A circle of care: coordination between nursing homes and hospice.

Hank was agitated. A hospice patient approaching the end of his life in a nursing home, he talked incoherently and obsessively of cars and tires. The facility staff assumed he was delirious and having hallucinations. The director of nursing conferred with the hospice team, who sat down with Hank's family to learn what might be on his mind.

With Hank's son to interpret, hospice discovered that Hank, always a caring husband, was afraid that he would die with a crucial task left unfinished: He needed to replace the tires on his wife's car. "We were able to get new tires put on the car and assure him that his wife was safe," says Susan Abbott, executive director of Akron Area AseraCare Hospice. "It brought him great peace of mind and eased his passing."

That's just one example of how a problem identified by the nursing home staff was coordinated through the hospice team to provide comfort to the patient. Through such collaboration, both the nursing home and hospice form a circle of care around the terminally ill patient. "The nursing home is a long-term care specialist, and hospice is the end-of-life specialist," says Polly Rehnwall, principal hospice consultant for Polly Rehnwall, Inc. "It's critically important that the two recognize each other's expertise and really engage each other in sharing information."

Mark Hammond, MD, who has served as medical director for nursing homes since 1986 and is currently a medical director for AseraCare, says that hospice is a viable option for long-term care management that is often overlooked. "Hospice is a vital component of the nursing home when it is performed as a coordinated effort," he explains.

The short definition of hospice is care for a terminally ill patient. "But hospice is so much more--it's a mindset, a feeling," says Mickey Gerhard, professional services regional manager for AseraCare. "It's a family-centered way to provide pain management and comfort for both the family and the patient at the end of life."

Hospice is particularly important as an adjunct to nursing home care because facilities often have little experience in managing end-of-life care. Debra Sullivan, RN, BSN, a healthcare trainer in Huntington, Massachusetts, shared her insight in a September 2004 article in Nursing Homes/Long Term Care Management ("Missing: Death Education for Nursing Facilities," by Donalyn Gross, PhD, LCSW, CMP, p. 76): "I see many CNAs and nurses come into long-term care facilities who lack the experience and training regarding death and dying, and some who have never witnessed a death," she wrote. "They feel as I have felt--fearful, anxious, and helpless."

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Healthcare professionals typically focus on curative care; hospice staff, on the other hand, recognize terminal illness and try to help the patient achieve the best quality of life during the time he or she has left. Often, when quality of life improves, so does longevity, as suggested by a study commissioned by the National Hospice and Palliative Care Organization (published in the Journal of Pain and Symptom Management, September 2004, Volume 28, Issue 3, pp. 200-210), which reported that hospice patients live longer on the average than similar patients who did not choose hospice care.

"We don't look at hospice as 'giving up,' we look at it as a change in focus," says Hammond. "Many times when we can better manage a patient's symptoms in the last six months of life, his or her quality of life dramatically improves. I feel that is extremely valuable--it supersedes the desire to cure the physical body at all costs."

The special training and knowledge of hospice applies to the nursing facility staff and patients' families, as well. "We are the experts," says Jan Brasher, executive director of AseraCare in Birmingham, Alabama. "When a person has pain and symptoms associated with end of life. we're the specialty medicine, specifically trained for that situation. Nursing homes generally do a terrific job of caring for patients, so when their expertise is melded with the expertise is melded with the expertise of hospice, a patient's passing is as calm as possible for patient, family, and facility staff."

The Coordination Process

Recognizing the need for special end-of-life care, Congrees added hospice to the Medicare benefit in 1982, authorizing the interdisciplinary hospice team to provide care in the home, nursing home, or other facilities. In 2002, the Centers for Medicare & Medicaid Services (CMS) issued its "Promising Practices for Implementing the Medicare Hospice Benefit for Nursing Home (NH) Residents" memo as a blueprint for coordination between nursing facilities and hospice. It suggests beginning with a written contract to define responsibilities for patient care.

The smallest details are important to a good working relationship. Gerhard gives this example: "For each facility, once we've talked about how to work together, we have a template, specific to that location, that gives the nitty-gritty details on how to operate within the facility--where to park, the code to the front door, where the phones are, to whom the hospice team member will report--be it the DON or the charge nurse or the administrator--and where documentation will be kept. It's a great tool to start off with, and we tailor it to the facility's needs and work closely with the facility to meet their requirements."

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A typical scenario of cooperation might begin in this way:

Mr. Doe is admitted to the nursing home with chronic obstructive pulmonary disease (COPD). He is regularly losing 10% of his body weight, his ability to engage in daily activities is declining, and the oxygenation of his body is decreasing.

