In the Last Season of Life
Care of the Person with Intellectual and Developmental Disabilities in the Last Season of Life: A guide for direct support professionals, caregivers, and the people who walk beside them
By Ruth Benjamin, RN, GERO-BC, CRRN, CDDN, CPHN, PLNC — Consulting RN
Summary: People with intellectual and developmental disabilities (IDD) deserve end-of-life care that is accessible, inclusive, compassionate, person-centered, and grounded in dignity, respect, autonomy, relationships, familiar routines, and quality of life. This article offers practical guidance for direct support professionals, caregivers, nurses, and interdisciplinary team members who support people with IDD during serious illness, palliative care, hospice care, and the end of life. Key topics include recognizing clinical decline, assessing pain and distress in individuals who may communicate atypically, providing comfort interventions, involving the person to the greatest extent possible, supporting families and housemates, and following required New York State OPWDD processes when Medical Orders for Life-Sustaining Treatment (MOLST) or other life-sustaining treatment decisions are being considered.
Purpose
This article is intended to support clinicians, direct support professionals, caregivers, and interdisciplinary teams who care for people with intellectual and developmental disabilities during serious illness and at the end of life. It emphasizes person-centered assessment, recognition of symptoms and health decline, comfort interventions, communication support, involvement of families and housemates, and adherence to applicable New York State decision-making requirements. Although the discussion includes New York State OPWDD and MOLST requirements, the broader principles of person-centered communication, symptom recognition, comfort-focused care, and caregiver support may be useful to interdisciplinary teams in other settings when adapted to local laws, policies, and clinical standards.
Introduction
Caring for a person with IDD in the last season of life requires more than recognizing health decline. It requires knowing the person well, identifying subtle changes from baseline, communicating in ways the person can understand, and supporting the person’s participation to the fullest extent possible while protecting the person’s dignity and comfort. Direct support professionals, family members, nurses, clinicians, and palliative care team members each bring essential knowledge to the circle of support. Together, they help interpret pain and distress, preserve familiar routines when possible, support emotional and spiritual needs, and keep the person at the center of decisions. In New York State, this also requires understanding when OPWDD legal requirements apply before MOLST or other life-sustaining treatment decisions are completed.
What End-of-Life Care Really Means End-of-life care recognizes that the dying process does not follow one predictable path. A helpful way to understand this is as a road map: there may be many different routes toward the same destination, and each person’s journey is shaped by their diagnosis, baseline function, relationships, communication style, and response to illness. For some people, death occurs over days or weeks; for others, decline unfolds over months as illness progresses and clinicians determine that recovery or meaningful clinical improvement is no longer expected.
Good end-of-life care is grounded in person-centered care rather than a standard protocol. It may take place in a family home, group home setting, hospital, hospice residence, or care facility—wherever the person can receive safe, appropriate, and comfortable care. When clinically appropriate and consistent with the person’s goals of care, the team may thoughtfully discontinue medications, tests, or treatments that no longer provide benefit or comfort, so that care remains focused on dignity, symptom relief, and quality of life.
End-of-Life Care Planning for Individuals with Intellectual and Developmental Disabilities End-of-life care planning should begin when there is a health decline, serious illness, repeated hospitalization, or a terminal diagnosis (an illness expected to lead to death). In New York State, OPWDD requirements must be followed before MOLST orders are completed for a person with IDD who lacks capacity (cannot understand or make the decision) and does not have a health care proxy (a person legally chosen to make health care decisions). The process should include:
Identifying the appropriate 1750-b surrogate decision-maker (the person allowed under New York law to make certain health care decisions).
Documenting discussions about treatment options and goals of care with the physician or qualified clinician.
Confirming the person’s lack of capacity (inability to understand or make the decision).
Obtaining required medical findings and concurring opinions.
Notifying required parties.
Completing MOLST orders (Medical Orders for Life-Sustaining Treatment) only after all legal criteria and documentation requirements are met.
Throughout the process, the person should be involved to the fullest extent possible, even when a surrogate is responsible for the final decision. Supports may include:
Plain language, pictures, symbols, familiar routines, extra time, assistive technology, and trusted supporters who understand the person’s communication.
