At an annual memorial service organized by the hospice agency that had taken care of my mother, I sat next to her hospice nurse. Photos of all the people who had died in the last year scrolled on the giant screen. When my mother’s photo appeared, showing her looking relaxed and happy in Wexford, Ireland, her nurse said quietly, “There she is.”
During the many months my mother was a hospice patient, she and the nurse had grown very fond of each other.
I asked the nurse if many of the people pictured on the screen—squinting in the sun on cruise ships, holding a beloved pet, mugging in family group shots, or beaming at weddings—had been her patients. She gazed at me steadily for a moment, then said, “I don’t know. I don’t recognize a lot of the patients in the photos, because by the time they get to us, they have changed so much.”
It took me a minute to absorb what she meant. She was referring to the fact that many patients and families are reluctant to consider hospice care until the patient is days, or even hours, from death. According to the National Hospice and Palliative Care Organization, approximately 34.4 percent of hospice patients died or were discharged within seven days of beginning hospice care in 2009. That year, an estimated 1.56 million people received hospice services.
People who spend only a few days under hospice care often could have avoided suffering if they had begun receiving this type of care earlier. Lack of understanding about hospice care is one barrier to timely referrals. Another is a shared reluctance among patients and health care providers to be frank about death.
Contrary to what many people believe, hospice does not mean giving up hope.
Kristyn Fazzalaro, a social worker who supervises the palliative care team at Hoag Memorial Presbyterial Hospital, often encounters people with a chronic or terminal illness who have mistaken ideas about hospice.
“They think that with hospice, they’re going to be on a morphine drip, and just go to sleep and have no life. It’s not that at all. We focus on improving quality of life,” she said.
It’s helpful to talk about the things that bring the patient joy, and whether those things are occurring on a day-to-day basis, Fazzalaro continued. Hospice care often helps people continue to experience the things that mean the most to them, at home with family and friends.
Fazzalaro noted that patients sometimes do better with hospice care. “Certain individuals live longer when their pain and symptoms are under control, and when they stop bouncing back and forth from the hospital,” she said.
This was true in my mother’s case. Weak, in pain, and frightened when she was referred for hospice care, she was not expected to live more than a month. She surpassed that prediction by many months, during which she was comfortable and pain-free enough to joke that she planned take up windsurfing (she was 81) or buy a new Mini Cooper, festoon it with her favorite baseball team’s logo, and motor to San Francisco. She spent meaningful time with us while receiving hospice care, and died peacefully in her beachside apartment. I miss her every day, but am continually thankful that hospice care brought tranquility to her final months and provided so much support for my family.
Patients and families may also believe that in-home hospice care would be unaffordable. In fact, hospice care is covered under Medicare and Medi-Cal, as well as most insurance plans.
With hospice care, a team of nurses, home health aides, social workers, and chaplains provide help in managing pain and symptoms and in dealing with the emotional and spiritual aspects of death. The team supports the family in caring for the patient, usually at home, although hospice care can also be delivered in a nursing, board and care, or assisted living facility. Hospice care includes the medication, medical supplies, and any equipment the patient needs, such as a hospital bed. Surviving friends and family have access to bereavement counseling and support through hospice.
Educating patients and families about hospice care empowers them, Fazzalaro said. “I tell them that then their toolbox is full, and they can have access to what they need, whenever they need it.”