Background
Methods
“Integrated palliative care involves bringing together administrative, organisational, clinical and service aspects in order to realise continuity of care between all actors involved in the care network of patients receiving palliative care. It aims to achieve quality of life and a well-supported dying process for the patient and the family in collaboration with all the care givers (paid and unpaid)”.
Search strategy
(hospices OR supportive care OR supportive care* OR end of life care* OR palliative* OR palliative care [MeSH Terms] OR hospice* OR terminal care* OR coordinated care* OR integrated care* OR transmural care* OR progressive patient care*) AND (“end stage disease” OR end stage disease* OR dying OR death [MeSH Terms] OR Chronic disease [MeSH Terms] OR Chronic disease* OR terminally ill* OR terminally ill [MeSH Terms] OR cancer) AND (care pathway* OR care pathway OR pathway* OR patient transfer* OR patient transfer OR patient care team* OR managed care program* OR continuity of patient care OR patient care management OR patient care plan* OR patient care planning OR illness trajectory OR “advance care planning” OR advance care planning OR delivery of health care OR models of care OR model of care OR model organizational OR models organizational OR organizational model* OR guideline*) NOT ((birth) OR child) OR pediatrics)) NOT ((animals[mh] NOT humans[mh])) Filters: Publication date from 1995/01/01 to 2013/12/31 |
Selection criteria
1. Discussion of illness limitations and prognosis. 2. Recommendations for conducting a whole patient assessment including the patient’s physical, social, psychological, and spiritual issues, their family and community setting. 3. Recommendations for when to make these assessments (e.g. At baseline and periodically thereafter). 4. Recommendations on when palliative care should be integrated. 5. Assessment of the patient’s goals for care. 6. Continuous goal adjustment as the illness and the person’s disease progresses. 7. Palliative care interventions to reduce suffering as needed. 8. Advance care planning. 9. Recommendation of involving a palliative care team (interdisciplinary team, palliative care consultation or other palliative care services). 10. Recommendations on care during the last hours of living. 11. Recommendations on grief and bereavement care. |
Selection procedure
Data extraction
Evidence quality assessment
Data synthesis
Cancer guidelines | |||
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Title/Country/Year | Setting | Emanuel’s criteria (EMC) | Quality of evidence |
Interdisciplinary guideline of quality for early detection, diagnosis and treatment of different stages of prostate cancer/Germany/2011. [31] | inpatient/outpatient | 7 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Timing of PC introduction, Patient’s goals, Suffering reduction, ACP, Involvement of PC team. | High |
Practice guideline for palliative care/Germany/2009. [32] | outpatient | 9 EMC: Holistic assessments, Timing of PC introduction, Patient’s goals, Continuous goal adjustment, Suffering reduction, ACP, Involvement of PC team, Last hours of living care, Grief and bereavement care. | Low |
Interdisciplinary guidelines for the diagnosis, treatment and follow-up of breast cancer/Germany/2012. [33] | inpatient/outpatient | 9 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Timing of holistic assessments, Timing of PC introduction, Patient’s goals, Continuous goal adjustment, Suffering reduction, Involvement of PC team, Last hours of living care. | High |
Guideline: Prevention, Diagnosis, Therapy, and Follow-up of Lung Cancer. (Germany, 2010) [34] | inpatient/outpatient | 9 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Timing of PC introduction, Patient’s goals, Continuous goal adjustment, Suffering reduction, ACP, Involvement of PC team, Last hours of living care. | High |
Malignant melanoma S3-guideline: Diagnosis, treatment and aftercare of melanoma. (Germany, 2013) [35] | inpatient/outpatient | 7 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Timing of holistic assessments, Timing of PC introduction, Suffering reduction, ACP, Involvement of PC team. | High |
Cancer pain. (Germany, 2007) [36] | inpatient/outpatient | 3 EMC: Holistic assessments, Timing of holistic assessments, Continuous goal adjustment. | High |
Directive of the Federal Joint Committee on the Regulation of specialized outpatient palliative care. (Germany, 2007). [37] | outpatient | 6 EMC: Holistic assessments, Patient’s goals, Suffering reduction, ACP, Involvement of PC team, Last hours of living care. | Very low |
National Practice Guideline pancreatic cancer. (Belgium, 2009) [38] | inpatient | 3 EMC: Holistic assessments, Timing of PC introduction, Involvement of PC team. | High |
