Hospice and Palliative care Nutrition

Hospice and Palliative care Nutrition

Jul 3, 2025 | Light the Way Blog, Hospice Care, Serious Illness Care

Hospice and Palliative care Nutrition

Nurse with stethoscope listening to childs heart.

A hospice dietitian plays a vital role in enhancing the quality of life for patients receiving care, whether at home or in a facility. Dietitians can assist in developing individualized nutrition plans tailored to the patient’s specific medical conditions, treatment goals, and personal preferences, particularly addressing symptoms like loss of appetite and nausea.

With many Americans living with chronic diseases, the demand for such specialized nutrition support is increasing. Preferences are shifting towards home-based care, making the role of dietitians even more critical. Dietitians can focus on improving patients’ well-being by managing their nutritional intake throughout the various stages of chronic illness rather than just at the end of life.

What challenges do patients and families face in dietary management during hospice care?

  • Changes in Appetite: Patients may experience reduced appetite or sudden changes in their taste preferences, making it difficult to maintain proper nutritional intake.
  • Medication Side Effects: Many patients face gastrointestinal issues, like nausea or constipation, due to medications or their illness, further complicating their ability to consume food.
  • Psychological Stress: The emotional toll of end-of-life care can affect willingness to eat, leading families to feel guilty or uncertain about food choices.

Nutritional Preferences

Nutritional preferences at end-of-life should begin early, allowing families to comprehend the implications of these choices.

Having discussions with patients regarding their wants, needs, and preferences will provide an environment that is inviting, supportive, and encouraging around both mealtime and nutrition. Honoring the patient’s cultural and social foods will provide normalcy and comfort in times of both uncertainty and stress. Relaxing some restrictions while preserving the safety of the patient can also be considered to include favorite meals and drinks.

Hydration

Offer frequent care of the mouth and lips to the dying person and include the management of dry mouth in their care plan, if needed.

Offer the person the following, as needed:

  • help with cleaning their teeth or dentures, if they would like
  • frequent sips of fluid

Safety

Safety when eating and drinking should always be at the forefront of the nutrition care plan. Because patients will experience differences in muscle tone, cues, moisture levels of the mouth, this can pose a danger of an activity that was once very innate to the patient. Involving staff to monitor for adequate chewing and swallowing can be beneficial.

Modified diets such as soft, thickened liquids, and oral nutritional supplementation can aid in providing options for adequacy of intake.

For those patients who have friends and family that choose to provide meals and drinks, please encourage them to verify that the food provided is safe for consumption.

Differences in Nutritional Approaches

In care, the primary focus is on improving quality of life and managing symptoms. This involves individualized nutritional support tailored to the patient’s specific needs. Nutrition strategies may include oral Supplements which can enhance calories and protein intake.

What are the ethical considerations regarding nutrition and feeding in end-of-life care?

The ethical considerations regarding nutrition and feeding in end-of-life care focus primarily on balancing adequate nutrition with the overall quality of life for the patient.

In this sensitive phase, adhering to guidelines such as those from the National Institute for Health and Care Excellence are used, commonly deferring to basic needs of hydration and tolerance to foods.
Many patients at this stage may not feel hunger, and providing such interventions can sometimes interfere with the comfort-focused goals of palliative care and/or the patient’s safety.

The emphasis should be on enhancing the patient’s well-being rather than just prolonging life. Therefore, individualized care plans tailored to each patient’s wishes and preferences surrounding hydration and nutrition become necessary.

Dietitians are important members of the hospice care team, providing essential nutritional guidance that respects the diverse needs and desires of patients facing the end of life.

Interdisciplinary collaboration, sensitivity to ethical dilemmas, and dedication to enhancing comfort highlight the profound impact dietitians have in these settings, ultimately enriching the journey of patients and their families through compassionate and tailored nutrition care.

