Table 3 Systematic Review Themes and Subthemes

1. Presuppositions of oncologists and haematologists about palliative care referral

Role conflict

Handing over patients to palliative care is a professional failure (Wright, 2017 [43])

Amounts to letting down and failing the patients (Wright, 2017 [43])

Treatment effectiveness is a proof of physician’s performance (Prodhomme, 2018 [56])

Primary role is to cure and save from death (Prodhomme, 2018 [56])

Medical training geared towards cure or control of the disease (Horlait, 2016 [36])

End of life discussion is not compatible with the oncologist’s role (Prodhomme, 2018 [56])

End of life discussion causes loss of physician credibility (Prodhomme, 2018 [56])

Abandonment

Will be viewed by families as abandonment (Schenker, 2014 [46]) (Charalambous, 2014 [37]).

Sense of abandonment when the focus of care was changed (Wright, 2017 [43]).

Announcing poor prognosis signified abandonment (Sarradon-Eck, 2019 [58])

Rupture of therapeutic alliance

Breakdown of doctor-patient relationship. (NyirÖ et, 2018 [53])

Jeopardises patient compliance (Sarradon-Eck, 2019 [58]) (Prodhomme, 2018 [56])

Loss of hope

Desire to maintain hope is lost (Ethier, 2018 [54]) (Sarradon-Eck, 2019 [58])

Initiating palliative care is incompatible with hope. (Prodhomme, 2018 [56])

Responsibility to reassure, motivate and infuse confidence (Prodhomme, 2018 [56])

Protect patients from violent discussions on end of life (Prodhomme, 2018 [56])

Negative emotions

Emotional toll while making palliative care referral (Wright, 2017 [43]) (Sarradon-Eck, 2019 [58])

Emotional burden associated with delivering news of poor prognosis (Sarradon-Eck, 2019 [58])

Emotional bond associated long term knowing of the patients (Horlait, 2016 [36]).

Inability to handle emotional reactions associated with palliative care referral (Horlait, 2016 [36])

Self-efficacy

Symptom management, psychosocial support and communication is integral part of oncology and can provide ourselves (Schenker, 2014 [46]) (LeBlanc, 2015 [47]) (Feld, 2019 [55]) (Sarradon-Eck, 2019 [58])

Oncologists have training in managing physical and psychological symptoms, and communicating with patients and families (Cherny, 2013 [38]) (Johnson, 2008 [40]) (Ward, 2009 [41])

2. Power relationships and trust issues

Control and coordinate the care process

Be responsible for the care of the patient till the end (Horlait, 2016 [36]) (Schenker, 2014 [46]) (Rhondali, 2013 [45]) (Hay, 2017 [42])

Coordinate the care of the patient at all stages of the illness (Cherny, 2013 [38]) (Wright, 2017 [43])

Referral leads to loss of control (Hay, 2017 [42]) (LeBlanc, 2015 [47])

Dislikes interference in patient care (Schenker, 2014 [46]) (Rhondali, 2013 [45]).

Gatekeeping

Wait till the end of potential curative treatment to make referral (NyirÖ et, 2018 [53])

Referral only when all the treatment is discontinued (Prodhomme, 2018 [56]) (Sarradon-Eck, 2019 [58])

Initiate palliative care discussion only when there is an explicit request (Prodhomme, 2018 [56])

Competency based trust

Treatment provided by palliative care not as expected (Morikawa, 2016 [39])

Palliative care providers not skilled in managing side effects (Morikawa, 2016 [39])

Unable to differentiate a recoverable sick patient from a dying patient (Gidwani, 2017 [51])

Do not have adequate oncology knowledge to counsel patients (Cherny 2003 [38])

Lack aggressive approach (Morikawa, 2016 [39]), (Schenker, 2014 [46]).

Excessive focus on pain medications and sedation (Gidwani, 2017 [51])

Palliative care providers have a different perspective on assessment (Morikawa, 2016 [39])

Palliative care assessment is vague and not evidence based (Sarradon-Eck, 2019 [58])

3. Making a palliative care referral: A daunting task

Stigma associated with palliative care

Palliative care referral equals death, end of life, terminal care (Morikawa, 2016 [39]) (NyirÖ et, 2018 [53]) (LeBlanc, 2015 [47]) (Horlait, 2016 [36]) (Cripe, 2019 [52])

Negative perception about palliative care precludes the use of the term (Horlait, 2016 [36]) (NyirÖ et, 2018 [53]) (Tricou, 2019 [57]) (Sarradon-Eck, 2019 [58]) (Wentlandt, 2012 [48]) (Wentlandt, 2014 [49])

