Key features of palliative care service delivery to Indigenous peoples in Australia, New Zealand, Canada and the United States: a comprehensive review

Throughout the literature, the need to collaborate and to engage meaningfully with communities [6, 14, 22‐28] and families [14, 24, 25, 29‐34] before designing and implementing any program was highlighted as a fundamental prerequisite for progress. Most of the studies were conducted in rural or remote locations where EOL care provisions were often not well-developed or well-understood. Better communication, commitment around EOL care at the policy level, staff capacity building, and improved physical environment and access to services were identified as key service delivery needs.

Furthermore, the need for more education and training for both the Indigenous communities and the health care staff in palliative care was identified repeatedly [2, 6, 14, 22‐27, 30, 32, 35‐40]. Health service providers (HSPs) need to be committed and spend sufficient time to gain the confidence of Indigenous patients and their families.

There was a strong preference for living with family and within the community at EOL [23, 29, 31, 33, 35‐37, 39, 41‐43]. Family members generally wanted to be with their loved ones and to fulfil their wishes, including finding ways of enabling care and support to die at home. EOL care was regarded as a process that should involve the entire family, with several studies reporting that families should be at the centre of any decision-making process [24, 26, 27, 30, 31, 44]. Community and/or extended family members gathering was regarded as significant and part of the process for how a dying person is prepared for death [35].

The importance of dying at home or being cared for at home was a common theme for Indigenous people across the four countries [2, 26, 29, 31, 32, 39‐41, 43, 44]. Special cultural ceremonies and rituals practiced at the EOL were regarded as important. Dying people benefit from both Western physicians and traditional healers. Elders in one particular study suggested that non-Indigenous HSPs should ask for assistance from ‘elders, priests, spiritual leaders, women who are very strong in their medicine’ (p. 11) if they are unsure of what to do [35]. Thus, in the intercultural space, both worldviews should be respected. Being able to make these connections with families, kin, communities, and land was reported as helping people gain energy and in turn facilitating a strong spirit and peace of mind.

Open and honest communication from physicians, physicians respecting patients’ choices [32], ‘compassion with kindness’ in attitudes [35] and having access to Indigenous staff [42, 44] were expressed as preferences. It was reported in one Canadian study that ‘offering foods that bring comfort to the dying person may be more spiritually and emotionally healing than restrictive diets’ (p.11) [35].

As expected, distance and affordability of services (along with other indirect expenses related to treatment such as leaving families behind to travel) were identified as key barriers to access palliative care services [6, 14, 22, 24, 26, 42, 45]. Other important service delivery issues included staffing, lack of funding and resources in the sector, and poor availability of culturally appropriate services [6, 14, 22, 24, 26, 42, 45].

Differences between Western medical models and Indigenous cultures in understandings of and priorities for EOL care pose a major issue within the health care setting. Disrespectful and racist treatment by HSPs, and difficulty in regards to communicating EOL care issues to Indigenous patients and families, were also identified as barriers [35, 46, 47]. Hospital policies restricting extended family members from gathering around a dying Indigenous person, or practicing prayers and ceremonies at EOL were highlighted [35]. More training and education for HSPs in order for them to work effectively with Indigenous people who are dying [35], and the employment of more Indigenous staff in the health sector, were seen as possible solutions to these service delivery issues. Misinformation and misunderstandings regarding palliative care and hospice services were also documented among Indigenous people [14, 24, 26], with providing an adequate and continuing health literacy program in the community seen as a requirement for making progress in better EOL care.

Effective service models implemented in rural or remote settings demonstrated strong community connection and involvement from the outset [2, 7, 11, 33, 49]. Some had built partnerships with local services, some had involved Elders from the communities in the program design and materials development, others reported that they had explored community palliative care needs before designing the projects [2, 7, 23], while some promoted services that were already well-established in the local communities. One study reported that an eight person Elders’ Council had influenced strategic planning and operations, and that this Council had shaped the program in the locality [34]. Elders also provided patient support by visiting patients in their residences and as interpreters. Kitzes et al. [6] included tribal and community values in planning, and considered the diversified community and their rich history, sacred culture and traditions [6]. Fruch and colleagues [49] also reported traditional philosophies guiding the project development. Cottle et al. [11], in their case analysis in one urban-based hospice service, explained how they adopted the Whare Tapa Wha Model of Maori health (consisting of four dimensions: spiritual, mental, physical, extended family) into their service delivery [11]. They worked with a Hui (weekly local gathering) to make significant changes to that hospice service, including reallocating staff time, rearranging the physical space, and re-orienting the management format. They made efforts to ensure clear and regular communication between all parties. These initiatives increased use of that particular hospice service by Māori and Pacific peoples.

Providing continuing education and training to upskill HSPs and community stakeholders and family members is an integral part of all community-based program models [2, 7, 11, 23, 48]. Byock and colleagues [7] highlighted the significance of peer-to-peer teaching within their program. The palliative care and primary health care (PHC) partnership model described by DeCourtney et al. [2] provided training to village-based workers to develop a cadre of trained workers and volunteers in each Alaskan Native Village. Specific culturally sensitive program materials were developed and used to educate and train patients, families, staff, and volunteers. Training for navigators is an integral part of the Patient Navigators’ model [48]. McGrath et al. [14] also highlighted the importance of consumers and professionals’ education in their conceptual model. The service models that were implemented in the hospital or health service settings adopted other strategies, such as cultural orientation and conflict-resolution training programs for staff.

