Contact: Kevin Kavanaugh Director of Public Affairs (773) 478-6613 kkavanaugh@nursinghome.org

September 15, 2000

Illinois Nursing Homes Develop Successful Programs to Promote Comfort during End-of-Life Care 

(Chicago) -- As the American population of aged people grows, public awareness of death, dying, and issues faced at the end of life is increasing. And with the broadcast of "On Our Own Terms: Moyers on Dying," a series hosted by Bill Moyers on PBS stations this week, these issues have come to the forefront as many baby boomers are now confronting the deaths of their own parents and look down the road at their own mortality. The cover story of this month's Time magazine is on death and dying, educating the public on such important issues as reducing pain, maintaining control over health care decisions, and promoting peace of mind during the dying process.

All of the material addressed in both the Moyers' PBS series and the Time magazine article has direct relevance for the care persons receive in nursing homes. To promote the well-being of those who are dying, Illinois nursing facilities have developed a variety of successful programs designed to promote these individuals’ feelings of comfort, independence, and security. These well-received initiatives reflect a palliative model of care, originated by the hospice movement, which emphasizes promoting resident wellness through an aggressive approach to pain control and a willingness to deal honestly with the emotional issues of dying.

Providing comfort care to the dying is an increasingly important issue for today’s Illinois nursing facilities. While in the past people usually died in their homes, most people nowadays die in a hospital or nursing home environment. According to a recent report by the National Center for Health Statistics at the Centers for Disease Control and Prevention, the majority of deaths (56 percent) occur in a hospital, clinic or medical center; 19 percent of people die in a nursing home; and about 21 percent die at home.

About one-third of Americans pass through a nursing home before they die, and the average length of stay is eight months (hospital stays, by comparison, average just three days). The number of persons spending their final days in a nursing home is increasing as facilities attempt to lower their rate of hospital transfer for residents at the end of life, to allow for peaceful deaths “at home” in the facility rather than in the more aggressively acute care environment of a hospital. In the future, the total number of Americans who spend their final days or months in a nursing home is only expected to increase as the baby-boom generation ages.

With more people coming to nursing homes for end-of-life care, Illinois nursing facilities have developed a variety of successful approaches for meeting resident and family needs. These initiatives include partnering with hospice organizations, aggressively managing pain, encouraging residents to complete advance directives, training and sensitizing staff on end-of-life issues, meeting residents’ spiritual needs, and helping families with the grieving process.

 Nursing Homes and Hospice: A Caring Partnership

Nursing homes and hospice organizations are increasingly working together to provide comfort and compassion to terminally ill residents and their families. Hospice services were once confined mostly to cancer patients from hospitals. Currently, hospice is being utilized by those with other diagnoses, from Alzheimer’s to renal failure, including thousands of residents in long term care settings. In Illinois, according to the latest resident assessment data, over 1,200 residents are receiving hospice services in a long term care setting.

 In 1983, the Health Care Financing Administration began offering a hospice benefit for Medicare patients -- the form in which most hospice services come to nursing homes. The criteria for Medicare hospice benefits are a diagnosis of a terminal illness and a prognosis of approximately six months or less.

Hospice programs focus on the patient’s comfort, rather than on the continuation of efforts to prolong life. The hospice philosophy is that dying should be accepted as a unique part of life and not resisted with every medical treatment in the hope of an unlikely cure.

With hospice care, a patient is eligible for social work services, chaplain services, home health aide care, even 24-hour care if the patient is in acute distress, all of which are provided by a hospice team. As a result, patients are able to stay in nursing homes longer and avoid hospital admissions. Furthermore, the compendium of quality care they receive, because of the hospice teams working with the nursing home staff, is enhanced greatly.

"Hospice professionals work together with nursing home staff in keeping patients as functional as possible, listening to their needs, and doing all that is possible to promote their comfort," states Nancy Revennaugh, RN, M Div, Staff Development Coordinator of Hospice of Integrated Health Services. "Hospice staff bring to nursing facilities a high level of expertise in symptom control and in addressing the emotional and spiritual issues surrounding end-of-life care."

 The Aggressive Management of Pain

 The hospice movement has helped bring greater attention to the importance of pain management during end-of-life care. Illinois nursing homes have developed comprehensive pain treatment programs to allow residents to receive necessary comfort, exercise greater independence, and enhance their dignity and life involvement.

Nursing home staff members frequently assess residents for pain, with analgesic medications given as needed. The effectiveness of the resident’s pain management is monitored closely, with physicians notified of the results. Pain is defined as, “whatever the experiencing person says it is, existing whenever the experiencing person says it does.” Addiction or dependency to the drugs is usually not a concern when controlling pain of the dying residents, and drugs are usually not withheld for this reason.

In addition to medications, nursing home staff members utilize a variety of other methods to control pain, including positioning and skin care, massages, relaxation exercises, distraction, guided imagery, and the application of heat and cold. Every effort is made to treat pain aggressively and proactively to enhance the quality of life of persons who are dying.

 Providing Control: The Importance of Advance Directives

Residents who have terminal illnesses can better maintain their control over health decisions through the completion of advance directives. An advance directive is a written document that states a person’s desires about health care at a later time when he or she is unable to make decisions. With congressional passage of the Patient Self Determination Act in 1991, nursing home professionals have increasingly utilized advance directives. This act requires that all facilities that receive Medicare or Medicaid funds inform patients, on admission, of their rights under state law to refuse treatments and prepare advance directives.

