Hospice care is the most generous and the most underused Medicare benefit. On average, people receive hospice care for only 18 days. Yet we are eligible as soon as our doctor thinks that, even with available medical treatment, we will be gone in no more than six months. If we live longer, we should continue to be eligible.
What you need to know if you are considering hospice care.
What is hospice care?
Hospice care addresses comfort, not cure. There are four levels. All include physician and nursing services; physical, occupational and speech and language therapy; medical supplies and prescriptions; a social worker to help navigate the bureaucracy; and the opportunity for clergy visits and extended bereavement counseling. This last can be an important gift for our loved ones.
Routine care, at home or, about 40% of the time, in a facility, accounts for 98% of hospice care. It is intermittent care, supplemented by family, friends and paid help. If it is provided in an assisted living facility, room and board must be paid for privately, possibly with VA benefits or long-term care insurance. If it is provided in a nursing home, room and board may also be paid by Medicaid when we are Medicaid-eligible and has a contract with a hospice agency.
Hospice also provides in-patient respite care. But despite the care burden on our families, this is rarely taken advantage of: only 0.3% of hospice care is in-patient respite.
When a period of crisis arises in which continuous care is needed to manage pain or acute medical symptoms such as repeated vomiting or air hunger, 24/7 care is available. When the crisis passes, intermittent care resumes.
Similarly, general hospital in-patient care is available if pain or acute or chronic symptoms cannot be managed in any other setting.
When we elect hospice care, we give up trying to cure a terminal disease. But we do have certain rights:
- the right to receive effective pain management and symptom control for conditions related to the terminal illness;
- the right to be involved in developing a plan of care;
- the right to refuse treatment; and
- the right to choose our attending physician.
It may be wise to continue with your community physician if possible. That doctor knows you better. That doctor also will not have a conflict if the hospice agency and you disagree on what you need.
We can choose to leave hospice.
>We can also be discharged if we are no longer thought to be terminally ill or if our behavior seriously impairs the ability of hospice to operate efficiently. For example, if we are seen as disruptive, abusive or uncooperative, the hospice agency may try to discharge us. If you are threatened with a discharge, your doctor and elder care lawyer can help. Sometimes the problem is simply that hospice is not providing certain services, learning too heavily on the family.
Sometimes hospice does not provide the required quality of care. Here, too, your doctor and elder law attorney can help.
When should you choose hospice?
Hospice was developed around care for people with cancer. It is much easier to find a prognosis for many cancers than for other conditions. In addition, cancer treatment itself takes a lot out of a person, so much so that people with some cancers who forego continued treatment and choose hospice live longer than people who do not.
Most hospice patients are not cancer patients. They suffer from chronic illnesses such as heart disease and dementia. “When” becomes a difficult question. Since the way in which hospice agencies are paid makes it very, very difficult to extend hospice beyond six months, and certainly beyond eight, knowing when can be as important as it is difficult.
Doctors are in the cure business. They may not suggest hospice. You may want to raise this possibility yourself, noting that “when” may be hard for them to predict.
Today, half of us die under hospice care. More than half of people on hospice die at home. If you can supplement hospice care with family, friends and paid help, this may be possible for you.
Which hospice agency?
Choosing the right hospice agency can make all the difference. Over 70% of hospice agencies have been sued for fraud at least once by employee whistle blowers and the federal government. Over 70% of hospice agencies are for-profit. There is likely a considerable overlap.
This branch of the health care system is poorly regulated: contractors, not the state, review hospice agencies only once every three years. Money is made on a per person, not a per visit, basis with R.Ns. only required to visit twice a month. By saying someone as sicker than they actually are, a hospice agency can bill the federal government four times as much. There are few requirements for the employees, owners and managers. A 2016-2019 government review found that a majority of hospices had serious deficiencies, such as failure to train staff or manage pain. When a hospice agency is sued, it usually settles for a fraction of the estimated taxpayer theft in order to continue to be able to bill Medicare.
Texas is among the states in which this is a particular problem. Private equity investors start a hospice agency, obtain a Medicare reimbursement number, and offer to sell the agency for as much as $500,000. Since with only 20 patients, a hospice agency could take in $1,000,000 in a year, this may look like a good investment.
How do you protect yourself? Going to the government website (www.medicare.gov/care-compare) is a start. But it is not enough. You may want to focus your search on non-profits and look for red flags. You also need to ask the right questions. The questions below can help you get you started. You can print this document out and note the answers for each agency you interview.
Questions to Ask When Choosing a Hospice Agency
You might also look at Texas Health and Human Services Commission licensing and at the licensing and disciplinary reports on nurses and nurse’s assistants.
You might look at business listings on the Texas Secretary of State website.
Are there multiple “agencies” at the same address? Does the hospice agency appear to be hidden behind a shell company?
Is the hospice agency a member of Leading Edge or the National Hospice and Palliative Care Organization, the two national organizations of non-profit hospices? Yes ____ No _____
Does it provide all four levels of care including General Inpatient Care (GIC), respite contracts with an acceptable nursing home, provisions for continuous home care (CHC) and after hours care?
Yes ____ No _____
If no, what does it provide?
Does it provide information on how to contact the Medicare complaint hotline? Yes _____ No_____
Does it provide information on how to contact the Quality Improvement Organization (QIC) with which Medicare contracts?
Yes _____ No _____
Does it include the Hospice Interim Set (HIS) and Hospice Consumer Assessment of Healthcare Providers and Systems (HCAHPS) as required by the Center for Medicare and Medicaid Services? Yes _____ No _____
Does it participate in the Hospice Quality Reporting Program?
Yes _____ No _____
What is the education and experience of the administrator? [check LinkedIn and professional associations to verify]
Does the administrator oversee more than one hospice agency? Yes_____ No____
What is the education and experience of the patient care manager? [check LinkedIn and professional organizations to verify]
Does the patient care manager oversee more than one hospice? Yes ____ No ____
What experience do the people involved have in working with someone with your (or your loved one’s) specific condition and needs?
Elder law attorney, Terry Garrett, CELA, is a member of the National Academy of Elder Law Attorneys and is an Approved Guardianship Attorney. She assists people in elder law, estate and special needs planning, guardianship and settling estates. She graduated with honors from Cornell University. She was on the Dean’s List at Wharton Business School. She earned her J.D. at Columbia Law School, receiving the Parker Award and a Mellon Fellowship.
