Saying NO to Hospice Care—Why?

Why do patients (and their families) sometimes choose NOT to enroll in hospice care, even after being referred to hospice by a physician? A study conducted by a team of gerontology doctors in Seattle in 2010 provides a few answers. Many of those answers reveal inaccurate perceptions about hospice. Others indicate that hospice personnel may not have presented information as well as they could have.

Some of the respondents (including survivors of patients who had died) said that the patient was “not ready.” This was because of the widely held (but incorrect) belief that hospice care is only for the final days or hours of life. Some family members were reluctant to admit that their loved one was dying. In other cases, there were disagreements between patient and primary caregiver (his or her spouse) regarding the suitability of hospice for that patient’s circumstances.

In a handful of cases, there was concern by wives that they would have to give up some of the caregiving roles for their dying husbands. They expressed thoughts that they might be falling short as wives by allowing others to provide care.

One respondent, who did eventually sign on with a hospice, initially balked because one hospice representative painted a picture of hospice care as being very restrictive but another rep described hospice as being much less restrictive. Some patients who were using oxygen were reluctant to sign on with hospice because it would have meant a change in oxygen providers. And, in a couple of cases, there was patient/caregiver confusion between hospice care and home care.

At Hope Hospice, our community liaisons are experienced professionals who take as long as necessary to explain exactly what hospice care is. We work hard to correct misconceptions. We know that hospice is unfamiliar to many of the patients and family members we meet. We recognize that choosing hospice care may not be an easy decision to make. We know that this choice comes during a stressful period for patient and caregivers.

We strive to state clearly our role in a patient’s end-of-life process. We answer any and all questions. We value the input of family members and their role in the loved one’s hospice experience. We take pride in our ability to address a patient’s specific needs. We believe strongly in the service we provide.

To speak with a Hope Hospice community liaison or other staff member about hospice care, please call us at 314-984-9800.


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