About the Author

Elizabeth DeAvilla is a Registered Dietitian based out of the northwest suburbs of Chicago. She earned her bachelor’s degree in nutrition and dietetics from Northern Illinois University and her master’s in business administration from Dominican University. She is currently pursuing a Ph.D. in Human Performance at Concordia University Chicago. She has worked within the hospice-specific population since June of 2023, following finding a passion for treating and educating families in an inpatient setting. Elizabeth has worked in every facet of nutrition, from critical care medicine to food service and behavioral health to community organizations such as Head Start. Her passions include teaching in the settings of community organizations, schools, hospitals, and anywhere else where the science of nutrition and food is found.

Questions or Concerns

If you have questions or concerns, please feel free to reach out to Elizabeth DeAvilla RDN at 815.740.4104 for more information and assistance with the nutritional needs of your patients.

Through darkness, we bring light

Contact Lightways

Call 815.740.4104

Living with ALS: How Serious Illness Care Enhances Quality of Life

Living with ALS: How Serious Illness Care Enhances Quality of Life

Jun 19, 2025 | Serious Illness Care, Light the Way Blog

Living with ALS: How Serious Illness Care Enhances Quality of Life

Nurse pushing elderly man in wheelchair
Receiving a diagnosis of Amyotrophic Lateral Sclerosis (ALS) can be life-altering and deeply overwhelming. ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, gradually impairing muscle control. While there is currently no cure, there is hope in the form of compassionate, supportive care. Serious Illness Care or Palliative Care offers an essential layer of support for individuals living with ALS and their families—starting from diagnosis and throughout the journey.

Understanding ALS: A Complex Journey

ALS leads to muscle weakness, difficulty speaking, swallowing, and eventually breathing. The disease progresses at different rates for different people, but it often results in significant physical and emotional challenges for both patients and caregivers. Managing these challenges requires more than just neurological care—it requires whole-person support.

That’s where serious illness care or palliative care comes in.

What Is Serious Illness Care or Palliative Care?

Serious Illness Care is specialized medical care for people with serious illnesses. It focuses on relieving symptoms, managing pain, and improving quality of life—for both patients and their families. It’s appropriate at any stage of illness and can be provided alongside with ongoing treatments, including medications, physical therapy, and respiratory support.

For someone with ALS, serious illness care is not about giving up—it’s about living better with the disease.

The Benefits of Serious Illness Care for ALS Patients

Here are some of the key ways serious illness care supports individuals living with ALS:

1. Managing Complex Symptoms

ALS can cause:

  • Muscle cramps and stiffness
  • Breathing difficulties
  • Swallowing and speaking challenges
  • Sleep disturbances
  • Anxiety and depression

Serious Illness Care teams are experts at managing these symptoms, helping patients stay as comfortable and functional as possible.

2. Emotional and Psychological Support

A diagnosis like ALS brings emotional challenges, fear, grief, uncertainty, and depression are common. Serious Illness Care includes psychological and emotional counseling to help both patients and families cope, maintain hope, and process the ongoing changes.

3. Advance Care Planning

As ALS progresses, making informed decisions about future care becomes critically important. Serious Illness Care helps guide conversations about:

  • Feeding tubes
  • Ventilator use
  • End-of-life wishes
  • Legal and ethical decisions

These discussions are handled in alignment with the patient’s values and goals and with compassion and respect.

4. Support for Families and Caregivers

ALS doesn’t just affect the person diagnosed—it deeply impacts loved ones. Serious Illness Care offers:

  • Education about disease progression
  • Help navigating complex medical systems
  • Grief support, when needed

5. Home and Community-Based Support

Serious Illness Care can often be delivered at home, allowing patients to remain in a familiar environment. This can reduce the need for hospital visits and improve comfort.

Why Start Serious Illness Care Early?

Many people mistakenly believe Serious Illness Care is only for the final stages of illness. But for ALS, early involvement of Serious Illness Care leads to better outcomes, including:

  • More control over care decisions
  • Earlier management of symptoms
  • Reduced stress on caregivers
  • Improved quality of life for longer

Early support gives patients the time and space to focus on what matters most—family, meaningful experiences, and living with dignity.

