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Partners in Patient Care
~armacy
&llospice
Partners in Patient Care By JULIA L. QUIGLEY, MARK A. QUIGLEY and ASHOK K. GUMBHIR
formal hospice care came into being with the establishment in 1967 of St. Christopher's Hospice in London by hospice pioneer Cicely Saunders. Her unique method of providing care for the dying attracted international attention, and in the early 1970s the hospice concept came to the United States with the establishment of the Connecticut Hospice, Inc., in New Haven. Since that time, through the efforts of the National Hospice Organization (NHO), the movement has grown tremendously. Currently, about 800 hospice programs are in various stages of development in this country, more than half of which were started since January 1980. NHO now has about 2,000 members; 36 states have hospice associations. The movement is trying to find a place in the mainstream of medical care in the United States, with a move toward accreditation and
Julia L. Quigley is a staff pharmacist at University Hospital, Kansas City, MO; Mark A. Quigley is a senior staff scientist at Marion Laboratories, Kansas City, MO; and Ashok K. Gumbhir is associate professor of pharmacy administration at the School of Pharmacy, University of Missouri-Kansas City. 12
third-party reimbursement. As the movement grows, so does pharmacist involvement (see story, p. 16). According to the NHO, a hospice program of care
... is a program of palliative and supportive services which provides physical, psychological, social, and spiritual care for dying persons and their families. Services are provided by a medically supervised interdisciplinary team of professionals and volunteers. Hospice services are available in both the home and an inpatient setting. Home care is provided on a parttime, intermittent, regularly scheduled, and around-the-clock on-call basis. Bereavement services are available to the family. Admission to a hospice program of care is on the basis of patient and family need. 1
Goals & Models The philosophy and definition of the hospice have left room for the development of a variety of models. Some hospice organizations offer only home care to their patients. Others offer home care in conjunction with inpatient care from a hospital or long-term care facility, or from a free-standing hospice facility. A fourth hospice model-which is not consistent with the philosophy and definitions of hospice care but nevertheless does exist-is that
'
Today pharmacists · seive hospice organizations in functions that range from dispensing and consulting to administrative and management roles. '
of care on an inpatient basis only.v Regardless of the differences in physical structure all hospices have three basic goals in common. 3A • Palliation of symptoms of the patient's disease. Since pain is one of the most debilitating and feared symptoms that accompany terminal illness, its control has been a primary concern of the hospice movement. Analgesics are given on a regular schedule rather than on an as-needed basis in an effort to prevent pain rather than alleviate it when it arises-. Pain and other symptoms such as nausea, vomiting, diarrhea, and constipation are treated with a carefully orchestrated drug regimen aimed at the greatest de- • gree of relief while allowing the patient to remain alert. 5 • Palliation of the psychological,
American Pharmacy Vol. NS22, No. 8, August 1982/420
spiritual and emotional stress encountered by the patient. The home care programs that are central to most hospices help to alleviate the feelings of rejection and abandonment that are common among terminally ill patients in hospitals and nursing homes. The inpatient facilities offered by some hospices try to create a familiar, home-like environment by inviting patients to bring their own furniture, clothes, pictures, and plants. Visiting hours are liberal, and children and even pets may be welcome. The ideal hospice has an inter~merican Pharmacy Vol. NS22, No. 8, August 1982/421
disciplinary team capable of aiding the patient in dealing with problems ranging from finances, to marriage, to religion. • Support for the family through the trauma of the illness, death and bereavement. Inpatient facilities offered by some hospices allow the family periods of reprieve from the constant care required by some patients. The drug regimens used by hospices are designed to keep the patient alert and functioning within the family unit for as long as possible. When death occurs, the caring community created by the hospice aids the family in coping with grief.
