No one likes to discuss end-of-life care and death. But it’s worth having the difficult conversations because patients should be as comfortable as possible, receiving the level of treatment desired. You may be thinking about using hospice care, but before you decide, you must consider the pros and cons of hospice care.
For many, the word hospice brings up negative thoughts of very sick people spending their last days and weeks in a depressing hospice facility. However, hospice is designed to provide comfort care that can make the end of life easier to bear and more comfortable. But, and this is a big but, more than 2/3 of hospices are now owned and run by for-profit companies that care more about money than the patients they care for.
A report by ProPublica and The New Yorker magazine sums up the problem: “Easy money and a lack of regulation transformed a crusade to provide death with dignity into an industry rife with fraud and exploitation.”
Therefore, it’s important you take the time to learn more so you can make an informed decision about your care or the care of a loved one. Consider the pros and cons of hospice care and choose a provider carefully.
What is hospice care?
Hospice care is a philosophy of treatment focused on caring, not curing. The goal is to help patients get the best quality of life in the time remaining. Patients must agree to stop any curative care.
A hospice team likely includes nurses, aides, social workers, clergy, and bereavement counselors. Hospice staff care for any type of physical and emotional symptoms that cause pain, discomfort, and distress. The care is specifically designed around the patient’s needs and wishes, although the patient’s loved ones receive support as well.
Importantly, patients in hospice can stop hospice service whenever they want. And if patients are still alive after their 6-month period in hospice, doctors can repeatedly recertify them for additional 6 months of hospice care.
Who should receive hospice care?
To qualify for hospice care, two doctors must certify that the patient has a life-altering condition with a life expectancy of less than 6 months. However, it’s important to understand that this expectation is a guess – there is no scientific way to know for certain how much time a person will live with a given set of medical conditions.
Although 1/2 of all Americans now die in hospice care, many patients who could benefit from hospice don’t receive it at all or enroll at the very end of their life, missing out on the benefits. Although end-of-life discussions are difficult, it’s worth the time and effort to make sure the patient is as comfortable as possible until the end.
Black patients receive less hospice care.
Unfortunately, race impacts a patient’s likelihood of receiving hospice care. One large study found that Black patients were significantly less likely to use hospice than white patients. Furthermore, Black patients were more likely visit the emergency department and more likely to undergo intensive treatment in the last 6 months of life, as compared with white patients regardless of cause of death.
How do patients get hospice care?
If you think you or your loved one could benefit from hospice care, talk to your doctor. Doctors may not recommend hospice care unless patients and/or families specifically ask because doctors often feel uncomfortable talking about end of life issues.
In fact, one survey found that 46% of doctors frequently or often felt unsure about what to say during end of life conversations, and only 29% had received formal training on how to have these difficult conversations.
An additional roadblock can be determining when a patient can/should receive hospice care. Since Medicare and most private insurance companies only cover patients with less than 6 months, doctors may find it hard to determine if a patient qualifies, since all patients differ in their health trajectory.
Unfortunately, all of these stumbling blocks mean that many people who could benefit from weeks or months of hospice care are not getting the care until the last few days of their lives.
Where can you get hospice care?
Hospice care is frequently provided in the patient’s home, but patients can receive hospice care in freestanding hospice centers, hospitals, and nursing homes and other long-term care facilities.
Hospice can provide a range of support and help, including:
- Arranging for the delivery of all the needed equipment and supplies, including a hospital bed, bedside commode, medications, etc.
- Sending a variety of qualified staff to make the patient more comfortable. Staff can include a registered nurse, social worker, home health aides, and a chaplain.
- Non-medical support of patients and family members from a trained hospice volunteer. Volunteers may perform a variety of tasks, including running errands, staying with the patient to give family members a break, preparing light meals, and lending emotional support.
- Access to 24/7 support. If you need a nurse after normal business hours, most hospices have registered nurses who can respond to a call for help within minutes.
Is hospice care covered by insurance?
Medicare, Medicaid, most private insurance plans, HMOs, and other managed care organizations cover hospice care, paying all or most of the expense. But you should check with your provider to learn the details of your coverage.
Because Medicare and Medicaid only cover hospice care in hospices they’ve approved, check eligibility before choosing a provider or facility.
The benefits of hospice care.
Although there are pros and cons of hospice care, the benefits are many if you choose a quality provider.
The benefits to the patient and family include:
- Expert pain and symptom management, helping patients be as comfortable as possible.
- Emotional support for the patient and family, including bereavement support for the family.
- Following a patient’s choices regarding their end-of-life care.
- Helping patients stay at home during their end-of-life.
- Help with practical tasks like bathing and feeding the patient. Additionally, hospice workers may help with household tasks and errands.
- Giving family caregivers a chance to take a break from caregiving tasks.
Additionally, studies have shown that hospice care can significantly lower hospitalization rates, ICU admissions, and the number of invasive procedures performed at the end of life. Finally, hospice care can significantly lower the total costs of care during the last year of life.
What are the potential negatives of hospice care?
