People with Intellectual Disability: (Palliative) Care in The Netherlands 

Dr. Lotte Voets

MD Geriatric and Palliative Care, MA Ethics of Care & Policy, MA Religion in Contemporary Society, MSc Palliative Care 

Dear organization of this Symposium: Health care for the marginalized. Thank you for the opportunity to share both my love for Christ as well as my love for my work and patients. 

Due to my conversion in 2008 on the Camino de Santiago, my heart was touched by the Love of God, and it transformed my life. That is to say, it shook its foundations. I felt that life would be worthless without people knowing about this Love. It was during my internships that I strongly started to doubt whether to continue my study medicine, considering religious life or theology. 

As I am standing here now in front of you, you can probably guess God found a way to serve Him and practice medicine. I continued a specialty in geriatric care, and specialized in palliative care. Nowadays I work in a hospice, in The Netherlands, but for one year I had the opportunity to learn and work in specialized health care facility for disabled people, where I took care of the elderly and dying. 

Before I will start my talk I want to emphasize that I am a specialist in geriatric and palliative care, and not a specialized physician for disabled people, which is a different specialty in The Netherlands. However, for one year I’ve learned many things that I would be happy to share with you. I hope this will help you too to serve our brothers and sisters in Christ challenged with disabilities. 

As I am standing here now in front of you, you can probably guess God found a way to serve Him and practice medicine. I experienced to be the one receiving in providing care. Like always the paradox of Christ's love is that 'in giving we receive'.

Levels of Intellectual Disabilities*

Before I will start, it is important to know that there are different levels of intellectual disabilities, often categorized, based on IQ scores: 

• Profound intellectual disability (IQ below 20): People require full-time assistance and may have additional physical or health issues. 
• Severe intellectual disability (IQ 20-34): People have significant challenges and need extensive support for daily living. 
• Moderate intellectual disability (IQ 35-49): People require reasonable support and can develop basic communication and self-care skills. 
• Mild intellectual disability (IQ 50-69): People may achieve some independence and can often learn basic life skills. 

IQ measures cognitive abilities, including reasoning and problem-solving skills, while social-emotional development focuses on a person's ability to understand emotions, form relationships, and navigate social situations. In disabled people, there can be a disharmony between these two areas, for instance, someone may have a reasonable high IQ but struggle with social cues, leading to difficulties in peer interactions. Conversely, people with lower IQs might excel in social-emotional skills, e.g. Down’s syndrome, demonstrating strong empathy and connection despite cognitive challenges. This imbalance can affect overall well-being and integration, highlighting the need for tailored support that addresses both cognitive and emotional development. 

(* scientific references for this article available on request)

Socio-emotional Development

I will now share some information on the five distinct phases, each representing a critical aspect of growth and emotional regulation. Important to say that not all may fulfill all steps. 

• Phase 1: Homeostasis & Dysregulation focuses on establishing safety and physical proximity. At this stage, people require a structured environment to meet their immediate needs and create a sense of stability. 
• Phase 2: Trust & Distrust emphasizes the importance of developing trust. Here, a more distant proximity allows people to build relationships while fostering clarity in interactions, which helps establish a sense of security. 
• Phase 3: Autonomy & Dependency marks the balance between guidance and independence. With clear rules and consequences, people can safely explore their environment, promoting autonomy within a supportive structure. 
• Phase 4: Initiative & Reservation highlights the development of growing trust. As people gain confidence, they seek confirmation from their surroundings and relationships, reinforcing their sense of security. 
• Phase 5: Confidence & Lack of Self-Confidence culminates in social connections and group learning. This phase encourages friendships, shared responsibilities, and independence, emphasizing the importance of supportive environments and appreciation in fostering self-confidence. 

Etiology of intellectual disabilities 

Before we move on, it is important to tell that Intellectual Disabilities often do not stand on their own. I will now share some information on the etiology.4 It can be classified into several categories: 

75% can be explained by genetic changes, versus 25% caused by exogenic factors: infections, intoxication, rhesus antagonism, maternal hypertension, perinatal hypoxia. 

• Genetic Factors: Chromosomal abnormalities (e.g., Down syndrome) and single-gene disorders (e.g., Fragile X syndrome) can lead to intellectual disabilities. 
• Environmental Factors: Prenatal exposure to toxins (like alcohol or drugs), malnutrition, or infections during pregnancy can affect fetal brain development. 
• Perinatal Factors: Complications during birth, such as oxygen deprivation or premature birth, can result in cognitive impairments. 
• Postnatal Factors: Trauma, infections, and exposure to lead or other harmful substances in early childhood can impact cognitive development. 

Sociocultural can either support further development or hinder it. A healthy support system will work out beneficial to children with intellectual disabilities. However, highly educated parents tend to overcharge their child, sometimes even causing regressive behavior as an expression of “burn out”. 

