TV show host Katie Couric is known for her support for colon cancer. Maria Shriver, has been an advocate for Alzheimer's awareness and research. Sir Paul McCartney supports breast cancer. Actress Holly Peete supports campaigns to help break down the stigmas surrounding autism. Stars have been very instrumental in bringing awareness to some of the most critical health care issues. Hospice is no exception.
The late Bobbi Kristina played an integral part in bringing hospice to the forefront. In Bobby Kristinaís circumstance she was placed in a hospice facility for comfort measures which is rare because few states actually have hospice facilities. But this isnít the beginning or the ending of the hospice story nor does it depict what hospice truly is. Bobbi Kristinaís quality of life was being maintained through the service benefits of hospice. But keep in mind most patients referred to hospice, if referred timely, are still functioning physically with assistance and truth be told not all patients are at deathís door when they chose hospice unless they are admitted to hospice too late which is usually because the doctor referred the patient too late. But at other times itís because the patient, family or caregiver were blinded by the myths about hospice.
What is it about the word hospice that has people dying at home in pain, dying in a cold hospital or nursing home room alone or running from it as if it was the plague? This tiny word has caused many patients to suffer during their illness. Unfortunately the way hospice was introduced to the African American and Latino communities has caused those communities to refuse hospice care in the time of their greatest need. There is a dire need for community education on hospice care, the benefits, the pros and cons in a language that is understood by everyone so that an informed decision can be made regarding accepting or rejecting the services.
Over 1.6 million people nationwide received hospice in 2013 out of that number 8.4% were African American, 6.8% were Latino, 2.9% Asian, Hawaiian or other Pacific Islander ad 0.3% American Indian or Alaskan Native. So if you look at these stats for every one minority that accepts hospice there are hundreds that refuse it. Minorities have not embraced hospice as a choice for end of life care and the perception has been distorted making the services underused even when there is easy access and payment through Medicare, Medi-Cal and private insurance with virtually no out of pocket expense to the patient. So why are there barriers to hospice care in the minority communities still present? And what can we do to change this?
Years ago access to hospice care was a major barrier to minorities but has since been resolved. The full range of hospice services is available to everyone yet health care disparities in hospice care remains because of several reasons: personal choice for aggressive treatment. It is perceived that as long as you are getting aggressive treatment then there is hope. Cultural differences and economics is another reason for the disparity but cultural differences and economics are not by choice. When minorities chose aggressive treatment and add other disparities for underuse of hospice services we go back to square one: people dying at home in pain, family members becoming burnt out from providing the care, disruption and at times discord within the family unit, increased anxiety/stress for the patient and caregiver or dying alone in a cold hospital room. This is not what hospice is.
Many people because of their misunderstanding of hospice, mistrust of the health care system, they get misinformation, or have misperceived myths and fear of hospice and therefore miss the true benefits that hospice care provides. So letís put some of these myths to rest: Hospice is a philosophy of care that is based on comfort measures for the patient and support for the patient and family unit. Hospice care is maintained in a way to promote and maintain the patientís quality of life allowing the person to con-tinued going out to dinner, going fishing, fly across country to attend a wedding, a family or school reunion is possible. Patients can achieve their quality of life goals which at times have been known to prolong life because of the patientís improved status. Each patient has their own distinct definition of what quality of life means. The role of the hospice team is to make sure that the quality of life, no matter what it is or how itís defined by the patient, is maintained and this is accomplished through pain and symptom management.
Hospice care is not the overmedication or drugging of the patient. Every patientís pain tolerance is different. Hospice providers manage the pain and symptoms so that the patient can enjoy their activities, enjoy their family and have their wishes met. The direction of the plan of care is under doctorís orders with the patient and the family input based on the individual needs of the patient and the patientís wishes. The plan of care isnít universal; it is patient centered and patient focused. The patients are still very much in control of their care and can refuse medications or treatments at any time. Hospice care is a team effort and the patient is the center of the team.
Hospice doesnít prolong life. There have been many studies that have proven hospice care has been shown to improve the patientís life due to the skilled care, frequent monitoring, and compassion and has in many cases extended the life of the patient. Some patients get better and are discharged from hospice. But on the other side of the coin hospice doesnít hasten death either. There is no patient assisted suicide bring performed by hospice providers in spite of what has been perceived.
Hospice care provides skilled nursing services, RNís/LVNís, home health aides for bathing and assistance, with daily living activities, visiting doctor, medications that relate to the primary hospice diagnosis and symptom management. Equipment i.e. hospital bed, over bed table, oxygen, commode, walker, wheelchair, etc. Supplies i.e. diapers, under-pads, wound care supplies, etc. A social worker to assist is identifying community services that the patient may qualify for. A clergy for spiritual support. Respite care, placement in a facility for five days to give the primary caregiver a break and prevent caregiver burnout. Hospice care can be provided anywhere the patient resides: in the home, a nursing home, a board & care, a residential care/assisted living facility and in some cases transitional housing.
Hospice care is all inclusive to meet the routine and crisis needs of the patient and is provided for free. The MSW will assist patients with emergency Medi-Cal only and those who donít have Medi-Cal get approved for hospice.
The patient has a right to choose the hospice agency of their choice regardless of who the doctor may want to refer them to before being discharged by the hospital. This is law.
So when is the best time to choose hospice services? As soon as the patient is diagnosed with any of these end stage diseases: Cancer, Alzheimerís, Lung Disease, Respiratory Disease, and Renal Disease. Liver Disease, HIV/AIDS, Neuro Diseases i.e. Parkinsonís, Huntingtonís Corea, Muscular Dystrophy, ALS and Heart Disease. When hospice was first introduced Cancer was the only diagnosis that was accepted; now there are many diagnoses covered. Itís best to accept hospice early after the prognosis is given to get the best benefit. Caregiver education is provided to the family lessening the potential for stress and burnout.
Answer the following questions truthfully: If you were given a terminal diagnosis and a prognosis of six months or less would you want your pain and symptoms managed? Would you want to continue to spend quality time with your family? Would you want to continue to go on outings or travel? Would you like to continue to do the activities that you were doing before you were diagnosed? If you said yes to any of these questions, let me tell you, this is what hospice is. Hospice is about living life, maintaining faith and keeping hope, itís not about living in a dark room in bed, being immobile and waiting for death to come. A patient can sign off hospice at any time if they find it isnít right for them.
This information is critical and should be shared with a sick neighbor, a relative or peer. Itís not the easiest topic to approach but the benefits far outweigh pride, fear or uncertainty. Get your questions answered truthfully now before the need arises!
Every question canít be answered in this article. Knowledge is power so write down your questions and call to get the truth and not fiction about hospice. There are no wrong questions.
Call: Dr. Sheila A De Gruy, (310) 933-6886 Angeles Vista Hospice or cell (213) 590-7005.
Dr. Sheila A. De Gruy has been a respected leader in the health care industry for over 40 years and is the Director of Quality Assurance/Quality Improvement for Angeles Vista Hospice and the owner of De Gruy & Associates a health care consulting and patient advocacy business.
Checkout the web sites: www.angelesvistahospice.com and www.patientadvocacyexchange.com