says that one in 10 patients improve enough that they can go off hospice and get further treatment. When a physician and hospice work together, the quality of life of their patients can improve dramatically.
At its best, hospice requires time for the patient to get familiar and comfortable with the care providers. According to the National Hospice and Palliative Care Organization, "Experts agree that hospice is most beneficial when provided for at least three months." Unfortunately, referrals from physicians often come too late for many patients.
Jetter says that three years ago the median time his patients were in hospice was 28 days. In the last six months, that has dropped to 21 days. Ten percent of those referred to them were in their care three days or less, leaving the hospice no time to establish a relationship or help the family prepare for death. Almost half his patients getting less than two weeks of hospice care were unable to receive the full benefits of the service.
Physicians may delay referring a patient to hospice for several reasons. To some, a discussion about hospice amounts to "giving up" on a patient. Many people have an aversion to talking about death and won't allow their doctor to talk about it. Some physicians may fear sending a patient to hospice too soon, leading to financial worries or loss of hope.
Yet hospice care is hardly an act of abandonment. It is just the opposite, a willingness to extend care to the end, providing the best quality of life for a patient. Debra Roe-Johnson, the Director of Clinical Service at Lower Valley Hospice, says physicians need to realize "the legacy of their care is written in how their patient dies." A hospice offers a good death, pain-free and surrounded by family, instead of false hopes, painful treatments and a death surrounded by medical equipment in an unfamiliar bed.
We have a cultural aversion to talking about death. This aversion can cause unneeded suffering when it gets in the way of dealing with the reality of life. Sitting down with a doctor to discuss end-of-life options is part of planning for life. A 10-minute discussion will not give anyone enough information to make an informed decision, patients and physicians should discuss the options fully to make the best decision for each patient.
Going to hospice isn't a one-way trip. Because of the lifting of every type of pain, some patients recover enough to leave hospice. Others may decline slower than expected, leading to longer care. Roe-Johnson says that Medicare is flexible, and doesn't expect everyone to simply die in six months. With regular check-ups from their physician, some patients stay in hospice for over a year.
And finally, hospice actually saves money. A ten-year study published in 2003 found that hospice reduced Medicare spending by over $2,000 per person compared to normal care.
The advantages of hospice are multiple, ranging from a longer life and more comfortable end to financial savings. Says Jetter, "everybody deserves quality end-of-life care."