The Pharmacist's Role As the hospice concept has crystallized and become more publicized, it has attracted the attention of an increasing number of pharmacists. Today pharmacists serve hospice organizations in functions that range from dispensing and consulting to administrative and management roles. The philosophy, definition and goals of the hospice movement offer roles for the pharmacist. The most obvious role is in the compounding and dispensing of the drugs required for the palliation of symptoms. 13
Simply acquiring and having on hand the quantities of narcotics required by many terminal patients is an important service sought by most hospices. The compounding skill of the pharmacist is invaluable and is in demand. Many terminal patients have difficulty swallowing solid oral dosage forms and require oral liquids or rectal forms to be purchased or compounded. Who else but a pharmacist can be of help here? The pharmacist can also serve a vital role by screening patients and referring them to hospices. Community practitioners in particular are in a good position for this function because of their long-standing association with their patients. Pharmacists are often aware of the history of the patient's disease and treatment. In addition, they may be familiar with the relationships within the family, the patient's marital status, religious preference, health, and social habits. This places the pharmacist in an excellent position to evaluate the patient's needs in terms of hospice care. But to be of real help, the pharmacist has to know and explain to the patient the differences between hospice and hospital care. Drug selection and dosing are other areas in which pharmacists can make a contribution not only in terms of the individual patient, but also with regard to formulary development for the hospice. The orchestration of a drug regimen that can control pain, constipation, diarrhea, nausea, vomiting, and anorexia and at the same time keep the patient alert requires a thorough knowledge of pharmacology, adverse effects of drugs and drug interactions. This type of knowledge is the pharmacist's area of expertise . Hospice care offers unique opportunities for pharmacists to use their drug knowledge. Drug monitoring is also a service that pharmacists can provide to hospice programs. The patient profile systems used in many pharmacies provide opportunities for drug regimen review. With these records, the community pharmacist can easily monitor the efficacy and adverse effects of a drug regimen with each patient encounter. 14
'
... The hospice system can reach its goal more efficiently and economically if it receives continuous input from
pharmacists. . .
'
The pharmacist can also supervise the patient's selection and use of nonprescription products and direct the use of these products in conjunction with the prescription drug regimen. In addition, the astute practitioner can follow changes in attitudes and relationships within the patient's family, thereby monitoring the efficacy of the social, emotional and psychological support services of the hospice. Another role of the pharmacist is in the area of drug information and education. Patients with a terminal illness differ from other patients in that new aches and pains are often perceived as manifestations of the illness and an indication that the disease is spreading. Informing patients of possible drug side effects can greatly enhance their peace of mind and, thus, their emotional and psychological well-being. However, patients are not the only ones who can benefit from drug education. All persons involved in the hospice program of care-physicians, nurses, social workers, clergy, volunteers, and family members-need to understand the effects of the drug regimen to understand the reactions and responses of the patient. This insight will allow each of them to help the patient more effectively through their own areas of expertise. Administration is another area in which the pharmacist can be of service to hospice organizations. Those hospices that dispense medications must develop and enforce policies and procedures for their storage and handling. Pharmacists not only have an intimate knowledge of the storage requirements for the various drugs and dosage forms, but they
also know the state and federal laws governing the handling of prescription medications. This last point is especially important due to the quantity of controlled substances used by hospice patients.
Pharmacist Involvement Although the standards and principles of the NHO are based on the "blending of professional and nonprofessional services" and an "interdisciplinary team," it seems that many pharmacists have not taken full advantage of the opportunities offered by hospices. A recent study by Berry, et al., found that pharmacists were affiliated with 77% of the responding hospice organizations; 68% of these pharmacists were described as consultants. But only 46% of the hospice directors considered them to be part of the "interdisciplinary team." Other data presented by Berry suggest that the previously discussed roles of the pharmacist are being fulfilled only to a limited degree. Drug information to the hospice staff seems to be the area of greatest activity, with 95 % of the hospices receiving drug information from pharmacists; 70% received inservice education and 51% received patient drug information. 2 In the same study, a moderate degree of involvement was seen in administrative roles, with 41 % receiving help from pharmacists in the development of drug policies and procedures. In hospices with guidelines for pain evaluation, the pharmacist helped in designing them 33% of the time. Medication profiles were kept by 30% of the pharmacists in the responding hospices, and home visits were made by only 5% of the pharmacists. · Though the dispensing role of the pharmacist was not addressed in Berry's study, it has been suggested by other authors as an area in which increased pharmacist participation is greatly needed. Many pharmacists are apprehensive about handling the large quantities of narcotics required by hospice patients for two reasons: • Fear of investigation by the DEA; • Fear of robbery. American Pharmacy Vol. NS22, No. 8, August 1982/422
