In the era of social media, online info, hundreds of cable channels and streaming videos, why is it that myths about hospice and “end-of-life care” are still so prevalent? Part of it is a media problem. The medical dramas, “first responder” TV shows, and even News programs mostly get it wrong. Here are some of the common myths:
Hospice Care Means Giving Up Hope
Many people mistakenly believe that patients who choose to enter hospice have given up hope, but the truth is that those facing a life-limiting illness or terminal disease have chosen to redefine their hopes.2
Where a patient once hoped for a cure, he or she might now hope to live pain-free. For other hospice patients, hope might mean seeing a distant friend or relative one last time or taking a trip to the beach. For still others, hope could be as simple as wanting to spend as much time with loved ones as possible or remaining at home rather than going to the hospital or a nursing home.2
Hope looks different in hospice care but it is certainly not lost. A hospice caregiving team can help patients accomplish tasks, fulfill wishes, and maintain hope during their remaining time.
Hospice Means I Must Sign a DNR
A do-not-resuscitate (DNR) order is one of the several legal documents people use when establishing their advance healthcare directive. A DNR means that you do not want to be resuscitated via cardiopulmonary resuscitation (CPR) or other means should your breathing cease or your heart stops beating.
Signing a DNR is not a requirement to receive hospice care. While many hospice patients elect to have a DNR in place, a DNR is not the right choice for everyone.
The goal of hospice is patient comfort with the patient directing his or her care. No decisions should ever be forced upon patients, including those in hospice.
Hospice Is Only for Cancer Patients
As of 2017, 74% of patients were admitted to hospice with non-cancer primary diagnoses, with only 26% having cancer as their primary diagnosis. Some of the most common non-cancer diagnoses in a hospice in 2017 were heart disease, dementia, lung disease, and stroke or coma.
While hospice case manager nurses and other care-giving professionals are very skilled at managing the symptoms of cancer, they are equally skilled at managing the symptoms of many other forms of chronic illness.
Hospice Is Only for Patients Actively Dying or Close to Death
In 2017, the median length of service for hospice patients was 24 days. This means that of the estimated 1.5 million patients who received hospice services that year, half received hospice care for less than 24 days, and the other half received it for longer than that. In fact, the average number of days a patient received hospice care in 2017 was 76.1 days.
The dying process takes time. Because of the highly skilled care that hospice workers can provide to their patients, hospice proves most effective when the care-giving team has time to deliver it. Patients and their loved ones need support, information and medical care. Social workers and chaplains need time to work with patients and their families to bring them to a place of acceptance. Nurses and doctors need time to optimally manage the patient’s symptoms.
Hospice Care is Expensive
Most people who use hospice are over 65 and are entitled to the Medicare Hospice Benefit. This benefit covers virtually all hospice services and requires little, if any, out-of-pocket costs.
This means that there are no financial burdens incurred by the family, in sharp contrast to the huge financial expenses at the end of life which may be incurred when hospice is not used.
Dispelling Hospice Care Myths
Removing the stigma surrounding hospice and redefining end-of-life care is essential to the future of healthcare. By 2060, the number of people aged 65 or older in the United States is projected to reach 98.2 million, which will be roughly one in four Americans.
That means more people will be living with chronic, life-limiting illnesses and require expert end-of-life care. Dispelling these myths can help bring us closer to providing high quality, skilled care to all patients who need it at the end of life.