When the roller coaster ride of a serious illness becomes too much to bear, we need expert clinical support to meet our final goals for care. Most of us want to avoid suffering and achieve a peaceful death. In order to do that, we need to find the best hospice. As Dr. Bechor Zvi Aminoff says, “Suffering is not a function of disease; it is a function of inadequate medical and nursing care.”
Jump ahead to these sections:
- What Makes a Great Hospice?
- Not All Hospices are the Same
- 3 Simple Steps to Find the Best Hospice
- FAQs on Finding the Best Hospice
As a registered nurse (RN) of over 40 years, certified in hospice and palliative care (CHPN), I’ve helped patients and families face serious illness and the end of life in hospital intensive care units, outpatient hemodialysis centers, and even my own home.
I was the primary caregiver for my wife, Jeanne, through the years of her decline from Alzheimer’s to her peaceful death in January of 2016. Both Jeanne’s goal and mine was for her to always be safe, comfortable, and content at home, where she could be dignified and loved as a whole person to her end.
A hospice helped us achieve our goal. I have decades of experience in healthcare, including working in hospice, but it can still be difficult to find the right place that fits everyone’s goals and end-of-life plans. Below, I provide background on the hospice industry and steps on how to not only find but ensure that the hospice serves you and your loved one’s needs.
What Makes a Great Hospice?
The best hospice earns the trust of the communities it serves and joins patients and families at a difficult time with skill and compassion. A great hospice provides expert, consistent, and timely care, and attracts, retains, and supports committed staff in a culture of caring, collaboration, and professionalism. Hospice clinicians from nurses, social workers, chaplains, caregivers, music therapists, to doctors and others, work as a team to anticipate, prevent, and alleviate many forms of suffering.
In a hospice, we use proven techniques, treatments, and medications to ease pain, nausea, and difficulty breathing. Working in hospice also requires skill in guiding patients and families through the emotional stress of their experience, including feelings of hopelessness, anger, and fear.
We help family caregivers and others confront the real-world challenges of caring for their loved one, and we support them in their grief after death.
Not All Hospices are the Same
There are many differences among hospices. Some vary in terms of their organizational culture, experience, adequate staff numbers, the quality of their customer service, and of course their care.
A July 2019 report on hospice by the Office of Inspector General (OIG) at the Department of Health and Human Services highlighted serious problems in the hospice industry. The report noted persistent deficiencies, fraud, and mistreatment of patients and families across 300 agencies.
In 2016, the OIG found that 300 hospices, or almost one-fifth of all hospices, surveyed by independent accreditation agencies that year were rated as “poor performers.” Many had a long history of problems and as a result, sustained repeated complaints from patients and families about poor hospice care.
The OIG reported that even when poor hospice care harms patients and families, the offending hospices “do not always face serious consequences.”
There’s currently no way for any of us to know if the hospice we’re considering is a “poor performer,” because none of the information is available to the public.
3 Simple Steps to Find the Best Hospice
There are over 4,500 hospices in the United States, and options for hospice care vary depending on where you live. Medicare pays for most of the hospice care in the U.S. Additionally, Medicare hospice regulations clearly state it’s up to the patient and family to choose the hospice they want.
‘Simple’ doesn’t mean ‘easy,’ but finding the best hospice is possible with some basic research, knowing the most important questions to ask, and understanding what the best answers should be. The goal is to find the best hospice, “Plan A,” with a backup “Plan B,” just in case.
Search HospiceCompare, Medicare’s online national directory of hospices - to build a primary list of the Medicare-certified hospices serving your area.
Research and compare two or three potential hospices as part of your research. You can compare them through HospiceCompare to start off. You’ll want to do some additional searching online, by checking their websites and any brochures they have. Make it a point to speak to people who have experienced the hospice. After all of this, review your choices and see if you’d like to eliminate a hospice from consideration.
Visit these potential hospices to ask questions. For example, you’ll want to have a list of questions handy that include the following:
- Does the hospice have enough staff?
- Who is on the hospice’s staff?
- Does the hospice directly address your specific needs?
- What does a ‘typical day’ with the hospice look like?
- How is the hospice prepared to help you in a crisis or emergency?
- What does the hospice expect from you?
- What do current and former employees say about their experiences with the hospice?
- What do families, physicians, and others say?
FAQs About Finding the Right Hospice
Why is Medicare certification important?
Before a hospice can provide care under Medicare, it must first be certified by an agency in their state that it meets minimum standards set by the Centers for Medicare and Medicaid Services (CMS). Since most hospice patients are over age 65, being Medicare-certified is considered essential for a hospice to be financially viable.