Bringing Hospices into the Mainstreant The National Hospice Organization (NHO), which coordinates hospice activity nationally, is currently active on several fronts to bring hospice care into the mainstream of American health care. • NHO is supporting a bill now before Congress to provide coverage for hospice care under the Medicaid and Medicare programs (see box, p. 19); • The organization is backing a bill, which has been passed by the Senate, to make November 7-14, 1982 "National Hospice Week"; • The Joint Commission on the Accreditation of Hospitals is working with NHO to develop an accreditation program for hospice care. In 1981, NHO revised its "standards" document for hospice programs. In it, the organization defined its philosophy of hospice care:
Hospice affirms life. Hospice exists to provide support and care for persons in the last phases of incurable disease so that they might live as fully and comfortably as possible. Hospice recognizes dying as a normal process whether or not resulting from disease. Hospice neither hastens nor postpones death. Hospice exists in the, hope and belief that, through appropriate care and the promotion of a caring community sensitive to their needs, patients and families may be free to attain a degree of mental and spiritual preparation for death that is satisfactory to them. The document also contains NHO's 17 standards for a hospice program of care:. 1. The hospice program complies with applicable local, state and federal law and regulation governing the organization and delivery of health care to patients and families. 2. The hospice program provides a continuum of inpatient and home care services through an integrated administrative structure. 3. The home care services are available 24 hours a day, 7 days a week. 4. The patient/family is the unit of care.
It is suggested that contact with the DEA and local law enforcement agencies may prove helpful. Further research needs to be carried out to evolve an optimal solution to the problems of drug distribution in hospices. Gaining Recognition Hospice programs provide a mechanism for the patient and the patient's family to accept death with dignity and in peace. The rational use of drug products helps to achieve this goal by providing for the patient's comfort. It is only logAmerican Pharmacy Vol. NS22, No. 8, August 1982/423
5. The hospice program has admission criteria and procedures that reflect: • The patient/family's desire and need for service; • Physician participation; • Diagnosis and prognosis. 6. The hospice program seeks to identify, teach, coordinate, and supervise persons to give care to patients who do not have a family member available. 7. The hospice program acknowledges that each patient/family has its own beliefs and/or value system and is respectful of them. 8. Hospice care consists of a blending of professional and nonprofessional services, provided by an interdisciplinary team, including a medical director. 9. Staff support is an integral part of the hospice program. 10. Inservice training and continuing education are offered on a regular basis. 11. The goal of hospice care is to provide symptom control through appropriate palliative therapies. 12. Symptom control includes assessing and responding to the physical, emotional, social, and spiritual needs of the patient/family. 13. The hospice program provides bereavement services to survivors for a period of at least one year. 14. There will be a quality assurance program that includes • Evaluation of services; • Regular chart audits; • Organizational review. 15. The hospice program maintains accurate and current integrated records on all patient/families. 16. The hospice [physical plant] complies with all applicable state and federal regulations. 17. The hospice inpatient unit provides space for • Patient/family privacy; • Visitation and viewing; • Food preparation by the family.
ical that the hospice system of care can reach its goal more efficiently and economically if it receives continuous input from pharmacists, the experts in the area of drug use. Now is an ideal time, while the standards and structure of hospice care are still being shaped, for pharmacy to become active in defining its role. Interest and involvement by nationat state and local pharmacy organizations can help. But most importantly, the initiative and creativity of individuals is required for pharmacists to gain membership on the interdisciplin-
ary team. With the achievement of this goal the hospice will acquire a valuable resource for the development of its services, and pharmacy practice will gain additional recognition of the important contributions pharmacists can make to patient care. o References 1.
" Hospice Principles and Standards," National Hospice Organization, McLean, VA, 1981.
2.
] .1. Berry, et al. , American journal of Hospital Phar17U1cy, 38,
3.
C. Saunders, American journal of Medicine, 65 (November,
1010 (1981). 1978). 4. M. Eastman, American Pharmacy, NS18, 658 (1978). 5. C.K. Gerson, American Pharmacy, NS20, 323 (1980).
