Table 2

 Service descriptions and evaluation evidence

Ref/gradeSetting and country/disease stage eligibility criteriaService descriptionDesign and sample sizeOutcomesFindings
Hospice at home/home palliative care
Tramarin 199271/IIBHome palliative care assistance, Vicenza Italy/terminal AIDS or heavy motor or vision deficitMultidisciplinary home care assistance (HCA) consisting of nurses, family doctor, psychologist, volunteers, social workers and infectious disease specialists. Aimed to improve quality of life through principles of palliative care and limiting inpatient service use6 month prospective comparison of n = 10 patients accessing HCA and hospital care to n = 32 with similar disease staging accessing only hospital careQuality of wellbeing scale calculated weeklyQuality of wellbeing data not presented in numeric form but graph suggests no significant difference. Fewer hospital inpatient days reported for those accessing home care (n = 7, 127 days) than comparison group (n = 35, 866 days) and costs lower for those with advanced disease accessing home care ($17 237 v $27 764)
Koffman 199625/IIICHome based hospice, London UK/advanced HIV/AIDS24 hour palliative nursing, night sitting, consultants in palliative medicineSingle group longitudinal; from entry to last week of life/discharge. N = 36STAS quality of life (QoL): pain and symptom control, patient and family anxiety, patient and family insight, patient/family/professional communicationAll items showed trend to improvement, with two reaching statistical significance: symptom control (from 6% to 33% reporting it as no problem, p = 0.0009) and family insight (from 33% to 67% reporting as no problem p = 0.0006)
Butters 199528/IIIC2 hospital and home care, London UK/HIV/AIDS (85% diagnosed AIDS)Multidisciplinary advice and support in hospital and at home. (A) Home support team (HST)—nursing staff, general practitioner, welfare rights adviser and occupational therapist. Early intervention inc. asymptomatic HIV. (B) Community care team (CCT)—consultant, nurse specialists, social worker, dietician, occupational therapist, registrar. Late/end stage careProspective, multicentre longitudinal from referral to death/discharge. N = 234STAS: severity and nature of patient problems (pain and symptom control, anxiety)Significant changes from referral to 6 weeks before death. (A) Worsening symptom control (from 22% to 46% rated severe, p = 0.04)). (B) Improving predictability (p = 0.000002), spiritual (p = 0.005), patient/family communication (p = 0.02), patient insight (p = 0.04)
Butters 199226/IIIC2 community teams, London UK/HIV/AIDS (84% diagnosed AIDS)Multidisciplinary palliative family and patient support: symptom control, counselling, bereavement follow up, education and advice, 24 hour on call nursing and terminal care, clinical liaison. Coordination and support rather than care management2 centre longitudinal, entry to last week of life/discharge. N = 140STAS QoL: pain and symptom control, anxiety, practical aidSignificant improvements after 2 weeks from referral: pain (from 51% at referral to 66% after 2 weeks rated no problem, p = 0.01), symptom control (4% to 16% p = 0.05) and patient anxiety (7% to 16% p = 0.05)
Significant changes from referral to last week before death: Pain no problem 51% to 66% p = 0.0001, symptom control 4% to 24% p = 0.01, anxiety 7% to 47% p = 0.00005. However, 33% reported symptoms as severe in last week of care
Kimball 199629/IIICHome hospice care USA/AIDS No service description Retrospective cohort chart review, last 2 weeks of life. N = 185Pharmacological management of pain and discomfortThose reporting pain and discomfort rose from 54% early in 2 weeks before death to 68% in final 48 hours. Over 2 weeks 88% received opioid analgesic, with 62% of these experiencing relief thereafter
Butters 199324/IIICCommunity support team, London UK/late stage HIV/AIDS illness/uncontrolled pain/symptoms, or need psychological, spiritual or home supportMultidisciplinary team (2 doctors, 3 clinical nurse specialists, dietician, occupational therapist) to increase choice of place for care/death. Symptom control, patient, and carer counselling, 24 hour on call, education, and advice on diagnosis, nursing, and terminal care. Coordination and support of hospital and home care, rather than assume responsibility for careSingle group longitudinal, 3–4 weeks from referral (N = 19/125 eligible) and 4–6 weeks later (N = 6)9 STAS items and satisfaction in final weeks of life. Score range from 0 = no problem to 4 = severe problemsCare rated as good/excellent by all. Communication with clinical staff outside the team rated as poor. 2–4 weeks from entering care mean scores above 2 with symptom control, pain control and patient anxiety. 18/19 reported problems with symptom control. Few patients reported severe ratings in final weeks: none for pain, 3 for symptom control, one for patient anxiety. Favourable comments on the role of “talking” care (n = 18/19) and with patients’ control over care (n = 15/19).