ALS is a formidable diagnosis, but no one must face it alone. Serious Illness Care is a vital partner in the ALS journey, offering expertise, comfort, and dignity at every step. If you or someone you love is living with ALS, ask your neurologist or primary care provider about a referral to serious illness care or palliative care. The earlier you involve a palliative team, the better the support—and the more empowered the journey can be.

Schedule a consultation

Support is available. You don’t have to walk this path without help. Call Lightways Hospice and Serious Illness Care today at 815.740.4104.

Through darkness, we bring light

Contact Lightways

Call 815.740.4104

Understanding Serious Illness Care (Palliative Care): A Compassionate Approach to Living Well

Understanding Serious Illness Care (Palliative Care): A Compassionate Approach to Living Well

Jun 5, 2025 | Hospice Care, Light the Way Blog, Serious Illness Care

Understanding Serious Illness Care (Palliative Care): A Compassionate Approach to Living Well

Daughter hugging elder mother outdoors

When faced with a serious illness, patients and their families often feel overwhelmed by the medical system, symptom burden, and emotional stress. In such moments, Serious Illness Care or palliative care can be a powerful, supportive ally—yet it remains one of the most misunderstood services in healthcare. This blog explores what palliative care truly is, its benefits, why early enrollment matters, and the common myths that surround it.

What Is Serious Illness Care (Palliative Care)?

Serious Illness Care or Palliative care is specialized medical care focused on providing relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. Its goal is to improve quality of life for both the patient and their family.

This type of care is provided by a team of nurses, social workers, chaplains, and other specialists who work alongside a patient’s existing healthcare providers. Serious Illness Care can be offered at any stage of a serious illness and can be provided with curative treatments.

The Benefits of Palliative Care

  1. Improved Quality of Life
    Serious Illness Care helps patients better manage symptoms such as pain, fatigue, shortness of breath, nausea, loss of appetite, anxiety, and depression—allowing them to live as fully and comfortably as possible.
  2. Emotional and Spiritual Support
    Beyond physical symptoms, Serious Illness Care addresses emotional and spiritual concerns, offering counseling, guidance, and resources to help patients and families cope.
  3. Better Communication and Care Coordination
    Serious Illness Care teams help clarify treatment goals, facilitate important conversations about care preferences, and coordinate between multiple healthcare providers.
  4. Support for Families and Caregivers
    Family members receive guidance, respite, and help with difficult decisions, reducing caregiver burnout and stress.
  5. Reduced Hospital Visits and Emergency Care
    By proactively managing symptoms and aligning care with patient values, palliative care can reduce unnecessary hospitalizations and ER visits.

Why Early Enrollment Is So Important

A common misconception is that palliative care is only for the very end of life. In reality, the earlier it’s introduced, the more beneficial it can be.

Early enrollment means:

  • More time to manage symptoms effectively
  • More support during difficult treatments
  • Better emotional well-being throughout the illness journey
  • Improved ability to make informed decisions over time

Studies show that patients who receive palliative care early often live longer, with better quality of life.

Common Misconceptions About Serious Illness Care

Despite its benefits, Serious Illness Care is often misunderstood. Here are some common myths—debunked:

“Serious Illness Care is the same as hospice.”
Serious Illness Care or palliative care is appropriate at any stage of a serious illness and can be given with curative treatments.

“Accepting Serious Illness Care means giving up.”
Not at all. In fact, palliative care can help patients tolerate aggressive treatments better by managing side effects and preserving strength.

“Only cancer patients need Serious Illness Care.”
Serious Illness Care or palliative care benefits patients with many serious conditions, including heart failure, chronic obstructive pulmonary disease (COPD), kidney disease, Alzheimer’s, Parkinson’s, and more.

