THINK HOSPICE FOR QUALITY OF LIFE AND A COMPASSIONATE DEATH

    Dying Americans commonly receive inadequate pain management, little emotional support, and poor communication from their physicians.(1) This is particularly true for those dying in institutional settings.  Though the majority of individuals would prefer to die at home, when patients are approaching death they and their families often feel that the only way to get relief of symptoms or deal with a health crisis is to go to the emergency department for hospitalization. Although a number of choices for compassionate, palliative care outside the hospital exist (home health care and skilled nursing facilities, for example), the most widely available and effective options in most parts of the United States are the numerous Hospice organizations (note that most local and regional Hospice organizations are independently run, separate  businesses). However, many physicians and the public often have antiquated perceptions of Hospice care as limited to patients with cancer and consisting of pain relief by a nurse in the home during the last few days of life when patients become too sick to get to the hospital.

    Modern, comprehensive Hospice organizations offer a broad range of physical, emotional, logistical and social care; care that can be extended in the last months and even years of life. The continuum of palliative care services offered are intended for people (and their families) with severe, chronic, life-limiting illnesses, people affected by loss and grief, and may be suitable for anyone dealing with end-of-life issues. Although Hospice care is provided for people of all ages, the overwhelming majority of dying people are the elderly, who typically die of a slowly progressive chronic disease, or of multiple coexisting problems resulting in multi-system failure. Their last phase of life, often lasting several years prior to death, is marked by progressive functional dependency and associated family-caregiver burden. Physicians can refer patients to Hospice who are dying of virtually all forms of chronic, progressive, debilitating diseases, including cancer, heart disease, lung disease, liver disease, renal disease, and many others. Hospice care is available not only in the patient’s home, but also in nursing home, ALF, hospital and other settings. Physicians have the option of continuing direct patient care or referring some or all aspects of care to the Hospice team. Yet Hospice remains grossly underutilized and, even more commonly, is recommended much too late for optimum benefit. Hospice palliative care can provide end-stage disease and symptom management, comfort, and support for these patients and their families long before the last few months of their lives.(2) To afford patients the best possible quality of life and longevity, initiation of palliative or comfort care is typically appropriate during ongoing life-prolonging care and well before medical futility. As curative treatments become ineffective and undesirable, it is appropriate to shift progressively from curative to comfort care. This is often the time when initiation of Hospice care should be considered (Figure 4 Timing of Palliative Care).

    A common myth about Hospice is that it is defined by the Hospice Medicare benefit, which is only one type of reimbursement for Hospice care within the last six months to last year of life. Hospice programs have expanded care and service options to more fully respond to the needs of their communities. These newer delivery models are offering supportive, palliative services during the last “years” of life, and can be provided in collaboration and simultaneously with curative or restorative approaches.(3) Comprehensive care, including medications, is covered by governmental and insurance third party payers in most instances. Many other services are offered to patients and families by a number of Hospice models in Florida(4) are now offered in other states:

    Comprehensive end-of-life care offered by Hospice is typically offered through a multi-disciplinary team, bringing unique expertise to support the full scope of patient and family experiences (physical, social, spiritual, emotional), thereby expanding the support offered by the patient’s physician. The team may commonly consist of:

    The Hospice approach to end-of-life care improves the quality of the patient and family’s experience.(5) Partnering with Hospice in the care of your patient does not mean that you are “giving up” or “abandoning” your patient. The primary physician has the option of continuing to oversee all medical care while the Hospice team broadens the physician’s reach to include:

    The high level of success and patient satisfaction with Hospice is commonly reflected in the fact that the most frequent comment heard from families served by Hospice is, “I wish we had it sooner” or “I wish the doctor had told us about Hospice sooner.”(6)

    Given the increasing services offered and expanded utilization of Hospice, why do physicians frequently delay use of Hospice services or fail to use Hospice altogether? Several possible reasons include (1) some physicians are simply unaware of the services offered and of the patients who qualify (they assume Hospice is only for cancer patients, for example); (2) mention of Hospice care may be perceived by both physician and patient/family as an indication that death is near and the physician is “giving up” on the patient; (3) the physician’s ability to predict the expected time of death is limited and difficult and the physician may be under the false impression that Hospice cannot be recommended until death is predictable; (4) conversations about Hospice may bring on more generalized conversations about prognosis and death, which the physician may not be comfortable with at that time or at all; (5) physicians or patients may be reluctant to consider Hospice because of misperceptions about possible costs to the patient or family. Knowing when to begin these conversations is not a precise science with clear prognostic indicators. Research has repeatedly shown these conversations begin too late for patients and their families to optimally benefit from palliative Hospice services. Although physicians and families are commonly reluctant to bring up the subject of dying with the patient, the vast majority of Americans (>90%) want to know if they have a life limiting illness and want accurate understandable information about their condition.

^[1] Teno, J. et al.  Family Perspectives on End-of-Life Care at the Last Place of Care JAMA. 2004:291;88-93.

^[2] Panke JT, & Coyne P. (Eds.). Conversations in Palliative Care. Pensacola, FL: Pohl Publications. 2004.

^[3] Egan, K. A. & Labyak, M. J. Hospice care: A model for quality end-of-life care. In B.R. Ferrel & N. Coyle (Eds). Textbook of Palliative Nursing. New York: NY; Oxford University Press. 2005:7-26.

^[4] Miller, S. & Lima, J. The Florida Model of Hospice Care: A Report for Florida Hospices & Palliative Care, Inc. Center for Gerontology & Health Care Research, Brown University School of Medicine. 2004.

^[5] Byock, I, & Merriman, M.P. Measuring quality of life for patients with terminal illness: The Missoula-vitas quality of life index. Palliative Medicine 12.  1998:231-244.

^[6] Arnold, R & Egan, K.  Breaking the “Bad” News to Patients & Families: Preparing to Have the Conversation About End-of-life & Hospice Care. Am J Geriatric Cardiol 13(6): 307-312.LeJacq Communications, Inc. 2004.

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