Understanding Illinois’ New Medical Aid in Dying Law: What Patients, Families and Healthcare Providers Need to Know

Understanding Illinois’ New Medical Aid in Dying Law: What Patients, Families and Healthcare Providers Need to Know

Oct 9, 2026 | Light the Way Blog, Hospice Care, Serious Illness Care

Understanding Illinois’ New Medical Aid in Dying Law: What Patients, Families and Healthcare Providers Need to Know

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Illinois’ End-of-Life Options for Terminally Ill Patients Act took effect September 12, 2026. Here is what patients, families, and healthcare professionals should know about the new law and the process for requesting medication.

End-of-life decisions are deeply personal and can raise important questions for patients, families and healthcare providers. With Illinois’ new End-of-Life Options for Terminally Ill Patients Act, commonly referred to as Medical Aid in Dying (MAiD) or Deb’s Law, Illinois residents now have another legally recognized end-of-life option if they meet specific requirements established by the law.

What Is Medical Aid in Dying?

Medical Aid in Dying is an end-of-life option that allows a qualifying terminally ill adult to request a prescription for medication that the individual may choose to self-administer to bring about death.

Under Illinois law, the medication must be self-administered by the patient. It cannot be administered by another person, even handed to by another person, and the law does not permit administration by injection, feeding tubes, or IV infusion.

Medical Aid in Dying is one of several end-of-life care options available to qualifying patients. Other options include hospice care, palliative care, comfort-focused care, pain and symptom management, and other treatments consistent with a patient’s goals and wishes. Illinois law specifically requires the attending physician to discuss appropriate end-of-life care options with a patient requesting MAiD.

Who May Qualify?

The Illinois law establishes specific eligibility requirements. Generally, a person requesting medication must:

  • Be 18 years of age or older.
  • Be a resident of Illinois.
  • Have a terminal disease that, within reasonable medical judgment, will result in death within six months.
  • Have the mental capacity to make an informed healthcare decision.
  • Make the request voluntarily and free from coercion or undue influence.
  • Be capable of self-administering the medication as required by the law.

A terminal diagnosis must be established through an in-person examination and confirmed by another physician. A diagnosis of major depressive disorder alone does not qualify as a terminal disease under the Act.

Importantly, a person cannot request MAiD on behalf of another individual. Requests must come directly from the patient verbally and in writing. A healthcare agent, power of attorney, guardian, surrogate decision-maker or advance directive cannot make the request for the patient.

How Does a Patient Request Medical Aid in Dying Medication?

The law establishes a specific process that must be completed before a prescription can be provided.

1. Begin the conversation with the attending physician

The patient begins by making an verbal request for Medical Aid-in-Dying medication directly to their attending physician.

The attending physician is responsible for evaluating the patient’s eligibility, including the terminal diagnosis, prognosis, mental capacity and whether the request is voluntary and free from coercion or undue influence.

2. Receive information about all appropriate end-of-life options

The attending physician must provide information about the patient’s diagnosis and prognosis, the potential risks and benefits associated with the medication, and the probable result of self-administration.

The physician must also discuss feasible alternatives and additional treatment options, including:

  • Hospice care
  • Palliative care
  • Comfort care
  • Pain and symptom management
  • Other appropriate treatment options

The patient must also be informed that they may withdraw the request at any time and that they are not required to fill the prescription or self-administer the medication if it is obtained.

3. A second physician must confirm eligibility

The attending physician must refer the patient to a consulting physician who independently evaluates the patient and confirms that the patient has a terminal disease, has the required prognosis, has mental capacity and is acting voluntarily.

If either physician has concerns about the patient’s ability to make an informed decision, the patient must be referred to a qualified mental health professional for an additional evaluation. If the mental health professional determines that the patient lacks mental capacity or has a psychiatric or psychological disorder causing impaired judgment, the patient does not qualify under the Act. *note at the time of this posting, there is no list of Illinois physicians who will participate in MAiD.

4. Complete the written request

The patient must complete a written request for the medication after making the initial verbal request.

The written request must be signed and dated by the patient and witnessed by at least two people who attest that, to the best of their knowledge, the patient has mental capacity, is acting voluntarily and is not being coerced or unduly influenced.

At least one witness must not be a relative of the patient, a person who would be entitled to the patient’s estate, or an owner, operator or employee of a healthcare entity where the patient is receiving treatment or residing. The attending physician and an interpreter also cannot serve as witnesses.

5. Make a second verbal request

The patient must make a second oral request at least five days after the initial verbal request.

There is an exception when the attending physician determines that, within reasonable medical judgment, the patient is expected to die within five days of the initial request. In that circumstance, the written request and second oral request may occur sooner.

At the time of the second verbal request, the attending physician must offer the patient an opportunity to withdraw the request.

6. The prescription is sent to a licensed pharmacy

Once all requirements of the law have been completed, the attending physician may provide the prescription and transmit it to a licensed pharmacist in accordance with state and federal requirements.