“My doctor will recommend it when the time is right.”
Unfortunately, not all healthcare providers refer patients early enough. Advocating for a Serious Illness Care consultation sooner rather than later can make a big difference.

Serious Illness Care is about living well, even while facing serious illness. It empowers patients and families, provides relief, and aligns treatment with what matters most to the individual. Far from being a last resort, it is a proactive approach to whole-person care—one that everyone deserves to understand and consider.

Schedule a consultation

If you or a loved one is living with a serious illness, ask your healthcare provider if Serious Illness Care or palliative care could be right for you. Early support can change the journey for the better. Call Lightways Hospice and Serious Illness Care today for more information at 815.740.4104.

Through darkness, we bring light

Contact Lightways

Call 815.740.4104

Compassionate Care for Kids: Understanding Pediatric Hospice and Palliative Care Services

Compassionate Care for Kids: Understanding Pediatric Hospice and Palliative Care Services

May 22, 2025 | Light the Way Blog, Pediatric Care

Compassionate Care for Kids: Understanding Pediatric Hospice and Palliative Care Services

Nurse with stethoscope listening to childs heart.

Lea este artículo en español

When a child is diagnosed with a life-limiting or complex medical condition, families face an emotionally overwhelming and uncertain path. In these moments, pediatric palliative and hospice care can offer comfort, guidance, and meaningful support. Yet, many families are unfamiliar with what these services are—or worse, fear them due to common misconceptions.

What Is Pediatric Palliative and Hospice Care?

Pediatric palliative care is specialized medical care for children with serious, chronic, or life-threatening illnesses. It focuses on improving quality of life by managing physical symptoms, providing emotional and spiritual support, and helping families make informed decisions throughout their journey.

Pediatric hospice care is a form of palliative care specifically for children who are approaching the end of life—typically when life expectancy is measured in months rather than years. It ensures that children are cared for with comfort and dignity, often in the home or a familiar setting, surrounded by loved ones.

Who Can Benefit from Pediatric Palliative Care?

Palliative care is appropriate for children facing a wide range of serious conditions, such as:

  • Cancer
  • Congenital heart disease
  • Genetic or metabolic disorders
  • Neurological conditions like severe cerebral palsy
  • Muscular dystrophies
  • Cystic fibrosis
  • Complications of prematurity
  • Rare or undiagnosed illnesses

It is not limited by prognosis—children can receive palliative care at any stage of their illness and even while undergoing curative treatment.

The Benefits of Pediatric Palliative and Hospice Care

  1. Holistic Symptom Management
    Palliative care teams are experts in controlling pain, nausea, fatigue, breathing difficulties, seizures, and other distressing symptoms—, allowing children to feel more comfortable and present.
  2. Emotional and Psychological Support
    Serious illness affects the whole family. Palliative care includes age-appropriate counseling for the child and emotional support for siblings, parents, and caregivers. Lightways Hospice and Serious Illness Care has a team of Child Life Specialists that support children and their families with the stresses of having a loved one who is in hospice or has a serious illness through guiding conversations, caregiver support, coping strategies, therapeutic play, education, advocacy, memory making/legacy building, and bereavement support.
  3. Care Coordination and Advocacy
    The palliative team helps works to coordinate between specialists, hospitals, and home care providers—ensuring that the child’s care is seamlesscoordinated, consistent, and family-centered.
  4. Spiritual and Cultural Sensitivity
    Families receive support that respects their values, beliefs, and traditions during times of uncertainty and grief.
  5. End-of-Life Support (Hospice Care)
    When curative options are no longer effective, pediatric hospice care offers compassionate comfort, memory-making opportunities, and dignified support—often in the home environment, where children and families feel most at ease.

Why Early Enrollment Matters

A common myth is that palliative or hospice care is only for the very end of life. In fact, early integration leads to better outcomes, including:

  • Earlier and more effective symptom management
  • Less time in the hospital and more time at home
  • Reduced parental stress and caregiver burnout
  • More time to plan meaningful goals and experiences
  • Smoother transitions in care as needs change

Enrolling early means families have more time to build trust with the care team, express their hopes and fears, and explore all available options—without pressure.

