Hospice, defined as “providing care for the sick or terminally ill,” is a seven-letter word that many think of as a four-letter word.
Having worked in hospice for almost 30 years, I am still amazed at how it is perceived so erroneously by so many — not only by the general population, but also by those in the medical community. There are several misconceptions, myths and false beliefs regarding hospice.
First, let’s look at some of the most glaring misconceptions about hospice:
- Hospice means you are at “death’s door”
- Hospice means no other treatment will take place
- Hospice is a place
- Hospice means giving up hope
- Hospice ends when the patient dies
- Hospice is time limited
Now, the uplifting part — the truth about hospice:
Patients who come onto hospice are those nearing death, with an expectation of six months or less to live — but this is not a definitive prediction, simply an estimate. Most patients who come to hospice have either exhausted curative options, are tired of aggressive procedures and treatments, or have failed to thrive despite all efforts. Choosing hospice is choosing palliative care over aggressive care and wanting your last days to be comfortable, in the setting of your choice. It's also possible that people who initially look close to death may stabilize or improve a bit and may no longer be considered terminal, at which time they can be discharged from hospice.
Palliative care defined:
Palliative care is focused on providing comfort and relief from the symptoms of an illness or disease, as opposed to curative care, which tries to reverse or halt the progression of a disease. Palliative care can be given throughout the course of an illness.
Hospice care is very holistic, and the patient is viewed as a physical, emotional and spiritual being. Hospice care may not be aggressive (tubes, diagnostics, chemotherapy, surgical procedures, etc.), but it is highly skilled in providing palliative care via medications, equipment, wound care and exceptional nursing, combined with support for emotional and spiritual needs.
Hospice care is primarily provided in an in-home setting. This could be the patient’s own home, a family member’s home, an assisted living facility or a nursing home. We support whatever setting the patient chooses and provide the care there. There are hospice inpatient units, but these are for very short-term stays to stabilize symptoms or provide a more clinical setting for the last few days of life.
Hospice is about hope. It may redefine what hope means. Hospice hopes a patient is pain free. Hospice hopes a patient can spend quality time with loved ones and friends. Hospice hopes to provide support that enables a patient and loved ones to be comforted, well prepared and at peace. Hospice hopes a patient can be in the most homelike environment and feel the support of loved ones, instead of surrounded by clinical equipment and apparatuses. Hospice hopes for a “good death.”
Hospice is not just for the dying. Hospice is there to support, provide resources for, listen to, counsel, problem-solve with and love the circle of family and friends who surround the hospice patient. The bereavement services provided by hospice start on day one of an admission and continue beyond death, for at least 13 months, but often longer. Caregivers and family have access to this grief support to help them cope, during and after death, in the form of individual counseling or support groups.
Hospice is a benefit from Medicare and Medicaid. It is based on medical criteria for hospice care and can go beyond a six-month expectation, if the patient still is medically meeting criteria. It also remains an option after discharge from hospice by patient choice or criteria. The hospice door never closes and is not a one-time offer. Most private insurance policies have a hospice benefit, too. They may offer options similar to Medicare or be limited by time or a financial cap.
Hospice is the best answer for those in the final stage of a life-limiting disease. It brings the care to where patients are, can eliminate hospitalization, is accompanied by emotional and spiritual support, and is there to serve patients and their loved ones.
Hospice represents and defines comfort care. The word “hospice” should not be feared, mentioned in hushed tones or not mentioned at all. It should be embraced, discussed and proudly spoken.