How can palliative care be more accessible for people with intellectual disabilities?

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People with intellectual disability are facing increasing rates of life-limiting illnesses, such as cardio-vascular diseases, respiratory diseases and cancer, but are under-referred to palliative care services. Although people with intellectual disability face the same challenges as other people at the end of their life, they may have additional needs due to their disability.

Key Points

  • While the principles of palliative care remain the same no matter who the patient is, special considerations need to be made when a patient has an intellectual disability

  • Identifying barriers to palliative care is essential in providing the best person-centred palliative care

  • Research shows that people with intellectual disabilities receive the best end of life care if palliative care services and intellectual disability services collaborate

What is palliative care?

Palliative care is the treatment, care and support for people living with a life-limiting illness. This is an illness that can’t be cured and that you’re likely to die from. Life-limiting illnesses can include:

  • Motor neurone disease

  • Cancer

  • Dementia

  • End-stage kidney disease

Palliative care aims to ease the suffering of patients and those around you – such as friends or family – and helps you live as fully and comfortably as possible with a terminal illness. This involves making sure you receive the care you need to live well and can include:

  • Managing pain and other physical symptoms

  • Personal care, including help with eating, drinking, dressing or washing

  • Social care, including assistance with keeping connected to the community and going to events

  • Emotional, psychological and spiritual support

  • Counselling and grief support

  • Support to meet cultural obligations

  • Help encouraging families to talk about sensitive issues

  • Referrals to respite care services

Barriers to palliative care

People with an intellectual disability have an average life expectancy 26 years shorter than the general population, which is in part due to problems accessing health care. However, people with intellectual disabilities have the same needs as the general population. All people deserve the right to a quality of life that includes management of pain, spending time with friends and family, and the right to have your choices and decisions around treatment and care respected.

However, people with intellectual disability may have additional needs and unique challenges, issues and circumstances that may impact the ability to meet those needs. This can include:

  • Communication difficulties which make it challenging to participate in decision-making about their care

  • Multiple health issues

  • Complex behavioural or psychiatric issues

  • Difficulties accessing healthcare systems

  • Different ways for expressing pain or difficulty describing symptoms

  • Changing family and social circumstances

  • Later diagnosis resulting in reduced treatment options

  • Vulnerability and social isolation

  • Barriers to care created by community attitudes

Identifying and addressing these challenges and needs is essential in providing the best person-centred palliative care.

Why do these differences matter?

For some people with intellectual disability, determining the need for palliative care can be difficult to recognise. This is also complicated by the fact that people with an intellectual disability can have a number of different, interacting health issues.

Those with congenital conditions can have complex health problems throughout their lives, so it can be hard to determine when the ongoing management of these chronic conditions turns into a need for palliative care.

Also, when patients start accessing palliative care, it is often assumed that their various needs and vulnerabilities can be accommodated and understood within routine standards of practice. However, people with intellectual disabilities have varying and unique support needs, so it is vital to view and treat each case on an individual basis.

Who should be involved in the process?

A specialist intellectual disability team should work with a palliative care team to fulfil the person’s care needs and desires.

This might include specialist nurses, social workers and psychologists who can assess the person and help to adequately meet their own needs, as well as those of their friends and family.

People with intellectual disabilities themselves have specified how important it is for them to have familiar people with them at the end of their life.

Health professionals need to appreciate and understand the nature of relationships that their patients have with their family, close friends and carers.

Supporting decision making

Doctors must act in the best interests of their patients if they cannot choose for themselves, just as parents and carers should be thinking about their person with disability and what they would want.

It is also important to remember that capacity is situation and decision-specific. This means that it may be possible for a person with an intellectual disability to have the capacity to decide on one aspect of care or treatment at one time, but lack capacity for another decision or on a different occasion.

It is essential that a person with intellectual disability has access to information in a format they can understand, however, it is also important to assess their capacity to make each decision.

Questions need to be answered directly and honestly, however it’s also important to try and use the patient’s vocabulary or preferred method of communicating. Support the person with disability’s ability to make decisions for themselves wherever possible and allow plenty of time to communicate in the way that is most appropriate for that person.

A person with disability’s care team should be working together with their doctor and palliative care team to get the best possible outcome.

Collaboration is key

Research shows that people with intellectual disabilities receive the best end of life care if palliative care services and intellectual disability services collaborate.

It is important to establish who will be coordinating the person with disability’s care. Proactive support services and effective facilities are needed to help manage the circumstances.

Consent issues also need to be front of mind and it is essential that the patient is kept at the centre of any decision-making. This can only be achieved if everyone involved in the patient’s care, including the family, carers and advocates, share information and cooperate closely.

Additionally, more resources need to be available about palliative care for people with intellectual disability, their family and carers.

What is your experience with palliative care and how can it be improved? Tell us in the comments below.

Related content:
Your rights as a person with disability
Taking care of your mental health when living with a disability
Support for disability carers