“Hospice is giving up.” “Hospice is too expensive.” Maybe you have heard these statements said about hospice care at some point. Maybe you have said them yourself. There are unfortunately many misconceptions about hospice out there.
Hospice care can be misunderstood. But contrary to the hearsay and myths you may have heard, the purpose of hospice is to provide care, support and comfort to both patients and their family members. The focus is on improving or maintaining the highest quality of life through emotional, spiritual and physical support. Millions of Americans have experienced this firsthand. According to the National Hospice and Palliative Care Organization’s (NHPCO) 2015 report “Hospice Care in America,” 1.6 to 1.7 million people received hospice care in 2014.
Here are some other helpful hospice statistics:
- The Medicare hospice benefit was the main payment source for 85.5% of hospice patients in 2014 according to the NHPCO’s “Hospice Care in America” report.
- A recent study demonstrated that family members are more satisfied with loved one’s end of life care if they receive hospice services, with 80% of families surveyed saying their love one’s end of life wishes were followed.
- Hospice patients can receive care wherever they wish. NHPCO’s report showed that 58.9% of patients received care in the comfort of their home.
- The first hospice program was created in 1974. Today there are about 6,100 hospice programs according to the NHPCO report.
- Bereavement support is an important part of hospice services. The NHPCO report shows that 91.6% of hospice agencies offer bereavement support to community members.
In an effort to dispel the most common myths about hospice and to reinforce the reality of hospice care, we’ve created an extensive list of 34 hospice myths and misconceptions.
34 Hospice Myths & Misconceptions
Hospice myths are prevalent, but misleading. Here are the most common ones that we have come across.
1. Hospice is giving up.
Based on the 1.2 million search results for “hospice is giving up," it’s not surprising why so many people believe this to be true. But hospice care is not giving up. Instead, hospice services are there to provide comfort and improve quality of life and to help carry out the wishes of the patient.
2. Hospice is a place.
Hospice is a philosophy of care and can be received wherever the patient and their loved ones prefer. This includes at home, in a senior living facility, or in-patient if needed.
3. If you choose hospice, you can’t keep seeing your primary care physician.
Another common hospice myth is that you can no longer see your PCP (primary care physician). If preferred, the patient’s current primary care physician can remain their doctor while on hospice care.
4. Family members need to be around to help out with hospice care.
Hospice can be arranged whether family members are able to help with care or not. Many programs now offer full-time inpatient units, or arrange for volunteers and other care staff to care for patients in their own homes.
5. Hospice is only for cancer patients.
Hospice is available for any patient coping with the end-stage of any chronic disease, including kidney failure and Alzheimer’s, and virtually any other life-limiting condition.
6. An immense amount of pain is just a part of dying. It’s unavoidable.
While pain often is part of the dying process, hospice care professionals are trained to help manage pain at the end-of-life. Hospice doctors, nurses, and other professionals are able to recognize what stage of the end-of-life process the patient is at, and adjust their care accordingly.
7. If you choose hospice, you have to leave your home.
Another common myth is that you must “go to hospice.” But hospice care can often times be administered at home. In fact, most hospice patients tend to prefer receiving care at home.
8. Hospice hastens death.
Obviously, the majority of hospice patients do pass away within hospice care, and this likely explains how this misconception came to be. But the truth is, hospice care does not speed up death. In fact, those who employ hospice care may live longer than those who choose not to use hospice services.
9. Hospice is staffed by all volunteers.
While hospice services are required to have volunteers available, the actual care is provided by medical professionals, chaplains, and licensed social workers. This hospice myth is simply false!
10. Hospice is only used in the very last weeks of life.
Hospice care can begin when the patient’s physician gives a prognosis of six months or less if the disease follows the expected course. Hospice often provides such comfort and support that many outlive their expected prognosis.
11. Hospice is too expensive.
Hospice care is covered under the Medicare hospice benefit, Medicaid and most private insurance plans. Patients are not denied hospice care regardless of ability to pay.
12. You NEED Medicare or Medicaid to receive hospice.
Another hospice misconception is that that Medicaid or Medicare is a necessary prerequisite to receive hospice care in the first place. In reality, there are many different payment options available for hospice care.
13. Hospice only lasts for six months.
A patient is referred to hospice care when a doctor’s prognosis is six months or less. However, if the patient lives longer, hospice care can absolutely continue.
