Definition of Hospice Care: The website of the National Hospice and Palliative Care Organization defines hospice care as follows:
“Considered to be the model for quality, compassionate care for people facing a life-limiting illness or injury, hospice care involves a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient's needs and wishes. Support is provided to the patient's loved ones as well. At the center of hospice and palliative care is the belief that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so.”
For excellent overviews of hospice care, see the following sites: National Hospice and Palliative Care Organization, the American Hospice Foundation, Caring.com, and WebMD.
Please refer to my article on when to engage hospice care services. The purpose of the present article is to provide guidance for selecting the best hospice provider.
According to Linda Nelson, LSCSW, CMC, a Professional Care Manager with Creative Consultants in Kansas City, some of the most important features of a high-quality hospice provider are:
1. The provider is Medicare-certified. Most hospices today are certified, but you want to be absolutely certain. If the hospice is not Medicare-certified, then Medicare will not pay for the services.
2. The hospice has been in existence for at least three years. Many new hospices crop up, but some don’t last very long.
3. The provider responds to emergencies promptly. Ideally, they will respond to any emergency within 30 minutes.
4. The organization offers comprehensive bereavement services. Medicare requires that certified providers offer bereavement services for the family, both before and after their loved one dies, but some hospices go beyond the basic requirements.
A preliminary step to engaging hospice care services is to obtain a referral from your loved one’s physician or nurse practitioner. He or she must certify that the patient is expected to live less than six months if the current illness runs its normal course. You cannot enroll your loved one in a hospice without this referral.
Five Steps for Choosing a Hospice Provider
1. Compile a List of Hospice Providers in Your Area: You can put together a comprehensive list of hospices in your area by using the searchable database of the National Hospice and Palliative Care Organization (NHPCO). You can also Google to find local hospices, but information provided by the NHPCO will be more complete.
2. Get Recommendations for Each Organization in Which You’re Interested: To narrow down your search, you can get recommendations about the various hospice providers in which you’re interested, and then focus on the ones that received good reviews. To get recommendations, ask your physician or a hospital or nursing home social worker. You can probably get the best recommendations, however, from your friends, family or neighbors who have used a given hospice.
3. Talk With Other Families Who Have Used a Hospice in Which You’re Interested: Ask hospices in which you’re interested to provide the names and contact information of some of their current and/or previous clients. Talking with these people can probably provide you with the best evaluations.
4. Interview a Staff Member of the Hospice. Most hospices have a staff person dedicated to admissions. You can talk to this person either by phone or that person may come to the site where the patient lives.
When I Googled “Selecting a Hospice Provider” I found scores of articles on the topic. Most had a list of questions to ask during interviews. The following are, in my opinion, some of the most important questions presented by the American Hospice Foundation:
- How long has the hospice been in operation?
- Is the hospice Medicare-certified?
- What is the expectation about the family’s role in caregiving?
- Are there limits on treatment the patient is currently receiving?
- Does the hospice offer extra services beyond those required?
- How rapid is crisis response?
- What are the options for inpatient care?
- If the family caregiver becomes exhausted, is respite care available?
- Are their MDs/RNs certified in palliative care? (While not required, it is a good certification to have.)
- How are patient/family concerns handled?
- What kind of bereavement services does the hospice offer family members after their loved one’s death?
Another extensive list of interview questions is provided by the National Hospice and Palliative Care Organization. You can Google “Selecting a Hospice Provider” to find still more questions. You might also consult the list provided by Medicare.
5. Visit Freestanding Hospice Facilities on Your List (if any): Hospice services are provided in the patient’s home, assisted living facilities, nursing homes, hospital hospice units, or free-standing hospice facilities. If you are considering a freestanding hospice, it would be wise to visit the facility.
Ms. Nelson states that the most important things to look for in visiting a facility are the attitudes and behavior of the staff. You can usually tell whether their work is just a job for them or if they are genuinely caring—whether their work is a life-long personal commitment. She adds that you shouldn’t be overly impressed by how fancy the facility is, as long as it’s clean. The fanciest and newest facilities don’t necessarily provide the best care.
In addition, when you visit free-standing facilities, you should ask the same questions listed above in item 4.
It’s painful to make the decision to engage hospice care services for your loved one. However, once you’ve decided to move forward with it, spending some time doing a little background research will help ensure that you find the very best hospice provider for your loved one and your family.
This article is a slightly revised version of an article published on the Alzheimer’s Reading Room.
Marie Marley is the author of the award-winning book, “Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy,” and co-author (with Daniel C. Potts, MD, FAAN) of “Finding Joy in Alzheimer’s: New Hope for Caregivers.” Her website (ComeBackEarlyToday.com) contains a wealth of information for Alzheimer’s caregivers.