15
&llospice
Partners in Patient Care By JULIA L. QUIGLEY, MARK A. QUIGLEY and ASHOK K. GUMBHIR
formal hospice care came into being with the establishment in 1967 of St. Christopher's Hospice in London by hospice pioneer Cicely Saunders. Her unique method of providing care for the dying attracted international attention, and in the early 1970s the hospice concept came to the United States with the establishment of the Connecticut Hospice, Inc., in New Haven. Since that time, through the efforts of the National Hospice Organization (NHO), the movement has grown tremendously. Currently, about 800 hospice programs are in various stages of development in this country, more than half of which were started since January 1980. NHO now has about 2,000 members; 36 states have hospice associations. The movement is trying to find a place in the mainstream of medical care in the United States, with a move toward accreditation and
Julia L. Quigley is a staff pharmacist at University Hospital, Kansas City, MO; Mark A. Quigley is a senior staff scientist at Marion Laboratories, Kansas City, MO; and Ashok K. Gumbhir is associate professor of pharmacy administration at the School of Pharmacy, University of Missouri-Kansas City. 12
third-party reimbursement. As the movement grows, so does pharmacist involvement (see story, p. 16). According to the NHO, a hospice program of care
... is a program of palliative and supportive services which provides physical, psychological, social, and spiritual care for dying persons and their families. Services are provided by a medically supervised interdisciplinary team of professionals and volunteers. Hospice services are available in both the home and an inpatient setting. Home care is provided on a parttime, intermittent, regularly scheduled, and around-the-clock on-call basis. Bereavement services are available to the family. Admission to a hospice program of care is on the basis of patient and family need. 1
Goals & Models The philosophy and definition of the hospice have left room for the development of a variety of models. Some hospice organizations offer only home care to their patients. Others offer home care in conjunction with inpatient care from a hospital or long-term care facility, or from a free-standing hospice facility. A fourth hospice model-which is not consistent with the philosophy and definitions of hospice care but nevertheless does exist-is that
'
Today pharmacists · seive hospice organizations in functions that range from dispensing and consulting to administrative and management roles. '
of care on an inpatient basis only.v Regardless of the differences in physical structure all hospices have three basic goals in common. 3A • Palliation of symptoms of the patient's disease. Since pain is one of the most debilitating and feared symptoms that accompany terminal illness, its control has been a primary concern of the hospice movement. Analgesics are given on a regular schedule rather than on an as-needed basis in an effort to prevent pain rather than alleviate it when it arises-. Pain and other symptoms such as nausea, vomiting, diarrhea, and constipation are treated with a carefully orchestrated drug regimen aimed at the greatest de- • gree of relief while allowing the patient to remain alert. 5 • Palliation of the psychological,
American Pharmacy Vol. NS22, No. 8, August 1982/420
spiritual and emotional stress encountered by the patient. The home care programs that are central to most hospices help to alleviate the feelings of rejection and abandonment that are common among terminally ill patients in hospitals and nursing homes. The inpatient facilities offered by some hospices try to create a familiar, home-like environment by inviting patients to bring their own furniture, clothes, pictures, and plants. Visiting hours are liberal, and children and even pets may be welcome. The ideal hospice has an inter~merican Pharmacy Vol. NS22, No. 8, August 1982/421
disciplinary team capable of aiding the patient in dealing with problems ranging from finances, to marriage, to religion. • Support for the family through the trauma of the illness, death and bereavement. Inpatient facilities offered by some hospices allow the family periods of reprieve from the constant care required by some patients. The drug regimens used by hospices are designed to keep the patient alert and functioning within the family unit for as long as possible. When death occurs, the caring community created by the hospice aids the family in coping with grief.
