Historical Hot Tips

Improving palliative care for people with intellectual and developmental disabilities (PWIDD) requires a holistic, person-centered approach that addresses medical, psychological, social, and spiritual needs. Many PWIDD face barriers such as communication challenges, limited access to specialized services, and gaps in provider training.

Enhancing care involves equipping healthcare professionals and direct support staff with skills in recognizing symptoms, adapting communication methods, and involving individuals and families in decision-making. Collaboration between palliative care teams, disability services, and community supports is essential to ensure continuity of care and equitable access. By fostering inclusion, respecting autonomy, and tailoring interventions to individual needs, palliative care for PWIDD can become more compassionate, effective, and just.

Delirium is an acute and often reversible disturbance in attention, awareness, and cognition, typically triggered by an underlying medical condition, medication, or environmental change. Early diagnosis is critical and involves identifying sudden changes in mental status, fluctuating levels of consciousness, and disorganized thinking, often through clinical tools like the Confusion Assessment Method (CAM). Prevention focuses on addressing modifiable risk factors, such as ensuring adequate hydration, promoting sleep, managing pain, avoiding polypharmacy, and supporting sensory input (e.g., using hearing aids or glasses). Treatment involves promptly identifying and managing the underlying cause, minimizing medications that can contribute to confusion, and providing supportive care, including frequent orientation, calm environments, and mobilization. A multidisciplinary approach is essential to improving outcomes and reducing complications.

Transgender individuals encounter distinct and often complex challenges as they age, particularly in relation to health and access to appropriate, respectful, and affirming care. Many face significant disparities in healthcare, including limited access to knowledgeable providers, delayed or denied medical treatment, and a lack of inclusive policies within healthcare systems. These challenges are frequently compounded by a lifetime of stigma and discrimination, leading to increased rates of mental health issues, chronic conditions, and a deep mistrust of medical institutions. Additionally, transgender older adults are at a heightened risk of social isolation due to estrangement from family, limited social networks, and the absence of affirming long-term care options. These factors can result in a lack of emotional, financial, and caregiving support as they age. Advocacy efforts are not only necessary but urgent to address these systemic barriers. This includes pushing for inclusive healthcare practices, culturally competent provider training, supportive housing options, and community programs that recognize and affirm the identities and lived experiences of transgender older adults. Ensuring equitable and compassionate care for this population is a vital step toward creating a healthcare system that honors dignity and human rights at every stage of life.

Advocating for dementia care is crucial to maintaining a higher quality of life for individuals affected by this progressive condition. As dementia impairs memory, thinking, and behavior, comprehensive and compassionate care becomes essential to support patients’ dignity, independence, and emotional well-being. Early intervention, personalized care plans, and access to supportive services can significantly enhance daily functioning and reduce feelings of isolation or frustration. Moreover, well-informed caregivers and healthcare providers play a vital role in creating a safe and nurturing environment, helping patients remain engaged and connected with their communities. By prioritizing dementia care, we not only improve individual outcomes but also promote a more inclusive and empathetic society.

Serious illness conversations are crucial for ensuring that patients receive care aligned with their values, preferences, and goals. These discussions provide an opportunity for individuals to express their wishes regarding treatment options, end-of-life care, and quality of life, enabling healthcare providers to make informed decisions. When approached early, these conversations can reduce stress and anxiety for both patients and their families, promoting a sense of control during challenging times. Additionally, they can help avoid unnecessary or aggressive treatments that may not enhance the patient’s well-being, fostering a more compassionate and personalized approach to care. By prioritizing serious illness conversations, we can enhance communication, improve patient outcomes, and honor each person’s unique journey.

Advance care planning is crucial because it ensures that individuals’ healthcare preferences are understood and respected in the event they are unable to communicate their wishes. By discussing and documenting decisions about future medical treatment, patients can relieve their loved ones from the burden of making difficult choices during emotionally challenging times. It also allows individuals to receive care that aligns with their values, whether that means opting for life-sustaining treatments or prioritizing comfort and dignity. Moreover, advance care planning can improve communication between patients, families, and healthcare providers, leading to better outcomes and more personalized care. Ultimately, it empowers individuals to take control of their healthcare, providing peace of mind for both patients and their families.

