Patients and their families are suffering needlessly. Over 1/2 the deaths in the United States in 2009 occured without the support of hospice. Be a patient advocate and learn how hospice can help patient's with life-limiting illness
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As patient advocates, we need to understand the appropriate use of hosppice. Families and patients are suffering needlessly without it. Recent research by the National Hospice and Palliative Care Organization shows over 1/2 the deaths in American in 2009 occurred without the support of hospice. It is my goal as a hospice nurse and patient advocate to better educate medical professionals to the appropriate use of this valuable medical service.
Five common myths surround the subject of hospice and inhibit its appropriate use.
Myth #1 Hospice is only for patients that are very near death.
The truth is patients can benefit from hospice as soon as the family and patient decide they no longer want aggressive treatment. Medicare requires two physicians determine the patient has 6 months or less to live. If the patient lives longer than 6 months after accepting hospice, they have a simple medical review by their hospice physician. If their health is still declining and they meet hospice criteria, they are given another 6 months of hospice. As long as the patient's health is declining and they meet hospice criteria, they can stay on hospice.
Myth #2 Qualifying for hospice care is complicated.
The truth is, obtaining the necessary assessment by two physicians is not difficult. The first physician is usually the patient's primary physician, who then refers the patient to a hospice physician. To accommodate the patient, the hospice physician or their representative will usually come to the patient for this second assessment. In this way, the patient has meet the two physician criteria
Myth #3 Hospice doesn't really do anything for patients.
This misunderstanding is based on confusion between palliative care and traditional medical care. Traditional medical interventions attempt to cure the patient's disease. Palliative hospice treatments are for comfort care only, but a patient with a life-limiting illness requires extensive comfort care. Any nurse or doctor can treat a patient's pain but hospice, like any other specialty field of medicine, has medical professionals with extensive experience and training in symptom management of terminal patients.
In fact, an entire team of medical professionals will assist the family caring for a hospice patient. Hospice patients receive visits to their home by a licensed nurse, social worker, physician, chaplain and home maker. All experienced in the delicate work of caring for the dying and their families.
Hospice also will deliver medical equipment and medicine to their home and hospice support is available around the clock by phone or home visits. Respite care to relieve care giver stress or a short term stay at a hospice facility is also offered with hospice.
Myth #4 Hospice is a service provided by churches or volunteers.
Hospice services are offered through either non-profit organizations or by for profit companies. Either way, there is little to no cost to the families for services provided by hospice. Never-the-less, families need to be aware of the profit driven aspect of this medical service. According to the Center for Medicare and Medicaid Services, over 50% of the hospice organizations in the United States in 2010 were operated by for-profit companies. Driven by profit instead of ethics, not all hospice agencies give the same quality of care.
Myth #5 All hospice companies offer the same services.
All hospice programs accepting Medicare must follow Medicare guidelines, but the delivery of this care can vary greatly from one hospice to another.
In order to have the time to find an acceptable hospice program, families need to begin their search well in advance. As soon as the patient's symptoms continue to become worse, despite repeated curative procedures, this is the time to bring up the possible need for hospice in the patient's near future. The nurse is in a unique position to bring up this subject because she/he is not directing the patient's medical treatment. That's the physician's job. Physicians may delay discussion of hospice because they do not want to appear to be giving up on the patient. The nurse can educate families regarding what hospice can provide. They need you to remind them that the physician has the medical training but only the family and patient have the right to determine how to judge the balance between patient quality of life and length of life.
Hospice and the subject of death and dying are not easy for families to think about. The analogy I often use is this, pre-planning the eventual use of hospice is similar to making pre-planned funeral arrangements. Both are uncomfortable facts of life but like many things, planning ahead for the inevitable will save unnecessary grief and expense for everyone.
