4 and 1/2 Things You May Not Know About Hospice Care

I'm often in the position of suggesting hospice care as an option for patients in the last months of life. The first thing I do is gauge what people know, or think they know, about hospice. because over the years, I've encountered a great deal of confusion on this topic. In case you're not already an expert, here are a few pointers to help you understand the basics.

1. Hospice isn’t a place. This is a common misconception - maybe because the word sounds like “hospital,” or maybe because it’s appealing to imagine there are freestanding facilities where people can go to die peacefully. However, typically when a hospice program does have a designated inpatient unit, the beds there are reserved for short-term stays, usually no more than a couple of days, and generally only for patients whose symptoms cannot be effectively managed at home. An important exception is New York’s Calvary Hospital, where the average length of stay is 26 days.

2. Home hospice refers to services coordinated - and delivered - by a certified agency that receives reimbursement on a per-patient per-day basis. The services provided are determined by Medicare regulations and include nurse visits, home health aides, volunteers, spiritual support, and a social worker. The care is designed to ease the burden on families and allow the patient stay at home as long as possible (though sometimes “home” may mean a nursing home or assisted living facility). Needed supplies and medications are delivered directly to the home and, if the patient's symptoms warrant, a skilled nurse can be available to provide direct care for short periods. For more details, this document is a good summary of Medicare's Hospice Benefit. Private insurance benefits may not be identical to Medicare’s when it comes to hospice services, just something to keep in mind. A hospice agency can make the necessary inquiries and let you know the services for which you qualify.

3. Hospice does not provide round-the-clock care. This is another common misconception and often the biggest surprise to families since day to day caregiving is often their most crucial need.. A home health aide may be provided by hospice for a few hours a day, usually for 5 days a week. While welcome, this is far from the 24/7 coverage required to keep up with the demands of many very ill or dying patients.

4. You have choices when it comes to Home Hospice. Agencies serving New York City include:

  • MJHS - Metropolitan Jewish Health System Hospice and Palliative Care. 212-649-5555
  • VNSNY - Visiting Nurse Service of New York Hospice and Palliative Care. 212-609-1900
  • Calvary@Home - 718-518-2000
  • Hospice of New York - 718-472-1999

All hospice agencies are governed by the same Medicare regulations, but for each individual patient and family, it’s worth knowing that there can be substantial differences among agencies in terms of responsiveness, quality (and quantity) of services offered, accessibility to staff by phone, and even willingness to admit the patient for services in the first place. If one hospice is unavailable to do an admission you can try another. Once you’re receiving services, if you’re not happy with the care your loved one is getting (and you feel you’ve exhausted all resources to get it) you may be able to switch to a different agency to see if that makes a difference. Complaints about agencies in New York should be directed to the New York State Department of Health. Their Home Health Hotline is 800-628-5972.

Finally, as usual the glass is only half-full. While hospice agencies have amazing resources at their disposal (their nurses are some of the best I work with), there are reasons you may not wish to choose hospice care at the end of life. I will tell you why and describe your other options in my next post. Stay tuned.