What are the Common Misconceptions of Pediatric Hospice and Palliative Care?

“It means we’re giving up.”
Not true. Palliative care is about living better—not surrendering. Many children continue treatments like chemotherapy, surgeries, or experimental therapies while receiving palliative support.

“Hospice is just for adults.”
Pediatric hospice is tailored to the unique needs of children and their families. It includes specialized staff trained to handle both complex medical care and emotional dynamics specific to pediatric illness.

“It’s only for children who are dying.”
Palliative care is beneficial from diagnosis, through treatment, remission, or in rare cases, recovery. It is as much about living well as it is about supporting the end-of-life process, when needed.

“My child’s doctors will tell me when it’s time.”
Unfortunately, many families are referred too late. It’s okay—and often beneficial—for families to ask about palliative care early in the disease course.

Choosing Support Early Is a Gift

Pediatric palliative and hospice care is not about giving up hope—it’s about expanding it. It offers hope for comfort, for quality time, for meaningful moments, and for a care journey centered on love and dignity.

No parent should have to navigate a child’s serious illness alone. Palliative care teams are here to walk alongside, offering skilled, compassionate care every step of the way.

If your child is facing a serious illness, ask your healthcare team if palliative care is an option or reach out directly to Lightways Hospice and Serious Illness Care at 815.740.4104. Starting early can bring clarity, comfort, and peace in even the most difficult circumstances.

Insurance Coverage & Financial Assistance

Coverage for concurrent care varies by insurance provider and plan type. Lightways Hospice and Serious Illness Care is committed to working with families to help navigate their individual coverage and benefits.

Additionally, Lightways provides charity care and financial assistance to eligible families to ensure that care is accessible regardless of financial circumstances.
Please contact us at 815.740.4104 or speak directly to a social worker assigned to your case for more information on how to apply for charity care or financial assistance.

What is Concurrent Care?

Concurrent care allows children with serious illnesses to receive both curative treatments (such as chemotherapy, disease-modifying therapies, or other medical interventions) and palliative or hospice care at the same time. This approach ensures that children and their families receive symptom management, pain relief, and emotional support while continuing treatments aimed at their underlying condition.

Coverage for concurrent care varies based on insurance plans and state-specific Medicaid policies. Families should check with their insurance provider to understand their specific benefits. If you have questions, our Lightways team is available to help guide you through the process.

Schedule a consultation

Contact Lightways Hospice and Serious Illness Care directly at 815.740.4104 for additional information or to schedule a consultation.

Through darkness, we bring light

Contact Lightways

Call 815.740.4104

Atención compasiva para niños: Comprensión de los servicios de cuidados paliativos y hospicio pediátricos

Atención compasiva para niños: Comprensión de los servicios de cuidados paliativos y hospicio pediátricos

May 21, 2025 | Light the Way Blog

Atención compasiva para niños: Comprensión de los servicios de cuidados paliativos y hospicio pediátricos

Nurse with stethoscope listening to childs heart.

Cuando a un niño se le diagnostica una afección médica compleja o que limita su vida, las familias se enfrentan a un camino emocionalmente abrumador e incierto. En estos momentos, los cuidados paliativos pediátricos y los cuidados paliativos pueden ofrecer consuelo, orientación y apoyo significativo. Sin embargo, muchas familias no están familiarizadas con lo que son estos servicios o, lo que es peor, les temen debido a conceptos erróneos comunes.

¿Qué son los cuidados paliativos y de hospicio pediátricos?

Los cuidados paliativos pediátricos son atención médica especializada para niños con enfermedades graves, crónicas o potencialmente mortales. Se enfoca en mejorar la calidad de vida mediante el manejo de los síntomas físicos, brindando apoyo emocional y espiritual, y ayudando a las familias a tomar decisiones informadas a lo largo de su viaje.