Gentle nursing guidance when family members disagree about involving the person, with focus on dignity, the right to be heard, and person-centered care.
A circle of support that includes people important to the person, such as family members, advocates, direct support professionals, nurses, clinicians, residential staff, clergy, and others who know the person well.
Shared attention to what matters most helps ensure that decisions reflect the person’s preferences, dignity, comfort, and quality of life.
Palliative Care and Hospice: Understanding the Difference Early referral to palliative care is important for people with intellectual and developmental disabilities and should be accompanied by strong advocacy to ensure equitable access to the same specialized services available to the general population. Many people with IDD experience age-related health changes earlier than expected and may develop complex chronic conditions, frailty, dementia (progressive changes in memory and thinking), dysphagia (swallowing difficulty), aspiration risk (risk of food, fluid, or saliva entering the airway), changes in seizure pattern, pain, or functional decline before these concerns are recognized as part of a serious illness trajectory (the course of worsening illness). Because health care providers may not recognize that people with IDD can experience serious or life-threatening illness at an earlier age than the general population, nurses and other advocates must speak up early for timely palliative care evaluation and support. Early palliative care consultation can help clarify goals of care, improve symptom management, support caregivers, and reduce crisis-driven decision-making.
The terms palliative care and hospice care are sometimes used interchangeably, but they are not the same. Palliative care is specialized medical care for a person of any age who is living with a serious illness. Its purpose is to manage symptoms, support decision-making, promote quality of life, and coordinate care in a way that reflects the person’s goals, values, and clinical needs. Palliative care can begin at diagnosis or at any point in the illness course, and it may be provided while the person continues disease-directed or potentially curative treatment. It may also support the person and family as they adjust to a terminal diagnosis when there is no reasonable expectation of recovery.
Hospice care, sometimes referred to as “comfort care,” is a specific type of palliative care for a person whose illness is advanced and for whom the goals of care have shifted from cure or treatment that may prolong life to comfort, dignity, and the best possible quality of life for the time remaining. Hospice is generally considered when a clinician determines that the person is approaching the end of life (usually 6 months or less) and when the burdens of further disease-directed treatment outweigh the expected benefit. Hospice care does not mean that care is abandoned; rather, it adds an interdisciplinary team that may include nursing, medical direction, social work, spiritual care, comfort-related medications, equipment, caregiver education, bereavement support, and 24-hour clinical guidance when available through a hospice program.
For people with IDD, palliative care and hospice care are most effective when they build on familiar routines, trusted relationships, individualized communication supports, and knowledge of the person’s baseline behavior and function. Direct support professionals, family members, residential staff, nurses, clinicians, and hospice or palliative care providers should work together to interpret symptoms, honor the person’s preferences, support shared decision-making, and maintain comfort in the least disruptive way possible.
The Interdisciplinary Team No one provides this care alone. An interdisciplinary team comes together to ensure excellence in caring for one person. Each member brings a different kind of knowledge:
Direct support professionals: often referred to as “our eyes and ears” because they frequently notice subtle day-to-day changes first.
Registered nurses and licensed practical nurses: guide clinical assessment, comfort planning, medication support, and symptom reporting.
Family members: carry knowledge of the person’s history, relationships, preferences, and wishes.
Spiritual care providers: support meaning, faith, ritual, and comfort.
Other clinicians: physical therapists, occupational therapists, speech therapists, dietitians, hospice staff, and palliative care providers contribute specialized guidance.
The person: remains part of their own care whenever possible, with communication support and other accommodations necessary.
A shared plan of care should clearly identify:
The person’s baseline behavior and usual routines.
The person’s functional ability and assistance needed related to ADLs (activities of daily living, such as bathing, dressing, eating, toileting, and moving).
Preferred words, signs, gestures, assistive devices, or communication tools.
Known pain behaviors, calming strategies, sensory triggers, and comfort preferences.
Environmental preferences, including whether the person is comforted by a quiet room, someone sitting at the bedside and holding their hand, preferred music, selected visitors, a more social atmosphere, or no visitors at all.
