At its best, hospice gives patients and families who choose it a peaceful way to die. From all the people I’ve interviewed, surveys and studies I’ve read, dying patients who have let me into their homes, I know that hospice is often at its best. But not always. Bad things -- uncontrolled pain, severe seizures, unacceptable levels of family distress -- can happen, even in good hospices staffed by caring people.
The palliative care team at Dartmouth-Hitchcock Medical Center experiences some distress of its own when they discharge a patient to hospice and things don’t go according to plan. At the hospice and palliative care conference I recently attended, Ira Byock, MD and Yvonne Corbeil, RN shared some stories of patients who did not die well at home. And they shared a potential solution, a “Hospice SOS pack.” It may be particularly useful in rural areas where pharmacies are few and far between, not open 24/7 and may not routinely stock the powerful drugs that these patients need.
Ira (an occasional guest blogger here and here) described a particularly heartbreaking case of a 37-year-old woman with terminal cancer. She went home from the hospital, was ok for 24 hours and then everything went wrong. According to the family, she was moaning in pain, and experiencing seizures. The pharmacy didn’t have the right drug in the right form. (She could no longer swallow, she needed something that would dissolve.) The woman ended up dying in an ambulance. Her worse fears had been realized. Her family suffered with her. “Talk about a bad death,” Byock said.
Sometimes hospice patients can't be cared for at home. That's why some hospices have residential or inpatient units; others have arrangements with local hospitals to use designated beds for dying patients under the hospice's care. That kind of care, even when it's not at home, is still hospice care and it's part of the Medicare hospice benefit. But wild unplanned trips to emergency rooms with ambulance sirens screeching are a different matter. That's not quality hospice care. It's not hospice care at all. It's also expensive (although in this case, we're not posting because of the cost, we're posting because of the quality -- but as you'll see in a moment, it's another example of how we can create higher quality care in our system at lower cost.)
The Dartmouth hospital palliative team realized that when things go badly, “usually more than one link in the chain has broken.” They have been working internally in the hospital to change some practices, as well as meeting with community hospices in New Hampshire and Vermont and working with area pharmacies. One solution they are testing is the hospice symptom security order set -- Hospice SOS. It’s a packet of emergency medications and the appropriate prescription paperwork that goes home with the patient when he or she leaves the hospital for hospice. A hospice nurse can then administer the drugs in a crisis. (These are highly regulated drugs, hospice nurses can't just drive around a crate of vials in their cars.) "It's sort of having a life preserver on a boat," said Byock. "You hope you never use it." But you can't set sail without it.
As Byock and Corbeil said in their presentation the other day, the SOS may not be a perfect solution for all communities, although it may be a blueprint that other areas can adapt. For starters, Dartmouth is absorbing the cost of these packets -- $70 per person (which is a whole lot less than the typical $18,000 cost when a hospice patient is readmitted to Dartmouth-Hitchcock, often via the ER). Not all hospitals will be willing to spend that money, particularly when most of the SOS kits won't ever be used. It’s a new program and there have been some flaws. For instance, at least once a new pharmacist forgot to pack the syringes with the drugs. The kit is only going to patients discharged to hospice by the specialized palliative care team, not by other departments of the hospital including oncology. There are concerns about how to dispose of the drugs safely, (as well as the needles and syringes) and the risks of having these opiates, tranquilizers and anti-seizure medications in the home. Hospice and palliative care doctors and nurses are aware -- increasingly aware as I heard from several people at the conference -- of the risks of prescription drug abuse in the community.
But the initial Dartmouth data, based on small and preliminary surveys, shows that hospices welcome this tool. Nine hospitalizations had been prevented. That may have saved something like $125,000. It may have also saved nine families -- and their doctors and nurses -- a great deal of distress