Various service delivery strategies have been identified. Attributes of individual staff were identified as particularly crucial for service delivery models like the Navigator Model, whereas the IHSD Model [7] adopted a whole-of-service approach (team-based palliative care) in which all staff within the service were informed and involved in delivering palliative care to clients. Where palliative care was integrated within the existing services, funds and resources were generally more sustainably shared and allocated [7, 11, 23, 33], and strong support was usually received from administrative and management staff [23]. Clinicians’ endorsement was identified as particularly important to ensuring implementation and continuing delivery of palliative care in health services settings. DeCourtney et al. [2] reported that they did not want to introduce new strategies to deliver palliative care, but instead utilised an existing rural health care delivery model in the Alaskan Native Villages to expand the continuum of care to the EOL setting. They described it as a decentralised model that combined trained volunteers and health care workers in villages, with medical direction from a central urban location and home visits by nurses. They allowed for multiple referral pathways into the program, including by family members. Three studies described decentralised home-based outreach palliative care service models [2, 4, 49] with a large multidisciplinary team including outreach workers, delivering clinical care by making regular home visits every 2–3 months. Bilingual case managers, monthly caregiver support groups and a family-based decision-making process were also part of the service model. DeCourtney et al. [2] stated that doctors visited remote villages 4–5 times per year whereas Fruch et al. [49] described a Palliative Shared Care Outreach team that offered medical, spiritual and cultural care 24/7 to the communities. Carey et al. [52] described a ‘Day Respite Facility’ in the Alice Spring EOL service in the Northern Territory in Australia which had helped reduce emergency attendances and hospital admissions at the end stages of life while addressing therapeutic needs and client satisfaction.

A report on innovative palliative care programs noted that they tended to be more successful when implemented in stable institutions, i.e., those not experiencing severe financial stress or undergoing structural changes [7]. Successful programs were flexible in nature and embraced co-ownership and collaborative partnerships. In rural settings, partnerships occurred between academic medical centres, local providers and the community [23]. In urban settings, established working partnerships operated with local city, county or federal programs. These programs mostly worked with established support services, such as volunteer programs [7].

Organisational level changes were reported in Outreach Care, a non-residential, community-based hospice organisation in New Zealand, when the organisation was required “to move beyond Eurocentric individualism to a more collectivist approach to care” [11]. Outreach Care ensured holistic assessment of patients’ physical, emotional, psychosocial and economic needs; invited local community members to tell the service about their unmet needs; involved multiple agencies to deal with individual cases; and maintained clear and regular communication between all parties [11].

Palliative care service providers sometimes underwent infrastructure refurbishments to make their service more comfortable and accessible to Indigenous patients and their families [14, 33, 34, 53, 54]. Examples included: the construction of a new building with a smudge room (in which the smoke of sacred herbs is used for ceremonial purification), enlarging a common area in order to accommodate large family groups, and ensuring the availability of large patient rooms [11, 52].

Patient-centred care that is “respectful of and responsive to the preferences, needs and values of patients and consumers” was prioritised in all these service models. The dimensions of patient-centred care are “respect, emotional support, physical comfort, information and communication, continuity and transition, care coordination, involvement of family and carers, and access to care” [55] p.13.

The availability of navigators’ support during EOL phases was successful in ensuring that patients found cancer care understandable, available, accessible, affordable, appropriate, and accountable. Navigators work as cultural brokers and interpreters for their clients, and ensure that the clients are participating fully and actively in care [48]. One navigator noted,

“when a client is terminal, we work hard to take a neutral position relative to cancer treatment. We provide information and allow them to make their own decisions about continuing chemotherapy and other treatments. If a client starts saying he/she is ‘tired of treatment and pain’ and ‘it’s time to return to God’, we discuss what the client and family want of the future, and provide information about advance directives, palliative care, and hospice.” [48]

As part of the IHSD Model, implemented through the Promoting Excellence in EOL Care program in the USA, different communities adopted different locally suitable strategies to promote EOL care. The IHSD model introduced new standards and protocols to ensure delivery of core palliative care services: pain and symptom management, psychosocial care, spiritual counselling and support, QoL improvement and continuity of care, value-based care, and life-review [7]. Twenty of the 22 projects were sustained in some form by their home institutions beyond the conclusion of the program funding. DeCourtney et al. [39] described how, as part of the IHSD program, they established a village-focused, culturally sensitive, regionally based physician- and home health nurse-led multi-disciplinary palliative care program in rural Alaska Native communities. The Helping Hands Program provided training to village-based health care providers on palliative care, and these trained health care providers provided at-home care during EOL. This model allowed for multiple referral pathways while helping to decentralise services, by ensuring central technical support from a local health service. When patients were admitted into the program, four steps were followed: 1) individual needs-based assessment; 2) identification of differences in goals between patient and service providers; 3) individual care plan development concordant with community values; and 4) establishment of trust. Patients and family members were pleased with the option to remain at home in familiar surroundings as they neared the EOL. The frequency of nurses’ visits to patients’ homes was increased if the patient’s condition worsened and bereavement support to family members after a patient’s death was also provided.

Most of the projects, especially those under the Promoting Excellence in Palliative Care program in the USA [7], used established quality improvement techniques for systematic record-keeping and to monitor and observe program impacts on patient outcomes. Byock et al. [7] described how various projects refined their palliative care service delivery strategies based on feedback from clients and observed changes in outcomes. Clinical data were used in care planning, including the use of QoL assessment tools to highlight domains of patient or family-reported needs and helped to focus therapeutic attention.