Detailed medication information, including the medication name, dose, route (how it is given), frequency (how often it is given), indication (why it is ordered), expected effect, common side effects, adverse effects (serious or unwanted reactions), and instructions for when to notify the nurse, prescriber, or hospice team if the medication is ineffective or causes concern.
Safe positioning, swallowing precautions (steps to reduce choking or aspiration and facilitate a safe swallow), diet texture, and related supervision needs.
Seizure plans if relevant.
Who should be contacted during the day, evening, overnight, or in a crisis, including the assigned nurse, hospice provider, primary care clinician, on-call administrator, family member, surrogate decision-maker, or emergency services when clinically indicated.
How direct support professionals should report subtle changes, since they often notice distress before it is obvious to others.
Use of equipment such as oxygen, urinary catheters, suction equipment, drains, wheelchairs, shower chairs, electric hospital beds, and other adaptive equipment as clinically appropriate.
Practice Reflection
In one group home setting, a direct support professional noticed that Mary, who usually enjoyed looking through magazines and greeting everyone at the door with a big smile, no longer enjoyed these activities. Although the change seemed small, the direct support professional knew Mary’s routines well enough to bring the concern to the nurse’s attention. That observation helped the team look more closely at possible pain, fatigue, and comfort needs. It also reminded everyone that the people closest to daily care often notice the earliest signs of change, and that these observations are essential to creating the person’s plan of care.
Changes That May Appear in the Months Before Death
As a person approaches the end of life over weeks to months, changes may develop gradually and may be subtle at first. These changes should be interpreted in the context of the person’s diagnosis, baseline function, usual communication style, and typical routines. Common signs may include:
Increased withdrawal from favorite staff and family, activities, or surroundings.
Sleeping more, reduced stamina, or longer rest periods needed.
Decreased verbal communication or increased reliance on touch, presence, facial expression, gestures, or quiet reassurance.
Disorientation to place, person and time, confusion, delirium (sudden serious confusion), or changes in awareness.
Progressive decrease in appetite or oral intake, increased preference for liquids, and reduced interest in food.
Functional decline, increased weakness, reduced mobility, or increased need for assistance with ADLs.
Recurrent infections, repeated hospitalizations, aspiration pneumonia (food, fluid, or saliva entering the airway), or overall decline despite treatment.
Lower blood pressure, temperature changes, pale or mottled (blotchy) skin, bluish skin, or cool hands and feet.
Changing breathing patterns, congestion, or use of accessory muscles (neck, shoulder, or chest muscles) to aid breathing.
For people with IDD, decline may first appear as a change from personal baseline rather than as a clearly stated symptom. Caregivers should report:
Refusing favorite activities or withdrawal from favorite staff and familiar people.
Changes in vocalizations, facial expression, posture, gait, transfers, sleep, or tolerance for usual care.
New resistance to care, agitation, restlessness, or signs of discomfort.
Repeated coughing, choking, difficulty eating or drinking, pocketing food (holding food in the mouth), or suspected aspiration (food, fluid, or saliva entering the airway).
New skin changes, fever, breathing changes, changes in urine output, or sudden changes in awareness.
The Final Days and Hours
In the final days and hours of life, direct support professionals, nurses, and caregivers may witness changes that can be difficult to understand. These changes may include:
A brief surge of energy or alertness may occur and can be misinterpreted as clinical improvement, even though the person may still be actively declining.
Restlessness, agitation, anxiety, or signs of hypoxia (low oxygen), such as increased work to breathe, dusky color, or unusual distress.
Slower, irregular breathing, periods of apnea (pauses in breathing), or changes in breathing pattern.
Decreased responsiveness, reduced interaction, or inability to awaken.
Decreased or absent urine output as circulation (blood flow) and organ function decline.
Fear, distress, unresolved emotional concerns, or spiritual needs.
When a person with intellectual and developmental disabilities becomes less responsive, continue familiar supports:
Ensure that prescribed pain medication is administered consistently as ordered and, when appropriate, before personal care, repositioning, bathing, or other interventions that may cause discomfort.
Identify yourself before providing care.