Hospices are required to renew their certifications every 8 years. So first look for hospices that have been certified for at least 10 years, and ideally 20 or more.
What are the Medicare regulations for certification?
Most people working in hospice simply refer to the regulations as “the CoPs,” based on the title of Subpart C - Conditions of Participation: Patient Care.
The CoPs protect patients and families and are a fact of professional life for me and my colleagues. They provide clear guidance on what the best hospice should be, and not always in dry legal terms.
Some of the language can be downright inspiring and describes hospice as an approach to caring that has been proven to improve the quality of life of patients and families. The language details the practices and attitudes that make it possible for someone with a terminal illness to remain at home for as long and as comfortably as possible, and die with dignity.
What is the difference between a for-profit and nonprofit hospice?
Hospice in the U.S. began in the late 1970s as a movement led by community activists, health professionals, and volunteers committed to finding a compassionate alternative to dying in the hospital. They built a model based on caring for seriously ill patients along with their families no matter how the family was defined and on providing care wherever the patient called home.
Dozens of hospices opened across the country, operated as nonprofit service agencies and governed by boards of directors dedicated to their local communities.
A few years later, Congress enacted a new Medicare benefit to pay for hospice care. Over the last 20 years, both the number and money raised in the hospice industry grew exponentially, mostly driven by for-profit hospice companies.
A few hospice companies are publicly-traded corporations and are required to report information about finances, operations, and performance. However, most for-profit hospices are privately-held and do not disclose anything about their financial performance, how they operate, or who their investors are.
By contrast, nonprofit tax-exempt organizations must file an annual report with the Internal Revenue Service (IRS), using Form 990. This information is readily available to the public directly from the organization, and also from online services like GuideStar.
What are ‘Red Flags’ to avoid when looking?
For the most part, you would want to see hospices include at least four types of care: routine care, continuous care, general inpatient care, and respite care.
Routine care is the most common type of hospice care. It’s appropriate for someone whose condition is relatively stable with their symptoms under control, and with adequate support in place to manage the ups and downs of their condition and trajectory toward the end of their life.
Continuous care and General Inpatient care are more intensive than routine care, and are needed in a crisis or emergency that can’t be managed otherwise. For example, it would be applicable to pain that can’t be brought under control, or if an episode of agitated delirium has escalated to a dangerous point.
Note: Continuous and General Inpatient care is also known as “hospice intensive care,” to bring a patient back to routine care.
Respite care provides a temporary stay of up to 5 days for a hospice patient, either in a nursing home or other care facility, and enables the family caregiver(s) to, “take a break,” from the demands of providing care to their loved one.
Don’t consider any hospice that doesn’t provide every level of care, because chances are they may not be able to help you in an emergency or provide you with the respite you’d like from the demands of being a caregiver. In addition, the best hospice will have proficient staff that can address a wide variety of conditions and deal effectively with a range of clinical challenges.
Hospice is About What Matters Most
All hospices will have different intake procedures, practices, and care. No matter which place you choose, you’ll want to feel confident that the hospice communicates frequently, directly, and efficiently with you and your loved one.
The best hospice is one that honors your desires, puts patient care at the top of their goals, and provides all-star medical staff available to respond to all types of situations. End-of-life care is important but is a tricky and sensitive topic to navigate.
When it gets complicated or overwhelming, remember what Medicare says. In the end, choosing the best hospice is up to us.
- “42 CFR C - Conditions of Participation: Patient Care.” govinfo, United States Government Publishing Office, 10 Oct. 2010, www.govinfo.gov/app/details/CFR-2010-title42-vol3/CFR-2010-title42-vol3-part418-subpartC.
- Harrison, Nancy. “Vulnerabilities in the Medicare Hospice Program Affect Quality Care and Program Integrity: An OIG Portfolio.” U.S. Department of Human and Health Services, Office of the Inspector General, July 2018. oig.hhs.gov/oei/reports/oei-02-16-00570.pdf.
- “2019: Vulnerabilities in Hospice Care.” U.S. Department of Human and Health Services, Office of the Inspector General, 9 July 2019. oig.hhs.gov/newsroom/media-materials/2019/hospice/.
- “Dr. Bechor Zvi Aminoff’s Quote.” Professor Bechor Zvi Aminoff MD., PhD. Medical and Philosophy Research, 23 May 2017, www.aminoff-end-of-life-suffering-happiness.co.il/dr-bechor-zvi-aminoffs-quote/.