Los cuidados paliativos pediátricos son una forma de cuidados paliativos específicamente para niños que se acercan al final de la vida, generalmente cuando la esperanza de vida se mide en meses en lugar de años. Garantiza que los niños sean atendidos con comodidad y dignidad, a menudo en el hogar o en un entorno familiar, rodeados de sus seres queridos.

¿Quién puede beneficiarse de los cuidados paliativos pediátricos?

Los cuidados paliativos son apropiados para los niños que enfrentan una amplia gama de afecciones graves, como:

  • Cáncer
  • Cardiopatías congénitas
  • Trastornos genéticos o metabólicos
  • Afecciones neurológicas como la parálisis cerebral grave
  • Distrofias musculares
  • Fibrosis quística
  • Complicaciones de la prematuridad
  • Enfermedades raras o no diagnosticadas

No está limitado por el pronóstico: los niños pueden recibir cuidados paliativos en cualquier etapa de su enfermedad e incluso mientras se someten a un tratamiento curativo.

Los beneficios de los cuidados paliativos y de hospicio pediátricos

  1. Manejo de los síntomas. Los equipos de cuidados paliativos son expertos en controlar el dolor, las náuseas, la fatiga, las dificultades respiratorias, las convulsiones y otros síntomas angustiantes, lo que permite que los niños se sientan más cómodos y presentes.
  2. Apoyo emocional y psicológico. Las enfermedades graves afectan a toda la familia. Los cuidados paliativos incluyen asesoramiento apropiado para la edad del niño y apoyo emocional para los hermanos, padres y cuidadores. Lightways Hospice and Serious Disease Care cuenta con un equipo de especialistas en vida infantil que apoyan a los niños y sus familias con el estrés de tener un ser querido que está en un hospicio o tiene una enfermedad grave a través de conversaciones orientadoras, apoyo del cuidador, estrategias de afrontamiento, juego terapéutico, educación, defensa, creación de memoria/construcción de legado y apoyo para el duelo.
  3. Coordinación y defensa de la atención. El equipo de cuidados paliativos trabaja para coordinar entre especialistas, hospitales y proveedores de atención domiciliaria, lo que garantiza que la atención del niño sea coordinada, coherente y centrada en la familia.
  4. Sensibilidad espiritual y cultural. Las familias reciben apoyo que respeta sus valores, creencias y tradiciones en tiempos de incertidumbre y dolor.
  5. Apoyo para el final de la vida (cuidados paliativos)
    Cuando las opciones curativas ya no son eficaces, los cuidados paliativos pediátricos ofrecen consuelo compasivo, oportunidades para crear recuerdos y apoyo digno, a menudo en el entorno familiar, donde los niños y las familias se sienten más cómodos.

¿Por qué es importante la inscripción temprana?

Un mito común es que los cuidados paliativos o de hospicio son solo para el final de la vida. De hecho,la integración temprana conduce a mejores resultados, que incluyen:

  • Manejo temprano y más eficaz de los síntomas
  • Menos tiempo en el hospital y más tiempo en casa
  • Reducción del estrés de los padres y del agotamiento del cuidador
  • Más tiempo para planificar metas y experiencias significativas
  • Transiciones más suaves en la atención a medida que cambian las necesidades

La inscripción temprana significa que las familias tienen más tiempo para generar confianza con el equipo de atención, expresar sus esperanzas y temores, y explorar todas las opciones disponibles, sin presión.

¿Cuáles son los conceptos erróneos comunes sobre los cuidados paliativos y de hospicio pediátricos?

“Significa que nos estamos rindiendo”.
No es verdad. Los cuidados paliativos consisten envivir mejor, no en rendirse. Muchos niños continúan tratamientos como quimioterapia, cirugías o terapias experimentales mientras reciben apoyo paliativo.

