Table 2 Literature sample and appraisal

Addicott (2013) [56]

U.K.

Qualitative study based on 4 case studies

Semi-structured interviews

4 high-performing care homes in end-of-life care

Social workers, palliative care specialists, community nurses, care home managers, RNs, care assistants

Three pivotal factors to high-quality EoLC in care homes: advance care planning (ACP), multidisciplinary communication and work, dignified and compassionate care. ACP as a useful trigger for beginning communication with residents and other care professionals. Strong leadership can motivate compassionate care.

2

American Academy of Pediatrics (2013) [37]

U.S.

Policy Statement / Pediatric Palliative Care-Pediatric Hospice Care (PPC-PHC) Guidelines based on published observational studies, expert opinion, and consensus statements.

N/A

N/A

Model Principles:

1. Patient-centered and family engaged

2. Respect & partnering

3. Quality, access & equity

4. Care across age spectrum & life span

5. Integration into the continuum of care

6. Universal preparedness & consultation

7. Research & continuous improvement

Teams should have sufficient collective expertise and adequate staff to address child/family needs. Organizations should have dedicated interdisciplinary PPC-

PPC-PHC teams that facilitate clear, compassionate discussions supporting families and staff beyond EOL period. PPC-PHC involves collaborative, integrated multimodal care (cure seeking, life-prolonging, comfort-enhancing, QOL-enriching)

N/A

Borhani et al. (2013) [38]

Iran

Descriptive exploratory qualitative study

A teaching hospital in Islamic South-East Iran, 12 ICU nurses

Nurses

Commitment to care is expected until the last moment. Nursing challenges include ethical issues, family expectations, religious issues and miracles. Care involves awareness of the needs of dying patients, identifying impending death, promoting comfort and spiritual care, and caring relationships

4

Cook et al. (2015) [39]

Canada

Mixed methods

Dying pts. in Med/Surg ICU, their families and clinicians

Physicians, residents, nurses, social workers, chaplains, family members

Honouring pt. wishes in ICU involved humanizing the environment, personal tributes, family reconnections, rituals & observances, dignifying the patient, giving the family a voice as partners in the caring process instead of “visitors”, fostering clinician compassion by encouraging self-awareness, reflection and sense of collective purpose

2

Costello (2001) [57]

U.K.

Ethnographic study

Participant observation, semi-structured interviews

74 pts. in elderly care wards in a large hospital, 29 nurses, 8 physicians

Nurses, physicians

Hospital culture, mores and beliefs impact the experiences of older dying pts. Bracketing out time provision of psychological care.

4

Cox (2004) [40]

U.S.

Review of literature and position statement (Emergency Nurses’ Association, American College of Emergency Physicians, American Trauma Society)

Comprehensive Pediatric Bereavement Programs (CPBP)

Multidisciplinary Bereavement Committee (nurses, physicians, SWs, chaplains, child life specialists)

Key elements of CPBP:

team approach, recognition of cultural differences, integration of family into care of the dying, memory packets or boxes, support groups, resource lists and information, remembrance ceremony, continued contact with family, staff education and development, program evaluation and feedback.

N/A

Hanson & Cullihall (1996) [41]

Canada

Care study (for teaching purposes)

Palliative care team: nurse, physician, SW, chaplain, domiciliary care sister

Patient and family holistic care was delivered by an interdisciplinary palliative team. Primary nursing role involved coordination and integration with other health team members continuity of care, provision of comfort care and symptom management. The care model improves quality of life for the dying and enables informed choices for patients and families

N/A

Kayser-Jones et al. (2005) [58]

U.S.

Content analysis

33 residents in a 25-bed hospice unit within a large long-term care facility

Hospice team (certified physician, nurse manager, RNs, LVNs, CNAs, SW, activity therapist, spiritual counsellor, volunteer coordinator)

The hospice environment provides physical-psycho-social-spiritual care as a therapeutic community, and reflects compassion. The hospice team core values include communication at all levels and development of sense of community. There is awareness of how the environment influences care (attention to details, minimum noise, soft background music, common meal area, garden homelike, supportive, family).

Alternative, creative approaches to symptom management were used

Social and spiritual events (Happy Hour, Memorial Service) provided a sense of community. Needs of resident prioritized over paperwork.

1

Kehoe (2006) [42]

U.S.

Metasynthesis of qualitative studies

65 US hospice nurses (in 5 qualitative studies)

Hospice nurses / hospice team

Strong personal foundations are complemented by firm professional supports. Team includes the patient’s family, nurses, social workers, physicians, and other professionals and volunteers who “cocoon” the dying. Hospice nurses are collaborators, valuing, seeking, and offering support to the IP team. For nurses, is important to develop a sense of the abilities of others on the hospice team.

N/A

Knuti et al. (2003) [43]

U.S.