In Illinois, according to the latest resident assessment data, about 80% of all nursing home residents complete advance directives. There are two primary types of advance directive documents available:

Health Care Power of Attorney: This document enables an individual to have decision made about their care when they are unable to do so. A person appoints someone else to have the legal right to make decisions about health care. The person who has completed the health care power of attorney form makes his or her own decisions until no longer capable, then the person appointed with health care power of attorney begins making decisions.

Living Will: This document allows persons to indicate their views on life-sustaining measures. It can describe whether or not they desire to be placed on ventilators, receive tube feedings, and be resuscitated. A living will provides direction to doctors as to the use of measures to prolong dying. A copy of the living will is placed in the patient’s medical record.

If a person doesn’t have a health care power of attorney, a physician may designate a health care surrogate if this individual cannot make health care decisions. This health care surrogate will be one of the following persons (in order of priority): guardian of the person, spouse, any adult child(ren), either parent, any adult brother or sister, any adult grandchild(ren), a close friend, or guardian of the estate.

 Training and Sensitizing Staff on End-of-Life Issues

 Since good end-of-life care is dependent upon the skills an attitudes of all those who treat and support residents during their final days, continuing education for staff members about death and dying issues is a crucial intervention.

Many Illinois facilities such as Meadowbrook Manor of Bolingbrook have developed inservice programs that focus on the emotional aspects of death and dying. Held quarterly, Meadowbrook's training program is designed to help staff members more effectively address residents’ and family members' needs, as well as deal with their own feelings of grief when residents are terminally ill.

“Communication can be the greatest barrier in providing effective care to persons who are dying,” states Dr. Beth Walston, Executive Director of the Illinois Coalition for Improving End of Life Care. “Staff need to be sensitive to the needs of the dying patient and take the time to listen carefully to what they have to say. Unfortunately, some staff members are very uncomfortable with the subject of death and find it difficult to talk with these patients in an open and candid manner. Sensitivity training plays an important role in overcoming their discomfort.”

 Peace, Strength, Hope: Meeting Residents’ Spiritual Needs

 Persons who are dying often turn to their spiritual and religious roots as a means of overcoming their distress. Dying individuals may desire visits from clergy, prayer, Bible reading, and special rituals related to their religious beliefs. Because spirituality plays an integral role in the well-being of residents, Illinois nursing facilities have developed creative approaches to meet these residents’ spiritual needs.

Many Illinois facilities have pastoral counselors on staff to provide individualized resident visits, offering spiritual guidance and serving as a warm and caring friend. At Lake Shore HealthCare and Rehabilitation Center in Chicago, pastoral counselor Thom Ford helps dying residents with the process of life review, helping them to understand the meaning of their lives. "I talk with residents about unfinished business, particularly their need to reconcile and make peace with family and friends," states Pastor Ford. "I talk about their feelings surrounding death and try to discover ways that we can optimize their comfort and ease their fear of dying."

Staff members at Lake Shore complete "spiritual assessments" on residents, finding out pertinent information about each resident's particular religious background and spiritual needs. Pastor Ford utilizes this information to provide residents, particularly those who are dying, the spiritual services that they need, such as offering the Rosary, reading scripture, and reciting a meaningful prayer.

At Lake Shore, staff members and volunteers often spend time with residents who are terminally ill as a means of providing comfort and reassurance. Holding hands and other forms of therapeutic touch can be a powerful tool in communicating caring and concern. Listening to soothing music, spending time outdoors, receiving a visit from a child, and smelling freshly cut flowers are just some of the simple yet meaningful interventions that staff members utilize to promote the spiritual well-being of persons who are dying.

 Helping Families with the Grieving Process

One of the most beneficial aspects of the hospice model of care is the provision of emotional support to grieving family members. Illinois nursing facilities have worked together with hospice organizations in developing helpful programs that assist families with their feelings of loss and communicate a sense of caring, empathy, and respect.

Many hospice organizations and nursing facilities provide one-on-one counseling and support groups to grieving family members. At Meadowbrook Manor, the monthly "Family Forum" program enables families to meet as a group with a psychologist to discuss emotional issues, including difficulties in handling the grieving process. The psychologist and social services department are also available to families for one-on-one counseling.

Some nursing facilities host their own in-house memorial services as a means of communicating respect to those who have passed away. Plaza Terrace Nursing Center in Midlothian has memorial services whereby staff, family, and residents are encouraged to come forward and share uplifting and meaningful stories about a resident who has recently passed away. Staff members at Plaza Terrace are encouraged to attend the wakes and funerals of deceased residents to express their condolences to grieving family members.

In addition, Plaza Terrace sends out sympathy cards routinely to families that include personalized messages from staff. In some nursing homes, activities staff create booklets that describe the resident’s life and activities at the facility as a dignified remembrance. One of the most well received interventions is featuring the names, photos, and life stories of deceased residents on a Memory Board to inspire sharing and reminiscence.

By developing creative programs that provide comfort during end-of-life care, Illinois nursing facilities have made great progress in meeting physical and emotional needs of terminal residents and of their loved ones. As Terry Sullivan, executive director of the Illinois Council on Long Term Care states, “With sicker and frailer residents coming into today’s long term care facilities, end-of-life care is playing a more important role than ever before. Persons who are dying benefit most from a comprehensive plan of care that focuses on their comfort needs, tapping into the expertise, caring, and compassion of the entire interdisciplinary team. I believe that Illinois nursing facilities have been very successful in meeting the specialized needs of persons who are dying.”

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