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

RODALE NEWS, EMMAUS, PA—Hospice care, a service that can help people with terminal illnesses live at home, isn’t getting as much attention from physicians as it probably should. A study just published in the Archives of Internal Medicine found that doctors discussed hospice care with only about half of their terminally ill patients. Hospices offer services to help keep patients comfortable well in advance of their final days, usually in their own home, with improved quality of life and symptom management. But some physicians and patients may avoid the topic, because “people often think death will occur right away. They think it means giving up,” explains study coauthor Haiden A. Huskamp, PhD, associate professor of health care policy at Harvard Medical School in Boston. In reality, many people in hospice live longer than expected.

THE DETAILS: Researchers used data on 1,517 patients diagnosed as having stage IV lung cancer, a condition known to have a poor prognosis. Despite this fact, only half of the patients said their healthcare providers discussed hospice options with them. Discussions regarding hospice were less likely among patients who were black, Hispanic, non-English speaking, married or living with a partner, lower-income Medicaid beneficiaries, or had undergone chemotherapy. The study authors conclude that improved communication between doctors and patients could help patients better understand hospice and its role in their prognosis.

WHAT IT MEANS: While the study focused on patients with advanced lung cancer, Huskamp says she believes the lack of communication between doctors and patients with limited life expectancies is a broader issue. “Having these conversations is really hard. It’s hard for the patients, the families, the doctors,” says Huskamp. “And there are many reasons why doctors don’t address hospice. Some may feel they’re not adequately trained to talk about it, others want to give hope as long as possible, and some try to exhaust all life-extending processes first.”

Huskamp notes that hospice is a different healthcare service than most, in that providers don’t just focus on alleviating pain, but include counseling to the patient and family members. “The package of services typically includes social workers, spiritual counseling—people who can talk with you about how you’re approaching death, help you prepare for it,” Huskamp explains. “Family is very involved in a typical hospice situation, and bereavement counseling is usually available after a patient dies.”

Here’s how to find out more about hospice, and if it’s right for you or a loved one:

• 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.