“El hospicio es solo para adultos”.
El hospicio pediátrico se adapta a las necesidades únicas de los niños y sus familias. Incluye personal especializado y capacitado para manejar tanto la atención médica compleja como la dinámica emocional específica de las enfermedades pediátricas.

“Es solo para los niños que se están muriendo”.
Los cuidados paliativos son beneficiosos desde el diagnóstico, pasando por el tratamiento, la remisión o, en casos raros, la recuperación. Se trata tanto de vivir bien como de apoyar el proceso del final de la vida, cuando sea necesario.

“Los médicos de mi hijo me dirán cuándo es el momento”.
Desafortunadamente, muchas familias son referidas demasiado tarde. Está bien, y a menudo es beneficioso, que las familias pregunten sobre los cuidados paliativos en las primeras etapas del curso de la enfermedad.

Elegir el soporte temprano es un regalo

Los cuidados paliativos y de hospicio pediátricos no se trata de perder la esperanza, sino de expandirla. Ofrece esperanza de consuelo, de tiempo de calidad, de momentos significativos y de un viaje de cuidado centrado en el amor y la dignidad.

Ningún padre debería tener que lidiar solo con la grave enfermedad de un niño. Los equipos de cuidados paliativos están aquí para acompañarlos, ofreciendo atención capacitada y compasiva en cada paso del camino.

Si su hijo enfrenta una enfermedad grave, pregúntele a su equipo de atención médica si los cuidados paliativos son una opción o comuníquese directamente con Lightways Hospice and Serious Illness Care al 815.740.4104. Comenzar temprano puede traer claridad, consuelo y paz incluso en las circunstancias más difíciles.

Cobertura de seguro y asistencia financiera

La cobertura para la atención concurrente varía según el proveedor de seguro y el tipo de plan. Lightways Hospice and Serious Disease Care se compromete a trabajar con las familias para ayudar a navegar por su cobertura y beneficios individuales.

Además, Lightways brinda atención caritativa y asistencia financiera a las familias elegibles para garantizar que la atención sea accesible independientemente de las circunstancias financieras.

Comuníquese con nosotros al 815.740.4104 o hable directamente con un trabajador social asignado a su caso para obtener más información sobre cómo solicitar atención caritativa o asistencia financiera.

¿Qué es la atención concurrente?

La atención concurrente permite que los niños con enfermedades graves reciban tratamientos curativos (como quimioterapia, terapias modificadoras de la enfermedad u otras intervenciones médicas) y cuidados paliativos o de hospicio al mismo tiempo. Este enfoque garantiza que los niños y sus familias reciban control de los síntomas, alivio del dolor y apoyo emocional mientras continúan los tratamientos dirigidos a su afección subyacente.

La cobertura de la atención concurrente varía según los planes de seguro y las pólizas de Medicaid específicas del estado. Las familias deben consultar con su proveedor de seguros para comprender sus beneficios específicos. Si tiene preguntas, nuestro equipo de Lightways está disponible para ayudarlo a guiarlo a través del proceso.

Programe una consulta

Para obtener más información o programar una consulta, comuníquese directamente con Lightways Hospice and Serious Illness Care al 815.740.4104.

Through darkness, we bring light

Contact Lightways

Call 815.740.4104

Understanding Advanced Directives: Why They Matter

Understanding Advanced Directives: Why They Matter

May 8, 2025 | Light the Way Blog, Lightways News

Understanding Advanced Directives: Why They Matter

Nurse walking with elderly women outdoors on a beautiful sunny day.

When it comes to healthcare, we often think we have all the time in the world to make decisions about our future. But what happens if we are suddenly unable to voice our wishes? This is where advanced directives come into play. If you’ve never heard of them, or you’re not sure what they entail, don’t worry. Let’s break it down in simple terms.

What Are Advanced Directives?

Advanced directives are legal documents that allow you to express your preferences about medical treatment if you cannot communicate those wishes yourself. They are like a roadmap for your healthcare, helping you navigate some of life’s toughest decisions. Think of it to make your voice heard — even when you cannot speak.

