hospice care and terminal illness

Death with Dignity: You Have to Ask for It

Study: Many doctors don’t talk to terminally ill patients about hospice care, even though it eases the burden for patients and their families.

By Leah Zerbe


Death with Dignity: You Have to Ask for It

Hospice care provides medical and social support to patients living at home.

• Have the talk. As this study shows, healthcare providers often don’t bring up hospice as an option. If you or a loved one is seriously ill, talk to a trusted doctor or nurse and ask them about a prognosis, and if they think hospice might be right for your situation. It’s often easier to confront these types of issues when you are well, so it’s not a bad idea to talk to family and loved ones about your final wishes while you’re healthy.

But if you’ve been diagnosed with a condition that typically limits your life expectancy, don’t be afraid to talk about hospice early on for a better quality of life. “About a quarter of patients enroll in hospice a handful of days before they die, so they can’t really take advantage of it,” says Huskamp. “But many patients use it much longer—months—and even much longer than expected.”

• Know where to find help. Most patients say they want to die in their home with their pain controlled. Hospice services can grant that wish, but it’s important to understand that the service is there not to numb you, but to offer an extra set of services targeted to people in this situation. “The other side is helping you to prepare mentally and physically for your death and have some time to work through those issues,” says Huskamp. Caring Connections is a good source to find more information about hospice services. The National Hospice and Palliative Care Organization also offers an online directory that can help you find a hospice provider.

• Understand funding. Typical payment for a day’s worth of hospice care is $140. Most terminally ill patients are over the age of 65, so they’re enrolled in Medicare, which funds most hospice services. For the care to be covered, though, a physician has to say the prognosis is six months or less. (Although you very well may live longer.) Lower-income patients on Medicaid are generally covered the same way. Some hospices can charge a very modest copayment for pain medications, but some even bypass this charge. Private insurance coverage varies—some policies offer great coverage, while others are limited or offer no coverage. If insurance doesn’t help foot the bill, talk to a hospice provider in your area—many receive donations that can be used for uninsured patients, and others offer payment plans.

• Know what to expect. Hospice care varies with each patient, depending on his or her condition and the stage of the disease. When you first enroll, expect people to be coming by often. Depending on how you’re doing, nurses’ aides, who can help with things around the house and with bathing patients, along with social workers and spiritual counselors, may come by daily or every few days. As a patient is actively dying, some hospice providers will help patients round the clock.

Published on: May 29, 2009
Updated on: May 19, 2010

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