It’s not the “beginning of the end”
Hospice is a hard reality for many people to accept and they cringe just thinking about it. They become consumed with misguided thoughts that hospice is a place where you go to die, and it’s the “beginning of the end” with nothing left to look forward to.
The truth is, hospice is one of the best-kept secrets that can make an end-of-life journey more peaceful, as opposed to being filled with drama and pain. In fact, when you talk to most families about their experience with hospice, they usually tell you they should have accessed their loved one’s hospice benefits sooner than they did.
What holds them back? A big part of it is that many people are inundated with all kinds of crazy myths and misinformation about hospice. The reality is that hospice is a gift and a blessing, and can make a difficult time so much better for both patients and their families.
11 of the most common hospice myths and facts
Myth: I thought hospice meant giving up.
Fact: To receive hospice, the patient must be eligible and understand that hospice focuses on comfort care (palliative), not a cure for their illness. But patients and families don’t have to be ready to die before getting the care they need or deserve. It’s important to get hospice early in order to help patients prepare for what’s happening.
Myth: I thought that if my mom was under the care of hospice, she could no longer go to the hospital.
Fact: While hospice strives to manage pain and other uncomfortable symptoms outside of a hospital, a hospice patient always has the choice of whether or not to go to the hospital.
Myth: I thought hospice was only for the elderly.
Fact: Hospice is for anyone with a terminal illness who has been given a diagnosis of six months or less to live. In fact, there are several hospices that specialize in caring for terminally ill children.
Myth: The doctor said I had to sign a Do Not Resuscitate (DNR) order for my wife to get hospice.
Fact: A patient can receive hospice without signing a DNR. Hospices can’t discriminate against patients because of any advanced directive choices.
Myth: I wanted to learn more about hospice for my mom, but I thought the doctor had to bring it up first.
Fact: Patients and families can choose to talk with a hospice anytime. A hospice, however, can’t provide hands-on care to a patient without a physician’s order. Hospices will work with a patient’s physician to identify the patient’s individual needs.
Myth: Hospice is only for people who don’t need a high level of care.
Fact: Hospice is serious medical care and requires experienced medical and nursing professionals with skills in symptom control. Hospice offers state-of-the-art palliative care using advanced technologies to prevent or alleviate distressing symptoms.
Myth: I always thought that “hospice” was a place—you know, that building that I pass on the way home from work.
Fact: Hospice is a philosophy of care, not a place.
Myth: Hospice can’t help take care of my dad because he’s residing in an “assisted living” apartment.
Fact: Hospice provides care wherever a patient calls home, including (but not limited to) assisted living facilities, skilled nursing facilities, independent living facilities and personal homes.
Myth: I didn’t consider hospice early enough because my dad was still getting blood transfusions regularly. We weren’t ready to stop because each time he would get one, it would seem to make him feel better for a few days. We just wanted him to feel like himself for as long as possible.
Fact: The Medicare hospice benefit may cover chemotherapy, radiation, blood transfusions or other treatments if those treatments are providing comfort for patients eligible to receive the benefit (those who have a life expectancy of six months or less, provided that the illness runs its normal course).
Myth: I thought hospice was only for patients with cancer. I didn’t realize that my husband, who suffered from Alzheimer’s disease, could benefit from having a hospice caregiving team, too.
Fact: More than 50 percent of hospice patients nationwide have diagnoses other than cancer. Many hospice patients are diagnosed with advanced stages of chronic diseases like pulmonary disease, Alzheimer’s disease, renal disease, HIV/AIDS and cardiovascular or neuromuscular diseases.
Myth: I was under the impression that I had to be available as the designated caregiver, 24 hours a day, in order for my mom to get hospice.
Fact: Some hospices do require caregivers to be in place prior to the patient being admitted, but this is not true under the aforementioned hospice benefit‘s guidelines.
Educate yourself—don’t believe the hype
Don’t let these common myths about hospice hold you back from getting the right kind of care for a loved one living with a terminal illness. Get the facts and educate yourself on this very specialized kind of care that can make a difficult time that much easier for everyone involved.
Read more about hospice care in HUMOUR HEALS: Getting silly with the residents of Mother Teresa’s NYC hospice for the dying»
Kurt Kazanowski, MS, RN, CHE, is the author of A Son’s Journey: Taking Care of Mom and Dad. He has more than three decades of experience specializing in hospice, home care and senior care. To learn more about these topics, visit www.thehomecareexpert.com and http://asonsjourney.com, where you can also purchase the book.