Small cell and non- small cell lung cancer: diagnosis, treatment and follow-up. (Belgium, 2013) [39] | inpatient | 2 EMC: Patient’s goals, ACP. | High |
National Practice Guideline of oesophageal and stomach cancer – UPDATE. (Belgium, 2012) [40] | inpatient | 4 EMC: Holistic assessments, Timing of PC introduction, Suffering reduction, Involvement of PC team. | High |
Palliative Care Unit: Standards and Recommendations. (Spain, 2009) [41] | inpatient/outpatient | 8 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Timing of PC introduction, Patient’s goals, Suffering reduction, ACP, Involvement of PC team, Grief and bereavement care. | High |
Clinical Practice Guidelines on Palliative Care. (Spain, 2008) [42] | inpatient/outpatient | 10 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Timing of PC introduction, Patient’s goals, Continuous goal adjustment, Suffering reduction, ACP, Involvement of PC team, Last hours of living care, Grief and bereavement care. | High |
Palliative Care Guideline. (Spain, no date available) [43] | inpatient/outpatient | 3 EMC: Involvement of PC team, Last hours of living care, Grief and bereavement care. | Very low |
Palliative Care Guideline in the Community of Madrid. (Spain, 2008) [44] | inpatient/outpatient | 5 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Timing of PC introduction, Suffering reduction, Last hours of living care. | Very low |
Clinical recommendations guideline: colorectal cancer. (Spain, 2006). [45] | 4 EMC: Holistic assessments, Timing of PC introduction, Continuous goal adjustment, Grief and bereavement care. | High | |
Guideline Care in the dying phase. (The Netherlands, 2010) [46] | inpatient/outpatient | 8 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Timing of PC introduction, Patient’s goals, Suffering reduction, ACP, Last hours of living care, Grief and bereavement care. | Low |
Guideline Leptomeningeal metastases. (The Netherlands, 2010) [47] | inpatient/outpatient | 4 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Timing of PC introduction, Suffering reduction. | High |
Guideline Oncologic Rehabilitation. (The Netherlands, 2011) [48] | inpatient/outpatient | 6 EMC: Holistic assessments, Timing of holistic assessments, Timing of PC introduction, Patient’s goals, Continuous goal adjustment, Suffering reduction. | Medium |
Guideline NSCLC. (The Netherlands, 2011). [49] | inpatient/outpatient | 5 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Timing of holistic assessments, Patient’s goals, Suffering reduction. | High |
Guideline Melanoma. (The Netherlands, 2013) [50] | inpatient/outpatient | 3 EMC: Discussion of illness limitations and prognosis, Timing of PC introduction, Suffering reduction. | High |
Guideline Oesophagus carcinoma. (The Netherlands, 2010) [51] | inpatient/outpatient | 8 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Timing of holistic assessments, Timing of PC introduction, Patient’s goals, Continuous goal adjustment, Suffering reduction, ACP. | High |
Guideline Pancreas carcinoma. (The Netherlands, 2011) [52] | inpatient/outpatient | 3 EMC: Discussion of illness limitations and prognosis, Patient’s goals, Suffering reduction. | High |
Guideline cervix carcinoma. (The Netherlands, 2012) [53] | inpatient/outpatient | 4 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Suffering reduction, ACP, Involvement of PC team. | High |
Guideline Endometrial carcinoma. (The Netherlands, 2011) [54] | inpatient/outpatient | 2 EMC: Discussion of illness limitations and prognosis, Involvement of PC team. | High |
Guideline Sarcoma carcino-sarcoma uterus. (The Netherlands, 2010) [55] | inpatient/outpatient | 2 EMC: Holistic assessments, Involvement of PC team. | Low |
Guideline Hypo-pharynx carcinoma. (The Netherlands, 2010) [56] | inpatient/outpatient | 5 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Timing of holistic assessments, Timing of PC introduction, Suffering reduction. | High |
Guideline Larynx carcinoma. (The Netherlands, 2010) [57] | inpatient/outpatient | 5 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Timing of holistic assessments, Timing of PC introduction, Suffering reduction. | High |
Guideline Mouth and oropharynx carcinoma. (The Netherlands, 2004) [58] | inpatient/outpatient | 5 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Timing of holistic assessments, Timing of PC introduction, Suffering reduction. | High |
Guideline Breast cancer. (The Netherlands, no date available) [59] | inpatient/outpatient | 4 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Timing of holistic assessments, Suffering reduction. | High |
Guideline Prostate carcinoma. (The Netherlands, 2007) [60] | inpatient/outpatient | 3 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Patient’s goals. | High |