Use familiar words, phrases, music, routines, or objects.
Explain care before touching, turning, or moving the person.
Allow extra processing time.
Reassure families, housemates, and staff that irregular breathing, pauses in breathing, and noisy respiratory secretions (fluid sounds in the throat or chest) can occur as part of the natural dying process. These changes often sound worse to caregivers than they feel to the person, who is typically unconscious and not experiencing pain or distress from the sound itself.
Physical Care and Comfort
Comfort-focused care means keeping the person as comfortable as possible by preventing distress, recognizing symptoms early, and responding promptly to changes in comfort.
Pain prevention and relief.
Breathing comfort.
Skin protection and mouth care.
Eating, swallowing, nausea, constipation, and hydration comfort.
Temperature sensitivity, fever, chills, or temperature changes.
Fatigue, rest, and conserving energy for what matters most.
Because pain and distress may be expressed through behavior, caregivers should look for changes from the person’s usual baseline including:
Facial expression, body tension, breathing, sleep, or appetite.
Mobility, tone, posture, protective movements, or refusal of care.
Self-injury, vocalizations, restlessness, withdrawal, or loss of interest in preferred people or activities.
Any repeated change from baseline must be reported without assuming it is intentional or behavioral. Medical causes, pain, infection, medication effects, constipation, urinary retention, low oxygen, and other sources of distress should be considered before a change is viewed as behavioral. This is particularly important during illness and end-of-life care.
Pain Management
While the disease process may not be reversible, pain and suffering can most often be relieved. At the end of life, prescribed medications should be administered as ordered and adjusted in collaboration with the nurse, prescriber, hospice, or palliative care team when symptoms are not controlled or side effects become concerning. The body may need time to adjust to pain medication, but effective relief can improve quality of life for the time that remains.
A person who appears to be sleeping can still feel pain. One sign of comfort is being able to turn the person from side to side and onto their back without moaning, grimacing, crying, or tearing.
In practice, teams often use routine medications for steady relief along with breakthrough medications (extra medicine ordered for sudden pain or symptom flare-ups). Frequent adjustments are normal as disease progresses, so caregivers should report all changes that might signal pain.
Nonpharmacologic comfort measures (comfort steps that do not involve medicine) should be individualized to the person’s sensory profile (how the person responds to touch, sound, light, movement, and other sensations). Helpful support may include preferred positioning, familiar blankets or objects, quiet voices, low lighting, music the person enjoys, gentle touch if tolerated, medication before turning or bathing when prescribed, and limiting unnecessary stimulation. When opioids (strong pain medicines) are used, monitor bowel patterns closely because constipation may appear as agitation, refusal to eat, or restlessness.
Breathing Problems
Breathlessness, or dyspnea (feeling short of breath), is one of the most distressing symptoms to witness, but several simple measures may help. Raising the head of the bed and side-lying positioning can ease the work of breathing. Air movement from a partially opened window with a fan and a bowl of ice in front of the open window may also relieve the sensation of breathlessness. Medications such as morphine or lorazepam may also be used as prescribed to relieve distress.
Noisy breathing caused by retained secretions (fluid or mucus in the throat or chest) can be upsetting for loved ones, housemates, and staff. For a person with intellectual and developmental disabilities, simple reassurance may help while the care team uses comfort measures such as side positioning, mouth care, avoiding unnecessary fluids, or prescribed medication for secretions. Suctioning can be frightening or uncomfortable and should be used sparingly during hospice care, guided by nursing or hospice staff.
Skin Integrity
As mobility and circulation decline, skin becomes fragile and needs gentle, consistent attention. Keep the skin clean and dry, use alcohol-free moisturizer, and keep the lips moisturized with a water-based or petroleum-free product, particularly when oxygen is being used. Petroleum-based products such as petroleum jelly can be combustible and should be avoided around oxygen unless approved by the clinical team. Reposition the person regularly, usually every two hours or as directed, to help prevent skin breakdown (pressure sores). Caregivers should document and report skin changes, especially discoloration (pink or red areas) over bony prominences (areas where bone is close to the skin), such as the heels, hips, lower back, shoulder blades, back of the head, and ears, that do not completely fade within 30 minutes after repositioning. Nursing, physical therapy, and occupational therapy can evaluate supportive tools such as a pressure-relieving mattress, heel protectors, or other pressure-relieving devices.
