End of Life Care Map.
This End of Life care map is provided as a guide to assessment and care planning for end of life needs and how the Care Monitor ™ tools can assist in this process. However, nursing staff need to take cognisance of local policy and procedures as well as HIQA standards and regulations for end of life care.
Assessment for End of Life Needs.
The Health Information and Quality Authority (HIQA, 2013) in their end of life guidance to providers state that once a resident has been recognised as approaching the end of life, he or she should undergo a prompt, initial holistic assessment. Once commenced, assessment is an ongoing and proactive process which is both planned and responsive. A holistic assessment includes physical, social, emotional, spiritual and cultural considerations. These should relate to the preferences and needs of the resident as well as associated treatment, care and support.
Timing of Assessment.
In determining when a resident is approaching the end of life, HIQA make the following points:
- Many older people have an advanced, progressive, life-limiting illness whose condition deteriorates over an extended period of time with a long lead time to death. However, the General Medical Council (2010) defines approaching the end of life as when a person is likely to die within the next 12 months. In that context it may be worth considering the question ‘Would I be surprised if this person died in the next 12 months?’ If the answer to this question is no, the next question then is ‘What do I need to do now for this person? It is worth considering whether advice from specialists is needed, e.g. gerontology, psychiatry of old age and palliative care services.
- The 12-month time frame provides a guide as to when people might be recognised as approaching the end of life. However, for some conditions, the trajectory may require recognition and subsequent planning to happen earlier. For others, it may not be possible to identify people until nearer the time of death. However, identification should take place with sufficient time to enable provision of high quality end-of-life planning, care and support in accordance with the resident’s needs and preferences.
- For some conditions, it may be worth considering evidence-based prognostic indicators, where available. These are specific clinical indicators related to certain conditions and are designed to help with the earlier identification of people nearing the end of their life and/or who may need additional support (refer to the UK’s GSF Prognostic Indicator Guidance).
- If a resident has a condition which will progressively impair their capacity, or is otherwise facing a situation in which loss or impairment of capacity is a foreseeable possibility, they should be sensitively encouraged to think about what they might want for themselves should this happen, and to discuss their wishes and concerns with members of their healthcare team.
Care Planning
With regard to care planning for end of life needs, HIQA (2013) make the following points:
- Advance care planning is the process of discussion between the resident and his or her care providers about future medical, social, emotional and spiritual preferences, in the event that the person cannot speak for him/herself due to serious illness or emergency. It is a proactive approach which provides timely access to safe and efficient care which meets the individualised needs and preferences of residents approaching end of life.
- As care often involves multidisciplinary teams working across acute, secondary and primary care services, advance care planning facilitates timely access to coordinated, safe, effective care delivery to meet the resident’s needs. The emotional distress and other pressures inherent in situations in which residents are approaching the end of their life sometimes lead to misunderstandings. However, this can usually be avoided through early, sensitive discussion and planning about how best to manage the resident’s care.
- The care plan should be documented and regularly reviewed with the resident.
- The care plan should include:
The resident’s wishes and choices regarding end-of-life care, which should be implemented as far as possible
The resident’s values, concerns, fears and personal goals for care
The resident’s understanding of their illness and prognosis
The resident’s physical, social, emotional, spiritual and cultural needs
Family members and friends as designated by the person as well as any legal proxies that the resident would like to be involved in decisions about their care
The resident’s preferred place of care and death including the option of a single room or returning home – depending on services available to support this
what do to if there is a change in the resident’s condition which should include when a resident should or should not be transferred to an acute hospital, interventions which may be considered or undertaken in an emergency, such as antibiotics, percutaneous endoscopic gastrostomy (PEG) tubes and cardiopulmonary resuscitation (CPR) any other matter which the resident considers important.
Using Care Monitor to Assist with End of Life Care Planning.
Residents will have different needs depending on the stage of their illness. During the early and palliative care stages of the illness, assessment of residents’ needs and care planning can be recorded under each of the domains. These include the resident’s physical, social, emotional, spiritual and cultural needs as they apply in each of the domains. The end of life care plan in the end of life domain could then include the following additional requirements identified by HIQA (2013):
- The resident’s known wishes and choices regarding end-of-life care, which should be implemented as far as possible
- The resident’s values, concerns, fears and personal goals for care
- The resident’s understanding of their illness and prognosis
- Family members and friends as designated by the person as well as any legal proxies that the resident would like to be involved in decisions about their care
- **The resident’s preferred place of care and death including the option of a single room or returning home – depending on services available to support this
- **What do to if there is a change in the resident’s condition which should include when a resident should or should not be transferred to an acute hospital, interventions which may be considered or undertaken in an emergency, such as antibiotics, percutaneous endoscopic gastrostomy (PEG) tubes and cardiopulmonary resuscitation (CPR) any other matter which the resident considers important.
** Decisions regarding medical interventions would need to have supporting documentation, such as a record of discussions that took place with the resident’s general practitioner/ attending consultant and the outcomes of these discussions, as well as who was involved in the decision making. Decisions regarding medical interventions should be undertaken by the resident’s physician in accordance with the National Consent Policy (2013).