Professional Guideline (Directive) of the Hungarian Public Healthcare. (Hungary, 2013) [61] | inpatient | 10 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Timing of holistic assessments, Patient’s goals, Continuous goal adjustment, Suffering reduction, ACP, Involvement of PC team, Last hours of living care, Grief and bereavement care. | Medium |
Recommendations for the development of an integrative and complex palliative care in Hungary. (Hungary, 2013) [62] | inpatient/outpatient | 8 EMC: Discussion of illness limitations and prognosis, Timing of holistic assessments, Timing of PC introduction, Patient’s goals, Continuous goal adjustment, Suffering reduction, ACP, Grief and bereavement care. | High |
Guidance on Cancer Services: Improving Supportive and Palliative Care for Adults with Cancer. (UK, 2004) [63] | inpatient/outpatient | 9 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Timing of holistic assessments, Patient’s goals, Suffering reduction, ACP, Involvement of PC team, Last hours of living care, Grief and bereavement care. | High |
Making good care better: National practice statements for general palliative care in adult care homes in Scotland. (UK-Scotland, 2006) [64] | outpatient | 8 EMC: Holistic assessments, Patient’s goals, Continuous goal adjustment, Suffering reduction, ACP, Involvement of PC team, Last hours of living care, Grief and bereavement care. | Low |
The diagnosis and treatment of lung Cancer-updated. (UK, 2011) [65] | inpatient | 4 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Timing of holistic assessments, Suffering reduction. | High |
Head and Neck Cancer: Multidisciplinary Management Guidelines. (UK, 2011) [66] | inpatient/outpatient | 7 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Patient’s goals, Continuous goal adjustment, Suffering reduction, Involvement of PC team, Last hours of living care. | High |
Guidelines for supportive care in multiple myeloma 2011. (UK, 2011) [67] | inpatient | 4 EMC: Holistic assessments, Timing of holistic assessments, Suffering reduction, ACP, Last hours of living care. | High |
The NICE Guidance on Supportive and Palliative Care Implications for Oncology Teams. (UK, 2004) [68] | inpatient | 5 EMC: Holistic assessments, Patient’s goals, Suffering reduction, Involvement of PC team, Grief and bereavement care. | High |
Metastatic malignant disease of unknown primary origin. Diagnosis and management of metastatic malignant disease of unknown primary origin. (UK, 2010) [69] | inpatient | 3 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Continuous goal adjustment. | High |
Palliative and End of Life Care Indicators. (UK-Scotland, 2013) [70] | inpatient/outpatient | 3 EMC: Discussion of illness limitations and prognosis, Patient’s goals, ACP. | Low |
Core competencies in palliative care: an EAPC White Paper on palliative care education. Parts 1 & 2. (UK, 2013) [71] | inpatient/outpatient | 8 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Timing of holistic assessments, Patient’s goals, Continuous goal adjustment, ACP, Involvement of PC team, Grief and bereavement care. | Low |
Dying well at home: the case for integrated working: Guide 48. (UK, 2013) [72] | inpatient/outpatient | 7 EMC: Holistic assessments, Patient’s goals, Suffering reduction, ACP, Involvement of PC team, Last hours of living care, Grief and bereavement care. | Low |
RCGP commissioning guidance in end of life care : guidance for GPs, clinical commissioning group advisers. (UK, 2013) [73] | inpatient/outpatient | 7 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Patient’s goals, Continuous goal adjustment, Involvement of PC team, Last hours of living care, Grief and bereavement care. | Low |
Optimising the role and value of the interdisciplinary team: providing person centred end of life care. (UK, 2013) [74] | inpatient/outpatient | 9 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Timing of holistic assessments, Patient’s goals, Continuous goal adjustment, ACP, Involvement of PC team, Last hours of living care, Grief and bereavement care. | Low |
Strategy for adult palliative and end of life care services. (UK, 2013) [75] | inpatient/outpatient | 8 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Patient’s goals, Continuous goal adjustment, Suffering reduction, Involvement of PC team, Last hours of living care, Grief and bereavement care. | Low |
End of Life Care Strategy: Fourth Annual Report. (UK, 2012) [76] | inpatient/outpatient | 3 EMC: ACP, Last hours of living care, Grief and bereavement care. | High |