Mouth care may require extra patience for people with intellectual and developmental disabilities who have oral sensitivity (strong reactions to mouth care), bite reflexes, limited cognitive capacity, or previous difficult experiences with dental care. Use the person’s preferred approach whenever possible, explain each step, offer choices, and stop if care causes distress. Report white patches, bleeding, sores, cracked lips, refusal of oral care, or signs that the mouth is painful to the nurse.
Digestive Problems and Solutions
Digestive troubles are common and may arise from medications, the underlying diagnosis, swallowing difficulty, fatigue, and pain. They may include nausea, vomiting, constipation, decreased appetite, and abdominal discomfort. Helpful responses include meeting the person where they are, offering frequent small meals, providing needed assistance, serving favorite foods when safe, and honoring dining preferences.
Decreased oral intake over time can be a natural physiologic response (a normal body response) as a person approaches the end of life rather than a cause for alarm. The gradual decline in eating may be one of the body’s ways of preparing for death, and forcing food can increase discomfort rather than relieve it.
For people with intellectual and developmental disabilities, follow the established eating plan closely, including texture, pacing, positioning, adaptive utensils, supervision level, and speech-language pathology recommendations. Stop offering food or fluids if the person coughs, chokes, pockets food, turns away, becomes very drowsy, or shows distress. Comfort may come from mouth swabs, lip care, safe favorite tastes, and being included in mealtime routines without pressure to eat.
Temperature and Sensitivity
Many factors, including medications, diagnosis, and environment, can alter a person’s sense of touch and temperature. Extremities may grow cool, some areas of the body may darken or turn bluish, and the person may have shifts in body temperature. Watch sweating, shivering, pushing off or pulling up covers, facial flushing, and changes in the feel or color of the skin. Simple comfort measures include avoiding drafts, using extra non-electric blankets when needed, and offering socks or hats that help to retain warmth.
Avoid heating pads, electric blankets, or very hot water bottles because fragile skin can burn easily and the person may not be able to verbalize (use words) or indicate discomfort. For people with intellectual and developmental disabilities, temperature discomfort may appear as pulling at clothes, removing covers, rocking, grimacing, vocalizing, withdrawing, or resisting care. Use light covers, adjust the room temperature, offer a cool cloth, and report persistent fever or distress to the nurse.
Fatigue
Conserving energy becomes a priority. Keep things simple and follow nursing direction, including using bed baths instead of showers or tub baths when appropriate. This is a time to provide more assistance with activities of daily living (basic daily care needs, such as bathing, dressing, eating, toileting, and moving); promoting independence is no longer the goal. Preserving energy allows the person to spend it on what matters most to them.
Cluster care (group care tasks together) so the person has longer periods of uninterrupted rest. For people with intellectual and developmental disabilities, preserve familiar times, caregivers, objects, music, and rituals when possible while reducing exhausting tasks. Plan bathing, repositioning, oral care, and visitors around the person’s best times of day.
Creating a Bucket List of What Matters Most
Creating a bucket list encourages activities, events, experiences, relationships, and moments that are most meaningful to the person. The bucket list should be developed with the person involved as much as possible, using their preferred communication style, familiar supporters, choices, pictures, objects, or other supports that help them express what brings joy, comfort, meaning, and connection. This planning should begin as the person is aging, showing health decline, living with serious illness, or approaching a time when energy and ability may become more limited. A person-centered bucket list helps caregivers and the interdisciplinary team focus time, attention, and support on what matters most to the person while honoring dignity, preference, and quality of life.
Practice Reflection
Bill loved life. As his health declined, his team continued helping him add to and complete the wishes on his bucket list. Some wishes were big, including a trip to Disney World, Niagara Falls, a dinner show, and a hot air balloon ride. Others were the simple daily moments that made Bill himself: making people laugh, playing harmless pranks, and keeping familiar joy alive even during illness. On the day he died, Bill wished for a snowman. His final smiles came as he watched the snowman, complete with all the fixings, being built on his bedside table. It was a small wish, lovingly honored, and a lasting reminder that what matters most to a person may still bring comfort, dignity, and joy at the end of life.