Crowe 200172/–Home based hospice, South Africa/none specifiedNurses and trained rural community carers, home visiting, physical and medical care, counselling, and emotional/spiritual support, social workers. In-patient care for those with greatest need. Orphan support No evaluation
Martin 198873/–Home Care and Hospice program, San Francisco USA/none specified Team supports both home care and 15 bed residential care, mainly HIV/AIDS. Physician consultant advises patients’ primary physician No evaluation
Martin 198674/–Home care and hospice program, San Francisco USA/AIDSMultidisciplinary: physical and occupational therapists, attendants personal care, daily living activities), nurses (symptom control) social workers (psychosocial care), volunteers (practical support), rehabilitation therapists (reducing discomfort, improving environment), consultants (care planning, advocacy, and education) No evaluation
Inpatient hospice
Gibbs 199727/IIICGeneric hospice, London UK/advanced HIV diseaseTerminal care. No service descriptionRetrospective longitudinal. N = 26Symptom controlWeakness (77%), immobility (73%), and weight loss (62%) most severe symptoms at admission, did not improve. Severe pain for 31% at admission, reduced to mild/none for all but 1 patient. Significant improvement of other symptoms (nausea, vomiting, diarrhoea, constipation, dyspnoea, confusion: not quantified). No symptoms initially rated absent or mild worsened during stay
Murie 199275/–AIDS hospice, Edinburgh UK/AIDS: priority given to terminal patientsRespite, convalescence, Nurses and trained rural community carand terminal care. Medical nursing and paramedical staff. 12 single plus 4 double rooms. Emphasis on liaison with community drug health and psychology services. Emotional support, art, and expressive classes, complementary therapy. Family care and inclusion No evaluation
Ley 198876/–AIDS hospice, Toronto Canada/terminal AIDSTerminal care 13 beds (including 1 respite bed). Complementary therapies, clinical staff, social worker, psychosocial, and spiritual care. Palliative approach seen as more active than for traditional cancer care. Counselling for family/carers/friends/patients. Outreach support for those waiting for admission No evaluation
Moss 198877/–AIDS inpatient hospice, London UK/AIDSRehabilitation, convalescence, terminal care. Patient centred multidisciplinary holistic care. All care in consultation with patient, aims to improve QoL through symptom control and active treatment where appropriate. Spiritual care and counselling. 9 beds, plus home support. Physiotherapy and occupational therapy; no diagnostic facilities or resuscitation. CNS, nurses, doctors, counsellor, social worker, chaplain, housekeeper. Family facilities No evaluation
Hospital palliative care
Vincent 200023/IIBTwo models: (A) Advanced AIDS care in hospital Infectious and tropical disease unit. (B) Hospital palliative care unit, Paris and Villejuif France/(A) Biomedical admissions. (B) “Qualitative” admission criteria in PCU (eg, suffering of patient/family or carer exhaustion)Care not described, although (A) “Not devoted to palliative care” and (B) “Primary objective of palliation”Prospective multidisciplinary comparing methods of care between ITDU (N = 77) and PCU (N = 10). Symptom self assessment for only 52/68 patients because of patient inability/unwillingnessDrugs administered, procedures, and investigations symptoms assessed weekly. Comparison of different therapeutic objectivesSample sizes too different for statistical analysis. ITDU v PCU per hospitalisation: antiretrovirals prescribed in 34% v 10%; treatment of curable infections ceased in 23% v 80%; antimicrobial agents in 60% v 0%; Step 2 and step 3 analgesics in 57% and 18% v 20% and 80%; Similar frequency of pain (46% and 48%) depression assessed in 55% of ITDU and 7% in PCU