**The nursing end of life care plan should refer to meetings that took place and outcomes and where these are recorded and filed.
Palliative Care Needs Assessment and Care Planning.
When the resident has indicators of the need to move to a palliative care stage and subsequent discussions have confirmed the move to palliative care, the palliative care needs assessment can be completed and used to direct / update care plans in each of the domains, including updating the end of life care assessment and care plan. For example, it may only be at this stage that specific medical interventions are discussed and decisions made based on the discussions with the resident and or family in consultation with the residents GP and / or palliative care team.
Assessment and Care Planning for a Resident who is in the Terminal/Dying Stage.
A Terminal Care Plan is provided for a resident who is in the last days of their life. It includes an assessment of needs; symptom assessment and monitoring; daily care recording; care plan and nursing narrative notes. All previous records are still available if the Terminal Care Plan is being used.
The following End of Life Care Map provides guidance and examples for End of Life assessment and care planning.
End of Life Risks | |
Example of Risk | Nursing Prompts |
The resident is at risk of seizures due to cerebral metastases. | This could be included under ‘Special Treatments and Procedures’ domain and referred to in the ‘End of Life’ domain or the ‘Terminal Care Plan if the resident is in the final days. Provide information about the type of seizures and frequency that the resident experiences. Identify any types of medications prescribed to prevent seizures. Include any instructions from the resident’s GP/Palliative care team. Identify first aid management when the resident has a seizure and aftercare following the seizure. |
Sample Care Plan for Risk. | Interventions. |
Mary is at risk of seizures because of cerebral metastases. To prevent seizures and to prevent injury or harm in the event of Mary having a seizure. | Mary has experienced grand mal seizures because of cerebral metastases. She is currently on medications to control her seizures and has not had a seizure since commencing medications. |
Sample End of Life Domain Care Plan. | |
Problem(s) Mary is at the advanced stages of dementia and requires management of symptoms associated with advanced dementia. | |
Goal(s). To main Mary’s comfort. To manage Mary’s symptoms To ensure that Mary’s physical, social, emotional and cultural needs for end of life care are addressed in accordance with her known wishes. | |
Care Plan Mary is unable to communicate her understanding of her illness due to cognitive impairment. She has an MMSE of 27. She has not previously completed any form of advance care planning and is unable to communicate her preferences for end of life care. Her family have a very good understanding of her illness and prognosis and have been involved in her care planning for future needs. | |
A meeting took place with Mary’s family, her GP, the Director of Nursing and members of the palliative care team on 1st August 2012 and it was decided that the goal of care for Mary was to provide palliative care. Mary’s family stated that they are happy for Mary to be cared for in the nursing home and their preference is for Mary not to be transferred to hospital in the event of a sudden deterioration in her condition. A record of the meeting is under the Care Plan meeting section and decisions regarding medical interventions are recorded in the GP’s notes section. A DNAR form has been completed for Mary by her GP in consultation with her family. Mary’s daily care needs are recorded in the other domains. She has specific needs related to anorexia and dysphagia, which are addressed in her nutrition and hydration assessment and care plan. Mary also has recurrent respiratory infections and is at risk of aspiration pneumonia and these are addressed in her breathing assessment and care plan. She is doubly incontinent and unable to mobilise without assistance and therefore at high risk of developing pressure ulcers and incontinence lesions. Her care needs related to these problems are addressed in her elimination, mobility and skin condition care plans. Mary’s daughter, Carmel visits Mary every day and has been designated by her family as the main contact person for care planning. Carmel also assisted staff in modifying Mary’s room so as to create a more peaceful environment for her. This included bringing in some of her favourite religious pictures and statues. Carmel also recites the rosary with Mary every day as this was always part of Mary’s daily routine. Her parish priest visits once a week to give her a blessing and say prayers with her. | |
References
- Health Information and Quality Authority (2009) National Quality Standards for Residential Care Settings for Older People.
- Health act 2007 (care and welfare of residents in Designated centres for older people) regulations 2009 ).
- Health Information and Quality Authority (2013) Regulatory Guidance for Residential Services for Older People: End of Life Care Requirements.
- Gold Standards Framework, UK. (2011) The GSF Prognostic Indicator Guidance: The National GSF Centre’s guidance for clinicians to support earlier recognition of patients nearing the end of life.
- Competence and Compassion, End-of-Life Care Map, (2013). The Irish Hospice Foundation/HSE.
- National Council on Ageing and Older People (2008) End of Life Care for Older People in Acute and Longstay Settings accessed www.ncaop.ie
- National Council for Palliative Care (2007) Building on Firm Foundations. Improving end of life care in care homes: examples of innovative practice.
- NICE Guidance Chronic obstructive pulmonary disease – Management of chronic obstructive pulmonary disease in adults in primary and secondary care Clinical Guidance 12, February 2004 www.nice.org.uk/Guidance/CG12
- NHS, 2010. Chronic Obstructive Information Pack.