Myth Busting Hospice: What Should Seniors Know?
by Lisa DiFalco
Terminally ill patients and their families may be curious about hospice care but unfamiliar with the benefits. In addition, they may have heard stories that make them believe that an affected individual may not qualify for hospice care. Patients and their families may also believe that continued treatment of a disease is the only option available and not realize the benefits of comfort care as part of end-of-life treatment. Hospice care may be the best option for those who are terminally ill, and it is worth investigating. As Joe Rotella, chief medical officer of the American Academy of Hospice and Palliative Medicine, shared:
“[People] think it’s morbid and focused on giving up. [Rather] it’s focused on quality of life while facing the reality of what’s going on with an illness.”
Myths surround the idea of hospice care, eligibility and treatment delivery. Understand the facts about hospice care for eligible patients and their families.
Myth #1: Hospice Care Is Expensive, and Only a Few Lucky Individuals Can Afford It
Most people do not know whether they are eligible for hospice care and often go without a service that they could benefit from. Hospice care can be surprisingly affordable, with many options available. Many people and their spouses and family members could be receiving hospice support and reducing the burden on caregivers and the stress on the terminally ill. Rotella said:
“The truth is half of patients never get hospice at all. What we see is patients either avoid hospice or call very late.”
In some cases, family members and patients may have difficulty coming to terms with the idea that hospice is the next best step for treatment as it means “giving up” on a cure. However, it is important for patients, spouses and family members to review all of the treatment options available to them and to find the most-effective means of treating patients or providing comfort care. Many seniors who receive Medicare will find that hospice care is almost entirely covered. Coverage extends from homemakers to social workers to nurses and doctors. Other coverage options may include financing through private insurance, the Department of Veterans Affairs and Medicaid.
Myth #2: Hospice Care Is Used Only in the Final Days
Hospice care, when used, is often not taken fully advantage of by patients, caregivers and family members. Hospice care can provide important respite care if needed and reduce the stress on primary caregivers. Patients do not have to wait for the final few weeks to inquire about hospice. It is important to inquire about the option earlier rather than later. Any person who has been certified by a patient’s primary care doctor and hospice doctor to have less than six months to live can begin hospice care. Patients and their families may then take advantage of the many services available.
Myth #3: Patients Must Live in a Facility to Receive Hospice Care
Many individuals want to live and receive treatment at home. They may mistakenly believe that hospice treatment is only available at a facility. Hospice care is available at different locations, including:
- A facility for primary caregiver respite;
- Dedicated hospice facilities;
- Nursing homes; and
- Assisted living facilities.
However, this is not the only option. Hospice refers to a form of comfort care and can be received in any setting. For individuals who would be more comfortable at home or prefer their home environment to a facility, comfort care can be provided in a home environment. Richard Fife, president of the Foundation of End-of-Life Care, said:
“A team of professionals provide emotional and spiritual support to a patient and family anywhere.”
Myth #4: Only Patients Receive Benefits From Hospice Care
Hospice care services extend to spouses and those involved in the care and support of a patient.
Families can also receive benefits from hospice care. Services for families include:
- Respite Care;
- Counseling; and
- Practical Support.
The purpose of hospice care is to provide comfort and support of the highest quality during the time remaining to a patient. This extends to all of those involved in the care of the patient. It has been found in recent studies highlighted in the article, Families and Patients Prefer Hospice Care, that patients and families appear to appreciate the quality of services available as part of hospice care. As Ruth Keinpell, a study leader, said:
“Hospice care can provide patients and families with a better dying experience.”
Hospice care has been found to improve the end-of-life experience for patients and those who support them. Dr. R. Sean Morrison, director of the National Palliative Care Research Center, said:
“Patients who have access to hospice care have a better quality of death and a more peaceful death than patients in hospitals.”
Even when a patient dies, services are available for affected families. Bereavement services and grief counseling typically remain available to the family. Fife said:
“Many hospitals have a chaplain, but that doesn’t mean you’re going to get the emotional support you get with hospice.”
For many families, spouses and primary caregivers, knowing that their loved one is receiving the highest quality end-of-life care and getting the support to come to terms with the inevitable and make necessary arrangements makes the entire experience easier for everyone involved.
Myth #5: If a Patient Lives Past 6 Months, They Lose Their Hospice Care
Prognostication of life expectancy is an imperfect process. Individuals may live past the time stated by their attending physician and in no way will lose coverage due to this factor. Rotella said:
“It’s not always easy to predict for a patient with Alzheimer’s, for example, when they’ve entered their last six months of life.”
Those who outlive their life expectancy can rest at ease. Michelle Riddle, patient advocate at Complete Dignity in Phoenix, said:
“If you haven’t passed in six months, they don’t cut you off.”
Patients and their families need a clear picture of their options and should take the time needed to find the right hospice care provider. They should be aware that they have thousands of providers to choose from, and they do not have to go with the first one provided to them. Healthcare providers, nursing home managers, facility managers and case managers need to support the needs of their patients and alert them to the possibility of hospice care and its benefits.