The Pharmacist's Role As the hospice concept has crystallized and become more publicized, it has attracted the attention of an increasing number of pharmacists. Today pharmacists serve hospice organizations in functions that range from dispensing and consulting to administrative and management roles. The philosophy, definition and goals of the hospice movement offer roles for the pharmacist. The most obvious role is in the compounding and dispensing of the drugs required for the palliation of symptoms. 13
Simply acquiring and having on hand the quantities of narcotics required by many terminal patients is an important service sought by most hospices. The compounding skill of the pharmacist is invaluable and is in demand. Many terminal patients have difficulty swallowing solid oral dosage forms and require oral liquids or rectal forms to be purchased or compounded. Who else but a pharmacist can be of help here? The pharmacist can also serve a vital role by screening patients and referring them to hospices. Community practitioners in particular are in a good position for this function because of their long-standing association with their patients. Pharmacists are often aware of the history of the patient's disease and treatment. In addition, they may be familiar with the relationships within the family, the patient's marital status, religious preference, health, and social habits. This places the pharmacist in an excellent position to evaluate the patient's needs in terms of hospice care. But to be of real help, the pharmacist has to know and explain to the patient the differences between hospice and hospital care. Drug selection and dosing are other areas in which pharmacists can make a contribution not only in terms of the individual patient, but also with regard to formulary development for the hospice. The orchestration of a drug regimen that can control pain, constipation, diarrhea, nausea, vomiting, and anorexia and at the same time keep the patient alert requires a thorough knowledge of pharmacology, adverse effects of drugs and drug interactions. This type of knowledge is the pharmacist's area of expertise . Hospice care offers unique opportunities for pharmacists to use their drug knowledge. Drug monitoring is also a service that pharmacists can provide to hospice programs. The patient profile systems used in many pharmacies provide opportunities for drug regimen review. With these records, the community pharmacist can easily monitor the efficacy and adverse effects of a drug regimen with each patient encounter. 14
'
... The hospice system can reach its goal more efficiently and economically if it receives continuous input from
pharmacists. . .
'
The pharmacist can also supervise the patient's selection and use of nonprescription products and direct the use of these products in conjunction with the prescription drug regimen. In addition, the astute practitioner can follow changes in attitudes and relationships within the patient's family, thereby monitoring the efficacy of the social, emotional and psychological support services of the hospice. Another role of the pharmacist is in the area of drug information and education. Patients with a terminal illness differ from other patients in that new aches and pains are often perceived as manifestations of the illness and an indication that the disease is spreading. Informing patients of possible drug side effects can greatly enhance their peace of mind and, thus, their emotional and psychological well-being. However, patients are not the only ones who can benefit from drug education. All persons involved in the hospice program of care-physicians, nurses, social workers, clergy, volunteers, and family members-need to understand the effects of the drug regimen to understand the reactions and responses of the patient. This insight will allow each of them to help the patient more effectively through their own areas of expertise. Administration is another area in which the pharmacist can be of service to hospice organizations. Those hospices that dispense medications must develop and enforce policies and procedures for their storage and handling. Pharmacists not only have an intimate knowledge of the storage requirements for the various drugs and dosage forms, but they
also know the state and federal laws governing the handling of prescription medications. This last point is especially important due to the quantity of controlled substances used by hospice patients.
Pharmacist Involvement Although the standards and principles of the NHO are based on the "blending of professional and nonprofessional services" and an "interdisciplinary team," it seems that many pharmacists have not taken full advantage of the opportunities offered by hospices. A recent study by Berry, et al., found that pharmacists were affiliated with 77% of the responding hospice organizations; 68% of these pharmacists were described as consultants. But only 46% of the hospice directors considered them to be part of the "interdisciplinary team." Other data presented by Berry suggest that the previously discussed roles of the pharmacist are being fulfilled only to a limited degree. Drug information to the hospice staff seems to be the area of greatest activity, with 95 % of the hospices receiving drug information from pharmacists; 70% received inservice education and 51% received patient drug information. 2 In the same study, a moderate degree of involvement was seen in administrative roles, with 41 % receiving help from pharmacists in the development of drug policies and procedures. In hospices with guidelines for pain evaluation, the pharmacist helped in designing them 33% of the time. Medication profiles were kept by 30% of the pharmacists in the responding hospices, and home visits were made by only 5% of the pharmacists. · Though the dispensing role of the pharmacist was not addressed in Berry's study, it has been suggested by other authors as an area in which increased pharmacist participation is greatly needed. Many pharmacists are apprehensive about handling the large quantities of narcotics required by hospice patients for two reasons: • Fear of investigation by the DEA; • Fear of robbery. American Pharmacy Vol. NS22, No. 8, August 1982/422
