Ageing
5. End of life
5.2. 13 norms to secure good care with life ending
In this section, a summary of ‘Consensus Norms for Palliative Care of People with ID in Europe’, is presented (1: 6-12).
ACTIVITIES:
- Read the norms and select those sentences that are especially related to your child/sibling/client's situation.
- Use the list you have made and ask: How can this be made possible in the country I live in?
1. Equity of access
1a People with ID should have equity of access to the palliative care services and supports that are available in their country.
1b Services and professionals who support people with ID in their daily lives should ensure that they have equal access to available palliative care services when they need them, by referring them to such services.
1c Ensuring equity of access may mean making changes to the services provided. Palliative care services should make the necessary adjustments to enable people with ID to access their services and support.
2a People with ID may have a range of specific communication needs. The communication needs of people with ID should be recognised and taken into consideration.
2b Professionals and formal carers have a responsibility to strive to understand the communication of people with ID, and to seek the necessary training for this.
2c People with ID should be supported to communicate their needs in the best possible way, whether verbal or non-verbal.
3. Recognising the need for palliative care
3a All health and social care professionals caring for people with ID must be able to recognise when palliative care is needed, whether the person is in the family home, in an institutional setting or in single or shared homes in the community. They must be alert to the signs and symptoms of serious illness, end of life and the dying phase.
3b When a need for palliative care is identified for an individual, a person-centred plan should be put into place to instigate palliative care support.
4. Assessment of total needs
4a The needs of people with ID at the end of life include physical, emotional, social and spiritual needs, similar to those of the rest of the population.
4b All physical, psychological, social and spiritual needs should be assessed, documented, addressed, evaluated and reviewed.
4c People with ID may have additional and special palliative care needs as a result of their impairment. This should also be recognised and addressed.
4d People with ID should have equity of access to support for those needs. This includes access to appropriately tailored counselling services, and support in maintaining social links, including links with friends (who may have special support needs themselves).
5. Symptom management
5a Management of symptoms associated with the end of life is of the utmost importance.
5b Assessment of pain and other symptoms can be more difficult when people have ID. Symptoms may be masked or expressed in unconventional ways, for example through behavioural changes (including behaviour which may be seen as ‘challenging’) or withdrawal.
5c Professionals should be aware of the possibility of ‘diagnostic overshadowing’, where the symptoms of physical ill-health are attributed to the presence of ID, and therefore not treated or managed.
5d Those who care for a person with ID at the end of life (whether this is a professional, or untrained care staff, or families) should be supported in recognising symptoms, including pain.
5e Medical professionals should be aware that symptom management of people with ID may be more complex due to comorbidities.
5f Collaboration between those who know the person well and those who are experts in symptom management is crucial in ensuring adequate symptom management for people with ID.
6. End of life decision making
6a End of life decision making is complex, regardless of whether or not the person has disabilities.
6b People with ID have a right to life, and a right to recognition of the value of their lives.
6c Legal frameworks around capacity and decision making vary. Professionals should be aware of national and local laws and regulations, and these should be adhered to.
6d People with ID should be assumed to have capacity to make decisions around their care and treatment, unless it is demonstrated otherwise.
6e People with ID should have all the necessary support, including advocacy, in order to enable their involvement in end of life decision making.
7. Involving those who matter: families, friends and carers
7a The important relationships (‘significant others’) of people with ID should be identified. This could include family, partners, friends, carers (including paid care staff) and others. People with ID should be involved in identifying these significant others.
7b Significant others should be encouraged, if they wish, to be as involved as possible at the end of life.
7c The person’s closest carer(s) are likely to know him/her best. For many (but not all) people with ID, this is their family, who have often been their carers for many years or decades. Professionals should respect and involve the carers as expert care partners.
7d For people with ID, family bonds may be crucially important at the end of life. This may be the case even where these bonds have been broken through lack of contact.
7e Family bonds that are important to the person with ID should be recognised and respected by professionals and care staff.
7f The person’s wishes around involving their families at the end of life should be sought and respected.
8. Collaboration
8a Collaboration between services is key to successful provision of palliative care to people with ID.
8b Anyone (and any services) with expertise to offer at the end of life should be identified as early as possible in the care pathway, and involved if there is a need. This can include professional service networks, paid care staff, informal (family) carers and spiritual leaders.
8c It is of crucial importance that people with ID have access to medical and nursing professionals, including support and advice from palliative care experts if needed.
8d All these individuals and services should collaborate with each other and share their expertise when required for the benefit of the person with ID.
9. Support for families and carers
9a Families and carers (including paid/professional care staff) are often deeply affected when someone with ID reaches the end of life. They should be supported in their caring role.
9b Many people with ID, including those with severe and profound ID, are at the centre of their family’s and carer’s life. The death of someone with ID is often a significant and difficult loss for those around them.
9c Families should have recognition and support for their loss.
9d Professional carers may not be expected to grieve, but have often formed deep attachments to the people they support. They, too, should be supported in their loss, including training on self-care for those working with people who are dying.
10. Preparing for death
10a Opportunities should be provided to involve people with ID in advance care planning, where appropriate and desired. This includes discussions and recording of choices regarding preferences for end of life care, funeral wishes and wills.
10b Such discussions could take place as early as is appropriate. They could take place before the need for palliative care arises.
10c Once the need for palliative care has been identified, carers and professionals should put into place a care plan, anticipating future holistic needs for treatment and care. The wishes of the person with ID should be incorporated in this plan.
10d Where families are not routinely responsible for funeral arrangements, professionals and care services should recognise the role of the family in organising the funeral, and provide the family with the necessary support to do so.
11. Bereavement support
11a People with ID experience loss and grief, just like the rest of the population (although they may express it differently).
11b People with ID are at a higher risk of complicated grief than the rest of the population. Those who support and care for them should be alert to the possibility of complicated grief reactions.
11c Those who support and care for people with ID should also be aware of any available mainstream and specialist bereavement support services to which they can refer people with ID, if necessary.
11d People with ID should be offered the opportunity and necessary support to attend funerals.
12. Education and training
12a Staff training: Carers and professionals involved in supporting people with ID at the end of life should be trained in order to deal with their specific needs. This includes training on death, dying and palliative care for staff working in ID services, and training on ID for staff working in palliative care services.
12b Death education for people with ID: Throughout their lives, people with ID should not be protected from information and discussions about illness, death and dying. This could, for example, include sessions at Day Centres or special education facilities, as well as discussions at home. Families and carers should be given help and support in encouraging such discussions.
13. Developing and managing services
13a Policy makers should prioritise equitable palliative care for people with ID.
13b Policy makers should commit adequate resources to the provision of palliative care for people with ID.
13c Organisations providing care services for people with ID should plan for the provision of palliative care for them.
13d Organisations providing palliative care services should plan for the inclusion of people with ID among their case load. This includes planning for adequate space, equipment, staffing and the provision of expertise.