14. A doctor has to make a referral for hospice care.
Anyone, including a family member, a caregiver, or the patient themselves, can make a referral for hospice care.
15. Hospice care only helps the sick person.
Hospice care is very much a comprehensive service for both the ill person and their family members. Spiritual and emotional support is offered for the patient’s loved ones as well as the patient.
16. Hospice administers morphine to speed up death.
Morphine may be used in small doses to help patients feel more comfortable. It is not used in dosages large enough for patients to become addicted or sedated.
17. Hospice means the patient no longer has a say in their care.
Hospice care is the exact opposite of this myth! Hospice care centers manage the wants and needs of the patient. Care plans are individualized to what the patient wants and needs.
18. Hospice care is not as good as curative treatment.
The quality of care received while on hospice is just as high as being in a hospital setting; the focus of the care is just different. Hospices are staffed by highly trained medical professionals who are trained to handle crises and around-the-clock needs.
19. Doctors will decide which hospice program for the patient.
Patients and their family members will have the final say in which hospice program best meets their needs.
20. All hospice programs are the same.
Hospice programs must follow a set of rules and regulations determined by the state, however support services may differ. It is important to find one that offers the right care.
21. The patient can never return to regular medical treatment once on hospice.
If the patient shows improvement in condition or wishes to return to curative treatment, they can be discharged from hospice at any time.
22. Hospice care ends when the patient dies.
This is not true. In fact, bereavement services are offered for family members for a minimum of one year.
23. Hospice provides 24 hour care.
While hospice staff members are available 24 hours a day, seven days a week, but do not necessarily provide continuous care. For patients who need an extra amount of care, inpatient programs that provides continuous care may be best.
24. Families should be isolated from a dying patient.
Hospice emphasizes the important role of the family during this difficult time. Families are encouraged to be a part of their loved one’s care and to spend as much time with the patient as possible.
25. Hospice is only useful for administering pain medication.
Hospice is so much more than just doling out medicine. Hospice care focuses on the whole wellbeing of the patient. This includes spiritual, emotional and physical care.
26. Hospice requires that you give up medication.
Hospice care is focused on making the patient as comfortable as possible. This means that some patients may choose to give up medications that have heavy side effects, like chemotherapy. However, these decisions are left up to the patient and their loved ones.
27. There isn’t hospice available in my area.
Hospice care is actually more widely available than people realize. Your primary care physician likely has a hospice service provider that they regularly refer patient to, and they can help make a recommendation.
28. Hospice patients are sedated so much that they sleep all the time.
Pain management is the main goal of medications administered by hospice programs. But the dosage amounts start out very low and are only increased if the patient feels more pain. The idea that hospice providers sedate patients is a misconception.
29. Hospice patients must sign a Do Not Resuscitate (DNR) order.
A signed DNR is not required to receive hospice care.
30. Receiving hospice care means you can never go to the hospital.
Hospice patients can absolutely go to the hospice to help control symptoms or to provide respite for family members.
31. Hospice has no religious affiliation.
Actually, if the patient chooses so, religion can be a part of the hospice process. Most hospice staff includes chaplains from various faiths to offer support and comfort if patients so choose. If a patient is not religious, but wishes to discuss spiritual matters generally, chaplains are qualified and able to provide counsel.
32. If the patient doesn’t feel pain, it’s too early for hospice.
Hospice care can begin based on the patient’s prognosis. They may want the extra comfort and support that hospice can provide as early as possible.
33. Hospice stops providing food and water to patients so that they die faster.
Hospice programs will never deny food or drink to any patient. However, it is a natural part of the process that some patients do not feel hungry or thirsty at the end of life. But it is a myth that hospice actively discourages eating and drinking.
34. It is hard to enroll in a hospice program.
For most hospices, it only takes a phone call for care and services to be arranged.
Find out more about how hospice can help you and your loved one and to clear up any continuing misconceptions about hospice:
- Six Gift Ideas for Hospice Patients
- How Does Hospice Work?
- Who Pays for Hospice Care?
- Challenging the Misconceptions of Hospice Programs
If you wish to speak with someone regarding hospice myths and misconceptions or generally about hospice care, please call 215-371-3400. A senior care expert is available 24 hours a day, seven days a week.