Bringing Hospices into the Mainstreant The National Hospice Organization (NHO), which coordinates hospice activity nationally, is currently active on several fronts to bring hospice care into the mainstream of American health care. • NHO is supporting a bill now before Congress to provide coverage for hospice care under the Medicaid and Medicare programs (see box, p. 19); • The organization is backing a bill, which has been passed by the Senate, to make November 7-14, 1982 "National Hospice Week"; • The Joint Commission on the Accreditation of Hospitals is working with NHO to develop an accreditation program for hospice care. In 1981, NHO revised its "standards" document for hospice programs. In it, the organization defined its philosophy of hospice care:
Hospice affirms life. Hospice exists to provide support and care for persons in the last phases of incurable disease so that they might live as fully and comfortably as possible. Hospice recognizes dying as a normal process whether or not resulting from disease. Hospice neither hastens nor postpones death. Hospice exists in the, hope and belief that, through appropriate care and the promotion of a caring community sensitive to their needs, patients and families may be free to attain a degree of mental and spiritual preparation for death that is satisfactory to them. The document also contains NHO's 17 standards for a hospice program of care:. 1. The hospice program complies with applicable local, state and federal law and regulation governing the organization and delivery of health care to patients and families. 2. The hospice program provides a continuum of inpatient and home care services through an integrated administrative structure. 3. The home care services are available 24 hours a day, 7 days a week. 4. The patient/family is the unit of care.
It is suggested that contact with the DEA and local law enforcement agencies may prove helpful. Further research needs to be carried out to evolve an optimal solution to the problems of drug distribution in hospices. Gaining Recognition Hospice programs provide a mechanism for the patient and the patient's family to accept death with dignity and in peace. The rational use of drug products helps to achieve this goal by providing for the patient's comfort. It is only logAmerican Pharmacy Vol. NS22, No. 8, August 1982/423
5. The hospice program has admission criteria and procedures that reflect: • The patient/family's desire and need for service; • Physician participation; • Diagnosis and prognosis. 6. The hospice program seeks to identify, teach, coordinate, and supervise persons to give care to patients who do not have a family member available. 7. The hospice program acknowledges that each patient/family has its own beliefs and/or value system and is respectful of them. 8. Hospice care consists of a blending of professional and nonprofessional services, provided by an interdisciplinary team, including a medical director. 9. Staff support is an integral part of the hospice program. 10. Inservice training and continuing education are offered on a regular basis. 11. The goal of hospice care is to provide symptom control through appropriate palliative therapies. 12. Symptom control includes assessing and responding to the physical, emotional, social, and spiritual needs of the patient/family. 13. The hospice program provides bereavement services to survivors for a period of at least one year. 14. There will be a quality assurance program that includes • Evaluation of services; • Regular chart audits; • Organizational review. 15. The hospice program maintains accurate and current integrated records on all patient/families. 16. The hospice [physical plant] complies with all applicable state and federal regulations. 17. The hospice inpatient unit provides space for • Patient/family privacy; • Visitation and viewing; • Food preparation by the family.
ical that the hospice system of care can reach its goal more efficiently and economically if it receives continuous input from pharmacists, the experts in the area of drug use. Now is an ideal time, while the standards and structure of hospice care are still being shaped, for pharmacy to become active in defining its role. Interest and involvement by nationat state and local pharmacy organizations can help. But most importantly, the initiative and creativity of individuals is required for pharmacists to gain membership on the interdisciplin-
ary team. With the achievement of this goal the hospice will acquire a valuable resource for the development of its services, and pharmacy practice will gain additional recognition of the important contributions pharmacists can make to patient care. o References 1.
" Hospice Principles and Standards," National Hospice Organization, McLean, VA, 1981.
2.
] .1. Berry, et al. , American journal of Hospital Phar17U1cy, 38,
3.
C. Saunders, American journal of Medicine, 65 (November,
1010 (1981). 1978). 4. M. Eastman, American Pharmacy, NS18, 658 (1978). 5. C.K. Gerson, American Pharmacy, NS20, 323 (1980).
15