The law permits the prescription to be delivered personally, by mail or through an authorized electronic transmission. The medication may be dispensed to the qualified patient or to a person specifically designated by the patient, as permitted by law.

The prescribing physician is also required to provide information regarding the medication, including information about the recommended method of self-administration, safe storage and disposal, the importance of having another person present, and the requirement not to take the medication in a public place. *note at the time of this posting, there is no list of available pharmacies who have this medication available.

The law does not require a patient to fill the prescription or to ultimately take the medication. A patient may change their mind and withdraw the request at any time.

What Does This Mean for Hospice Patients?

A patient who is considering or pursuing Medical Aid in Dying may still receive hospice care.

Medical Aid in Dying does not eliminate the need for hospice. In fact, patients and families may continue to need expert support with pain and symptom management, emotional and spiritual support, advanced care planning, caregiver support and other aspects of end-of-life care.

Illinois law specifically identifies hospice, palliative care, comfort care, and pain control as important options that must be discussed with patients requesting Medical Aid in Dying.

For referral partners, this means that a patient who raises questions about MAiD should not automatically be considered ineligible for hospice or palliative care. Instead, the patient’s goals and wishes should be explored, appropriate information should be provided, and the patient’s care should continue to be based on their clinical needs and plan of care.

How Lightways Supports Patients and Referral Partners

Lightways Hospice and Serious Illness Care is committed to providing compassionate, respectful, and nonjudgmental care to patients and families navigating serious illness and end-of-life decisions.

Lightways staff can explain Lightways’ policy, and provide information about appropriate outside resources. A patient’s interest in or pursuit of MAID does not, by itself, result in a reduction, alteration or denial of appropriate hospice services.

However, Lightways does not participate in the Medical Aid-in-Dying process while acting in its organizational capacity. Lightways employees and contracted clinicians may not serve as the attending or consulting physician for MAiD through Lightways, determine eligibility or capacity for purposes of the law, obtain or prepare MAiD medication, administer or assist with administration of the medication, witness a patient’s written MAiD request, or otherwise participate in the MAID process on behalf of the organization.

Medical Aid in Dying and the Lightways Inpatient Unit

The Lightways Hospice Inpatient Unit provides compassionate hospice care, symptom management and support for patients and families.

Because of applicable federal requirements governing the use of federal funds, including Medicare and Medicaid funding, MAiD medication may not be self-administered in the Lightways Hospice Inpatient Unit. Lightways staff cannot administer or assist with the administration or ingestion of MAiD medication.

A patient who wishes to pursue self-administration of MAiD medication must make arrangements to leave the Lightways Inpatient Unit before self-administration occurs. Lightways can continue to support appropriate discharge and continuity-of-care planning while remaining within the organization’s role and legal requirements.

What Should Referral Partners Do When a Patient Raises the Topic?

Healthcare professionals may encounter patients who have questions about Medical Aid in Dying but do not know where to begin.

A helpful response is to listen without judgment and determine what information the patient is seeking. Patients should be encouraged to discuss their wishes directly with their attending physician or another physician who participates in the MAiD process.

Referral partners should also remember that a request for information about MAiD is not, by itself, an indication of suicidal intent or evidence that a patient is no longer eligible for hospice care. The Illinois law establishes a specific end-of-life medical process for qualifying terminally ill adults.

For patients receiving Lightways services, our team can help patients and families understand what Lightways can and cannot provide, continue appropriate hospice or palliative care, and help coordinate care within the boundaries of our policy.

Planning Ahead Can Help

For patients with a serious or terminal illness, conversations about end-of-life wishes are important regardless of whether medical aid in dying is being considered.

Patients and families may benefit from discussing:

  • Goals and priorities for care
  • Hospice and palliative care
  • Pain and symptom management
  • Advance directives and healthcare decision-makers
  • Preferred location of care
  • Who they want involved in important decisions
  • Spiritual, emotional and psychosocial support
  • Family and caregiver needs
  • Funeral and final arrangements
  • Other personal wishes for the end of life

These conversations can help patients communicate their wishes clearly and give families and healthcare teams a better understanding of what matters most.

An Additional End-of-Life Option

Illinois’ new law provides another option for qualifying terminally ill adults while maintaining the importance of informed decision-making and comprehensive end-of-life care.

Whether a patient chooses hospice, palliative care, comfort-focused treatment, Medical Aid in Dying, or another approach, the conversation should begin with understanding the patient’s goals, providing accurate information and supporting informed choices.

At Lightways, our commitment remains the same: to provide comfort, dignity, compassion and peace of mind to patients and families facing serious illness and the end of life.

Important Information

This article is intended for general educational purposes and is not legal or medical advice. The Illinois End-of-Life Options for Terminally Ill Patients Act contains specific eligibility, documentation, timing and procedural requirements. Patients and healthcare professionals should consult the current law, applicable Illinois Department of Public Health guidance, and a qualified healthcare or legal professional for questions about an individual situation.