Social workers play a central and indispensable role in supporting patients with terminal and chronic illnesses, as well as their families. As integral members of hospice and palliative care teams, they not only provide essential psychosocial support but also serve as advocates for patients’ and families’ needs, ensuring their voices are heard throughout the care process. Social workers facilitate meaningful conversations around complex healthcare decisions, offering emotional support, helping manage expectations, and navigating issues such as end-of-life planning, grief, and loss.

Their role has expanded significantly in recent years, as they contribute to the development of innovative models for psychosocial care and care coordination. This includes addressing the unique challenges faced by marginalized and special needs populations, ensuring that all patients receive care that respects their individual circumstances. Social workers help bridge the gap between medical care and emotional, social, and practical concerns, offering resources like financial assistance, access to support groups, and guidance on coping with illness. Their work not only enhances the quality of care but also improves the overall experience for patients and families, providing comfort and peace during one of the most challenging times in life. Through their expertise and compassion, social workers play a vital role in ensuring holistic, patient-centered care in palliative settings.

Caring for the caregiver is essential to ensure they can continue to provide support without compromising their own well-being. Caregiving can be physically and emotionally exhausting, and without proper self-care, caregivers may experience burnout. It’s important for caregivers to prioritize their own health by getting adequate rest, eating well, and engaging in regular physical activity. Setting boundaries and asking for help from family, friends, or professional services can lighten the load. Taking breaks, seeking emotional support, and maintaining social connections are crucial for mental health. Moreover, caregivers should stay organized and educated about the care they provide, which can reduce stress and increase confidence. Ultimately, by nurturing themselves, caregivers are better equipped to offer compassionate and effective care to others.

Nutrition and hydration play crucial roles throughout our lives, starting from birth. In our culture, food and drink often symbolize love and care, offering a nonverbal means of communication.

For terminally ill individuals, eating and drinking habits naturally change as the body slows down. Decreased appetite and thirst are typical, and it’s important not to compel them to consume food or fluids. Allowing them to choose what and when to eat can benefit both them and their caregivers, preventing unnecessary emotional burdens like guilt or rejection.

As the disease progresses, taste buds may alter, making food taste differently or water taste metallic. Reduced hunger and thirst, along with resultant weight loss, are part of the body’s adaptation towards a peaceful end. Evidence shows that increasing oral intake does not extend life or alleviate suffering in terminal illness.

As the body’s nutrition needs decrease, changes in alertness may occur. Interestingly, dehydration can alleviate symptoms such as nausea, swelling, and pain by triggering natural responses in the body. Artificial hydration methods like IVs or tube feedings can actually worsen discomfort due to side effects.

Honouring a terminally ill person’s natural intake preferences supports their comfort and dignity, while respecting their body’s natural processes towards the end of life.

If you are a caregiver, discussing end-of-life decisions with the person in your care can be very difficult. You may need to initiate and encourage the conversation. To make the topic less overwhelming, try bringing it up in a comfortable, relaxed setting. Begin with a situation they can relate to like another loved one’s end-of-life experience and remind them how this type of planning will reduce stress, anxiety and conflict between family members and loved ones. Don’t be discouraged if you are initially met with resistance. Advance Care Planning requires many conversations and is an ongoing process.

Five Steps of Advance Care Planning

By planning early, you can ensure that have a voice in your future medical decisions. To help you (or a loved one) work through the advance care process, here are five steps to follow:

• THINK about your beliefs, values and concerns. What brings you quality of life?
• LEARN about various end-of-life medical procedures and the care decisions you may be asked to make (e.g. life-prolonging measures).
• DECIDE who will be your Substitute Decision Maker(s). Who would you like to speak for you if you are unable to make decisions?
• TALK about your wishes with your Substitute Decision Maker, loved ones and health care providers.
• RECORD your wishes and ensure that your decision maker(s) understands your choices and has a copy of your plan. Write your decisions down in an Advance Care Directive or record or videotape them.

Healthcare providers distinguish between delirium and dementia-related confusion using various factors. Delirium typically appears suddenly, with fluctuating symptoms, while dementia progresses gradually and exhibits more stable symptoms. Delirium often involves a departure from the individual’s usual mental state and may be accompanied by other medical symptoms. Treatment can improve delirium, but dementia is incurable, leading to persistent confusion despite interventions.

