Table 4 Summary of the Key Articles that describe the Models of Care
Author(s), Year, Country, Location | Types of Services | Study Population | Methodology | Models | Critical Elements | Outcomes/ Indicators of Success | Daly’s Hierarchy of Evidence |
|---|---|---|---|---|---|---|---|
Braun et al. (2012), USA (mainly rural) | Multiple settings but mainly linking communities and hospitals | Poor and underserved communities including American Indians and Alaska Natives (AI/ANs) | Program analysis using the ‘continuum of cancer care’ and the ‘five A’s of quality care’ frameworks | Patient Navigation (PN) Model | • Early introduction to PC • Focus on the whole cancer continuum • Personal features of patient navigators, such as, capacity to learn about cancer, track cancer services, communicate with professionals, know when and where to refer clients for help, cultural brokers or interpreters for their clients. • Training and orientation to navigators • Continuing education • Flexible approach | Cancer patients have a better quality of life and longer survival when they receive PC concurrently with treatment Cancer PN programs should collect data to track key PN outcomes | Level III |
Byock et al. (2006), USA (urban and rural) | Multiple settings, including nursing homes, dialysis clinics, inner city public health and safety net systems and prisons | AI/AN African Americans Medically underserved populations in the city Paediatric patients Mental health patients | Mixed methods evaluation of 22 different projects | Integrated Health Service Delivery (IHSD) | • Community needs assessmentStable institution • Clinician endorsement • Peer-to-peer teaching. • Partnership between the funding bodies and administrators • Successful partnerships, co-ownership and collaboration among academic medical centre, local providers and the community [rural] • Successful projects established working partnerships with local city, country or federal programs [city settings] • Patients and families accepted the delivery model • Established Quality Improvement • Techniques and Routine data collection • PC embedded in cancer care • Creative, careful realignment of existing health system resources • Availability of outpatient PC • Community outreach to raise awareness • On-the-job training • Formal psycho-social and spiritual care QoL assessment tools used to uncover domains of patient or family-reported QoL | Evaluation results are positive: Practicality: Feasibility and Acceptability - 20 of 22 projects were sustained beyond the conclusion of the Grant project - Acceptable to clinicians, administrations, payers, patients and families Access: Availability and use of services - Days for palliative care patients enhanced than national average- Developed partnership with local hospices and with local public health systems to reach to ‘hard-to-reach’ people - Advance Care Planning - Over half of the projects provided education to patients and families Quality: standards, protocols and quality of care - Symptom protocols measured - Regular data collection proved difficult - Good outpatient PC prevented or managed crises that would otherwise require hospitalisation Financial impact: Health care utilization and costs - Costs did not increase - Total health care costs were moderately reduced - Creative, careful realignment of existing health system resources can improve service delivery Ongoing evaluations Project led culture change within the organisations Interest increased in pain management and the social needs of all patients | Level III |
DeCourtney et al. (2003), USA (remote) | Decentralised home visiting service | Alaskan Native Villages | Qual Focus groups | Decentralised model | • Community input and engagement • Education and training for Community Health Aides/Practitioners • Multiple referral pathways onto program • Home Health Nurse visits patient • Volunteer coordinator determines support needed • Doctor visits during scheduled village visits 4/5 times/year • Hospital provides out of hours telephone support • Volunteer village youths receive training, help with chores, record traditional knowledge in journal • Integrate all health care and social service resources • Flexible, innovative, patient | • More successful than expected • More patients than anticipated • Patients thrived in home environment and lived longer than expected • Formal evaluation: • - Percentage of home deaths increased from 33% in 1997 to 77% in 2001. - Big increase in number of patients with DNR orders - Caregivers were glad as family member remained in village - AN Health Consortium and “investigating possibility of expanding program to other parts of Alaska” | Level III |
Fernandes et al. (2010), USA (mixed) | Kokua Kalihi Valley, a Federally qualified health centre. Offering home based palliative care. | 91 HBPC clients enrolled, 46 adult patients | Mixed A prospective design. Data collected upon admission then every month afterwards. Different measures included. A caregiver satisfaction survey & telephone interviews. | Home Based Palliative Care Service Model | • Multidisciplinary team delivers medical care, assesses caregivers for stress & burnout, provides patient & family education • Community partnerships • Routine home visits scheduled every 2–3 months • Bilingual case managers were key to building trust • Local partnerships with universities, churches • Counselling provided • Monthly caregiver support groups • Medical insurance was provided by the physician and psychologist • Family based decision-making • The health centre also serves as a PC clinical rotation for nursing, medical and law schools | • This model has been evaluated • Significant reduction in acute care admissions. • The most utilised support service was case management • High caregiver satisfaction rates • Patients reported significant improvements in wellbeing • The program demonstrated the ability to stabilize the care of seriously and terminally ill patients at home, minimize the pain and anxiety for most clients, improve advance care planning, reduce hospitalisations, and increase appropriate use of community resources | Level I |
