We are here on earth to do good to others. What the others are here for I don't know.
- W. H. Auden
Health care providers are beginning to realize that meeting the emotional and spiritual needs of dying patients and their loved ones can be as important as providing good medical care. As a Gallup study (1997) reported, "Those who are dying are more than objects of medical attention. They remain human beings with the wide variety of needs they experienced over the course of their life - practical, emotional, spiritual, as well as medical." Health care professionals can alleviate patient suffering by helping them to find meaning despite illness and by offering opportunities for inpatients and nursing home residents to participate in spiritual and religious rituals.
Studies indicate that most Americans want to talk about their spiritual lives when confronted with the end of their physical lives. A national survey (Gallup, 1997) demonstrated the importance people place on human contact and prayer at the end of life.
By addressing patient and family fears and concerns, providers can promote a better quality of life for patients, alleviate their anxiety, and provide the human contact sometimes lacking in today's medical system. Spirituality is one way to help people find hope and meaning in the midst of suffering.
Organizations offer a range of supportive services, such as chaplain referral activities to increase caregiver confidence, community outreach programs, and bereavement support and counseling. These services have been the mainstay of hospice programs for many years, and hospices are usually willing to share what they know with others.
When emotional and spiritual needs go unmet, clinicians and patients miss the opportunity to make informed decisions, to talk to families, to resolve financial and legal issues, or to make the most of the time they have.
Spirituality includes the search for ultimate meaning and purpose in life. Each person specifies the definition to fit his or her own beliefs and experiences. Expressions of spirituality include religion, music, art, nature, and other spiritual beliefs. There are spiritual aspects to many relationships people have. As people approach death, they often struggle with existential questions, such as "Why me? Why now? Why this? How will my loved ones survive my death? What will happen to me when I die? What's next?" Although spiritual questions such as these have no easy answers, clinicians can support patients and their loved ones along their spiritual journey, as the patient and family try to come to peace with these issues.
One doctor has written, "Just because dying is natural doesn't mean it's easy" (Tobin and Lindsey, 1999). Many dying patients question both their physical health ("Why is my body doing this? What does this symptom mean?") and the universe and their role in it. Health care providers who are prepared to guide and counsel patients in a compassionate, caring way through the difficult transitions at the end of life fulfill one of medicine's important roles to comfort the sick.
In This Chapter
This chapter describes the changes different systems tried - from urban and rural public hospitals to community-based hospices - to provide more holistic patient care by supporting human relationships, spirituality, and meaning in life both for patients and for health care providers. Changes described include:
Unlike the experiences of groups working to improve dyspnea or continuity, groups that tried to improve in this area found that even the most basic change could lead to improvement. This is a sad commentary, reflecting the very poor state of human affairs in medical care. Yet it is also a powerful reason to improve - now.
|Patient and Family Needs|
|Best Practices To Enhance Supportive Care|
|Even Better “Best” Practices To Enhance Supportive Care|
|Even better practices would enhance best practices several steps, by:
|Innovators Need to Know|
6.0.1 Case Study - Fairview Health Systems
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This online version of the book Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians is provided with permission of Americans for Better Care of the Dying [ www.abcd-caring.org ] and Oxford University Press. All rights reserved.
For further information on quality improvement in end-of-life care visit The Palliative Care Policy Center [ www.medicaring.org ].