Updated May 22, 2014.
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. Only 36% of people who died in 2006 died on hospice care.
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.