Emotional Needs
The emotional landscape at end of life deserves as much care as the physical. Helpful supports include: • Honoring the person’s choices whenever possible.
Making room for fear, confusion, grief, or uncertainty.
Offering open conversation, quiet listening, and familiar reassurance.
Supporting important relationships and opportunities to say goodbye.
Including spiritual care, faith traditions, counseling, palliative care, and medication support when appropriate.
People with intellectual and developmental disabilities may express anxiety, grief, fear, pain, or delirium (sudden serious confusion) through behavior rather than words. Report sudden or unusual:
Agitation, hallucinations (seeing or hearing things that are not there) that cause distress, self-injury, aggression, or withdrawal.
Unusual behavior for the person.
Signs that may reflect pain, infection, medication effects, urinary retention (not being able to urinate), constipation, low oxygen, sensory overload (too much noise, touch, light, or activity), or emotional distress.
Physical Contact and Environment
The physical environment can influence comfort, safety, and emotional calm at the end of life. Consider:
Whether the person is comforted by quiet, familiar company, music, celebration, conversation, prayer, or stillness.
Lighting, noise level, room temperature, familiar objects, and sensory comfort (what helps the person feel calm through touch, sound, light, smell, or movement).
Visitor preferences, including who the person wants nearby, when visits become tiring, and when quiet time is needed.
Preferred touch, such as handholding, gentle touch, or no touch at all.
Physical touch and the environment should be guided by the person’s preferences, communication style, and sensory needs. Some people with intellectual and developmental disabilities are comforted by handholding, a weighted blanket if already part of the person’s approved plan and clinically appropriate, familiar music, prayer, reading aloud from a sacred or meaningful text, favorite objects, or the presence of a trusted staff member. Others may find touch, noise, light, strong smells, or visitors overwhelming (too much to tolerate). Ask permission when possible, observe the person’s response, and stop or change the support if the person pulls away, stiffens, grimaces, vocalizes in distress, or shows other signs of discomfort.
Supporting Housemates, Families, and Caregivers
End-of-life care affects not only the person who is dying, but also the people who live with, love, and support them. Housemates, family members, direct support professionals, and caregivers may need:
Simple, honest explanations that are appropriate for their cognitive function.
Opportunities to ask questions, express feelings, visit, or say goodbye.
Ways to participate, such as making cards, choosing music, sharing a memory, or offering a small gift.
Spiritual care, grief support (help with sadness, loss, and remembering the person), counseling, respite (short breaks from caregiving responsibilities), or team debriefing when available.
Encouragement for caregivers and direct support professionals to acknowledge their own grief, seek support, and ask for help.
Additional clinical support in the home when symptoms, grief reactions, or caregiver stress increase.
Housemates with intellectual and developmental disabilities should not be excluded from grief support. They may need simple, truthful information; choices about how to be involved; and support with memorial activities. Direct support professionals may also grieve deeply because they often have long-standing relationships with the person. Ongoing education and training about the end-of-life process, respite, counseling, spiritual care, bereavement support, and team debriefing should be offered and is often helpful.
Practice Reflection Bob was a 45-year-old gentleman who lived in a group home setting. Bob became very ill and, after a lengthy hospitalization, came home on hospice care. His housemates were given simple, honest explanations and choices about how to express their care, grief, and love for their housemate. Some created cards, one person chose a song to play softly, another chose a book to be read to Bob, and another housemate decided to sit quietly at Bob’s bedside for short periods. Each gesture was small, but together they allowed the housemates to be included in a way that was meaningful and respectful.
Being Present
When all the tasks and techniques are accounted for, the heart of this work is simpler than any of them: steady, calm, willing presence can be one of the greatest comforts offered at the end of life.
