Hospices are rich and complex in virtually all of their facets in the skills and services they provide, in the needs they meet, in the expectations that people have of them, and in the range of personal and social values they serve. Yet for twenty years, hospice service care has been defined, both overtly and implicitly, in public policy and in social attitudes, as being appropriate only for those who are beyond the reach of hope or continued medical care.
This understanding of hospice service care must be changed. It drives away patients and families; it causes many physicians to delay hospice referral; it focuses attention on the grave medical condition and prognosis that accompanies a referral to hospice services, and away from the positive nature and aspects of what a hospice services programs can achieve.
Hospice Services and End of Life
People witness or hear about dying without appropriate hospice services care and they come to regard that prospect as the expected course of affairs, as something that they must come to accept. Those most supportive of hospice are people who have experienced first hand what it can achieve. Americans have very high expectations of health care, it would seem, except at the very end. Then their expectations are grim. It is little wonder that so many people have so much difficulty reconciling themselves to the incurable state of their disease or to the futility and likely burden of life prolonging measures. Palliative care and hospice are not the care of “last resort;” they are not something that comes after other forms of care have been tried and failed. Palliative care is an integral part of all health care, and should be viewed in that light. It should be provided in a variety of modes and settings as the patient’s condition and life situation call for. Hospice Services care involves much more than fast-acting pain relief medications; it has psychosocial and spiritual goals and dimensions that can be met only through the building of trust, communication, and relationships that touch the self of the patient and the system of the family, not just the body. It is not for the imminently dying only, but for those wrestling with the complex clinical and personal decisions associated with an eventually fatal illness.
Hospice Services Not End of Hope
In any case, neither palliative care nor hospice care should signal the end of the physician-patient relationship, but simply a new stage in that relationship, with new goals and new collaborating caregivers. Palliative care should not signal the cessation of various forms of medical treatment chosen by and potentially beneficial to the patient that might lengthen the duration of life or improve the quality of life. Above all, hospice should
not—and does not—signal the cessation of hope, but simply a shift of its focus.