The term palliative care is unsuitable, scares people, harms them. (Sarradon-Eck, 2019 [58])

Elicits feelings of abandonment, stopping treatment and euthanasia (Sarradon-Eck, 2019 [58])

Use supportive care and comfort care instead (NyirÖ et, 2018 [53]) (Sarradon-Eck, 2019 [58])

Reluctance to discuss death and dying (Prodhomme, 2018 [56])

Discussing death is stressful and a taboo (Prodhomme, 2018 [56]) (Horlait, 2016 [36]) (NyirÖ et, 2018 [53])

Patients and families get alarmed by mention of palliative care (Smith, 2012 [44])

Physicians have to address the negative connotation associated with palliative care (Hay, 2017 [42])

Palliative care referral requires careful explanation (Wright, 2017 [43])

Referring to palliative care means patients are weak and unable to fight the disease (Rhondali, 2013 [45])

Illness and treatment related factors

Advanced, recurrent or metastatic cancers are referred (Rhondali, 2013 [45])

Unpredictable course of illness hinders referral (Morikawa, 2016 [39])

Relapsing and remitting nature of haematological malignancies is a barrier for referral (Wright, 2017 [43])

Rapid progression and complications hinder referral (Wright, 2017 [43])

Short time frame from onset of symptoms to end of life is a constraint for referral (Tricou, 2019 [57])

Prognostic uncertainty is a barrier (Ethier, 2018 [54])

Referred when prognosis is poor (Wentlandt, 2012 [48]), (Wentlandt, 2014 [49])

Uncertainty in decision making hinders referral (Suwanabol, 2018 [50])

No referral if general condition is good (Horlait, 2016 [36]).

Uncontrolled symptoms facilitate referral (Rhondali, 2013 [45]), (Wentlandt, 2012 [48]), (Wentlandt, 2014 [49]) (Feld, 2019 [55])

No referral in the absence of symptoms (Johnson, 2008 [40]), (Wentlandt, 2014 [48]) (Feld, 2019 [55])

No referral until treatment failure or late stage of the disease (LeBlanc, 2015 [47]).

No referral if possibility of cure exists (Johnson, 2008 [40]) (Wright, 2017 [43]) (Ethier, 2018 [54])

Lack of treatment options is a trigger for referral (Feld, 2019 [55])

Priority on treatment of the disease and cure until the end hinders referral (Morikawa, 2016 [39])

Difficulty in recommending discontinuation of treatment in younger population (Ethier, 2018 [54])

Patient and family attitudes

Unrealistic expectation of cure and desire for aggressive treatment (Suwanabol, 2018 [50]) (Horlait, 2016 [36]) (Ethier, 2018 [54]) (Cripe, 2019 [52])

Unwilling to discuss prognosis and non-curative approach (Smith, 2012 [44]) (Ethier, 2018 [54]) (Johnson, 2008 [40])

Unwilling to discuss referral to palliative care (Horlait, 2016 [36]) (Ward, 2009 [41]) (Charalambous, 2014 [37])

(Feld, 2019 [55])

Family conflict (Suwanabol, 2018 [50])

Cultural barriers (Suwanabol, 2018 [50]) (Horlait, 2016 [36])

Language barriers (Horlait, 2016 [36])

Negative public perception about death (Suwanabol, 2018 [50])

Organisational Challenges

Hospital culture directed towards cure (Suwanabol, 2018 [50]), (Horlait, 2016 [36])

Lack of time to discuss about palliative care (Suwanabol, 2018 [50]), (Horlait, 2016 [36]) (Cripe, 2019 [52]) (Ethier, 2018 [54])

Lack of space to discuss about palliative care (Horlait, 2016 [36])

Documentation deficiencies in oncology case notes (Horlait, 2016 [36])

Legal liability of palliative care referral (Suwanabol, 2018 [50])

Fear of opioids and its side effects (Suwanabol, 2018 [50])

Lack of knowledge among the oncologist’s about palliative care (Suwanabol, 2018 [50])

Lack of referral criteria

Not sure when to refer (Morikawa, 2016 [39]) (Wentlandt, 2012 [48]) (Charalambous, 2014 [37])

Lack of consensus among the oncologists about when to refer (Horlait, 2016 [36])

Lack of clear guidelines for palliative care referral (Ward, 2009 [41]) (Rhondali, 2013 [45]) (Wright, 2017 [43])

Limited palliative care resources

Inadequate access to palliative care services (Johnson, 2008 [40]), (Suwanabol, 2018 [50]) (Cripe, 2019 [52])

Inadequate number of palliative care providers (Charalambous, 2014 [37]), (Morikawa, 2016 [39]).

