Myths About Hospice

Despite recent growths in hospice awareness, access, and utilization, myths about hospice are still prevalent in our culture. These misconceptions contribute to the under-utilization of hospice services. This is unfortunate, since so many patients who are in need of expert pain and symptoms control, as well as emotional, social, and spiritual support, don’t receive them.

What are these myths that are so detrimental to the care of the dying?

Myth #1: Hospice Care Means Giving Up Hope

Choosing hospice care in no way means a patient is giving up hope. It may mean redefining hope. Where a patient once hoped for a cure they may now hope to be pain-free. Hope for a patient may mean seeing a distant friend or relative one last time or taking the trip to the beach. Hope could be as simple as wanting to spend as much time with loved ones as possible, or remaining at home rather than having to go to the hospital or a nursing home.

Hope looks different in hospice care but it is certainly not lost. The hospice team can help patients accomplish tasks, fulfill wishes, and maintain hope.

Myth #2: Hospice Means That I Have To Sign a DNR

Having a Do Not Resuscitate order (DNR) in place is not a requirement to receive hospice care. Signing a DNR means that you do not want to be resuscitated with CPR or other means should your breathing or heart stop. While many patients on hospice elect to have a DNR in place, it is not the right choice for everyone. The goal of hospice is patient comfort with the patient directing care. No decisions should ever be forced upon patients, including hospice patients.

Myth #3: Hospice Is Only for Cancer Patients

In reality, 51% of hospice patients are admitted to hospice with chronic, non-cancer diagnoses. That means just under half of hospice patients have cancer. Some of the most common non-cancer diagnoses in hospice are heart disease, dementia, lung disease, kidney disease, and liver disease. The hospice team is very skilled at managing symptoms of cancer and equally skilled at managing symptoms of many other chronic illness.

Myth #4: Hospice Is Only for Patients who Are Close to Death or Actively Dying

If there is one myth that bothers me most, it’s this one. Because of the highly skilled care that hospice workers can provide to their patients, hospice works best when the team has time to deliver it. The dying process takes time. Patients and their loved ones need support, information, and medical care. Social workers and chaplains need time to work with patients and their loved ones to bring them to a place of acceptance. Nurses and doctors need time to get the patient's symptoms optimally managed.

The work of the dying takes more time than the average length a patient is on hospice. Currently, the average length of stay on hospice is only 14-20 days. It saddens me to think of all the care those patients missed out on.

Removing the stigma of hospice and redefining end-of-life care is essential to the future of health care. The population of seniors in the U.S. is expected to double in the next 30 years. That means more people will be living with chronic, life-limiting illness that need expert end-of-life care. Dispelling these myths about hospice can bring us one step closer to providing quality, highly skilled care to patients at the end of life.

Myth #5: Does Choosing Hospice Care Mean I'm Giving Up Hope?

Many people wonder whether choosing hospice care means that they are giving up hope. They may be concerned that choosing comfort care means choosing death. What's the truth?

Answer: People who choose hospice are not giving up hope, they are in fact redefining it. Though there may no longer be a possibility of curing their illness, they redirect their hope into mending and restoring relationships, spending quality time with those they love, and finding peace and comfort.

Choosing hospice doesn't mean choosing death, it means choosing to live life to the fullest. Usually once someone has chosen hospice, they have been through a lot already. Multiple hospital admissions, chemotherapy and radiation, and invasive tests and treatments can leave patients feeling sick and tired. By choosing hospice, they have decided to focus on the quality of their lives rather than on the quantity.

I've seen many patients who have chosen hospice use their time, once consumed by doctors appointments and hospital stays, to take family vacations, travel to places they've always wanted to see, and enjoy the company of loved ones at home. These aren't patients who have given up hope or given up on life. These are patients who are living life to the fullest.

Question: What Are the Advantages and Disadvantages of Hospice Care?

Hospice care is a philosophy of care that embraces the idea of comfort and dignity at the end of life. Hospice care addresses the physical, practical, emotional, social and spiritual needs of the patient and their family and caregivers.

Advantages of Hospice

The advantages of hospice include comprehensive, interdisciplinary care from a team of professionals and volunteers. This care involves physicians, nurses, home health aids, social workers, chaplains and trained hospice volunteers to meet the needs of the patient and their caregivers.

Care is available 24 hours a day, including weekends and holidays. Patients and their caregivers always have access to hospice professionals when they need it.

Choosing hospice usually means a reduction in out-of-pocket expenses for medications, durable medical equipment, and medical supplies. Medicare, Medicaid, and private insurances cover the cost of these necessary items for hospice patients.

When a patient is truly ready for comfort care, choosing hospice care means avoiding unwanted hospitalizations and medical treatments and procedures. The hospice team aims to support the patients and caregivers wishes while helping them achieve their goals for care.

Disadvantages of Hospice

The significant disadvantage of choosing hospice care is the restrictions placed on the various aspects of treatment. Under the Medicare Hospice Benefit, hospice is paid a flat per diem rate for which all medical expenses must be paid by. This results in several difficulties:

Diagnostic tests such as blood work and x-rays, although warranted by the patient's attending physician, fall to the financial responsibility of the hospice agency. Because these tests are expensive and may not always be beneficial, hospice agencies often don't approve them.
Hospitalizations are discouraged once a patient is under hospice care. The hospice benefit does have provisions for short-term hospital stays, called inpatient care, for symptom management, but the criteria for admission and coverage for specific treatments is poorly defined.
Participation in experimental treatments or clinical trials aren't allowed as they are considered life-prolonging. Also, some treatments or procedures that are considered life-prolonging, such as feeding tubes, may not be covered.

Unfortunately, the disadvantages outweigh the advantages for some patients, resulting in underutilization of hospice services and short lengths of stays. Many patients aren't referred to hospice until they are very close to death, missing out on much of what hospice has to offer. Misconceptions about hospice and lack of awareness of benefits and services also contribute to the underutilization.