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 they desire. What are the pros and cons of hospice care?
Take the time to learn more so you can make an informed decision about your care or the care of a loved one.
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 However, that is outdated thinking that should not stop you from considering hospice services. Rather, hospice is designed to provide comfort care that can make the end of life easier to bear and more comfortable.
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. 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. The patient’s loved ones receive support as well.
Importantly, patients in hospice can stop hospice service whenever they want.
The benefits of hospice care.
There are many benefits to the patient and family, including:
- Expert pain and symptom management, helping patients be as comfortable as possible.
- Emotional support for the patient and 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.
Who should receive hospice care?
In order 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.
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/families specifically ask; it turns out that 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.
Services for patients at home or in a long-term care facility.
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.
What are the potential negatives of hospice care?
Hospice care is a rapidly growing industry with over 4,000 hospices in the US. Although some hospices provide safe, wonderful care, others provide dangerous, subpar care.
Problems with in-home hospice care.
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.
Widespread issues exist at hospice facilities.
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.
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.
What is the cause of problems?
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?
Bad. Very bad.
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.
Beware of for-profit hospices!
Unfortunately, an increasing number of hospices are owned by private equity firms, who generally put profits over patients. In fact, 2/3 of hospice agencies in the US are now for-profit companies.
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?
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.
- Call your state hospice organization (find contact information for your state at Medicare.gov/contacts).
- Visit Medicare’s Care Compare site to learn about services provided and quality of care. However, it’s important to realize that for legal reasons, 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 the OIG and other investigations found serious, concerning issues, hospice remains a very helpful service for patients at the end of life and 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 do your homework before choosing a provider!