Common Hospice Myths
Even though hospice care is one of highest rated forms of medical care, many misconceptions still exist about what it is…and what it isn’t. Here are some of the most common hospice myths:
Hospice is for people who have no hope.
Truth: When you choose hospice care, you’re not giving up…you are taking charge of how you wish to spend the rest of your life. Because patients get substantial relief from pain and other symptoms – and their families are supported by a caring hospice team – they can share quality family time and have a meaningful, dignified and peaceful end-of-life experience. And this is what most people hope for.
Hospice is only for people with cancer.
Truth: Only about 40% of hospice patients have cancer; the other 60% have all types of progressive diseases, including heart, lung, kidney, vascular and neurological diseases, as well as AIDS, dementia and Alzheimer’s. Patients range in age from newborns to those who are more than 100 years old.
Hospice is a place.
Truth: Hospice is a philosophy of care — not a place — with a goal of providing holistic care in a non-hospital setting where patients can be surrounded by the people and things they love most. Patients can receive hospice care in their own homes, as well as in nursing homes, assisted living facilities or home-like, inpatient hospice centers.
Hospice is for people who only have a few days to live.
Truth: It is important to understand that hospice care can be provided when it is believed a patient has six months or less to live. Unfortunately, many people enter the program too late to fully benefit from the many services available to them and their families. In fact many say that their only regret about hospice care is that they did not access it sooner! Don’t wait. The sooner you make the call, the more you will benefit from everything hospice care has to offer.
You need family to help you if you are on hospice care.
Truth: Patients who live alone or don’t have family or friends available to assist them are often able to stay at home on their own, or with some additional assistance from a home care agency or private duty nurses. If their needs become too great, their hospice care can then be provided at a nursing facility or an inpatient hospice center. Simply explain your situation to the hospice care team and the appropriate care plan will be developed to assure your comfort and quality of life.
Hospice can’t help you if you need “high-tech:” care.
Truth: While end-of-life care is extremely complex, it does not involve invasive technology and equipment. Hospice is a medical specialty whose physicians, nurses, hospice aides and therapists are specially trained to provide comprehensive medical care, as well as state-of-the-art pain and symptom control, without the use of invasive technology. Their efforts are further enhanced by a team of other professionals and volunteers who provide a full range of support services for the entire family. Hospice care allows you to choose comfort and quality of life.
Hospice just dopes people up until they die.
Truth: The goal of the hospice care is to control symptoms so patients can enjoy quality of life for as long as possible. While some medications do initially cause drowsiness, most patients become more alert as their bodies get used to them. As their condition changes, medications are adjusted to maintain optimal symptom control without sedation. However, the closer patients get to the end of life, the more weak and sleepy they become as a natural part of the dying process.
Hospice physicians and staff are very knowledgeable about medications and the effects they have on patients. They know families have questions about their use and are always willing discuss why they have been prescribed and if any changes would be beneficial.
Hospice care is expensive.
Truth: Hospice care is considerably less costly than care provided in other medical settings. It is covered by Medicare, Medicaid and most other types of insurance and includes all services, medications, equipment and supplies needed to care for your terminal illness. Some agencies, such as Hospice of Northwest Ohio, will provide care regardless of the patient’s ability to pay. At the end of life, you should be able to focus on the things that matter most—and not be worrying about money. Hospice care enables you to do that.
Hospice can’t even talk to you if you don’t have a referral.
Truth: Hospice recognizes that end-of-life issues are complex and will take the time necessary to discuss them with you. Patients and families are encouraged to consult with hospice earlier, as opposed to later, so they are aware of the various options available to them during the final weeks and months of life. While a physician referral is ultimately required for admission to a hospice program, the hospice will contact your physician to obtain the necessary referral and any additional documentation related to the terminal illness.
Hospice is only for people who have accepted death.
Truth: Hospice can help you and your family address these concerns and learn how to re-define hope within the context of your disease and your personal lifestyle. Hospice has helped guide thousands of families through this once-in-a-lifetime experience and recognizes that every patient and family is unique. With the help of hospice, you can take the uncertainty out of your last months of life and learn to accept — and make the most of — your remaining time together.
Once I am on hospice, I can never go off of it.
Truth: What if you commit to hospice care and then another treatment option becomes available…or you show unexpected signs of improvement…or you simply change your mind? Rest assured you may leave the program at any time!
Patients who discontinue the services of hospice – to pursue other treatment or for any other reason – can reinstate traditional medical care at any time. Their hospice team will work with them to assure a smooth transition to their new medical provider. And, if they choose to be readmitted to hospice care at a later date, they may do so.
Hospice starves its patients at the end of life.
Truth: Food plays such an important role in our daily lives – and is at the center of so many family traditions – that it is difficult to see a loved one not eating or drinking near the end of life. However, as people decline, they often lose their appetites and don’t want to eat.
Some become so weak they have difficulty swallowing or develop a risk of choking. Some take only a syringe of liquid by mouth. By observing a loved one’s desire to eat and ability to swallow, you will know what type of nutrition is appropriate.
In some cases, people decline to the point that their body no longer tolerates food. Forcing someone in this state to eat can result in bloating, congestion, excessive swelling and nausea. When this occurs, it is important to remember that your loved one is not starving; he or she is dying from their disease.
Be sure to get clarification for additional myths that you may be hearing before making your decision about hospice care.
My Mother, Your Mother: Embracing "Slow Medicine," the Compassionate Approach to Caring for Your Aging Loved
Living with Life-Threatening Illness: A Guide for Patients, Families and Caregivers
The Wheel of Life: A Memoir of Living and Dying