There are a couple of main types of advanced directives:

  1. Living Will: This document outlines your wishes concerning medical treatments — like whether you want life-sustaining measures if you’re terminally ill or in a persistent vegetative state. This document is not legally binding, but it directs your team about your wishes.
  2. Durable Power of Attorney for Health Care: This one is slightly different. It allows you to appoint someone you trust (your agent) to make medical decisions on your behalf if you cannot do so. This person can advocate for your wishes and ensure your preferences are honored. This is a legally binding document.
  3. Do Not Resuscitate (DNR) Order: If you do not want CPR or other life-saving measures used in case of cardiac arrest, a DNR order clearly communicates that wish to medical personnel. In Illinois, this is often called a POLST (Physicians Orders for Life-Sustaining Treatment) in the home or facility setting.

Why Should You Care About Advanced Directives?

You might be thinking, “I’m young and healthy. Why should I worry about this?” Life is unpredictable, and having an advanced directive can provide peace of mind — not just for you, but for your loved ones too.

You might also be thinking, “I don’t want to scare my spouse or my children with these conversations.” Please believe us when we tell you that this is one of the greatest gifts you can give them: a calm, open, and reasonable discussion before a crisis happens. When the crisis happens, your spouse or children have so many other things to deal with, including their sadness and fear. It is such a comfort to know they understand your wishes.

You get to decide what medical treatment you do or do not want. It’s your body, your life, and your choices.

What Happens Without an Advanced Directive in Illinois?

In Illinois, if you become incapacitated and can’t communicate your wishes, decisions about your care will fall to a hierarchy of individuals:

  1. Your Spouse: Your spouse usually has the first say in your medical decisions if you’re married.
  2. Adult Children: If you don’t have a spouse, your adult children will step in next in order of their birth.
  3. Parents: If you don’t have a spouse or children, your parents will be consulted.
  4. Adult Siblings: If your parents are unavailable, your adult siblings will have a say.
  5. Finally, if no one else is available, other relatives may be consulted.

While this may seem straightforward, it can lead to complications. Family members might disagree on what you would have wanted, which can create stress and conflict during a vulnerable time. In some cases, the matter might even end up in court, where a judge will make the final decision — not the outcome you would have preferred.

How to Create Your Advanced Directive

Ready to take control? Here is a simple step-by-step guide to creating your advanced directive:

  1. Think It Through: Reflect on your values and what is important to you regarding healthcare. What treatments would you want or not want?
  2. Choose Your Agent: If you’re creating a Durable Power of Attorney for Health Care, think about who you trust to make decisions on your behalf. This should be someone who knows you well and can advocate for your wishes. Choose someone who can stand up to pressure from the family and communicate well with your health care team if possible.
  3. Get the Right Forms: You can find advanced directive forms online or through your healthcare provider. Make sure you get the Illinois-specific forms to ensure they’re valid in your state. For more information and links to resources, please visit our website at https://lightways.org/advanced-directives/.
  4. Fill It Out: Be clear and specific about your wishes. Don’t hesitate to think things through carefully; this document is about you and your preferences.
  5. Talk About It: Share your advanced directive with your chosen agent, family members, and your healthcare provider. Open communication is key!
  6. Keep Copies Handy: Store copies of your advanced directive safely and give copies to your healthcare provider (physicians, consultants, home health, hospice, and facilities) and family members.

Creating an advanced directive is a powerful way to take charge of your healthcare decisions and ensure your wishes are respected, no matter what happens. It is a gift to yourself and your loved ones — a way to navigate the unpredictable waters of life with confidence. So, why not take the time to create one? You will be glad you did.

Advanced Directive Information

If you have additional questions, please contact Lightways Hospice and Serious Illness Care at 815.740.4104.

Through darkness, we bring light

Contact Lightways

For more information on Advanced Directives, please contact us directly at 815.740.4104.

Call 815.740.4104