Identification of palliative and end of life care needs. Discussion as end of life approaches. Assessment and care planning

Transcription

1 Identification of palliative and end of life care needs Go to NHS cancer guidance Discussion as end of life approaches Assessment and care planning Delivery of high quality services in different settings Psychological and emotional care Social care Spiritual care Communication and information Physical care Go to psychological symptoms management Coordination of care Go to management of physical symptoms Review and reassessment Recognition of approaching death Go to terminal phase Page 1 of 7

2 1 Identification of palliative and end of life care needs Scope: generic and common aspects of palliative care in adults, ie. care that has as its objective improving the quality of life and the patient's ability to cope, rather than cure of disease young adults with life limiting conditions since childhood the pathway applies to and is shared across the primary and secondary care interface at any stage primary, secondary and tertiary care providers may (and often should) be involved (see National End of Life Care Programme) Definition and principles: palliative care is particularly important in the following situations: when cure is no longer a goal care at the end of life control and reduction of physical symptoms support for psychological and spiritual issues help with social and practical problems bereavement care for family or carers after patient dies effective palliative care requires excellent communication, coordination and continuity of care across multidisciplinary teams (MDT) with different specialist expertise in all sectors, including the following: patient, family and carers medical and nursing professionals allied healthcare professionals social services end of life care is care that: helps all those with advanced, progressive, incurable illness to live as well as possible until they die enables the supportive and palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support (National Council for Palliative Care, 2006) consultation with the specialist palliative care team should be undertaken at any stage if symptoms or problems are not adequately controlled References: Department of Health. National Service Frameworks for: Older people (2001) Renal Services - Part Two: Chronic kidney disease, renal failure and end of life care (2005) Coronary Heart Disease (2000) Long term conditions (2005) 2 Discussion as end of life approaches It is important that patients are aware of significant changes in their condition, including the approach of the end of life. Patients have the right to know about their illness, to respect their autonomy and enable them to make informed decisions about future care. It should, however, also be remembered that patients may chose not to know. Recommendations for communicating significant news: physical and social setting: location: quiet, comfortable, private structure: convenient time, no interruptions, enough time available in person, face to face, make eye contact, avoid physical barriers people: support network: identify and have present at patient s request message: Page 2 of 7

3 what is said: preparation - give a warning shot ( I m afraid I have bad news ) find out what the patient already knows give information on current situation and future plan acknowledge and explore patient s reaction and allow for emotions to be expressed allow for questions summarise the discussion - verbally and/or in written form or audiotape of consultation how it is said: emotional manner: warm, caring, empathetic, respectful language: simple, careful word choice, direct, no euphemisms or technical diagnostic terminology, avoid medical jargon give news at person s pace, allow them to dictate what they are told It should be remembered that the communication of the significant news is not a one-off event but an ongoing process to support the patient and their family/carers to adjust to the information being given. References: Referral for suspected cancer - A clinical practice guideline. NICE, Communicating Significant News: Key principles and top tips.north East London Cancer Network, Assessment and care planning assess needs in the following domains: communication and information physical care social care psychological care spiritual care discuss options with patient, family and carers and formulate action plan to meet identified needs, ensuring that this is appropriate to individual needs key points may need to be written down for patient and family ensure effective communication and avoid duplication the outcome of the assessment should be shared with all involved with the patient (including patients, family, carers, healthcare professionals, social services, voluntary agencies): use advocates or independent interpreters where necessary avoid using family members (particularly children) to interpret advance care planning: the patient should be offered the opportunity to complete an advance care plan describing preferences and priorities for the future e.g. the preferred place of death this may be a legal advance decision or an informal expression of wishes References: The Mental Capacity Act Crown, Planning for your future care: A guide. National End of Life Care Programme; The National Council for Palliative Care; the University of Nottingham, Advance Care Planning: A guide for health and social care staff. National End of Life Care Programme; The National Council for Palliative Care; the University of Nottingham, Advance Decisions to Refuse Treatment: A guide for health and social care professionals. NHS End of Life Care Programme & the National Council for Palliative Care, Delivery of high quality services in different settings people approaching the end of life require care in a variety of different settings, including: acute hospitals the community (mainly in a person s home) Page 3 of 7

