The objective of this research is to examine the hospice care community and the challenges associated with treating terminal disease and maintaining quality of life standards that medical professionals, patients and their families face.
Hospice care is becoming more relevant in our society as terminal diseases become a more significant cause of death. This is the reason why it is important to understand the community involved in hospice care and its history. The Hospice Foundation of American states that one out of every three individuals in the United States choose hospice care when they are dying. Hospice care is "a special concept of care designed to provide comfort and support to patients and their families." (Hospice Foundation of America, 2008) Hospice care is an option for individuals with a life expectancy of six months or less however, hospice care may continue longer than only six months but requires certification by a physician. Hospice care does not prolong life and as well, it does not hurry death. Hospice care is characterized by workers with specialized knowledge of medical care, which includes the management of pain. The goal of hospice care as stated by the Hospice Foundation of America is to "improve the quality of a patient's last weeks, days and hours by offering comfort and dignity." (2008)
I. The PROVISION of HOSPICE CARE in the U.S.
Care is provided by a "team-oriented group of specialty trained professionals (including physicians, nurses, social workers, and clergy) as well as volunteers and family members." (Hospice Foundation of America, 2008) Hospice care is focused on the emotional, social and spiritual impact of the disease of the patient and includes grief counseling to the family prior to and following the death of the patient. There are presently in excess of 4,500 hospice programs in the U.S. with the majority of these being certified under the Medicare and Medicaid benefit to provide care.
Hospice is generally based in the city or county where individuals reside and in counties where no hospice is, based surrounding counties provide hospice care. Diseases which generally require hospice care include: (1) cancer, (2) Alzheimer's disease; (3) armytrophic lateral sclerosis; (4) chronic obstructive pulmonary disorder; (5) stroke; (6) lung disease; (7) AIDS; and (8) renal disease, as well as others.
II. IMPORTANCE of HOSPICE CARE for PATIENT and FAMILY
Family caregivers often feel vastly overwhelmed with the responsibility that faces them during the last six months of a patient's life and the many aspects to coping with this unique role are varied and interweave across physical, emotional, financial, personal, interpersonal and spiritual matters, all of which makes this process very complex and the task daunting. For example, future plans must be made and the family caregiver for someone who is dying is faced with "a series of difficult decisions." (Doka, 2005)
Included in this series of decisions which are inherently difficult include decisions related to: (1) the living will; and (2) medical power of attorney. The advance directives of the individual who is dying may include: (1) the living will; and (2) medical power of attorney. (Doka, 2005) Other responsibilities faced by the family caregiver is planning the funeral, and coping with grief making this time one in which support is needed and this call is answered by the Hospice Care programs throughout the United States.
III. CHALLENGES FACED by HOSPICE CARE
The need for hospice care in the United States has expanded rapidly and in a large-scale manner in the endeavor to provide and maintain care characterized by quality and all of this "under more regulation and financial pressure." (Vitez, 2006) Secondly, the president of the National Hospice and Palliative Care Organization, J. Donald Schumacher is noted as stating that "getting hospice services to dying people sooner" presents a major challenge to those providing hospice care. (Vitez, 2006) Schumacher is also noted as having stated that too many in the United States "are still jumping through hoops in order to die well in this country. I find that to be a disgrace," at the same time, the nation is not prepared to care for the millions of baby boomers who will make huge demands on the end-of-life care system." (Vitez, 2006)
Vitez relates that hospital services "generally cost much less than expensive, aggressive hospital treatment at the end of life, the overall bill continues to mount." (Vitez, 2006) in 2005, approximately 1.3 million in the United States received hospital care, at a cost to Medicare of nearly $10 billion. This is an increase from only 400,000 receiving hospice care in 1996 at a cost of approximately $2 billion. (Vitez, 2006) Hospice care, which began in 1982, has added 3,650 organizations to its roster. Vitez notes the statement of Schumacher as follows: "You have to have a heart at the same time we're accountable - that's a big challenge...to "provide a really good day of care and improve business acumen so we meet regulations." (2006)
While hospice is most known for its provision of care to individuals with patients, hospice has expanded in its provision of care with cancer patients representative of only fifty-percent of the cases handled by hospice in 2005. Schumacher states in his interview with Vitez (2006) that the eligibility requirement based on having only six months to live should be eliminated because "...with many illnesses, making such a prognosis is difficult if not impossible, he said. And in the long run, less restrictive access to hospice will allow more people to get better care at less cost..." (Vitez, 2006)
IV. COMMON MYTHS of HOSPICE
Myth #1: Hospice is a place
Hospice care takes place wherever the need exists -- usually the patient's home. About 80% of hospice care takes place at home.
Myth # 2: Hospice is only for people with cancer.
More than one-fifth of hospice patients nation-wide have diagnoses other than cancer. In urban areas, hospices serve a large number of HIV / AIDS patients. Increasingly, hospices are also serving families coping with the end-stages of chronic diseases, like emphysema, Alzheimer's, cardiovascular, and neuromuscular diseases.
Myth #3: Hospice is only for old people.
Although the majority of hospice patients are older, hospices serve patients of all ages. Many hospices offer clinical staff with expertise in pediatric hospice care.
Myth #4: Hospice is only for dying people.
As a family-centered concept of care, hospice focuses as much on the grieving family as on the dying patient. Most hospices make their grief services available to the community at large, serving schools, churches and the workplace.
Myth #5: Hospice can only help when family members are available to provide care.
Recognizing that terminally ill people may live alone, or with family members unable to provide care, many hospices coordinate community resources to make home care possible. Or they help to find an alternative location where the patient can safely receive care.
Myth #6: Hospice is for people who don't need a high level of care.
Hospice is serious medicine. Most hospices are Medicare-certified, requiring that they employ experienced medical and nursing personnel with skills in symptom control. Hospices offer state-of-the-art palliative care, using advanced technologies to prevent or alleviate distressing symptoms.
Myth #7: Hospice is only for people who can accept death.
While those affected by terminal illness struggle to come to terms with death, hospices gently help them find their way at their own speed. Many hospices welcome inquiries from families who are unsure about their needs and preferences. Hospice staff are readily available to discuss all options and to facilitate family decisions.
Myth # 8: Hospice care is expensive.
Most people who use hospice are over 65 and are entitled to the Medicare Hospice Benefit. This benefit covers virtually all hospice services and requires little, if any, out-of-pocket costs. This means that there are no financial burdens incurred by the family, in sharp contrast to the huge financial expenses at the end of life which are incurred when hospice is not used.
Myth # 9: Hospice is not covered by managed care.
While managed care organizations (MCOs) are not required to include hospice coverage, Medicare beneficiaries can use their Medicare hospice benefit anytime, anywhere they choose. They are not locked into the end-of-life services offered or not offered by the MCOs. On the other hand, those under 65 are confined to the MCOs services, but are likely to gain access to hospice care upon inquiry.
Myth # 10: Hospice is for when there is no hope.
When death is in sight, there are two options: submit without hope or live life as fully as ever until the end. The gift of hospice is its capacity to help families see how much can be shared at the end of life through personal and spiritual connections often left behind. It is no wonder that many family members can look back upon their hospice experience with gratitude, and with the knowledge that everything possible was done towards a peaceful death (Naierman, 1997)
V. ETHICAL CHALLENGES to HOSPICE CARE…