Finke et al. (2004), USA (rural) | AI/AN | Qual Focus group discussions Interviews | Integrated Health Service Delivery Model | • Collaboration among local health services, communities and university Culturally appropriate materials developed • PC training for clinical staff • Respect and consistency regarding cultural beliefs on death • Strong administrative and management support • Community consultation and needs identified • Local tribal leadership led program • Tribal cultural and spiritual consultation • Distinct PC home health chart • Interdisciplinary team meetings • Coordination with the Zuni EMS • Skilled nursing care • Telephone consultation • Home visits • Adopted policies and procedures | • Development of stakeholder support • Self sustainable | Level III | |
Kitzes et al. (2004), USA (rural/ remote) | AI/AN Health Care System (IHS facilities) | Secondary data analysis/ 114 Medical Record Review | Mixed methods Medical Record Review and Semi-structured interview | Integrated Service Model in health service settings | • The first IHS Area policy on Palliative Care and Pain Management • Space for traditional ceremonies; • Hospital had an “open door policy” regarding traditional healing; • Spiritual care and cultural practices; • Accommodated families’ desires; • Individualise care; • Not make assumptions about preferences; • Pain Management was developed; • A new version of the IHS patient contact form developed • Policies made available to IHS Elder • Innovative PC programs established involving multiple agencies | This itself was an evaluation paper of one Indian Health Service | Level IV |
Kitzes et al. (2003), USA (rural/ remote) | AI/AN Health Care System | Case Studies | Description of multiple initiatives | Service Model | • Cross-trained Home Health Agency employees provided EOL care services, rather than a separate hospice staff. • Medical oncologist provides physician support • “High touch, low tech” program designed • Before start of the program, great effort was ensured to make the services culturally appropriate (medical anthropologist worked with the development team; FGDs conducted to enhance understanding) • Home-based PC and staffed by family and village members. • Nurse’s availability on “on-call” basisInterdisciplinary team discussion | • Evaluation was conducted in some health services • There has been a 500% growth in chronic care patients and a 350% growth in the HHA patients | Level III |
Mann et al. (2004), NZ (urban) | Mixed medical/ surgical Intensive Care Unit (ICU) | 17 ICU patients (14 NZ Maori, 2 Cook Is Maori, 1 Samoan) | Mixed methods Medical Record Review and discussions with family and health professionals | • Maori patients led • Nurses are experienced, confident, close relationship with family • Palliation plan in place • Multidisciplinary approach • Support from GPs, district nurses, • Hospice Service • Bereavement team – available 24/7 • Approach families of all Maori and Samoan ICU patients facing death • Transport patient home to die • Explain families the process • Patient transported home by 2 ICU nurses, all treatment ceases, pain medication provided • If death is not imminent, PC provided by district nurses, GPs and Hospice | All families reported this as a positive experience | Level III | |
Slater, et al., (2015), NZ (urban) | Hospice | 17 participants | Maori-centered, qualitative research 17 semi-structured, face-to-face interviews with patients, and family members and service providers were undertaken | Hospice-based care | • Importance of building relationships with families, communities and primary health care providers • Building networks with Maori providers, traditional healers • Maori staff partnered with hospice nurse (collaborative model) • Work with volunteer services • Helpful staff • 24 h service • Worked as respite care • Working with family • Accommodating and supportive for large family gathering • Spiritual support provided | • Positive experiences reported • Patients and family members felt more confident with regard to communication • Further needs for improvements explored and documented | Level III |
Cottle et al. (2013), NZ (urban) | Hospice | 1 woman of Maori and Samoan heritage | Qualitative Single person case study | Whare Tapa Wha Model of Maori health | • Organisational changes occurred to ensure collectivist approach to care • Community engagement and ownership • Support from Maori elders • Coordination between multiple-agencies to deal with the complex case • Multi-systemic and wraparound care • Partnership between cultural community and health care professionals • Clear and regular communication between all parties • A “one size fits all” MOC does not work • Support from hospice – staff time, physical space, management support, nursing clinic • Hui (weekly local gathering) created conditions for significant change to services | • Hui created conditions for significant change to hospice services: • Nursing clinic held during hui meetings • Hui volunteers attended initial assessment • Hui volunteers raised awareness in community • Increased use of hospice by Maori and Pacific people • Availability of and access to palliative care for patients can improve QOL | Level IV |
