GUEST OP-ED - Hospice care: Making the most of life

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What would you do if you learned you were facing a terminal illness?

Would you worry about spending your final weeks or days in a hospital?

Would you be afraid of suffering with pain? Would family and friends think they need to quit their jobs or take unpaid leave in order to care for you?

For Americans facing these questions, the solutions lie in a single word: hospice. Hospice care helps families meet their loved ones’ medical, social and spiritual end-of-life needs, allowing the terminally ill to live as fully and comfortably as possible. It also allows patients to remain in control of their care and prepares everyone involved for the transition ahead.

As the leader of a hospice program serving more than 1,600 patients a year, I frequently hear from patients’ family members and friends that they wish they had known sooner what hospice is and what a difference it would make in their lives at a very difficult time.

November was National Hospice and Palliative Care Month, a perfect time for all Americans to learn more about the program and its growing significance in our society.

Hospice has come a long way since the first US program opened in 1974.

Today, there are 4,700 hospice programs nationwide. Of the 2.4 million deaths in the U.S. last year, more than a third – 38.8 percent – took place under hospice care; the majority of patients chose to die in the comfort of home.

Since 1982, Medicare has covered hospice care for its beneficiaries and now covers more than 83 percent of total hospice patients, with Medicaid making up another 4.5 percent. Private insurance policies also may cover hospice services, which are available on a private-pay basis, too.

Unfortunately, as the federal government and states, including New York, face budget shortfalls, there are plans to cut hospice reimbursement.

This would be a shortsighted solution with long-term consequences, including greater medical costs, diminished quality of care and increased strain on families of the terminally ill.

As lawmakers face very difficult decisions, they must understand that reducing the hospice and home care benefits would reflect a cost savings on their budgets, but would have enormous financial repercussions on Medicare and Medicaid. Last year, a Duke University study found that hospice reduced Medicare costs by an average of $2,309 per patient and suggested that further savings could be made if the services were initiated earlier.

Protecting the hospice benefit will enable hospice programs to continue purchasing and supplying disease-related medications, supplies and equipment. Patients with advanced illnesses often require oxygen, hospital beds, wheelchairs and many other support devices that impact their quality of life.

Decreasing the hospice benefit will cause some programs to close and others to scale back on staffing and services, ultimately leading to more medical emergencies and hospitalizations.

One reason hospice is able to operate cost-effectively is its use of donated time. As a program started by volunteers, hospice continues to use volunteers as a vital part of its service. In fact, the conditions for participation in Medicare require volunteers to provide at least five percent of patient care hours. High fuel prices and the economic downturn, however, have contributed to decreases in volunteer enrollments and, in turn, increased operating costs. Decreasing the hospice benefit at a time when patients and family members and programs are facing financial hardships will only add to the “perfect storm” already brewing.

By encompassing both patients and their families, hospice minimizes the element of crisis that too often marks the final stages of illness.

Through services such as monitoring patient health after discharge from the hospital; providing oxygen and equipment such as hospital beds and wheelchairs; and having a 24-hour on-call medical team available, hospice allows family members to continue to work and still have the opportunity to spend time with their loved ones.

During the final days of National Hospice and Palliative Care Month, we have much to celebrate. We honor the patients and the families who care for them as well as physicians, registered nurses, medical social workers, chaplains, bereavement counselors and other professionals who make it possible. It also is a time to unite and demand that our legislators continue the current levels of government funding for hospice. Together, we should make the best use of the time and resources we have.

Barbara Hiney, a certified hospice and palliative care nurse, is vice president of Metropolitan Jewish Hospice and Metropolitan Jewish Palliative Care.

Updated 11:48 am, January 16, 2019
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