Inadequate palliative care resources (Wright, 2017 [43]), (Ward, 2009 [41]), (Gidwani, 2017 [51])

Long waiting times for palliative care appointments (LeBlanc, 2015 [47]) (Feld, 2019 [55])

Palliative care with excessive inpatient focus, lack of outpatient clinics (LeBlanc, 2015 [47])

4. Cost-benefit of palliative care referral

Benefits of referral

Pain and symptom control (Wright, 2017 [43]), (Schenker, 2014 [46]), (Rhondali, 2013 [45]), (LeBlanc, 2015 [47]), (Charalambous, 2014 [37]), (Smith, 2012 [44]) (Feld, 2019 [55]) (Tricou, 2019 [57])

Psychosocial support, managing depression and anxiety (Rhondali, 2013 [45]), (Smith, 2012 [44]) (Johnson, 2008 [40]) (Hay, 2017 [42]) (Feld, 2019 [55])

Improvement in quality of life (Gidwani, 2017 [51]), (Johnson, 2008 [40])

Navigating complex situations and therapeutic decision making (Tricou, 2019 [57]) (Hay, 2017 [42])

Prognostication and Goals of care discussion (Hay, 2017 [42]), (Smith, 2012 [44])

Conflict resolution (Hay, 2017 [42])

Saves oncologist’s time (Rhondali, 2013 [45])

Facilitating treatment completion by better symptom control (Rhondali, 2013 [45])

Survival benefit (Rhondali, 2013 [45])

Discharge planning (Wentlandt, 2012 [48]) (Wentlandt, 2014 [49])

Reducing the length of hospital stay (Smith, 2012 [44])

Community support (Ward, 2009 [41])

Incongruent communication

Confusing and overwhelming communication (Wright, 2017 [43]) (Morikawa, 2016 [39]) (Schenker, 2014 [46]), (LeBlanc, 2015 [47])

Incongruent perception of prognosis by the palliative care providers. Information provided to the patients and families is not consistent with oncologist’s views (LeBlanc, 2015) [47], (Gidwani, 2017) [51] (Schenker, 2014 [46]) (Rhondali, 2013 [45])

Not including oncologists in goals of care discussion and advance care planning (Gidwani, 2017 [51])

Curtailment of care

Reluctance of palliative care to consult haemato-oncology patients (Wright, 2017 [43])

Patients unable to access blood products while receiving palliative care (Morikawa, 2016 [39])

Reluctance of palliative care to consult patients receiving active anti-cancer treatment (Ward, 2009 [41]), (Suwanabol, 2018 [50])

Cost and burden of additional consultation (Feld, 2019 [55])

5. Strategies to facilitate palliative care referral

Integrated model of care

Concurrent anti-cancer treatment and palliative care (Cherny, 2003 [38]) (Wentlandt, 2012 [48]) (Ward, 2009 [41])

Co-management of patients (LeBlanc, 2015 [47]) (Johnson, 2008 [40]) (Ward, 2009 [41])

Complementary role (Gidwani, 2017 [51])

Embedded into oncology clinics (Hay, 2017 [42])

Palliative care rotation should be part of oncology training and vice-versa (Charalambous, 2014 [37]) (LeBlanc, 2015 [47])

Communication between the oncology and palliative care teams (Hay, 2017 [42]), (Suwanabol, 2018 [50]), (Ward, 2009 [41])

Clarification and assignment of roles and responsibilities (Ward, 2009 [41])

Rapport building and smooth transition (Schenker, 2014 [46]) (Tricou, 2019 [57]) (Rhondali, 2013 [45]) (Wentlandt, 2014 [48]), (Ward, 2009 [41]) (Johnson, 2008 [40])

Changing the name

Changing the name to supportive care (Rhondali, 2013 [45]) (Tricou, 2019 [57]) (Sarradon-Eck, 2019 [58])

Referral likely if the name is changed to supportive care (Wentlandt, 2012 [48]) (Wentlandt, 2014 [49]) (Sarradon-Eck, 2019 [58])

Resource augmentation

Availability of services (Schenker, 2014 [46], (Cherny, 2003 [38])

Consistency and continuity of care (Ward, 2009 [41])

Presence of in-patient palliative care beds (Ward, 2009 [41])