Fruch, et al., (2016), Canada (urban) | Community-based palliative care | Canadian Aboriginal people | Process described | Palliative Shared Care Outreach Team | • Haudenosaunee traditional teachings • Community-based Project Advisory Committee led • Local and regional palliative care partners led implementation; partnership with researchers • Vision was to deliver compassionate, coordinated and comprehensive EOL • Community capacity development • Locally initiated and driven • Dedication, leadership and commitment from key community members and local healthcare providers • Bottom up approach • Built on existing resources and infrastructure • Community had required infrastructure, i.e., health services and providers • Shared vision for change • Effective collaboration among community healthcare providers and members • Community members feeling empowered • 24/7 Palliative Shared Care Outreach Team providing medical, spiritual and cultural support | • Palliative care guidelines and client care pathways are in effect • Increased home deaths as opposed to hospital or hospice deaths • Number of referrals increased • Increased access to palliative care education • Mentorship opportunity for local healthcare providers • Incorporation of traditional teachings to support clients and staff dealing with death and dying | Level III |
Kelly et al. (2009), Canada (rural) | Hospital, Palliative Care Service | 10 bereaved Aboriginal family members | Qual Semi structured interviews | Service model in hospital setting | • Services extended to visiting family • Interpreter service • Empower patient to decide place of death • Infrastructure • Involvement of all hospital staff • Spiritual care • Participant experiences considered to make changes in services, cultural practices and physical surroundings | Yes – ongoing qualitative evaluation | Level III |
St Pierre-Hansen et al. (2010), Canada (rural/ remote) | Rural Health Centre | 3 different baseline studies: Community Consultation: 50 elders FN PC Study: Qualitative study: 10 participants whose family members received PC | Qual Patient survey, Group discussion In-depth interviews | Service Model | • Leadership and governance based on the cultural values and beliefs • Active community engagement in decision-making and planning stage • Minimise communication barriers and provide support services • Cultural training to staff • Infrastructural/ environmental transformation occurred • Traditional healing and cultural needs incorporated • Elders provided patient support • Interpreters trained as certified medical interpreters • Planned telephone follow-up of bereaved families • Two-day cultural orientation and conflict-resolution training program | • Some form of evaluationMore planned - telephone follow-up of bereaved families • Interpreter availability increased from 50 h/month to 250 h/month - patient satisfaction increased | Level III |
McGrath (2010), AUS (remote) | 72 participants – patients (10), carers (19), AHWs (11), health professionals (30), interpreters (2) | Qualitative Open-ended qualitative interviews | The Living Model for Aboriginal Palliative Care Service Delivery – Conceptual Model | • Considered patients within the context of the extended family • Cultural safety, Community participation, Personal advocacy, Choice, Empowerment • Understand/support/ respect cultural grief practices • Focus on staying at home • Education – consumer and professional • Facilitate family meetings • Service availability in the communities • Address psychosocial and practical problems • Effective communication • Use of Indigenous workers • Provision of respite • Carer and escort support • Advocacy for resources and infrastructure | Not evaluated | Level I | |
McGrath et al. (2006), AUS (remote) | 72 participants | Qualitative Open-ended qualitative interviews | Indigenous Palliative Care Service Delivery Conceptual Model | 1) Equity 2) Autonomy and Empowerment 3) The Importance of Trust 4) Humane, Non-judgmental Care 5) Seamless Care 6) Emphasis on Living 7) Cultural Respect | Not evaluated | Level I | |
McGrath et al. (2009), AUS (remote) | 72 participants | Qualitative Open-ended qualitative interviews | Service model | • Generic features of palliative care: - 24 h access to palliative care - Focus on living - Respect for choice and autonomy - Patient advocacy - Support to patients, families - Patience and compassion - Multidisciplinary skill - Expert advice - Interagency cooperation - Seamless care - Dedicated professionalism - Carer upskilling - Provision of respite care • Rural and remote specific factors: - Practical assistance (support [oxygen] and organisational [Meals on Wheels]) - Flexible and creative approach to solve some practical issues - Health professionals visit communities • Cultural respect - Relationship and trust-building - Family and community network - Respect for grieving practices - Physical environment - Use of traditional healer and respect for spiritual practices | Not clear | Level I | |
Carey, et al., (2016), AUS (remote) | Alice Spring Palliative Care Service, NT | Patients accessing the services | Cross-sectional qualitative study/ evaluation study | Day Respite Facility | • Respite care available in the locality • Flexibility of the staff; Staff attitudes • Relationship and friendship with staff • Provision for caring for complex patients, and looking after their clinical, personal needs • Transportation provided • Service was flexible and accommodating | • Qualitative evaluation • Impact has been strongly positive • Therapeutic needs ensured • Client satisfaction • Symptom management, medication compliance, QoL and service coordination – all improved • Act as a ‘safe place’ for isolated and marginalised community members • ED attendances and hospital admissions dropped | Level II |