Hospice Mythbusters: What is Fact and What is a Myth?

When some people hear the word hospice, they think of dying. While that is not wrong, it is not the whole truth. Hospice care is about the quality of life you or a loved one has during their end-of-life journey. It is generally for patients who, with a normal progression of a terminal illness, have a prognosis of six months or less of life.

The dying process can be scary, unknown, and painful, both physically and mentally. Hospice is a way to allow the dying process to be peaceful, planned for, and pain-free. It’s hard to understand the transition from curative care to Hospice care. Here is a checklist to help you know what to expect with hospice services.

1. Help. The hospice team will be there every step of the transition to make things easier for the patient and family members. We are there from the start of the hospice journey, through the end-of-life transition, and for loved ones up to 13 months after the patient has passed.

2. Simplify. One physician’s order will start the hospice care journey. You will not be buried in a mountain of paperwork. The goal is to simplify the paperwork, so that you can focus on you or your loved one’s comfort.

3. Team. The hospice team consists of: Physician, Nurse, Social Worker, Chaplain, Aide, Bereavement Support, and Volunteers.

4. Comfort. Our job is to make sure the patient and family are getting services, supplies, and information needed to feel comfortable, calm, and confident.

Hospice comes with a lot of misconceptions. Hospice is about living life to the fullest for whatever amount of time you have left. Here are a few common misunderstandings and the reality of what hospice means.

Myth: Hospice is a facility you go to for medical care.

Fact: Hospice is a service, not a building. The hospice team will come to you in the comfort of wherever you call home – whether that is a personal home, assisted living community, or skilled nursing facility.

Myth: If I am on hospice service, I cannot go to the hospital.

Fact: While hospice strives to manage pain and symptoms outside of the hospital setting, a hospice patient always has the choice of whether to go to the hospital. The Medicare Hospice benefit covers short-term general inpatient care in the hospital when a patient’s symptoms cannot be managed in another care setting.

Myth: Hospice is about helping a patient die.

Fact: While hospice provides comfort care while a patient is dying, the service is there to emotionally, mentally and spiritually care for a patient while providing medical comfort care. But also, to make sure that a patient’s loved ones are fully supported during this difficult transition as well. Grief and bereavement support is available for up to 13 months after a patient has passed for if and when loved ones need that support.

Myth: Hospice is for the last few days of life.

Fact: There is no limit to the amount of time a patient can be on hospice services. Hospice is for patients with a terminal illness that have a prognosis of six month or less of life. Hospice will continue to provide the same care for you as long as you remain hospice eligible. Some people live longer than their original prognosis once their pain and symptoms are under control. If the prognosis remains the same, the hospice patient will remain eligible for hospice services. This is called a recertification period and is collectively managed by the hospice medical director, the patient’s physician and hospice team. 

Myth: I cannot get better on hospice.

Fact: If a hospice patient shows signs of improvement and the illness seems to be in remission, patients can be discharged from hospice services. If a discharged patient should later need to return to hospice care, Medicare and other insurance providers will allow for this.

Myth: Hospice is expensive.

Fact: Hospice services are fully covered under the Medicare Hospice benefit. Medical equipment, care, medication and supplies related to the admitting hospice diagnosis are fully covered under Medicare Part A. This includes shower chairs, oxygen tanks, hospital beds, toileting supplies, and more. In fact, most hospice patients do not have any out-of-pocket expenses.

Myth: Hospice is for patients with cancer.

Fact: Not at all! More than 60% of hospice patients nationwide have a diagnosis other than cancer. Many patients have other diagnoses or advanced stages of chronic diseases such as cardiovascular disease, pulmonary disease, Alzheimer’s disease, renal disease, or neuromuscular disease.

Myth: I have to switch to the hospice doctor.

Fact: Your primary care physician will remain an integral part of your care. The hospice team will collaborate and communicate with your physician while you receive hospice care. Essentially, your physician will join your care team, not be replaced by it.

Myth: You cannot take medicine while on hospice.

Fact: Patients can keep taking some medications while on hospice. Hospice patients are prescribed medicines that manage the symptoms of their terminal illness and improve quality of life. Medicine is given as needed and physicians try to give just enough medicine to manage symptoms and ease pain.

Myth: I have to stay with the patient 24/7

Fact: In the early weeks of care, it is not usually necessary to be always with the patient. Later, however, since one of the most common fears of patients is the fear of dying alone, we generally recommend that someone be there continuously. While family and friends do deliver most of the care, the hospice team can provide volunteers to assist with errands and to provide a break and time away for primary caregivers. While no one from the hospice team will move into your home, they will work with you to establish a frequency of visits that meet your unique needs. If some circumstances, caregiver respite is available. Individualized plans of care are created unique to each patient and will help to determine needs of both the patient and the caregiver(s).

 

Hospice is generally for patients who, with a normal progression of a terminal illness, have a prognosis of six months or less of life. But that does not mean that the diagnosis and prognosis are the end-of-life. While the focus shifts from curative care to comfort care, there are a lot of memories that can be made. Hospice is a service provided to ensure that the patient and family get to focus n the memories, instead of the care.