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What is the relationship between hospice care and palliative care? It is a more complicated question than may at first appear. The two labels are often thought to be virtually synonymous, particularly if one bears in mind that the hospice philosophy (if not the Medicare Hospice benefit) has been expanding its ambit over time to include persons who are dying not only of cancer but of many other fatal diseases as well, and not only those who are thought to have less than six months to live but those whose dying process may follow a longer, more chronic and unpredictable course—who may be
referred to as the “chronically dying” or the “chronically terminally ill.” This perspective is consistent with the definition of palliative care formulated by the World Health Organization, which makes it virtually identical with hospice: “The active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social, and spiritual problems is paramount. The goal of palliative care is achievement of the best possible quality of life for patients and their families.”
From another perspective, however, the two terms are often taken to refer to different caregiving orientations, time frames, institutional settings. WHO’s definition of palliative care goes on to add that “Many aspects of palliative care are also applicable earlier in the course of the illness, in conjunction with anti-cancer treatment.” From a medical perspective, then, palliative care may be taken as the broader term, covering all forms of the prevention and treatment of suffering, while “hospice,” in a narrow medical sense, has been viewed as a subset of palliative care especially targeted to the needs of those near death. This usage seems consistent with the Medicare program, which after all is a hospice benefit and not a palliative care benefit. Palliative care is appropriate whenever symptoms causing pain and suffering are present, and good counsel regarding the consequences of illness and treatment is required, regardless of the underlying medical condition and prognosis of the patient. A child receiving chemotherapy for leukemia, with an excellent chance for recovery and long life, should still receive palliative care as a component of the care plan. Traditional hospice care, on the other hand, has always included addressing the patient’s impending death and the reaction to that prospect, whatever additional medical and nursing services it might also involve .
What Hospice Means and Caregivers
Chances are that as you age, you will either be a caregiver or will need someone to care for you. The amount of care provided by informal care-
givers in the United States is staggering. Estimates of the value of these services are $196 billion annually. We care for grandparents, parents, spouses, friends and neighbors, and children. The average caregiver provides four and a half years of care. Three out of four caregivers are women, who themselves are less likely to be cared for by a family member than their male counter parts. With rare exceptions, our health care economic system does not value or reward caregiving. Caring for a person who will not recover is one of the most stressful of human experiences. People can feel intense psychological suffering in response to caregiving and bereavement. Adverse psychological distress can continue for months and years. Those who report mental and emotional strain associated with the chronic stress of caregiving had a mortality risk 63 percent higher than non caregiving controls. Caring for someone with advanced illness is fraught with hazards and opportunities. The impact of caregiving on health and well-being varies widely. Most who do so are motivated by love and concern. Giving to others can be very rewarding. It can also be very stressful. Many factors determine the extent to which caregiving is a burden and a blessing. Among these are the length and intensity of caregiving, the nature of the relationship with the person needing care, the amount of psychological, social, and physical support provided to the caregiver, the presence of professional caregivers, and the self-perception and emotional health of the caregiver. The optimal period of caregiving appears to be
months rather than years. Most of us can muster the inner resources to devote ourselves to the needs of someone we care about for a distinct period of time. But when caregiving responsibilities are considerable and no end is in sight, we feel more strain. This stress is both physical and financial. Over one-third of terminally ill patients have substantial care needs. Long-term, open-ended caregiving is often characteristic of the needs of the
chronically ill with advanced disease. We find it easier to care for someone who is an important part of our emotional life. The closer we are to the person we are caring for, the easier it is to be motivated to provide care. However, closeness is not necessarily defined by familial relationships. One might have a close and intimate relationship with a spouse, for example, and be devoted to his or her care, or one might have an ambivalent, even abusive relationship and provide care resentfully.
Home Care and What Hospice Means
Many have found that they need a support system to help with caring for their loved ones during the hospice
process. Home care is an example of one of those needs that will provide the much needed relief. If you are feeling overwhelmed and would like more help in the home which consists of activities of daily living such as bathing, grooming, light house keeping, prescription pick up, or other errands a home care service company in your area would be able to help you. If you are in the Boston or surrounding areas contact Metamorphosis Home Care
for a free assessment.