At the end of life, excellent care is not measured only by what is done, but by how it is offered. Gentle attention, timely comfort measures, honest communication, and steady presence help create an atmosphere where the person is respected, supported, and never alone.
For a person with intellectual and developmental disabilities, being known by name, by routine, by favorite things, by relationships, and by the ways they communicate is part of dignity at the end of life.
Practice Reflection
Near the end of Laurie’s life, there were moments when no task needed to be completed. A direct support professional (DSP) sat quietly beside Laurie’s bed, holding her hand because that had always been comforting to her, and played music she had loved over the years. Nothing outwardly remarkable happened, but these moments reflected the value of steady presence, familiar comfort, and knowing what had mattered to Laurie throughout life. The DSP later described it as one of the clearest examples of care she had ever provided.
Conclusion
Caring for a person with intellectual and developmental disabilities at the end of life is both clinical and deeply human work. It requires careful observation, timely comfort measures, respect for legal and ethical processes, and a commitment to keeping the person’s voice, dignity, relationships, and preferences at the center of care. When families, direct support professionals, nurses, clinicians, and others in the circle of support work together, end-of-life care can be safe, appropriate, compassionate, and meaningful while honoring the person’s life and supporting housemates, staff, and clinicians through the grieving process.
Author Note
Ruth Benjamin is an RN consultant with more than five decades of nursing experience, including 34 years in intellectual and developmental disability nursing at Heritage Christian Services. Her work has included clinical and administrative leadership, health management, research, complex medical care, and end-of-life care support. Her professional service includes advocacy and consultation for people with intellectual and developmental disabilities who have complex medical concerns; service as founder and president of the Finger Lakes Nurse Honor Guard; board service with the Developmental Disabilities Nurses Association and Shepherd Home; participation on mortality review and surrogate decision-making processes in partnership with the Justice Center for the Protection of People with Special Needs; and related community and professional service in aging, disability, comfort care, and end-of-life support.
About the Author
Ruth Benjamin has spent more than 50 years working with and advocating for people with intellectual and developmental disabilities, their families, and support staff. She served for 33 years at Heritage Christian Services as Director of Health Management and Research, providing leadership to nursing and dietitian teams and medical oversight for 400 individuals with intellectual disabilities. Before retiring in 2023, she also served as Aging and End-of-Life Care Planner. Ruth continues to consult on care for people with I/DD and complex medical needs and has mentored professionals and presented locally and nationally.
She is founder and president of the Finger Lakes Nurse Honor Guard and holds certifications as a Certified Developmental Disability Nurse, Certified Rehabilitation Registered Nurse, board-certified gerontology nurse, Certified Hospice and Palliative Care Nurse, Advanced Steps ACP Facilitator, and end-of-life doula. Ruth serves on several committees and boards, including the Regional Mortality Review Committee, Third Age Committee, Surrogate Decision-Making Panel, Developmental Disability Nursing Association, and Shepard Home. She has also contributed to I/DD curriculum development for nursing students at St. John Fisher College.
References
Additional Resources Used
End-of-Life Care Framework: Coalition for Compassionate Care of California, People with Developmental Disabilities Resources, including Thinking Ahead: My Life at the End.
Palliative Care and Hospice: National Institute on Aging, What Are Palliative Care and Hospice Care?; Mayo Clinic Health System, Palliative Care.
Interdisciplinary Team and Decision-Making: Palliative Care Network of Wisconsin, Palliative Care for Adults with Intellectual and Developmental Disabilities; Palliative Care Network of Wisconsin, Decision Making for Adults with Intellectual and Developmental Disabilities Near the End of Life.
Physical Care and Comfort: National Institute on Aging, Providing Care and Comfort at the End of Life; Palliative Care Network of Wisconsin, Palliative Care for Adults with Intellectual and Developmental Disabilities.
Emotional Needs: National Institute on Aging, Providing Care and Comfort at the End of Life; Palliative Care Network of Wisconsin, Palliative Care for Adults with Intellectual and Developmental Disabilities.
Environment and Sensory Comfort: National Institute on Aging, Providing Care and Comfort at the End of Life; Coalition for Compassionate Care of California, People with Developmental Disabilities Resources.