The decision to stop curative treatment and enter hospice is never easy, and it comes at a stressful time. Even once the decision is made, arranging for hospice care requires the acknowledgment of unpleasant realities, which doctors themselves may hesitate to discuss. This reluctance can put the onus on patients and families to initiate hard conversations about end-of-life care.
Here's a guide to navigating the hospice system so that you and your loved ones can get the information you need to make informed decisions.
Hospice provides support for people entering the final stages of their lives, and for their families. The word is a medieval term that describes a brief resting place on a long and difficult journey.
According to the official philosophy statement of the National Hospice and Palliative Care Organization, "Hospice affirms life and neither hastens nor postpones death." Instead, it strives to enhance the quality of a person's remaining life by providing medical care, pain management, and emotional and spiritual support.
Hospice service is most commonly delivered in the home, but it can also be provided at a nursing home or hospice care facility.
Who is Eligible?
Anyone with a terminal illness who has decided to stop seeking curative treatment. The initiation of hospice care requires a referral from a doctor certifying that the person has been diagnosed with a disease or illness that, if it ran its normal course, would result in a prognosis of six months or less to live. That doesn't limit care, though. "You can continue receiving hospice as long as you're still terminally ill," said Donald Schumacher, president and chief executive of the National Hospice and Palliative Care Organization. In 2008, the median number of days that patients received hospice care was 21.4 days, and the average was 69.5.
What Does it Cost?
About 84 percent of hospice care is paid for by Medicare, and most insurance companies cover it. But hospice services are provided without regard to the ability to pay, and most have programs to help families pay if they lack coverage or means. "No one is turned away," says Mary Ellen Blakley, administrator for the Hospice Partners of Southern California.
Make Plans Early
Whether you're perfectly healthy or you've just been diagnosed with a serious condition but are still feeling fine, now is a good time to put your last wishes in writing. "It's hard to make good decisions when you're in the midst of a tragedy or drama," Schumacher says.
An advanced directive, a legal document that identifies your wishes regarding medical treatment at the end of life, gives doctors formal instructions on the care you want if faced with a terminal illness or injury, and can give peace of mind to loved ones who can know for certain they're following your wishes, Whitney says.
Each state's advanced directive forms are different; you can download them free at www.caringinfo.org.
How to Talk About It
Family members and terminally ill patients often struggle to initiate discussions about death, and this can result in a conspiracy of silence that can delay hospice care, Whitney says. "Very often the patient says to me, - I know I'm dying, but please don't tell my wife.' And then I'll talk to the wife and she'll say, - I know my husband is dying, but please don't tell him.'"
Some loved ones fear that raising the idea of hospice care could make the patient think that they're withdrawing support, but Schumacher, a clinical psychologist, says that's rarely the case.
"They can be living under this pressure to stay alive for the wife and kids. I'm surprised at how often they feel guilty, like they've let people down by getting ill, and giving them permission to be sick can lift this burden," Schumacher says.
What to Expect
Hospice care starts with a visit from a nurse, who meets with the patient and the family to put together a care plan that fits the patient's values and needs. But it's not just for the patient. "Our basic philosophy is that the patient and the family are the unit of care," Schumacher says. "The family receives a lot of psychosocial and spiritual support throughout the process."
Hospice provides visits from doctors, nurses, home health aides and volunteers, but usually these do not take the place of the primary caregiver, Blakley says. Instead, hospice workers go in as an extra set of hands, helping to bathe the patient and assisting with bed changes and similar tasks. A hospice volunteer might also visit to read to the patient or offer a listening ear for family members. Workers help caregivers ensure that their loved ones are comfortable, and they deliver pain medications, nursing care and palliative measures as needed.
Most hospice care is delivered in the patient's residence, where routine visits from hospice doctors, nurses and home health aides are designed to make the dying process as comfortable as possible for patient and family. Some hospices have in-patient facilities.
After a Loved One Has Died
Support for the family continues for a year or more.
The hospice period gives people an opportunity to finish their life business and let go of loved ones in a way they can feel good about, Schumacher says. "When people have those final conversations, they can become very close. It's a very intimate process, and it's unique to each person."