Although some hospices provide safe, wonderful care, others provide dangerous, subpar care. Importantly, the pros and cons of hospice care relate mostly to the choice of hospice care provider.
A 2017 analysis by Kaiser Health News of 20,000 government hospice inspection records found that “missed visits and neglect are common for patients dying at home”. Families and caregivers filed over 3,200 complaints with state officials in the past five years. Subsequently, government inspectors found problems in 759 hospices — more than half were cited for missing visits or other services they had promised to provide.
Worrisome results from an OIG evaluation.
In July 2019, the Office of Inspector General (OIG), of the US Dept of Health and Human Services, released reports that illustrates widespread deficiencies at hospice facilities throughout the US. Sadly, the OIG found that 87% of 4,563 US hospices violated at least 1 of Medicare’s safety requirement over a 5-year period. Deficiencies included failures to train staff, manage pain, and treat bedsores.
Additionally, for the same 5 years, the OIG found a tripling in the number of hospices which had severe complaints filed against them.
The issues identified can lead to poor care and can jeopardize patient safety. According to the OIG report, the most common hospice deficiencies involve:
- Poor care planning.
- Mismanagement of aide services.
- Inadequate assessments of patients.
Additionally, hospices had other problems that also posed risks to patients, including:
- Improperly vetting of staff.
- Inadequate quality control.
How bad can these problems get?
The OIG report provides examples of harm caused by serious lapses in care found in 2016 at hospice facilities. Here are a few examples:
- One hospice failed to treat a patient’s wounds, which then became gangrenous. As a result, the patient needed an amputation of the lower left leg.
- Inspectors found maggots around the insertion site of a patient’s feeding tube.
- One patient didn’t receive his needed respiratory therapy, leading to difficulty breathing and increased fatigue.
- Although there were signs of injuries on the patient’s pelvic area and other body parts, a hospice failed to recognize signs of a possible sexual assault.
Does the government punish bad actors?
Unfortunately, federal regulators rarely punish hospices with bad records. In fact, between 2014 and 2017, according to the Government Accountability Office, only 19 of the 4,000+ US hospices were cut off from Medicare funding.
But, Medicare just recently gained the power to impose fines on problem providers. Prior to this change, Medicare’s only available punishment was to remove a provider from the Medicare program.
Interestingly, some states are taking action on their own. For instance, California placed a moratorium on new hospices after a Los Angeles Times investigation. Additionally, state auditors raised concerns about an influx of tiny new hospices, some without real patients or doctors, that were set up to defraud Medicare.
Beware of for-profit hospices!
Unfortunately, an increasing number of hospices are owned by private equity firms, who generally put profits over patients. As you’ll see as you read more, it’s easy to understand why the trend is currently leading towards less pros and more cons of hospice care.
Although hospices were once run by nonprofit organizations, sadly, 70% of hospice agencies in the US are now for-profit companies. In fact, providing hospice services has evolved into a $22 billion juggernaut funded almost entirely by taxpayers through Medicare payments.
Alarmingly, hospice companies “can expect some of the biggest returns for the least amount of effort of any sector in American health care“. Why? Medicare pays providers a set rate per patient per day, regardless of how much care they provide. And Medicare distributes these payments based on an honor system, allowing widespread inferior care to continue unquestioned.
And because most patients receive hospice care at home and nurses are only required to visit twice a month, hospice businesses can have low overhead. Furthermore, these hospices often rely on unpaid family members to assume many care-related tasks.
Staffing and operations among for-profit vs. nonprofit hospices.
When considering the pros and cons of hospice care, you must understand the differences in staffing and operations between for-profit and nonprofit hospice providers. These differences, which can impact the quality of care, include:
- Nurses in for-profit hospice programs tend to carry higher caseloads and visit patients less often.
- In 2021, nonprofit hospices provided 92 visits per 100 patients. In contrast, for-profit hospices provided 54 visits per 100 patients.
- Nonprofit hospices delivered general inpatient care 2.5 times more often than for-profit ones.
- Nonprofit hospice programs spend more than double on bereavement services for families than for-profit hospices.
Quality of care issues.
A study published in February 2023 analyzed over 650,000 family caregivers’ opinions on the quality of care received from 3107 hospices. Unsurprisingly, family caregivers reported worse care experiences at for-profit hospices compared with nonprofit hospices. However, the reported quality of care varied among both for-profit and nonprofit hospices.
Importantly, 31% of for-profit hospices scored 3 or more points below the national hospice average of overall performance. Conversely, only 12.5% of nonprofit hospices scored that poorly.
No medical background needed; little government oversight provided.
Upsettingly, you can own and run a hospice without any medical training. The ProPublica report’s author states he’s seen hospices owned by accountants, vacation-rental superhosts, convicted criminals, and other non-qualified owners.
Unfortunately, once someone opens a hospice, they receive little oversight. Although complaints about the quality of care are common, regulations only require surveyors to inspect hospice operations once every three years. Unfortunately, as you saw in the OIG report above, the problems in hospice care are widespread and potentially dangerous.
The greedy, never-ending search for new customers.
