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End-of-life care is often misunderstood, causing many people who would benefit from the Medicare-covered services to delay seeking hospice care. Contrary to the stigma associated with hospice, choosing hospice care is not a sign of giving up but rather seeking support and comfort while living with advanced illness. The truth is, there shouldn’t be any guilt or shame associated with addressing the physical, mental, emotional, and spiritual needs that arise for terminally-ill patients and their families. Learning the facts about common hospice myths can help you determine whether or not these necessary services are appropriate for you or your loved one.
Myth #1: Hospice is for people who only have a few days or weeks to live.
Hospice is a service (not a place) designed to support patients who are estimated to have less than six months to live, based on the predicted progression of their illness. Each patient’s hospice care plan is tailored to help that individual and their family live comfortably and meet their personal goals of care. Unfortunately, some patients may not choose to begin hospice care until their disease is so advanced that they only have a few days or weeks left, which is why this myth exists in the first place. The sooner a patient can begin hospice care, the more time we have to stabilize their medical condition and support them physically and emotionally as they maintain their dignity for as long as possible.
Because we have no way of knowing someone’s life expectancy for certain, we continue evaluating each patient’s progress. In some cases, people may graduate from hospice because they don’t decline as expected. In contrast, sometimes people outlive the six months as their health continues declining. In this instance, we can determine that it’s in their best interest to renew services for another benefit period.
Myth #2: Once you start hospice care, you can’t stop it.
Patients have the right to revoke their benefits at any time, which means it’s up to them to determine if and when they want to stop hospice care. As mentioned earlier, some patients simply outlive the six-month benefit because they receive excellent nursing care in coordination with their physician. These exceptional services may lead to them graduating from the program. Once you reach the six-month cap, we reevaluate your condition to determine whether or not you need continued services. In addition, patients and families can elect to stop hospice services whenever they choose by simply signing a piece of paper.
Myth #3: Beginning hospice services means giving up control over your care.
You and your family are in control of your care the entire time you receive hospice services. The role of hospice professionals is to guide, educate, and support patients and their families so that they understand what’s happening and what options they have.
We encourage patients to keep their primary care physician as the attending physician in their hospice care. We also work to create goals of care upon admission so we’re working to meet their individual goals, giving patients and their families all of the control over what kind of services they want. You may be surprised to hear about some of the services available:
- Spiritual support: Chaplains can be helpful sounding boards and also connect you to religious leaders and programs in the community
- Respite care: Volunteers offer to sit with patients, run errands, and help with legacy work, such as writing down people’s stories
- Medical guidance: An RN case manager can help you navigate the services and your illness through constant communication with your attending physician
- Personal care: Aids can help with showers, changing linens, and other personal care tasks
- Psychosocial support: Social workers are available to help navigate paperwork, benefits, and emotional support
- Veterans program: We actively recognize and solute veterans for their service
- Travel support: If a patient is healthy enough to travel and desires to do so, we can work with other hospice organizations to have support in travel
- Bereavement support: Families and caregivers have access to 13 months of bereavement support, including in-person and virtual one-on-one counseling, support groups, and more
Ultimately, you can choose any of the services that you want that will help you meet your goals of care.
Myth #4: Hospice care is always given at a hospital or hospice facility.
You may be surprised to learn that the majority of patients receiving hospice services are at home being cared for by families, friends, or other caregivers. While there is a small percentage in nursing homes, the only patients in the hospital are those who cannot manage their symptoms outside of the hospital setting. The goal is always discharge to their home whenever possible. Through Hospice of St. Mary’s, we do have a six-bed inpatient facility where patients can choose to stay to receive their hospice care, if desired.
Myth #5: You need a doctor’s referral to initiate hospice care.
Just about anyone can make a referral. We do get medical records and other information from the attending physician, but you do not need a referral from a doctor to call and learn about services.
To determine if hospice care is right for you or a loved one, you may way to consider:
- Is the patient frequently making trips to the hospital or ER?
- Is the patient having problems with managing their symptoms or pain?
- Where do we want hospice services to be provided?
- What are the goals of care?
Myth #6: Hospice care is expensive.
Hospice is a benefit through your insurance, so for most there is no cost. In addition, St Mary’s is a nonprofit so we take everyone regardless of their ability to pay. Hospice care can actually save patients money in a lot of ways, as most hospice plans cover:
- Medications
- Durable medical equipment
- Wound care supplies
- Incontinence supplies
- And more
Myth #7: Hospice accelerates death.
Another common hospice myth is that hospice may hasten death. This misconception is sometimes linked to the use of morphine, which may be given for pain management in the final weeks and months of life. However, in appropriate doses, morphine never speeds up death but rather helps to relieve symptoms and make patient’s as comfortable as possible while their disease takes its natural course. Ultimately, death is related to how advanced a patient’s condition is, not because of the morphine or hospice services.
Timely hospice care helps patients live with dignity and comfort in their last months of life.
When hospice is engaged late, we’re in crisis mode and patients don’t reap all of the benefits available to them because we’re just working to get symptoms under control. By establishing hospice care at an appropriate time, we can establish meaningful relationships that help patients to feel supported, encouraged, and comfortable for the rest of their life.
MedStar Health Hospice of St. Mary’s is a not-for-profit service that provides high quality and compassionate end-of-life care for our patients and their families, as well as bereavement support for the communities who experience a loss. If you’re interested in learning more about our services, we invite you to speak with one of our nurses by calling us at 301-994-3023.
