Sometimes the biggest obstacle to choosing hospice is just plain fear.
In the midst of emotional turmoil and without proper knowledge of what hospice is, people are naturally afraid. Medical care, after all, is supposed to make people well. When families hear that doctors will no longer try to cure their loved ones, they imagine that there will be no treatment. They may envision their loved one in great pain with no one who cares. Or they may fear that their loved one will be overmedicated and become unaware. They may even think that hospice is a means of hastening death. Nothing could be further from the truth. “Many patients say that they are getting more care with hospice than they were before,” says Mahveen Hussain, MD, medical director of AseraCare Hospice in Stockton, Calif., “Hospice patients and their families need to be assured that help is no more than a phone call away, 24 hours a day, seven days a week. Also, the patient’s regular doctor remains an important part of the hospice team, thus ensuring continuity of care.”
Another misconception is that hospice care must be expensive. Again, the opposite is true. Without hospice, individuals with or without insurance are responsible for the costs of prescription drugs and everyday supplies such as diapers, bed pads and bandages. Once a patient enters hospice, Medicare pays for most end-of-life services, including supplies and prescriptions, regardless of the age of the patient or where the services are provided. There is no charge to the patient for nursing services, therapists or even aides who can bathe and dress patients and even take over some household duties. Hospice can actually lower the cost of care. Sometimes family members themselves are opposed to entering their loved ones into hospice, fearing that their motives might be questioned — that they might be seen as giving up, or worse, trying to relieve themselves of the burden of care.
“We have found that the patient usually wants hospice but the family is struggling with the idea. We talk to family members about their loved one’s dignity, about letting the patient make choices, and respecting his or her wishes.”
Says Luraine Nuzzo, executive director of AseraCare Hospice in Richmond, Va., “We have found that the patient usually wants hospice but the family is struggling with the idea. We talk to family members about their loved one’s dignity, about letting the patient make choices, and respecting his or her wishes.” To help family members make the decision, experienced hospice staff can explain the patient’s disease trajectory — what to expect as the disease progresses and what the care needs will be. Because of the stress they are under, families rarely consider what they will do as the disease becomes more acute. They rarely assess in advance whether they have the resources — financially, physically and emotionally — as well as the ability and knowledge to continue care. But perhaps the most difficult obstacle to entering a hospice program is simply admitting that the end of life is inevitably approaching. Too often people consider hospice as the place where hope is gone. The truth is, hospice is the place where families and patients can turn away from fear and be led to a place of warmth, where life is cherished and made the most of until it can be no more. “I would like to think in the end that families and patients trust us to do the right thing,” says Luraine. “They let us into their homes and hearts at the time they are the most vulnerable. They trust we will give them respect and the honor to die pain-free in the place that they choose. My team takes that seriously. It’s not up to us to determine someone else’s choices. Everyone wants to leave this earth on their own terms.”
Tips on Starting the Hospice Conversation
- When faced with a diagnosis of a terminal disease, discuss your options for care, including hospice, with your doctor, family member or clergyman.
- Find a quiet time and a place with no distractions to broach the subject.
- Include as many of the family in the conversation as is comfortable for all. Remember that feelings and reactions may be highly emotional, so give everyone time to adjust to the idea.
- Don’t expect a decision immediately, but give everyone the freedom to discuss the topic in the future.
- Hospice can be provided in your home, in a nursing home, in a hospital or in a hospice facility. But regardless of the venue, hospice provides a team of caring professionals who can manage the medical and emotional needs of both the patient and the family.
- Ask for a free hospice consultation so that you understand the services available. Medicare and many insurance plans cover hospice services.