Lucas 199730/IIICInpatient palliative care unit, New South Wales Australia/AIDS8 AIDS designated beds in 35 bed palliative care unit in public hospital. Twice weekly visits by pharmacist specialising in AIDS palliative care: assesses appropriateness of prescribing, advises on adverse reactions, interactions, contraindications and therapeutic alternatives, provides information to staff and patients, applies for restricted drugs, updates, case notes.Retrospective rating of weekly consultations with specialist palliative AIDS pharmacist advice over 6 months. Impact independently evaluated on 6 point scale by three clinicians. N = 11Clinical significance of advice given by palliative AIDS pharmacistNot quantified. High compliance with recommendations. Most common interventions: rationalisation of inappropriate regimens; warnings about drug interactions. General conclusion: among AIDS patients, palliative care is enhanced with availability of pharmacist with specialist knowledge of AIDS therapeutics.
Cumming 199378/–Non-HIV hospital palliative care unit, Vancouver Canada/prognosis <1 year, 2/3 AIDSRespite beds in generic hospital palliative care unit. Goals of pain and symptom reassessment, investigation, care for caregiver No evaluation
Singh 199179/–Dedicated hospital ward, London UK/symptomatic HIV/AIDSDedicated 17 bed hospital ward for HIV/AIDS. Provides both continuing active treatment (34%) and no active treatment (66%) No evaluation
Home based care
Nickel 199622/1BHome care case management, Ohio, USA/AIDSCare monitoring and direction by comprehensive assessment and care planning and review by multidisciplinary team: nursing staff, doctors, social worker, psychiatrist, nutritionist, clergy, pharmacist, and dentist. Services available on callRandomised controlled trial (RCT). N = 57Quality of Well Being Scale, Physical Self Maintenance Scale, Functional Activities QuestionnaireCase managed group showed observable advantage in quality of wellbeing and survival (not quantified), but did not reach statistical significance
Foley 199531/IVHome care, New York USA/symptomatic HIV/AIDSEnhance QoL, providing home nursing and case management, dietetics, rehabilitation, equipment, social work, respite, mental health services, laboratory and pharmacy servicesCross sectional. N = 52Patient satisfaction (excellent = 1, poor = 5)Rated quality of nursing care as excellent/very good (mean1.6), thought had more control over hospital admissions (mean 2.2), vast majority (67%) reported their health status remained unchanged following admission to the service. High value and satisfaction placed on contact and communication (81%)
McCann 199136/qualitativeHome support team, London, UK/HIV/AIDSHospital based specialist home support team, parallels cancer support, to allow home care and to release hospital beds for acute care. Coordinate and provide continuous care between hospital and community teams through assessment, communication, and care planningQualitative structured interview. N = 265Elements of support and satisfactionThose who had service contact more likely to have AIDS, advice and support main services provided by staff. Nursing care described as very good/excellent by 86%, 60% report receiving much reassurance and support
WHO 199280/qualitative6 different home care programmes, Uganda and Zambia/HIV/AIDS(1) Home based patient and family care linked to inpatient and outpatient AIDS unit: medical nursing psychological and pastoral care, terminal care. (2) Home care team working through hospital and community clinics: medication, counselling and information, terminal care. Volunteers also provide care. (3) and (4) Home patient and family care: counselling, information, clinical care. Medical and herbal symptom control. (5) Terminal emphasis, provides continuity of care, reduce inpatient bed pressure. Linked to inpatient and outpatient services. Nursing and pastoral care. (6) Relief of inpatient bed pressure, care for those unable to attend hospital, linked to inpatient, outpatient and pastoral careQualitative: staff (n = 56), patient/carer focus (n = 16), direct observation (n = 64), methods not stated“Effectiveness”“Home care improved quality of life; home care is equivalent or better than hospital care” no supporting evidence provided
