What Are Some Unique Challenges to Providing Hospice Care to People With Intellectual Disabilities?

Providing hospice and palliative care to people with intellectual disabilities poses a number of unique challenges. Although each person’s level of intellectual ability will vary, all individuals with intellectual disabilities have a diminished ability to understand information, a decreased ability to function independently and marked developmental delay. Many are nonverbal or have other barriers to communication, and a significant percentage also suffer from Autism Spectrum Disorder, or ASD. People with intellectual disabilities are also more likely to have comorbidities associated with their underlying diagnosis. For example, adults over the age of 60 with Down syndrome have a 40% higher incidence of Alzheimer’s disease than similarly aged healthy adults. They also have a higher incidence of cardiovascular disease and certain cancers. 

Other challenges to caring for people with intellectual disabilities, especially at the end of life, include:

• Poor or diminished insight, leading to decreased ability to share in decision-making
• Unusual communication patterns around expressing symptoms or distress
• Challenging family systems and social circumstances
• Behavioral and psychiatric problems

Studies have also shown that people with intellectual disabilities experience significant health inequities that lead to overall poorer health and earlier death. According to one study conducted by the National Health Service in England, men and women with intellectual disabilities had a life expectancy of 63 years and 65 years respectively. This was a full 16 years lower than the overall life expectancy in the country at the time.   

Despite this, people with intellectual disabilities are living longer lives. The life expectancy for people with Down Syndrome, for example, increased from 10 years in the 1940s to 47 years in 2007, according to the CDC.  As a result of this improvement, more people with intellectual disabilities are developing chronic life-limiting illnesses associated with aging. Many of these people will require. palliative and hospice care at the end of their lives. 

Caring for People with Intellectual Disabilities

Despite the unique challenges faced by people with intellectual disabilities, their needs when they are living with a life-limiting illness are the same as anyone else’s.. They include 

• Physical issues such as the management of pain and other distressing symptoms including nausea, vomiting, shortness of breath, mobility problems and fatigue.
• Psychosocial issues such as isolation, loneliness, fear of the unknown and the need to be seen, heard and understood by caregivers and the medical team
• Spiritual issues such as the need for comfort and a sense of meaning

Meeting these needs involves seeing each patient as an individual and learning about their unique ways of making their needs known. For example, many people with intellectual disabilities do not communicate discomfort in typical ways. They may become hostile or uncooperative, irritable or withdrawn. They may refuse to eat, or wake frequently during the night. Some people may cry or become agitated but be unable to communicate the source of their distress. This can be extremely challenging for hospice staff, especially if the individual does not have an involved support system of family or friends. 

Pain management can  be especially challenging when working with patients with intellectual disabilities. Many patients with mobility issues (for example, those who are wheelchair dependent) have chronic musculoskeletal pain that worsens at the end of life. Many of these patients will not communicate their pain verbally, but instead will have behavioral changes that indicate that something is wrong. Some nonverbal patients may actually injure themselves when they are hurting, biting or excessively rubbing the painful body part or banging their head against a wall. Some people demonstrate extreme sensitivity to sound or touch and refuse efforts by caregivers to provide comfort measures or alleviate their distress. 

With that being said, there are a number of tools available for assessing distress in nonverbal individuals, including this Distress and Discomfort Assessment Tool developed by a learning disability and palliative care team at Northgate Hospital in Northumberland, U.K. It is incumbent on hospice and palliative care providers to give staff access to as many of these tools as possible. Additionally, staff should receive training in how to tailor their communication about the person’s illness, prognosis and options for care to the individual’s ability to understand. This may involve 

• Using materials written in very simple language with pictures illustrating concepts that may be difficult to grasp
• Presenting information in pictures or video format
• Role playing a situation 
• Using family caregivers to help the patient understand what’s being presented to them.

Whenever possible, all adults with an intellectual disability should have the maximum amount of  autonomy in directing their care. Caregivers should use every tool available to them to elicit meaningful responses to questions about goals of care, invasive treatments or measures to prolong life. However, if an individual with an intellectual disability lacks the capacity to make informed decisions, the court may appoint an advocate guardian to assist the hospice care team. Depending on the person’s level of intellectual disability, this advocate may have the ability to make all, most or only a few decisions about the care the person will receive. However, even if an advocate has been appointed, the care team must make every effort to involve the patient, their family and other caregivers in developing a treatment plan. 

Sources

“Intellectual Disability and ASD”. Children’s Hospital of Philadelphia Research Institute. https://www.research.chop.edu/car-autism-roadmap/intellectual-disability-and-asd 

“Palliative Care and Intellectual Disabilities”. University of Hertfordshire. https://www.intellectualdisability.info/physical-health/articles/cancer,-palliative-care-and-intellectual-disabilities 

“Cardiovascular Complications of Down Syndrome: Scoping Review and Expert Consensus”. AHA Journals. https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.122.059706 

“Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD)”. Norah Fry Research Centre, University of Bristol. https://www.bristol.ac.uk/media-library/sites/cipold/migrated/documents/fullfinalreport.pdf 

“Living with Down Syndrome”. U.S. Centers for Disease Control and Prevention. https://www.cdc.gov/birth-defects/living-with-down-syndrome/ 

“How social care staff can recognise and manage pain in people with learning disabilities”. Public Health England. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/656269/Social_care_staff_supporting_pain_management_in_learning_disabilities.pdf 

“Understanding pain in patients with intellectual disabilities”. American Nurse. https://www.myamericannurse.com/understanding-pain-in-patients-with-intellectual-disabilities/ 

“Distress and Discomfort Assessment Tool”. St. Oswald’s Hospice and Northumberland Tyne & Wear NHS Trust. https://www.stoswaldsuk.org/wp-content/uploads/2022/11/disdat-22.pdf 

“Disability Resources”. Disability Rights Florida. https://disabilityrightsflorida.org/disability-topics/disability_topic_info/types_of_guardianship