Matters of life and death: helping people to live well until they die. General practice guidance for implementing the RCGP/RCN end of life care patient charter. (UK, 2012) [77] | inpatient/outpatient | 11 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Timing of holistic assessments, Timing of PC introduction, Patient’s goals, Continuous goal adjustment, Suffering reduction, ACP, Involvement of PC team, Last hours of living care, Grief and bereavement care. | High |
End of life care for adults in the Emergency Department. (UK, 2012) [78] | inpatient | 4 EMC: Discussion of illness limitations and prognosis, Timing of PC introduction, ACP, Involvement of PC team. | High |
CMG42 End of life care for adults. (UK, 2011) [79] | inpatient/outpatient | 11 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Timing of holistic assessments, Timing of PC introduction, Patient’s goals, Continuous goal adjustment, Suffering reduction, ACP, Involvement of PC team, Last hours of living care, Grief and bereavement care. | High |
Commissioning guidance for specialist palliative care : helping to deliver commissioning objectives. (UK, 2012) [80] | inpatient/outpatient | 6 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Timing of PC introduction, Patient’s goals, ACP, Involvement of PC team. | Low |
Commissioning person centred end of life care. (UK, 2012) [81] | inpatient/outpatient | 2 EMC: ACP, Involvement of PC team. | Low |
Quality standard for end of life care for adults. (UK, 2011) [82] | inpatient/outpatient | 8 EMC: Holistic assessments, Timing of holistic assessments, Patient’s goals, Continuous goal adjustment, ACP, Involvement of PC team, Last hours of living care, Grief and bereavement care. | High |
Advanced breast cancer: Diagnosis and treatment. (UK, 2009) [83] | inpatient/outpatient | 3 EMC: Holistic assessments, Timing of holistic assessments, Involvement of PC team. | High |
Review of palliative care services in Scotland. (UK-Scotland, 2008) [84] | inpatient/outpatient | 4 EMC: Holistic assessments, Patient’s goals, ACP, Involvement of PC team. | High |
Living and Dying Well: A national action plan for palliative and end of life care in Scotland. (UK-Scotland, 2008) [85] | inpatient/outpatient | 8 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Timing of holistic assessments, Timing of PC introduction, Patient’s goals, Suffering reduction, ACP, Involvement of PC team. | Low |
Metastatic spinal cord compression: Diagnosis and management of patients at risk of or with metastatic spinal cord compression. (UK, 2008) [86] | inpatient/outpatient | 2 EMC: Holistic assessments, Involvement of PC team. | High |
End of life care. (UK, 2008) [87] | inpatient/outpatient | 5 EMC: Holistic assessments, Patient’s goals, ACP, Last hours of living care, Grief and bereavement care. | Medium |
National Care Standards: Hospice Care. (UK, 2005) [88] | inpatient/outpatient | 2 EMC: Last hours of living care, Grief and bereavement care. | Low |
Clinical Standards: Specialist palliative care. (UK, 2002) [89] | inpatient | 7 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Patient’s goals, Continuous goal adjustment, ACP, Involvement of PC team, Grief and bereavement care. | Low |
Improving outcomes in gynaecological cancer: The Manual. (UK, 1999) [90] | inpatient/outpatient | 2 EMC: Holistic assessments, Suffering reduction. | High |
Cancer pathways | |||
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Title/Country/Year | Setting | Emanuel’s criteria (EMC) | Quality of evidence |
Palliative Medicine: Essays - Reports - Discussion Posts - Comments: Liverpool Care Pathway Practical assistance. (Germany, 2008) [91] | inpatient | 7 EMC: Holistic assessments, Timing of PC introduction, Patient’s goals, Continuous goal adjustment, Suffering reduction, ACP, Last hours of living care. | Very low |
Practice and opportunities of the Hungarian hospice care provided at home. (Hungary, 2013) [92] | Inpatient/outpatient | 8 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Timing of holistic assessments, Timing of PC introduction, Patient’s goals, Continuous goal adjustment, Suffering reduction, Last hours of living care. | Low |
Palliative care pathway in General Practice. (Belgium, 2012) [93] | outpatient | 11 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Timing of holistic assessments, Timing of PC introduction, Patient’s goals, Continuous goal adjustment, Suffering reduction, ACP, Involvement of PC team, Last hours of living care, Grief and bereavement care. | High |
Integrated Oncological Pathways: prostate carcinoma. (The Nederlands, 2010) [94] | inpatient/outpatient | 5 EMC: Discussion of illness limitations and prognosis, Holistic assessments, Suffering reduction, Involvement of PC team, Last hours of living care. | Medium |