Bunch 199835/qualitativeHome hospital, Oslo, Norway/HIV/AIDSHome nursing care for hospitalised patients. Nursing care plans devisedPost hoc qualitative, thematic analysis. N = 5/64Patient satisfactionHospital and other agency link valued, independence and feeling physically less unwell. Disadvantages include anxiety, fear, and mastering medical equipment
Uys 200132 and 200233/qualitativeIntegrated home based community care, under served areas. South Africa/HIV/AIDS, including asymptomaticLinks community caregivers, patients and families, hospices, clinics and hospitals. Community caregivers provide hygiene care, wound care, symptom control, counselling, psychosocial support, welfareRetrospective utilisation focused evaluation, focus groups. N = 3/36 participants were patients. Methods not reportedSatisfaction with, and impact of, model on patientsPatients valued information giving, support, welfare assistance, specialist referrals and access to care, better management of OIs.
As above Qualitative patient data reported but methods and N not stated.Not statedPatients reported enhanced human dignity
Moons 199434/qualitativeHome care, Rotterdam, Netherlands/AIDS, hospital outpatients: CDC classification IV B, C, or D, Karnofsky = 60 or less. Also permanent address, telephone, bathroom an informal caregiver and GP cooperationAim to: improve QoL by reducing hospital visits. Home care coordinated following joint hospital and community nurse assessment. Providing technical, medical and nursing care, health education, and psychosocial support to patients and caregiversQualitative interviews with patients during receipt of care. Methods not reported. N = 9/13Patient experience of the servicePatients valued being able to avoid hospital visits and remain at home; less disturbance of their daily routine; emotional support received; high quality of care. However, lack of evening and weekend access to the service was a problem. Poor communication with GP
Cherin 199881 and 200082/–Medical and surgical home care, Los Angeles USA/AIDS patients in “final phase of terminal trajectory”Nurse and social work trans-professional team, employing both curative and palliative care, with training in physiological and psychological aspects of AIDS care. Emphasis on team case management No evaluation
Borgia 200239/–Home care, Rome Italy/AIDSMedical and nursing care, assistance with domestic needs and psychological/social support for patients and family No evaluation
Schietinger 199383/–Home care, rural Rwanda/AIDSFamily caregivers provide basic nursing: pain control, hygiene, hydration, and nutrition No evaluation
Hospital inpatient/outpatient care
Gibb 199784/–Hospital outpatient family clinic, London UK/All HIV diseaseSpecialist paediatric and adult medical, counselling, and terminal care: paediatricians, nurse counsellor, psychologist, social worker, physiotherapist, genitourinary physician and health adviser, paediatric dietician, and paediatric pharmacist. Shared care and coordination with local hospice and terminal cancer symptom care team No evaluation
Specialist dedicated AIDS unit
Noe 199385/–Nursing facility, Seattle USA/end stage AIDS35 subacute beds. Day care (60 clients). Intervention not described No evaluation
Selwyn 200086/–Long term care facility, New Haven, USA/late stage HIV/AIDS, 88% AIDS (stage C3)30 bed AIDS designated unit. Nurses, nurse practitioners, interns, psychiatrist, social worker, drug counsellor, recreational therapist, dietician, physiotherapist. Minimally invasive diagnostic tests, and procedures performed on site. Primary reasons for admission: needs 24 hour medical care; completion of acute medical treatment; terminal care No evaluation