Death. No one likes to talk about it – or even think about it. It’s much easier to table that thought and discussion for another day or time. Inevitably, however, you might be faced with the role of caregiver to a loved one who is nearing the end of their life.
Caring for a loved one isn’t easy. Because many Americans lack advanced directives, there are several factors to consider and decisions you may have to make when it comes to your loved one’s end-of-life care. One of those difficult decisions might be choosing hospice care.
There are many misconceptions when it comes to hospice care. When some people hear the word “hospice care” they fear it means they have simply given up hope. That this means choosing death rather than extending life. But really the confusion is due to not understanding what hospice is and how it can help those who are sick.
Sarah Payne, DO, medical director of Banner Hospice Phoenix, explains the benefits of hospice care and debunks some common myths.
What is hospice care?
First and foremost, people who choose hospice care are not giving up hope—they are maximizing quality of life.
“Hospice is a philosophy of care that seeks to provide comfort and maximize a patient’s quality of life as they near the end of life,” Dr. Payne said. “It focuses on comfort, dignity and support for your loved one and your family."
Hospice agencies most often provide services in the patient's home, but it can also be provided in free-standing or independent facilities specially-designed to provide hospice care.
Is hospice care the same as palliative care?
Yes and no. A good way to think of it is that all hospice care is palliative care, but not all palliative care is hospice.
Palliative care can be brought in at any time and at any stage of a life-limiting illness, not necessarily only at end of life. It is an aggressive symptom management practice focused on the patient’s goals and wishes. With palliative care, you can still undergo curative treatments.
Hospice care, while also aggressively treating symptoms, treats those for comfort at end of life and forgoes curative therapies and treatments. It is provided for a person with a terminal illness whose doctor believes the patient has six months or less to live if the illness runs its natural course.
Benefits of hospice care
Hospice care benefits reach far beyond a patient’s physical condition to cover the spiritual and psychosocial needs of the patient as well as the family.
“True person-centered care is what hospice is all about,” Dr. Payne said. “Hospice is not just for the patient; it is for the caregivers and family as well.”
- Hospice provides an interdisciplinary care team, including nursing, personal aide care, social work, physicians and nurse practitioner care, who are experienced in life-limiting illness.
- Pre-bereavement for loved ones
- Spiritual and religious counseling for patient and loved ones
- Music and pet therapy
- Grief support counseling and bereavement services
Is hospice expensive?
Hospice is a Medicare benefit. Under Medicare, if you elect your hospice benefit, everything related to the terminal diagnosis is covered. If it not related to the terminal prognosis/diagnosis, then it is typically covered by other means rather than out-of-pocket. If you have something other than Medicare, check with your carrier to see if hospice is a benefit, or the hospice can check for you.
While each hospice program has different policies regarding payment, be rest assured that services will be offered based on your loved one’s needs rather than your ability to pay.
Four common myths about hospice
Myth #1: Hospice is a place.
Fact: “Hospice is not a place but rather, a philosophy of care,” Dr. Payne said. “Hospice comes to you wherever you call home, surrounding you and your caregivers with the support you need at the end of life.”
Myth #2: Hospice is giving up.
Fact: “Hospice is not giving up,” Dr. Payne said. “It is enhanced care at the end of life, to maximize quality of life at the end of life.”
Myth #3: Hospice is only for those who are actively dying.
Fact: “Hospice is for any person with chronic illness whose life expectancy is six months or less,” Dr. Payne said. “The true benefit of electing hospice care is seen when hospice is brought in sooner rather than later.”
Myth #4: Can patients actually improve?
Fact: This one is actually true!
“To remain on hospice, a patient needs to have a life expectancy of six months or less should the disease process run its normal course,” Dr. Payne said. “Many times, we see hospice care come into a patient’s life and wrap their arms around a patient and family, getting them the right care at the right time, and the patient actually improves. The disease process may still be there, but perhaps the patient has learned to manage it differently, they now have the resources they need. Some patients do not continue to decline but rather, improve.
“Should the patient continue to decline, they have everything they need to do this with comfort and dignity on hospice care. Should the patient improve, they can either choose to revoke their hospice benefit or the hospice may say the patient no longer qualifies for hospice care and they graduate.”
Hospice care is generally an appropriate option for those who are terminally ill with approximately six months or less to live. While there are generally some misconceptions about hospice care, first and foremost, it is about maximizing a patient’s quality of life at the end of life. In addition, hospice care can provide support, resources and information to you and your family during this difficult time, including bereavement counseling.
How to choose a hospice provider
Do you have a loved one nearing the end of life, or are you considering end-of-life care options? To locate a hospice program, discuss with your doctors, nurses and social workers or asked friends and family for advice.
To learn more about hospice, visit bannerhealth.com. You can also visit medicare.gov to compare hospice facilities in your area or the National Hospice and Palliative Care Organization for an online provider directory.