Grieving through the holidays can be an especially difficult experience, as the season is often filled with expectations of joy, togetherness, and celebration—emotions that may feel out of reach for someone mourning a loss. The presence of holiday traditions, decorations, and family gatherings can serve as reminders of what has been lost, intensifying feelings of sadness, loneliness, or even guilt. For those grieving, the pressure to “be merry” can feel overwhelming, and it may be hard to navigate a world that seems focused on happiness while they are struggling with heartache. However, it’s important to acknowledge that it’s okay to not feel festive, and to honour one’s grief in whatever form it takes. This may mean scaling back on celebrations, setting boundaries, or finding new ways to remember and connect with loved ones who have passed. Allowing space for grief, while also finding small moments of comfort, can help one navigate the holiday season with more grace and self-compassion.

The palliative care needs of individuals with intellectual and developmental disabilities share the same fundamental goals as those of the general population: the desire for a death free from pain and discomfort, the opportunity to spend time with loved ones, and the importance of having their personal preferences and decisions honoured when it comes to their care and treatment.

While these core needs are consistent across all individuals, those with intellectual and developmental disabilities often encounter specific and unique issues that can make it significantly more challenging to meet these needs effectively. These challenges may include difficulties with communication, which can affect every aspect of palliative care, as well as struggles with insight and the ability to participate in decision-making processes.

Additionally, individuals with intellectual and developmental disabilities might express signs and symptoms of illness and distress in unconventional ways, face multiple co-existing medical conditions, experience complex family and social dynamics, and deal with higher levels of behavioural or psychiatric issues. As a result, addressing their palliative care needs requires tailored approaches and heightened attention to these unique factors.

Palliative care is essential for people with Parkinson’s disease because it addresses the complex and evolving nature of the condition, which affects both physical and emotional well-being. As Parkinson’s progresses, individuals may experience debilitating symptoms such as pain, stiffness, difficulty with movement, and emotional challenges like anxiety or depression. Palliative care focuses on easing these symptoms, enhancing quality of life, and providing support for both the patient and their caregivers. It also helps manage the psychological and spiritual aspects of living with a chronic illness, offering a holistic approach that complements medical treatments. By integrating palliative care early on, people with Parkinson’s can receive personalized, compassionate support that improves their overall experience of the disease.

During an episode of sundown syndrome, a person may become restless and irritable and experience psychological symptoms such as anxiety, confusion, and cognitive disturbances. Physical symptoms such as pacing or changes to motor skills may also occur. A person experiencing an episode may not know where they are, or they may become agitated and yell at caregivers.

This change in behaviour is called sundowning or late day confusion. It is not considered a separate type of dementia, but rather a set of mood and behavioural symptoms associated with dementia that begin in late afternoon or evening. Sundowning or late day confusion in dementia patients is relatively common, so it’s important to understand the causes and ways to reduce or prevent sundowning symptoms as a caregiver. In fact, according to the Alzheimer Society of Canada, up to 66% of people living with dementia can experience this.

The purpose of ACP is to prepare people and their SDM(s) for decision-making in the future. While ACP can be for healthy people, it gets more and more important as people develop serious and progressive illness. Preferences, values and priorities are expressed through the advanced care planning conversations.

Goals of care discussions (GOCD) and consent happen when treatment or care decisions are needed. Good ACP as described above helps people and their SDM(s) be prepared to make decisions because conversations about preferences, values and priorities are known and guide treatment and care decisions.

GOAL OF CARE DISCUSSIONS (GOCD) Goals of care discussions are needed to support people with serious illnesses when they face treatment and/or care decisions.

• These discussions take place for many different treatment and/or care decisions – they are not the same as someone’s code status.
• They are discussions in the context of a current illness.
• Their aim is to align treatment/care decisions with a person’s goals, values and priorities.
• And to support people if their goals cannot be achieved.

Healthcare providers distinguish between delirium and dementia-related confusion using various factors. Delirium typically appears suddenly, with fluctuating symptoms, while dementia progresses gradually and exhibits more stable symptoms. Delirium often involves a departure from the individual’s usual mental state and may be accompanied by other medical symptoms. Treatment can improve delirium, but dementia is incurable, leading to persistent confusion despite interventions.

According to the Institute for Health Improvement, a combination of clinical and leadership skills promote innovative leadership and changes in healthcare (Angood et. al 2014). Within palliative care, leadership is the process of empowering clinical teams to transform the care of serious illness.