The director of nursing calls hospice, with Mr. Doe's and his family's permission, or arranges for a care planning meeting with the family to which hospice is invited to begin a conversation. Hospice assesses the patient, consults with the family, and informs the nursing home whether Mr. Doe is or is not appropriate for acceptance. If appropriate, hospice then obtains a certification of hospice eligibility from the patient's primary physician and admits him into hospice care as a terminal patient with less than six months to live.

The nursing home and hospice continue to cooperate by collaborating on a care plan and delivery of services consistent with end-of-life philosophy. The CMS "Promising Practices" memo details how both parties can interact to smooth communication and determine the responsibilities appropriate to each party. "Tasks are individualized with each patient," explains Judy Wertz, executive director of AseraCare Philadelphia. "For example, the hospice RN case manager might visit the patient three times a week and an aide might come in on alternate days. The hospice care augments the daily care the facility provides."

The nursing home provides room and board and informs hospice of all changes in the patient's status; hospice manages the patient's care and medications, with input from the nursing home staff.

"Hospice can be a significant benefit to the staff of the nursing home," says Hammond. "It's not designed to replace that staff, but to augment their services and give them and the patients more support."

It's worked that way at Fort Sanders Sevier County Nursing Home in Sevierville, Tennessee. "Hospice is a valuable addition to the care my staff provides," says Director of Nursing Tesa Brown. "It's been very good for our facility."

At Beverly Healthcare Gettysburg, Executive Director Stacy Lowther also feels hospice is a benefit to the facility. "We love it," she says. "The extra one-on-one care makes a big difference for our terminal patients and provides comfort and support for families. Hospice has nurses, CNAs, religious counselors, and all sorts of volunteers who come in. They bring in pets and take patients for walks. It's a really wonderful addition to the care we give."

Because facility social workers are extremely busy, the hospice social worker can provide extra one-on-one help with specific interventions and therapies for the patient and the patient's family that are particular to end-of-life issues. For example, in some cases the patient and the family may differ over the need for a do-not-resuscitate order. "We would walk the patient and the family through those issues, so the patient can die the way he or she wishes." says Nate Lamkin, executive director of AseraCare Boston.

He gives an example of a son, uninvolved in his mother's care for years, who suddenly wants to take control from his sister, who has tended to mom lovingly and well. Hospice is there to work with the family to resolve such issues. "We do a lot of arbitrating and negotiating with the family," says Lamkin. "Part of allowing a patient to die in dignity and comfort is to ensure, as best we can, that any lingering issues can be taken care of."

According to a survey of family responses conducted by the National Hospice and Palliative Care Organization, families believed that the addition of hospice care in the nursing home improved their loved one's care. And the families' favorable ratings for symptom management increased from 64% without hospice to 90% with hospice.

Often patients and their families require services beyond the norm. "A patient of mine in Colorado was a fifth-generation rancher," recalls Abbott, now at the Akron Area AseraCare Hospice. "At the end, he was financially unable to feed his horses; for a rancher, that is a very big deal. Hospice intervened and arranged for a local riding group to deliver hay, greatly relieving the man's mind. That contributed to his ability to die with dignity."

Coordination between the nursing facility and hospice is particularly important because the two are separate, highly regulated entities, and must understand the potential impact on each other of even the smallest action. Take the case of a hospice worker who visits a patient and writes in her notes that the patient appeared sad. "That's appropriate for someone facing the end of life," says Gerhard. "However, the word 'sad' is a trigger at a nursing facility for a nightmare of psychological consulting--nursing home regulations on such issues can become very complicated. If care is not coordinated on both sides, we can trip over things like that." Had the hospice nurse consulted with the facility beforehand, she might have avoided the "trigger word" and written instead that the patient's mood "appears appropriate for terminal diagnosis."

Coordination includes education that is shared back and forth. "Hospice educates the nursing home through in-service programs, and the nursing home educates the hospice," says Gerhard. "We're a circle, or both sides of the coin."

Even bereavement services, available from hospice to the family for 13 months after the passing of their loved one, can be an additional benefit to the nursing home. "We had an incident where several patients in our dementia unit died around the same period," remembers Beverly's Lowther. "Hospice was able to come in and conduct a special celebration-of-life ceremony for our staff to help them deal with the grief. Right now we are working with hospice on co-sponsoring a grief support group for any of our families, residents, staff, or anyone else who has lost a loved one and needs support."

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Within the nursing home, hospice can provide three levels of care: (1) routine visits, (2) continuous, round-the-clock care for patients in crisis, and (3) in-patient general care for more acute patients in the nursing home or hospital. For families, hospice can also provide respite care, where the patient is admitted to a facility for a short stay if the family caregiver is ill, exhausted, or must be away.

