Misunderstanding Hospice
There are some very common ways that people are misunderstanding hospice. For many people, hospice is a new experience, and with that inexperience can bring misunderstanding of what hospice is. Here are some common things where people are misunderstanding hospice.
Misunderstanding
Hospice shows that a person is giving up on life and losing all hope
The Truth Is…
For people with a life-threatening disease or illness, hope may look different over time as the disease progresses. In the beginning, hope may be for a cure, but as medical options become futile and symptoms progress, hope may be redefined. At the end of life, most people hope for comfort, peace, and quality of life. Many people are able to express hope around leaving legacies for their families. Especially at the end of life, families and hospice caregivers never give up caring for their loved ones. Even when medical resources to cure or alter the course of illness have been exhausted. Hospice is medical and supportive care with the goal of comfort and dignity when life matters most.
Misunderstanding
Hospice is only for people dying from cancer
The Truth Is…
When hospice care began in the United States in the mid-1970s, most hospice patients were dying of cancer. Today, the majority have other life-limiting illnesses such as end-stage heart, lung or kidney disease, or Alzheimer’s and other dementias. Hospice is still for cancer patients, but it is also for so much more.
Misunderstanding
Hospice is where you go to die
The Truth Is…
Most hospice patients receive care in their home. This includes private residences, assisted living communities, hospitals with specialty hospice units, or other residential care facilities, such as nursing homes.
Misunderstanding
Hospice means death is imminent
The Truth Is…
Although hospice care neither hastens death nor prolongs life, studies have shown that patients with certain illnesses actually live longer with hospice care than those with the same illness who choose not to receive hospice care. Furthermore, regardless of the illness, patient and family satisfaction with services received are consistently higher when hospice is involved.
Misunderstanding
You can’t keep your own doctor when you begin a hospice program
The Truth Is…
A person’s family doctor or specialist is encouraged to remain engaged in care, even after hospice is providing care. The hospice physician works closely with the patient’s doctor, especially during the transition to hospice care. In this time, it is important to determine the specific medical needs that will be addressed in an individual plan of care to make sure that the transition to hospice care is as seamless as possible.
Misunderstanding
It is the doctor’s responsibility to suggest hospice
The Truth Is…
Anyone, including primary care physicians or specialists, can bring up hospice care and initiate a hospice referral for anyone with any life-threatening illness. This includes members of the family. While anyone can ask for a hospice evaluation, two physicians will need to agree that the patient is eligible. Usually, one of these physicians will be the hospice agency’s medical director, and the second one can be a family physician or specialist. In the instance the patient does not have another physician involved in their care, the hospice provider will generally be able to provide this service.
Misunderstanding
Once you choose hospice care there is no turning back
The Truth Is…
Once enrolled in hospice care, patients are free to leave a hospice program at any time, for any reason without penalty. Re-enrollment in a hospice program is possible as long as medical eligibility criteria are met.
Misunderstanding
If you choose hospice care, you will not receive other medical care
The Truth Is…
The hospice team will provide all aspects of care for the illness that qualifies someone for hospice services. Patients are still free to seek treatment for unrelated illnesses or conditions. For example, if someone is receiving hospice care for cancer and falls, they can still get treatment for a broken hip.
Misunderstanding
Hospice requires a DNR (Do Not Resuscitate) Order
The Truth Is…
Patients are not required to have a DNR to receive hospice care. The purpose and benefit of hospice care is to allow for a peaceful passing in a comfortable and familiar setting like home with loved ones near. While many people who enroll in hospice care wish to have a DNR to avoid unnecessary medical intervention and hospitalization, patients are not required to have a DNR to receive hospice care.
Misunderstanding
Disabled people are ineligible from receiving hospice care
The Truth Is…
Individuals with intellectual and developmental disabilities (I/DD) live much longer today and generally die of the same illnesses and conditions present in the general population. While state and local regulations may be barriers in some locations, the same hospice care provided to any patient/family is generally available to those with I/DD, whether in a group home or another residential setting, and can include support for direct care staff. Also, it is important to recognize and respect that many individuals with I/DD have the capacity to participate in decisions about their end-of-life care, whether through an advance directive or in conversation, and should be informed about their illness, the options available, and the type of care those choices involve.
Misunderstanding
All hospices are the same
The Truth Is…
There are thousands of hospices in the United States. If they participate with Medicare, as most do, they are required to provide certain services to the patient and documentation to the government. In that respect, they are the same. However, hospices may be nonprofit or for-profit; they may be community-based or serve many communities, cities or states from a central location; they may be independent or part of another organization such as a hospital, health system or private company. The point is that all hospices (that participate with Medicare) meet the same basic requirements although there likely are differences from one provider to the next.