Non-research Schwartz Rounds – case study focused on caregiver (physician) who becomes pt. (cancer surpriser)

Oncology

Physicians (oncologist), patient (physician), spouse (psychologist), social worker, clinical nurse practitioner, nurse, fellow

Processes involve active planning, ongoing support from relatives, friends and the team as resources described as “circles of strength”, being honoured and cared for by the team; patient and family involvement in decisions; open and direct communication; promoting self-care; proactive and timely referrals; IP mentoring. Outcomes include intimacy, happiness after diagnosis, hope, changing relationships and perspectives, enhanced spirituality.

N/A

Krakauer (2000) [44]

U.S.

Non-research Schwartz Rounds – case study focused on acute palliative care and the way comfort was provided to a young adult in his last days of life (principle of double effect)

Hematology – Oncology Dept. & Palliative Care Service

Facilitator, Ward Nurse, SW, Chaplain, Palliative Care Nurse, Palliative Care Physician, Pt’s family, Pharmacist

Patients expected caregivers to listen to needs and respect wishes. Care involved tremendous integration and teamwork between patient, family, nursing, palliative care, and pharmacy. The team considered the best place for the patient to die taking into account family wellbeing. Having a safety net is important to protect a dying patient from acute suffering. Support from, consultation and collaboration with other providers improved pain management. Family perceived making the right decision and felt like part of the team. Positive outcomes included protocol development for use of barbiturates for intractable suffering. Spiritual peace was achieved for family, friends and staff. Team education is needed to address ethics of the “double effect”.

N/A

Lintz et al. (1999) [45]

U.S.

Non-research Schwartz Rounds – case study focused on aggressive palliative treatment & psychosocial issues faced by pts., families and caregivers

Hematology-Oncology Dept.

Physician, nurse, medical oncologist, psychiatrist, SW

The team worked with the family to proceed through fertility treatments, pregnancy, and birth. Instilling hope and helping patients address difficult questions, and make decisions is a significant part of care. The team works together to decide to continue or cease treatment. Acknowledging the patient’s positive impact on the caregiver’s life.

N/A

Moore & Phillips (2009) [61]

U.S.

Non-research Schwartz Rounds – summarizes findings from an independent study commissioned by Schwartz Center (SC) that examines Rounds’ outcomes, discusses their utility in providing support and offers lessons learned for others who may want to consider Rounds’ implementation

VA Hospital

SW, hospice/palliative medicine physicians

Implementing Schwartz Rounds requires commitment by hospital administration, human resources and formalized planning. Reflecting on the emotional aspect of care enhances caregivers’ ability to deal with a similar situation in the future. Rounds provide support towards empathic practice of medicine (i.e. reflection, self-monitoring, processing emotion and coping with its effects).

Unanticipated outcomes: patient-centered changes in institutional policy or practice; greater use of palliative care teams/enhanced palliative care services; improved linkages among hospital services to better meet the needs of veterans with mental health disorders and substance abuse; discussion among staff about advanced illness and palliative care issues.

N/A

Penson et al. (2000) [60]

U.S.

Non-research Schwartz Rounds – case study focused on burnout

Oncology

Physicians, social worker, clinical nurse practitioner, nurse, fellow

Participants emphasized communication, partnership, having the right attitude and the team as being “what saves all of us”. The rounds provide spaces for connecting with the team and learning about the patient as an individual. Reported positive outcomes included reduced burnout and stress, ability to recognize stress and burnout in self and others, improved coping and teamwork and team support.

N/A

Penson et al. (2002a) [46]

U.S.

Non-research Schwartz Rounds – case study focused on bereavement

Oncology

Social worker, oncologist, palliative care nurse, infusion nurse, pediatric oncologist, palliative care physician, psychologist

The team was viewed as an extended family. Caring involves honouring the personal relationship, meeting patient’s needs as survivors, and realizing the need to sacrifice. Processes included: phone calls, bereavement care programs (sending cards, memorial services, saying good-bye to patient, family, friends), bereavement rounds for staff. Family valued receiving phone calls, cards and letters.

N/A

Penson et al. (2002b) [47]

U.S.

Non-research Schwartz Rounds – case study focused on negotiating cancer treatment in adolescents

Oncology

Social worker, ward nurse, oncologist, palliative care nurse specialist, psychiatrist

Discussion centred around several topics: care decisions, sharing prognosis and options, maintaining supporting patient wishes, mobilizing transition to hospice care, saying good-bye, team communication, commitment and working relationships. Positive outcomes were allowing “different family members to establish their own relationship with team members… members of the team [were able] to share the sadness and the challenges of working with the family and to ‘hold’ the emotion that these cases evoke”.

N/A

Penson et al. (2005) [48]

U.S.

Non-research Schwartz Rounds – case study focused on fear of death

Oncology

Physician, nurse, chaplain, psychiatrist, oncologist, social worker, palliative care physician

Discussion emphasized the challenges and benefits of addressing conflicts, responding to difficult questions, being empathetic and taking time to listen and be present. Careful care planning alleviated fear and depression. The process resulted in team role fulfillment. [

N/A

Puchalski et al. (2006) [49]

U.S.