"I can't think of any reason why anyone would not want hospice in their nursing home," says Lowther. "It's so much additional support, someone else to turn to. I don't see any downside. I know it's been very beneficial for our facility."

RELATED ARTICLE: Making Hospice Your Partner in the Continuum of Care

Many times, referring a patient to hospice and thereby acknowledging that a patient has reached the end of life is a difficult and painful decision for both the nursing home and the family. Polly Rehnwall, principal hospice consultant with Polly Rehnwall, Inc. (www.ask-polly.com), suggests making hospice part of the continuum of care by bringing hospice to the care-planning table as a partner before the patient is actually admitted to hospice.

"Hospice, with its expertise, can initiate the conversation with the family, and the burden doesn't have to fall on the nursing home," says Rehnwall. "The hospice representative can facilitate an introduction to the benefits of palliative and hospice care that will make the future admission of the patient to hospice a less traumatic event for the family."

She suggests using the following "automatic triggers" to signal when hospice should be included in a care plan meeting with the nursing home and family:

* The patient moves to a higher level of care-for example, when an Alzheimer's patient moves to a more secure unit or when someone's behavior changes and requires a change in care.

* The patient experiences other changes, such as weight loss, declining appetite, lack of mobility, etc., signaling significant decline.

* The family becomes concerned about changes in the patient's status.

* The patient's agitation has increased and is upsetting the family.

Prognostication of the remaining length of life must include both clinical and sociological judgments. CMS developed Local Coverage Determinations, based upon certain physical conditions of the patient, to aid in the decision, but no clear criteria exist to reliably predict the six-month time frame required for admission to hospice care. In fact, a study in 2000 by Nicholas Christakis, professor of medical sociology at Harvard Medical School, found that 63% of physicians overestimate the life expectancy of their terminal patients.

By encouraging early conversation about hospice services, the nursing home can prepare patients and their families for the decision and ensure that patients will receive needed care as they face the end of life.

RELATED ARTICLE: The Hospice Advantage for Its Partner Nursing Home

* Maintains census. A study based on new research published in the September 2004 issue of the Journal of Pain and Symptom Management, revealed that hospice patients live longer on the average than similar patients who did not choose hospice care.

* Enhances quality of life for terminally ill residents. A 2000 Government Accounting Office (now Government Accountability Office, GAO) study found hospice patients more likely to have regular assessment and treatment for shortness of breath and depression. They are also less likely to require restraints, tube or parenteral feedings, IM or IV meds, or therapy.

* Prevents unexpected discharge to the hospital. The GAO reported hospice patients less likely than nonhospice patients to be hospitalized in the last 30 days, 90 days, and 6 months of life.

* Effectively manages pain in residents facing end of life. The GAO study stated that hospice patients received superior pain assessment and treatment and were twice as likely to receive opioids for daily pain as nonhospice patients.

* Improves quality of care in the nursing home, as reflected in state surveys and accreditation.

* Eases burden on facility staff for end-of-life patient care.

* Supports the family in matching expectations with diagnostic reality.

* Provides bereavement support to the family and facility staff.

* Positions the nursing home as a community leader in relieving the suffering of the frail elderly.

RELATED ARTICLE: The Hospice Interdisciplinary Team 

Hospice services are provided by a team of caregivers who present a holistic approach--mind, body, spirit, and social factors--to end-of-life care. At least one member of the team is available to the patient and family 24/7. The team is composed of:

* Medical director -- a certified MD or Doctor of Osteopathy who has an interest in and knowledge of hospice care. Leads the hospice interdisciplinary team and oversees the care of all hospice patients, working with the patient's attending physician to coordinate a plan of care and pain medications.

* RN -- in charge of the patient; clinically, coordinates medication and treatment with the nursing home, the medical director, and the attending physician.

* Nurse's aide -- attends to the patient's personal care-bathing, personal hygiene, grooming.

* Social worker -- works to identify life and emotional needs of both the patient and the family and secures medical equipment, if necessary.

* Spiritual care coordinator -- addresses the patient's and family's mental and spiritual needs, including guilt, anger, fear, and loss, whether through an institutionalized religion or on a personal, nondenominational level.

* Volunteer coordinator -- helps with any tasks to make the patient's life or the family's life easier, such as relieving the family caregiver for a few hours, reading the paper for a patient who can't see, returning library books, picking up medicine--even, in one case, taking over the knitting of a sweater for the grandchild of a patient who could no longer hold the needles.

* Bereavement coordinator -- ensures that the family has support, if needed, for 13 months after the patient has passed away, through all the high-stress dates, such as Christmas, Thanksgiving, birthdays, wedding anniversaries, etc. Support may be as simple as a sending a card, leading a family project to build a memory box in honor of their loved one, or finding grief-support groups or other community resources.