Integrated Oncological Pathways: colon-rectum carcinoma. (The Nederlands, 2010) [94] | inpatient/outpatient | 4 EMC: Timing of PC introduction, Suffering reduction, Involvement of PC team, Last hours of living care. | High |
Flow chart glioblastoma. (The Nederlands, 2012) [96] | inpatient/outpatient | 4 EMC: Timing of holistic assessments, Timing of PC introduction, Involvement of PC team, Last hours of living care. | Very Low |
Manual for the management of patients in palliative care in outpatient ER. (Spain, 2011) [97] | outpatient | 4 EMC: Discussion of illness limitations and prognosis, Timing of PC introduction, Suffering reduction, Last hours of living care. | Low |
Home care program in primary care. (Spain, 2004) [98] | outpatient | 6 EMC: Holistic assessments, Timing of PC introduction, Suffering reduction, Involvement of PC team, Last hours of living care, Grief and bereavement care. | Very low |
Integrated care process of Palliative Care. (Spain, 2007) [99] | inpatient/outpatient | 7 EMC: Holistic assessments, Timing of PC ntroduction, Suffering reduction, ACP, Involvement of PC team, Last hours of living care, Grief and bereavement care. | High |
Palliative care in the oncologic patient. Documents for integrated care processes related to cancer management. (Spain, 2005) [100] | inpatient/outpatient | 4 EMC: Holistic assessments, Suffering reduction, Involvement of PC team, Grief and bereavement care. | Very low |
Care pathway for the last days of life. (UK-Wales, 2004) [101] | inpatient | 8 EMC: Holistic assessments, Patient’s goals, Continuous goal adjustment, Suffering reduction, ACP, Involvement of PC team, Last hours of living care, Grief and bereavement care. | Very low |
The route to success in end of life care: achieving quality for social work. (UK, 2012) [102] | inpatient/outpatient | 8 EMC: Holistic assessments, Patient’s goals, Continuous goal adjustment, Suffering reduction, ACP, Involvement of PC team, Last hours of living care, Grief and bereavement care. | Low |
Quality in melanoma care: a best practice pathway. (UK, 2012) [103] | inpatient/outpatient | 4 EMC: Holistic assessments, Patient’s goals, ACP, Involvement of PC team. | High |
Derbyshire End of Life Care Guidance: a pathway for supporting people in the last year of life. (UK, 2010) [104] | inpatient/outpatient | 8 EMC: Holistic assessments, Timing of holistic assessments, Patient’s goals, Suffering reduction, ACP, Involvement of PC team, Last hours of living care, Grief and bereavement care. | Low |
Results
IPC criteria | Clinical practice guidelines on palliative Care-Spain [42]. | Guideline on the palliative care -Hungary [61]. | Palliative care pathway in General Practice Country- Belgium [93]. | General guidance RCGP/RCN- UK [77]. | CMG42 End of life care for adults-UK [79]. |
---|---|---|---|---|---|
Discussion of illness limitations and prognosis. | Communication should be based on patients’ and their family‘s needs rather than the expected survival time. | Information about the illness, decision making, and discussions about death should be based on the patient’s needs. | Description of surprise question and Palliative Performance Scale (PPS) to define prognosis or when to enter PC services. | Open and honest communication. Identification of triggers for discussion. Shared decision making. | Open communication and offering of information taking in account always the patient’s and family’s needs. |
Holistic assessment. | Integral, frequent assessment in a multidisciplinary, individualized manner for: symptoms, pain, opioids use, spiritual needs, grief. | Whole patient assessment should include physical, psychosocial, and spiritual dimensions, according to the nature of the illness. | Recommendations on how to assess patients and how to deal with their physical, emotional, psychological, social and spiritual issues. | Holistic approach: physical, psychological, social, practical and emotional, religious and spiritual support. | Holistic approach: physical, psychological, social, emotional and spiritual support. Use of the Gold Standard Framework (GSF). |
Timing for holistic assessments | Not included | assessment takes place at the first appointment. Further assessments depends on changes in the disease trajectory. | Whenever the patient is seen by the GP or nurse using the ‘distress thermometer’. | At any time of day or night for physical and psychological support and as long as possible for the social participation. | At any time of day or night for physical and psychological support and as long as possible for the social participation. |
Timing for PC introduction | Interventions based on the patients &their family’s needs. PC services should be guaranteed when necessary. | Not included | Surprise Question: “Would you be surprised if your patient were to die in the next months, weeks, days?”. | Ask the Surprise Question “Would you be surprised if the patient were to die in the next months, weeks or days?”. | Timely access to generalist and specialist PC services on the basis of need and not diagnosis. |