4 care homes and sheltered and extra care housing hospices community hospitals ambulance services prisons and secure hospitals hostels for the homeless all health and social care staff working in these areas have an important role to play in the provision of end of life care the end of life care workforce can be divided into three broad groups and each staff group must have the necessary knowledge, skills and attitudes to fulfil their roles effectively: staff working in specialist palliative care and hospices who essentially spend the whole of their working lives dealing with end of life care staff who frequently deal with end of life care as part of their role staff working as specialists or generalists within other services who infrequently have to deal with end of life care 5 Psychological and emotional care Psychological symptoms are common and often not recognised and addressed, which can have a significant impact on quality of life. They include: anxiety anger depression denial coping confusion Oxford Textbook of Palliative Medicine, 3rd edition. Oxford University Press, Oxford Handbook of Palliative Care, 2nd edition. Oxford University Press, Social care social problems may require referral to social services or to specialist services (e.g. Citizens Advice Bureau) these may include: difficulties with personal care, shopping, cleaning and care for other family members that the patient previously looked after financial problems including access to state benefits problems with housing home adaptations or equipment to promote independence and dignity education or employment issues need for day care and respite care support and advice for carers, including the opportunity to have a formal carers assessment Carers at the heart of 21st century families and communities: a caring system on your side, a life of your own. Department of Health, Spiritual care be prepared to explore spiritual issues such as the: meaning and purpose of illness, death and 'unfinished business'; patients' need for dignity; need for hope; and patients' feelings of self worth and identity Page 4 of 7

5 many patients view spirituality as a mechanism for coping with their health identify patients' support already in place, eg. faith groups consider referral to chaplain, religious leader or spiritual support group, according to patient preferences quiet space and appropriate facilities should be available for religious ceremonies close to and after death staff should be aware of specific requirements for care before and after death e.g. early registration of death for people of Jewish and Muslim faiths NHS Chaplaincy: Meeting the Religious and Spiritual Needs of Patients and Staff. Department of Health, Religion or Belief: a Practical Guide for the NHS. Department of Health, Communication and information Effective communication is central to the identification of patients' specific needs, preferences, and priorities. Good communication can lead to improvements in psychological adjustment, decision-making, treatment compliance and satisfaction with care. Consider: the use advocates or independent interpreters where necessary not using family members (particularly children) to interpret Understanding and recall can be improved by: giving clear, specific information explaining medical terms and avoiding medical jargon presenting information in terms of the specifics for each patient, rather than in general format giving the most important information first repeating and summarising important pieces of information actively encouraging questions actively checking understanding Additional strategies to increase satisfaction, recall and understanding include: providing written information providing general information tapes taping of consultation sending a summary letter as a follow-up to the consultation encouraging the presence of a support person (healthcare professional, family or friend) Patients and carers may also benefit from additional information given in consultations, such as: patient information leaflets relevant website addresses numbers for telephone help lines contact details of self-help groups Referral for suspected cancer - a NICE clinical guideline. National Institute for Health and Clinical Excellence 9 Physical care common physical symptoms include: pain breathlessness nausea and vomiting constipation confusion and delirium anorexia incontinence sleeplessness pressure sores Page 5 of 7

6 fatigue and functional difficulties dry mouth difficulty swallowing healthcare professionals should be able to recognise and respond appropriately to medical emergencies professionals and lay carers should be alert to complex problems, for which referral to the specialist palliative care team may be appropriate Oxford Textbook of Palliative Medicine, 3rd edition. Oxford University Press, Oxford Handbook of Palliative Care, 2nd edition. Oxford University Press, Coordination of care palliative care requires excellent communication, coordination and continuity of care across multidisciplinary teams (MDT), with different specialist expertise in all sectors, including the following: patient, family and carer medical and nursing professionals allied healthcare professionals social services identify a key worker, who is conversant with all aspects of the action plan, to act as a hub for communications ensure that the patient, family and carers know how and when to contact the key worker use of end of life care registers, such as the Gold Standards Framework, will support coordination of care The Gold Standards Framework: A Programme for Community Palliative Care. Department of Health and Keri Thomas, Review and reassessment Regular review and reassessment of patient needs is required to ensure ongoing appropriate management of symptoms. Reassessment should follow the pathway described above. 12 Recognition of approaching death ensure that all possible reversible causes have been considered and that the multidisciplinary team (MDT) is in agreement that the patient is dying factors that may herald that the phase of dying has commenced are: increased need for help with activities of daily living less able to take tablets or difficulty in swallowing not eating and with poor or absent fluid intake increasing weakness and lethargy reduced level of consciousness, less alert and reduced response to verbal commands increased confusion, restlessness or agitation increasing shortness of breath and noisy breathing incontinence or urinary retention in such circumstances further invasive procedures that would provide no clear benefit would be futile and should be avoided to prevent unnecessary distress to the patient the preferred place of death should be discussed at this time and due consideration given to the most appropriate options National Institute for Health and Clinical Excellence (NICE). Improving supportive and palliative care for adults with cancer - the manual. London: NICE; Page 6 of 7

7 Key Dates Due for review: 31-Aug-2009 Locally reviewed:, by Updated: 17-Jul-2009 Page 7 of 7