Behavioural phenotype & specific physical symptoms

Some syndromes or genetic mutations can be accompanied by a certain “behavioural phenotype”: for example “Williams syndrome” which is known for their musical giftedness. Some others have increased prevalence of autism, depression, compulsive disorders, dementia (especially in Down syndrome) or self-mutilative behaviour (Corneliadelange syndrome). 

People with intellectual disabilities experience a higher frequency of various physical health problems compared to the general population. 

• Neurological issues are particularly prevalent, with epilepsy occurring in 16-25% of this group, compared to just 1.5% in the general population. Dementia is also more common, affecting 14.6% of people with intellectual disabilities (esp. Down syndrome), versus 5.4% in the general population. 
• Sensory impairments are significant, with 43% experiencing issues related to earwax buildup, a stark contrast to the 2-4% seen in the general population. Hearing problems or deafness affect 30% of those with intellectual disabilities, particularly among people with Down syndrome, where the rate is as high as 57%. Visual problems or blindness are present in 19.2%, compared to just 1.9% in the general population. 
• Gastrointestinal disorders are another concern, with gastroesophageal reflux affecting 48.2% of people with an IQ below 50, compared to only 0.68% in the general population. Constipation is reported in 28% of people with intellectual disabilities, compared to 1.7% in others. 
• Additionally, urinary tract infections occur in 16% of this population, with retention issues seen in 10.2%, compared to 0.2-0.7% in the general population. Thyroid dysfunction is found in 8-12% of people with intellectual disabilities, while rates are higher in those with Down syndrome (15-30%) versus 1.6% in the general population. Lastly, musculoskeletal problems such as spasticity affect 14.6%, compared to only 1.5% elsewhere. 

These statistics highlight the need for tailored healthcare strategies to address the complex health challenges faced by people with intellectual disabilities. 

Health care provision

In the Netherlands, the organization of care for people with intellectual disabilities is structured to promote inclusivity and personalized support.

The system is primarily divided into three levels:  

1. Municipalities are responsible for coordinating services, ensuring that people receive the necessary support within their communities. 
2. Regional centers offer tailored programs that focus on skill development, social integration, and daily living assistance. These centers work closely with families to create personalized care plans that reflect each person's unique needs and goals. 
3. Specialized institutions provide more intensive care for people with complex needs. These facilities focus on safety, therapeutic interventions, and promoting autonomy where possible. 

The Dutch government emphasizes a rights-based approach, ensuring that people with intellectual disabilities have access to the same opportunities as others. Collaborative efforts among healthcare professionals, social workers, and families are essential in creating a supportive environment. This holistic approach not only enhances the quality of life for people with intellectual disabilities but also fosters greater societal acceptance and understanding. 

General challenges  

People with intellectual disabilities face significant challenges in healthcare provision, which can hinder effective treatment and support. One major issue is the gap in knowledge among healthcare professionals. While general health care providers often have a foundational understanding of intellectual disabilities, they may lack specialized training to address the unique needs of this population. 

Personal assistants, who are typically trained in social care rather than nursing, may not possess the medical knowledge required to identify or respond to health issues adequately. Communication barriers further complicate interactions, as people with intellectual disabilities may struggle to articulate their symptoms or understand medical instructions. 

Additionally, impairments in awareness of their own health deficits can make it difficult for people to seek help or follow treatment regimens. Cognitive skills and social-emotional development may vary widely, impacting their ability to engage with healthcare services effectively. 

Healthcare professionals also face challenges due to the reduced capacity for patients to process information. 

Furthermore atypical presentations of symptoms that may not align with standard diagnostic criteria. Moreover, responses to medication can be unpredictable, requiring careful monitoring and adjustments. 

The multifactorial and complex nature of health problems in this population necessitates a holistic approach to care. Accessibility to healthcare services remains a critical issue, as people may face physical, financial, or systemic barriers that prevent them from receiving timely and appropriate care. Addressing these challenges is essential for improving health outcomes for people with intellectual disabilities. 

Practical Tools

Effective healthcare provision for people with intellectual disabilities requires practical tools and strategies that ensure comprehensive and personalized care.

Advanced Care Planning and Personal Care Plans are essential for tailoring health interventions to meet the unique needs of each person. These plans should reflect the person’s preferences, values, and wishes, promoting a sense of autonomy and involvement in their own care inducing experienced quality of life. 

Multidisciplinary teams play a crucial role, bringing together healthcare professionals and informal caregivers to create a holistic support system. This approach is grounded in the bio-psycho-social model, which considers not just medical but also psychological and social factors affecting health. 

Specialized knowledge of specific syndromes and adherence to current guidelines are vital for delivering effective care. A structured, problem-oriented approach ensures that interventions are focused on improving the person's quality of life. 