Patient’s goals assessments | Decision-making should be enhanced through the life goals and personal values. | Patient’s goals for care should be brought to light. | At the time of the holistic assessment, patients goals need to be assessed too. | Regular review of patients’ and carers’ needs and preferences. | Open conversations and clear expression of the end-of-life patients and their needs. |
Continuous goal adjustment. | Needs on information and preferences of the patient should be assessed regularly. | Patients have the right for modifying the plan based according to their needs. Interventions should be adapted to patient’s goals. | Whenever there are changes in the disease trajectory patients goals need to be reassessed. | Discussions with patients and their carers about their future needs. This should be done as often as it feels that is needed. | Patients and carers should be offered holistic assessments in response to their changing needs and preferences. |
Suffering reduction | Evaluation of the pain, instructions and involvement of patient in the use of analgesics and opioids depending of the pain stage and features. | Medical aspect of PC & applicable therapies, special treatments &interventions to reduce suffering (physical, psychosocial symptoms). | Based on an overview of needs of PC patients (study done by the Federal Knowledge Center), several caring goals to reduce suffering are given. | Should meet physical and psychological needs at any time of day or night, including access to medicines and equipment. | End of life patients should have their physical and psychological needs met at any time of day or night, including access to medicines and equipment. |
Advance care planning (ACP). | Explore patient’s wishes and goals. Previous guidelines, wishes of the patient saved in his clinical records, legal and the nearest in charge relatives should be considered. | Patients have the right to information and autonomy/self-determination, refusal of treatments, & the process of making a living will | ACP can be done through 3 models (Covenant model, contract model or DNR code) and there are guidelines for urgent and non-urgent ACP. | Help the patients identify the choices that they may face, assist them to record their decisions and ensure that their wishes are fulfilled. Recognition of wishes for resuscitation, organ donation and place of death. | Increasing choice and personalization through ACP including advance decisions to refuse treatment and provision of resources that enable these choices. |
Involvement of PC team. | Training of professionals to provide basic PC should be promoted; PC at any level should be provided preferably, by a multi-disciplinary team. | Implemented by a multi-disciplinary team; physicians, nurses, psychologists, mental health counsellors, social workers, clergymen. | If prognosis of <12 m, a multidisciplinary consultation will be organized between different health care professionals including PC. | Multidisciplinary generalist and specialist PC services should provide care over a 24 h period for people approaching the end of life. | Specialist multidisciplinary PC team should be responsive to emergency need and able to admit people approaching the end of life at any time |
Recommendations on care during the last hours of living. | Recommendations include information, explanations, symptoms treatment, care continuity and holistic approach. | Symptoms and signs of death, reducing medication, nutrition, and fluid intake during the last hours of life. | Contains a separate section on how to identify the dying phase, communication, support, symptom control. | Identification of the dying phase (use of Patient Charter). Support for patient and carer. Use of the Liverpool Care Pathway. | Co-ordinated care across all relevant settings at any time, based on the person’s current medical condition, advance care planning and preferences. |
Grief and bereavement care recommendations. | Identification of bereavement risk; interventions according to the nature of the grief, with professionals trained to deal with these issues. | Methods, aims and outcomes of bereavement counselling are described in the guideline. | Consultation after death, differentiation between depression, normal and complicated grief. | Timely verification and certification of death. Practical and emotional bereavement support for carer or family. | Immediate and ongoing, emotional, bereavement & spiritual support as appropriate to the needs and preferences of the carer/family. |