Hospice and the nursing home.

Because nursing home staffs are expected to be well-versed in the needs of the dying, the potential role of the hospice provider in the nursing home is often overlooked and, in some facilities, thought to be non-essential. Their thinking is that dying residents are better cared for by the people who were already providing them with high-quality care before the terminal diagnosis was made. Hospice is much more than an optionally "desirable service," however; it is an essential program for nursing homes wanting to offer a high standard of care.

Nursing homes utilizing an outside hospice agency benefit greatly by eliminating the need to hire or retrain personnel in hospice procedures, Medicare regulations or Focused Medical Review requirements. Nursing homes will also be able to rely upon the experience of the hospice staff for support or guidance whenever a conflict or problem a rises with a patient or family member.

The best possible scenario for the terminally-ill nursing home resident is one in which the nursing home staff and the hospice team work closely together, as a team, to plan and deliver a program of care that is customized for each individual.

Building the Team

What is the role of hospice and how should the standards of hospice care be measured? At Family Hospice, our experience with nursing homes and other LTC providers has shown us that the first step in the process is to thoroughly communicate the way in which hospice differs from other types of care.

Hospice is a comprehensive approach, focusing on palliative, rather than curative, care. It requires a multifaceted team, including a hospice-trained physician, nurse, social worker, spiritual and bereavement counselors and others. Nursing home staff should understand the roles of these hospice team members, as well as what is expected from each of them.

The Hospice Physician. By working collaboratively with the resident's attending physician, the hospice physician builds upon the attending's prior knowledge of the case. It is up to the attending physician to determine his or her degree of involvement. Calls in the middle of the night, for example, are common during a terminal illness, and if the attending physician prefers, these calls and other emergencies can be handled by the hospice physician.

The hospice physician's specialized knowledge of palliative medicine also reduces the likelihood that the dying patient will endure unnecessary pain and discomfort.

The Hospice Nurse. Hospice nurses have similarly special expertise in pain management and palliative medicine. The primary role of the hospice nurse is to coordinate all patient care activities in tandem with the nursing home staff, developing a plan of care for each patient that is accessible by the facility's director of nurses.

While Medicare guidelines for hospice require one nursing visit by an RN every 14 days, Family Hospice nurses typically visit each patient twice a week because, more often than not, anything less frequent is simply inadequate. The ideal frequency for RN and home health aide services should be determined by the hospice nurse, working hand-in-hand with a nursing home nurse who, like the attending physician, is familiar with the patient's physical needs.

Though nursing home and hospice nurses have similar missions, there are differences in their respective "cultures," tasks and experience.

The vast majority of nursing home nurses are licensed practical or vocational nurses who provide bedside, task-oriented care. RNs at nursing homes are more often in management positions, with responsibilities that limit their ability to provide hands-on care to dying patients. The opposite is true of RNs who specialize in hospice care.

Early on, it is important to determine which activities should be handled by the hospice nurse and which by the staff nurses. Some nursing homes, for example, prefer that the hospice nurse be responsible for pain medication orders related to the terminal diagnosis, while others prefer that their staff nurses undertake this task. It is up to the nursing home to make such decisions.

It must be emphasized, however, that the hospice nurse is essentially an "outsider" who is invited into the nursing home via a contractual arrangement. The hospice nurse must learn and follow the facility's policies and procedures. Establishing a real sense of teamwork early on is the best way to overcome or avoid territorial issues and to build mutually beneficial relationships.

"Elizabeth," a Family Hospice patient and nursing home resident, is a good example of this team-based approach at work. A 79-year-old widow, Elizabeth was diagnosed with end-stage dementia. Unresponsive and experiencing little, if any, quality of life, she had previously prepared a living will and had emphatically stated that she wanted to die naturally, with no artificial life support.

A feeding tube had been surgically implanted prior to Elizabeth's terminal diagnosis, and her son was faced with the heart-rending dilemma of deciding whether to continue the tube feeding or to follow his mother's express instructions. Both the nursing home staff and the hospice team worked together, providing her son with the information and support he needed to make his own decision. In the end, Elizabeth's son honored his mother's wishes, both documented and verbalized, and decided to discontinue the tube feeding. Elizabeth died within 17 days.

Spiritual and Psychosocial Care. Many people don't realize that hospice is much more than palliative medicine. A truly effective program of care includes social workers, bereavement and spiritual counselors, and volunteers.

Some state regulations call for a nursing home to employ one full-time social worker per 121 or more beds. These social workers are stretched very thin in their efforts to help more than 100 people and their family members at any given time. The hospice social worker can often lighten this caseload. A social worker specializing in the needs of the terminally ill not only helps to address the patient's psychological issues, but also plays an instrumental role in educating the family on what to expect as the illness progresses. On a more practical level, the social worker can also assist with advance directives, living wills, guardianship plans and other issues.

A hospice-trained social worker does not, however, eliminate the need for a spiritual counselor. The chaplain can provide comfort and spiritual support to the nursing staff as well as to the patient and family; in many cases terminally ill patients have been residents of the nursing home for years, and staff members consider them "part of the family."

Specially trained volunteers also play an important role in the day-to-day routine of a terminally ill individual. By establishing and building supportive friendships, volunteers can help make the patient's last days of life more fulfilling.

Hospice as Educator

Another important role of the hospice team is that of educator - educating the nursing home staff about hospice and its benefits to patients. Even though hospice care is much more prevalent than it was a decade ago, many health care professionals have only a superficial knowledge of it. Hospices can also provide inservice training to nursing home staff on such topics as pain management, HIV/AIDS, death and dying, and issues related to grief and loss.

Who Pays?

For qualified patients, Medicare (and Medicaid in states where available) covers the entire cost of hospice services. There are no deductibles or copayments for routine home care, continuous care or general inpatient care. Physicians, RNs, home health aides, pastoral counselors, social workers and volunteers, as well as medical equipment used, are all included, and drugs can be.

Other sources of payment include private insurance, HMOs and personal payment. Individual payment plans can be developed to meet specific needs and, in many cases, non-funded care is donated for needy patients.

In Sum

Understanding hospice's comprehensive approach to care can make a major difference in the overall quality of care the nursing home provides.

When experts in hospice and nursing home care join forces, the end- result is a team - and a level of quality care - that can make beautiful memories of the time that patients and families have remaining.

Mary Lou Gillespie is Chief Hospice Officer, Family Hospice, Ltd., Dallas, TX.