She's a hospice nurse. When I tell people her occupation, I typically receive a response like this: "She must be a very special person. I could never work in a place where people go to die." Hospice is a "place," and equating hospice to death, are just two of the misperceptions that hospice care providers and proponents are constantly working to dispel. Providing correct information that hospice is a philosophy of care (not a place) takes on special importance in November because it is National Hospice and Palliative Care month.
Data from 2010 indicates that more than 68% of hospice patients reside (and eventually die) in the place they call home. This includes 40% of patients living in private residences, 9% in assisted-living facilities and 19% in long-term nursing homes.
These figures are consistent with hospice's delivery of care model that aims to create an environment for an end-of-life experience that is most natural and comfortable for patients and their families. A hospital's linoleum floors, fluorescent lights, intercom noise and equipment alarms are anything but natural or comforting. It makes sense that most people who are approaching the end of their lives would like to be in their own bed or recliner chair.In fact, some studies suggest that more than 80% of Americans want to pass away peacefully at home.
In the hospice model of care, the patient needs a primary caregiver who is willing to oversee the patient's needs. Over time, the caregiver's responsibilities may increase as the patient becomes less able to care for herself/himself. The primary caregiver is typically a spouse, child, sibling or close friend, but she or he could also be someone paid by the patient or family to serve that role. Because hospice's healthcare providers do not provide round-the-clock in-home care, the primary caregiver plays an essential role in hospice care.
The hospice model of care places the patient and primary caregiver in the center ---at the core of the care team--- as they are the key decision-makers. This makes hospice's model of care quite different from traditional medical care. An interdisciplinary team including the nurse, social worker, hospice aide, spiritual care practitioners, a physician or nurse practitioner and volunteers provide special services and guidance to the patient and primary caregiver.
In essence, they surround the patient and caregiver with support and expertise. They make scheduled in-home visits to provide symptom management, personal hygiene services, and counseling, but are also on-call 24 hours per day to provide guidance and support. I can actually imagine some patients and caregivers feeling a bit overwhelmed by the degree of in-home contact they can receive from hospice care providers.
At its best, hospice is a holistic model of care. A case manager---typically a registered nurse----will usually visit the patient at least weekly to discuss symptoms, medications, and nutrition, as well as special equipment needs like a mechanical bed. A hospice aide will visit to assist with bathing; a social worker will visit to discuss issues of family dynamics, finances, respite care for the primary caregiver, and feelings of loss; a volunteer coordinator will offer visits by others, such as spiritual care volunteer, a musician, a beautician, a chess player. You get the picture.
Importantly, the patient and caregiver are encouraged to make decisions about whether they want these services; to think about how a particular service might enhance their comfort, make them smile and feel hope, help them find inner strength, or ease burdens on their mind, body and spirit.
At my request, my sister thought about and asked her hospice colleagues about other misperceptions about hospice care. A few key themes emerged. First, that hospice care accelerates a person's death. Some people erroneously believe that once an individual signs onto hospice, the care they receive is designed to assist in hastening death and the patient will succumb to their illness sooner than if they were receiving standard care. The evidence shows the opposite.
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