Sourcebook : Improving Care for the End of Life : 6.0 Relationships, Spirituality, and Bereavement

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.

A majority said human interaction would be important to them if they were dying:

55 percent would want someone with whom to share their thoughts and fears.
54 percent would just want someone with them.
47 percent would want someone holding their hand or touching them.
50 percent would want the opportunity to pray alone.
50 percent would want to have someone praying for them.

People seek comfort from family and friends:

81 percent turn to family.
61 percent turn to close friends.
36 percent said that a member of the clergy could be comforting.
30 percent said a doctor could be comforting, and 21 percent said a nurse could.

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:

Incorporating chaplains and clergy on the health care team
Offering diverse complementary therapies to patients and families
Providing "hospitality" carts to families keeping vigil in ICUs
Improving caregiver confidence through education and telecommunication
Training clinicians in communications skills
Recruiting and training volunteers to interact with patients and families
Assessing patient suffering and ways to cope with it
Discussing what helps patients and families find meaning in life
Establishing and offering bereavement services for patients, families, and staff members

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
Being held and comforted by loved ones Being listened to--sharing their hopes, dreams, fears and anxiety with loved ones and caregivers Having the opportunity to pray or meditate, participate in sacred rituals, listen to music, and spend private time with family and friends Receiving blessings from family, friends and clergy Making peace with God, family and friends Seeking forgiveness from God, family and loved ones Being at peace with themselves and with others

Patient and Family Needs

Being held and comforted by loved ones
Being listened to--sharing their hopes, dreams, fears and anxiety with loved ones and caregivers
Having the opportunity to pray or meditate, participate in sacred rituals, listen to music, and spend private time with family and friends
Receiving blessings from family, friends and clergy
Making peace with God, family and friends
Seeking forgiveness from God, family and loved ones
Being at peace with themselves and with others

Best Practices To Enhance Supportive Care
Hospice care that routinely includes family and spiritual concerns, and that offer education and counseling about what to expect as disease progresses and as patients near death Grief counseling programs for bereaved families and loved ones, regardless of place of death (e.g., ICU, nursing homes) Programs that support family caregivers, and respect patients’ spiritual search for meaning and religious rituals

Best Practices To Enhance Supportive Care

Hospice care that routinely includes family and spiritual concerns, and that offer education and counseling about what to expect as disease progresses and as patients near death
Grief counseling programs for bereaved families and loved ones, regardless of place of death (e.g., ICU, nursing homes)
Programs that support family caregivers, and respect patients’ spiritual search for meaning and religious rituals

Even Better “Best” Practices To Enhance Supportive Care
Even better practices would enhance best practices several steps, by: entering the experience in terms of human life, spirituality, and meaning, rather than in terms of medical and physiological issues. In this context, professional caregiver habits become secondary to patient and family living patterns and preferences Using episodes of serious illness as opportunities to talk about death and dying and loss, about what gives ultimate meaning in life, and about setting priorities on values and goals in one’s life Creating rituals to mark passages in life Reassuring families by explaining what is happening and counseling them Learning how to provide care that accepts death as part of life while prolonging and enhancing the quality of life and relieving suffering

Even Better “Best” Practices To Enhance Supportive Care

Even better practices would enhance best practices several steps, by:

entering the experience in terms of human life, spirituality, and meaning, rather than in terms of medical and physiological issues. In this context, professional caregiver habits become secondary to patient and family living patterns and preferences
Using episodes of serious illness as opportunities to talk about death and dying and loss, about what gives ultimate meaning in life, and about setting priorities on values and goals in one’s life
Creating rituals to mark passages in life
Reassuring families by explaining what is happening and counseling them
Learning how to provide care that accepts death as part of life while prolonging and enhancing the quality of life and relieving suffering

Innovators Need to Know
Dying patients need medical and nursing care - but they also need emotional and spiritual support and opportunities to address important relationships and to be with loved ones. Families and loved ones need care and support during the difficult period of caring for a dying person. The end of life can be a time for growth and meaningfulness. Spirituality can encompass any of the ways in which people seek greater meaning to their lives - and institutional practices can respect individual spirituality and offer pa tients time and privacy for comfort, peace, prayer, and ritual. Bereavement support for families is a crucial element of good end-of-life care.

Innovators Need to Know

Dying patients need medical and nursing care - but they also need emotional and spiritual support and opportunities to address important relationships and to be with loved ones.
Families and loved ones need care and support during the difficult period of caring for a dying person.
The end of life can be a time for growth and meaningfulness.
Spirituality can encompass any of the ways in which people seek greater meaning to their lives - and institutional practices can respect individual spirituality and offer pa tients time and privacy for comfort, peace, prayer, and ritual.
Bereavement support for families is a crucial element of good end-of-life care.

6.0.1 Case Study - Fairview Health Systems
<<< Previous Next >>> [ Go Up ]

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 ].