Non-research Model for interdisciplinary spiritual care

N/A

Applicable to physician, social worker, nurse, chaplain

The document integrates a “Call to Action”. The model emphasizes adherence to a biopsychosocial-spiritual model of care that is practised by all members of the healthcare team. Self-awareness, ongoing interdisciplinary team communication ensures that patient and family have comprehensive compassionate plan of care. Compassionate presence involves intention, openness, connections with others, and comfort with uncertainty. It is relationship-centred, not agenda-driven. It enriches the work of each healthcare professional richer through collective action.

N/A

Puchalski et al. (2014) [50]

U.S.

Non-research Consensus findings re standards and strategies for integrating spiritual care

N/A

Organizational policies should promote spiritual compassionate care across the organization, at the bedside with patients and families, in staff relationships, and at all levels of leadership. It has potential to transform and heal all parties.

N/A

Rushton et al. (2006) [51]

U.S.

Quality Improvement Evaluation of an IP grief program

Children’s hospital

Physicians, nurses, social workers, child life specialists, bereavement coordinator, family care coordinator, volunteers

The grief program involved all units, departments, disciplines, leaders and volunteers. Timing and training were provided.

Change was guided by a hypothesis: “health care professionals will provide better care and support to seriously ill children and their families when they feel supported personally and professionally in their work.”

There were four interventions:

1. Compassionate Care Network - integrated palliative and EoLC information and expertise across all units

2. Institutional palliative care rounds

3. Patient care conferences

4. Bereavement debriefing sessions

Surveillance data were collected. The team benefited from increased teamwork and morale, knowledge about others’ expertise, knowledge about advocacy, and patient and family care in the terminal phase.

Frequency of referrals, conferences and meetings increased.

1

Schermer Sellers (2000) [52]

U.S.

Research evaluation of an integrated treatment model – psychosocial needs assessment

Medical oncology

Patients, cancer physician, oncology nurses, lab technicians admin staff

The integrated treatment model was driven by collaborative healthcare guidelines and a mission statement: The mission statement was: 1) to reduce suffering created by the effects of cancer on patients and loved ones; 2) to work with patients and their families to diminish stress and channel all available resources toward health, healing, and quality of living; 3) to provide ongoing support to staff and physicians; 4) to strengthen and support the physician/ patient relationship, and 5) to relieve staff and physicians of lengthy and/or complex psychosocial patient interventions. Proximity, accessibility and availability of the therapist enabled frequent team communication, a whole person approach, assessment of patient and family complex needs, resources, goals (lifestyle, faith, sexuality, grief). It supported crisis prevention and management. Outcomes were collective action, team shared learning, team satisfaction with care delivery, patient reduction in suffering, improved quality of life, and increased hope and perceived agency for patient and family.

1

Teno & Connor (2009) [53]

U.S.

Non-research Evidence-based commentary using a patient case

Hospice & palliative care

Physician, clinical nurse specialist, social worker, chaplain

Patient values, expectations, choice and cultural tradition, and patient dignity must be respected. The case exemplifies attendance to the patient physical and emotional comfort, evidence-based practice, shared decision making, family information needs. Team crisis care was available. Bereavement care was available before and after death. Compassionate care was coordinated across care settings and facilitated by IP referrals, transitions in care, and participation in important family events. An individualized, holistic care plan addressed the person’s priorities and contributed to perceived hope.

N/A

Thompson (2013) [59]

U.K.

Non-research Reflection

Schwartz Rounds in a UK hospital

Rounds require a supportive environment, open discussion between equals, time and facilities, Any member of staff, from porters to executive directors, can attend and participate. Senior clinicians acknowledged the complexity of the case and appreciated the team challenges. Positive outcomes were: improved communication, team members reminded of their value and why they entered a caring profession, emotional support from colleagues, catharsis, learning and understanding roles and challenges of others, celebrating achievements, led to improved patient experience

N/A

Wentlandt et al. (2016) [54]

Canada

Qualitative Interviews, focus groups

Hospital palliative care units

Physician, nurse, social work, PCU manager, chaplain, OT, Volunteer

Connection with patients and family members goes beyond just doing the job. A sense of community is appreciated by family. A quick response by the team was seen as “giving reassurance, pulling out all the stops and going the extra mile” to support a family’s wellbeing. Patients and caregivers expressed satisfaction with care that was seen to be “engaging”, sometimes humorous, and “genuine”.

(3)

Williams et al. (2008) [55]

Canada

Non-research Literature review

Perinatal /neonatal

Multidisciplinary team but specific reference to physician, social workers and nurses.

Families value speaking during meetings, continuity of the care team, timely communication, sharing sorrow, and being informed of changes in the care plan. Parents want to feel supported regardless of their decisions. Every team should exercise compassionate, individually tailored, and non-judgmental care including respectful treatment of the body. Respect can also be given through verbal and emotional support of family and co-workers. Shared decision-making should be viewed as a multidisciplinary process. The team should help parents feel that the right decision has been made. Compassionate care demonstrated through assistance with religious rites, funeral support, bereavement care.

Interdisciplinary morbidity and mortality sessions or small group debriefings may help reduce the heavy emotional stress.

Forming a connection with patients and family members and not “just do their job”

N/A