Clear communication is critical in all interactions, helping to bridge gaps between healthcare providers, patients, and their families. Additionally, supportive diagnostics and regular screenings are necessary to monitor and address potential health issues effectively. This includes routine checks for vision and hearing, as well as laboratory tests, particularly for those on psychotropic medications. 

Finally, screening for cytochrome enzymes and genetic testing can provide valuable insights into medication metabolism and potential responses to treatment. Together, these tools create a comprehensive framework that enhances healthcare provision for people with intellectual disabilities, promoting better health outcomes and improved quality of life. 

Recommendations in Communication

Effective communication with people with intellectual disabilities requires a tailored approach that considers their unique needs and abilities. The strategy should vary depending on their level of intellectual disability, encompassing both IQ and social-emotional development. 

Collaboration with personal assistants and informal caregivers is essential, as they often have established rapport and insights into the person’s preferences. Whenever possible, it is important to speak with the person rather than about them, fostering a sense of respect and agency. Make sure you take time for that and plan the conversation. 

Effective communication with people with intellectual disabilities requires a tailored approach that considers their unique needs and abilities. 

Non-verbal communication is key in these interactions. Engaging through eye contact and appropriate touch can be beneficial, but it's crucial to be aware that some people may find direct eye contact or touch threatening. For those with visual disabilities, supportive touch can enhance connection and understanding. 

Taking the time to communicate patiently allows for better comprehension. Using visual supports, such as gestures, pictograms, or even showing medical tools like a stethoscope, can aid understanding significantly. 

When verbal communication is necessary, employing short sentences and simple language is effective. It is vital to avoid ambiguous language or double negatives that could confuse the person. Rephrasing and summarizing key points can reinforce understanding, while open questions encourage engagement and expression. Respect a “No” from your patient. When someone finds out you respect their “No”, they can become a “Yes” too. 

Finally, making compliments can boost confidence and promote a positive interaction. By integrating these recommendations, healthcare providers can enhance communication and build meaningful connections with people with intellectual disabilities. 

Challenges in Palliative Care Provision

When addressing the healthcare needs of people with intellectual disabilities, it is crucial to recognize how etiology can significantly impact life expectancy. A multidisciplinary approach is essential for providing comprehensive care that addresses the complex needs of this population. 

Medical and nursing support should be integrated into care plans, utilizing or developing specific guidelines tailored to the unique health profiles of people with intellectual disabilities. These guidelines can help mitigate the higher risks of conditions such as delirium, which are more prevalent in this group. 

It is important to be aware that symptoms, particularly pain, may manifest differently in people with intellectual disabilities. Utilizing screening tools can aid in recognizing these atypical presentations, ensuring timely and appropriate interventions. 

It is important to be aware that symptoms, particularly pain, may manifest differently in people with intellectual disabilities. 

Additionally, people in this population may face a higher risk of experiencing strong or adverse effects from medications, especially concerning polypharmacy, psychotropic drugs, opioids, and benzodiazepines. Careful monitoring and consideration of these risks are essential to avoid complications. Furthermore, substance use, including nicotine, alcohol, and illicit drugs, should be addressed as they can contribute to health deterioration. 

The level of disability also influences people' conceptual understanding of death, making it essential to explore their wishes regarding end-of-life care. Engaging in open discussions about preferences can provide valuable insights, ensuring that care aligns with their values and desires. 

By implementing these specific recommendations, healthcare providers can enhance the quality of care for people with intellectual disabilities, ultimately improving their overall health outcomes and life expectancy. 

Grief and Mourning

Grief and mourning in people with intellectual disabilities can be complex and may differ from typical expressions of loss. Utilizing tools like a memory book can help people process their feelings by preserving memories of the deceased. A Box of Tears can provide a tangible way to express emotions, allowing them to place mementos or notes that signify their grief. Incorporating simple rituals, such as lighting a candle or sharing stories, can create a supportive environment for remembrance. These approaches foster understanding and connection, helping people navigate their grief in a meaningful way. For surviving parents the death of their child may feel ambiguous. It feels unnatural to survive your child, especially if parents or siblings have provided informal care. However sometimes a feeling of relief may be present too, since the care provision had always caused a sense of concern. 

Conclusion 

As we conclude this lecture on healthcare provision for people with intellectual disabilities, I want to express my heartfelt passion for caring for this remarkable population. Their unique needs inspire us to create a more inclusive and compassionate healthcare environment. By prioritizing understanding, empathy, and tailored support, we can significantly enhance their quality of life. It is a privilege to advocate for and care for these people, and I am dedicated to continuing this important work. But moreover, I experienced to be the one receiving in providing care. Like always the paradox of Christs love is that in giving we receive. Thank you for joining me today in exploring how we can better serve and uplift these dear brothers and sisters in Christ. 

(* scientific references for this article is published in our paper version of the journal, and is available on request)