Table 5 Top 5 ICP guidelines and pathways

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.