Clearly, the more patients enrolled, the more money they make. ProPublica and The New Yorker found that for-profit hospice companies use several tactics to enroll new customers.
For instance, many for-profit hospice companies use aggressive sales techniques to enroll patients, with sales quotas and bonuses. In some cases, hospice company sales reps convince prospective customers they can receive free medications, nursing visits, nutritional supplements, and light housekeeping – with no mention of hospice care.
Furthermore, they may exaggerate a person’s condition to make it seem like he/she has less than 6 months to live. Additionally, some hospice companies bribe doctors, with things like trips and cash, to refer patients.
Shockingly, they even found that some companies sign up their friends and family members to become make-believe clients. And others steal personal information to enroll “phantom patients”.
What can happen to you if you agree to hospice care without realizing it?
Unsurprisingly, your health can suffer if you enroll in hospice care without realizing it. Since you cannot undergo curative treatments, you may lose access to treatments that you need and want. For instance, cancer patients could lose access to chemotherapy. Patients can be denied kidney dialysis, mammograms, transplants, and other treatments. Insurance may no longer cover for lifesaving medications.
For-profit businesses try to outsmart Medicare rules.
Of course, it’s impossible for even the best doctors to accurately predict how long a patient can live. And Medicare realizes that a patient might not die within the 6-month timeframe. However, to minimize fraudulent billing, they demand repayment from hospices if their average length of stay – across all patients under their care – is over 6 months.
To avoid repayments, for-profit businesses use several tactics to avoid repayment. One method is to “dump” or discharge patients who have been in hospice for too long. Unfortunately, this can mean a patient will no longer receive needed care and supplies. Interestingly, one whistleblower for a for-profit hospice estimated that in 2007, 70% of the patients in her region left hospice alive.
The second way to avoid paybacks is to make sure their average lengths of stays don’t exceed 6 months. Some providers accomplish this by aggressively enrolling patients with only a few days or weeks to live.
Another tactic is aggressive and criminal – according to the FBI, one Texas hospice owner tried to avoid repayment by telling staff to overdose patients who were staying on hospice for too long. Alarmingly, he texted a nurse about one patient: “He better not make it tomorrow. Or I will blame u.” In a plea deal, the owner was sentenced to more than 13 years in prison for fraud. But here was no mention in his deal about patient deaths.
Whistleblowers report on terrible practices.
When hospice employees notice fraudulent practices or negligent care, they can file a whistleblower claim. Importantly, 7 of the 10 largest US hospices have been sued at least once by former employees under the federal False Claims Act.
For instance, two hospice nurses accused their employer of charging Medicare for ineligible patients. The company, SouthernCare, paid a $24.7 million settlement in 2009, without admitting any wrongdoing.
Similarly, in 2009, a hospice nurse and an administrator accused their employer – AseraCare, a subsidiary of Golden Living – of Medicare fraud. In 2012, the Department of Justice intervened, seeking a record $200 million in fines and damages. In 2020, after 11 years of twists and turns, the government reached a settlement with AseraCare for a $1 million, which AseraCare paid without admitting any wrongdoing. And they were allowed keep billing Medicare for hospice services. After the settlement, in 2020, Amedisys bought AseraCare for $235 million, Notably, Amedisys has faced accusations of admitting ineligible patients, falsifying paperwork, and handing out bonuses to staff to entice new recruits.
Importantly, research shows that although the cost of hospice care is rising, the quality of care is worsening, with staffing issues a key problem.
How to choose a hospice?
Clearly, there are pros and cons of possible hospice care providers in your area. Because the risk of problems is high, do your research before choosing a provider or facility:
- First of all, ask your doctor, friends and family for referrals. A personal recommendation is likely the best way to make a choice.
- Whenever possible, avoid for-profit hospice providers!!
- Search online for complaints and/or lawsuits filed against any companies you are considering.
- Visit Medicare’s Care Compare site to learn about services provided and quality of care. Importantly, these reports do not contain data on deficiencies gathered by private accrediting organizations. Therefore, some important quality data is missing.
- If you plan on in-patient care at a hospice facility, a family member/trusted adult should visit in person. How do the staff interact with and treat the patients? Do the patients look well cared for? Are the facilities clean?
- Use the helpful worksheet provided by the National Hospice and Palliative Care Organization to help you evaluate the hospices available in your area.
Want to learn more?
Visit these sites to learn more:
- Centers for Medicare and Medicaid Services booklet on hospice
- Compassion and Choices
- Hospice Foundation of America
- National Hospice and Palliative Care Organization
- The Conversation Project
My final thoughts on the pros and cons of hospice care…
Although investigations found serious, concerning issues, a well-run hospice can be a blessing for patients at the end of life and for their families. Personally, when my teenage son Zach was near the end of his life, the services we received from hospice (and palliative care) were very helpful and appreciated.
So, if you, or a loved one, is near the end of life, I suggest you consider hospice care. But since some providers are significantly better than others, take the time needed to pick a provider! And don’t be afraid to switch if you choose a provider that doesn’t work out.
NOTE: I updated this post on 2-28-23.