As Illinois implements the new law, forms, administrative guidance and other requirements may be updated. Healthcare professionals should verify that they are using the most current state-required materials and procedures.

Please see below for links to the IDPH End of Life Options for the Terminally Ill:

End of Life Options for the Terminally Ill Information for Patients

Overview of the Illinois End-of-Life Options Act

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Call 815.740.4104

The Power of Connection: Stories from Integrative Therapy

The Power of Connection: Stories from Integrative Therapy

Sep 11, 2026 | Hospice Care, Integrative Therapy, Light the Way Blog

The Power of Connection: Stories from Integrative Therapy

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When the Music Plays, Grace Wakes Up

For Grace, music has a way of reaching her.

Grace has been receiving services from Lightways Hospice and Serious Illness Care since February 2023, including nursing care, supplies, and support from the Lightways Integrative Therapy team. For more than three years, a team has supported her care, focusing not only on her medical needs but also on the things that bring her comfort and joy.

One of those things is music.

Whenever her music therapist Julia visits, Grace responds. In fact, her daughters, Patti and Margie, say they can count on it every time.

“Every single time Julia comes, Mom wakes up and sings along,” they shared.

It doesn’t matter what time of day Julia arrives. As soon as Grace hears the music, she becomes engaged and joins in. She may not sing every word or every note, but that isn’t what matters. What matters is the response, the recognition, the participation, and the joy of being part of the moment.

For Grace, Julia’s visits have become a meaningful part of her care.

That connection is at the heart of Lightways’ Integrative Therapy program. Music therapy offers another way for our team to connect with patients, using music to encourage engagement, expression, and moments of comfort. For patients and families, these visits can become something they look forward to and remember.

Grace’s daughters are an important part of her care, too. Patti and Margie know their mom well and are always encouraging her to participate and try new things. Their involvement, along with the support of Julia and the rest of Grace’s care team, helps create a compassionate circle of care around her.

It is moments like these that demonstrate what makes an integrated hospice team so special. Every member brings a different skill and perspective, working together to care for the whole person, not just a diagnosis.

For Grace, sometimes that connection starts with a song.

Julia plays.
Grace wakes up.
And she sings along.

Finding Comfort, Connection and Rhythm

For Andrew Goldberg, hospice care is about more than managing a diagnosis. It is about comfort, communication and making meaningful moments possible for both him and his family.

Andrew has been receiving hospice services from Lightways since last year while living with Amyotrophic Lateral Sclerosis, or ALS. As part of his care, Andrew has had the opportunity to work with Lightways’ Integrative Therapy team, whose goal is to support the whole person and complement the care provided by the broader hospice team.

For Andrew, one of the things he values most is the team’s focus on his comfort and relief.

He also appreciates the communication and coordination between the members of his care team. Knowing that everyone is working together helps provide Andrew and his family with confidence that his needs are being heard and addressed.

But there is another part of his care that has created a special connection for Andrew and his children: music.

Andrew recently participated in a project called “Heartbeat Rhythm,” creating a special recording that his kids especially enjoy.

It is a simple example of how Integrative Therapy can create opportunities for connection that extend beyond a single visit. Music can become something a family shares, a recording to listen to, a memory to hold onto, or simply a song that brings a little joy to an ordinary day.

At Lightways, Integrative Therapy is an important part of caring for the whole person. Whether through music, aroma, massage, or other supportive therapies, these services give patients additional ways to find comfort, express themselves, and connect with the people they love.

And sometimes, those connections create something that lasts beyond the visit.

For Andrew, it is a rhythm his children can listen to forever. A special piece of music they can call their own.

Request Integrative Therapy

To request an integrative therapy for a patient in our care, please speak with your Lightways team members.

 

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Call 815.740.4104

Grieving Before a Loss: Anticipatory Grief

Grieving Before a Loss: Anticipatory Grief

Aug 13, 2026 | Grief Support, Light the Way Blog, Serious Illness Care

Grieving Before a Loss: Anticipatory Grief

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Many people are surprised to learn that we can feel symptoms of grief before our loved one dies. We have a name for it: anticipatory grief.

Anticipatory grief can be felt as soon as someone learns of a life-threatening diagnosis. Although it is like grief that is felt after someone dies, it has some unique characteristics that often take people by surprise.

Anticipatory grief doesn’t just affect one person

Anticipatory grief can be experienced by both the person who is facing the end of their life and their loved ones, making it uniquely challenging. Grief Counselors find that families will often react to the same loss in different ways, making it hard to understand one another during this time. They also report that people will not want to burden each other when they are grieving, causing potential breakdown in communication and relations with one another.

In hospice, counselors encourage families to utilize their team, which includes social workers, chaplains, and other therapies, who can provide a lot of assistance to families in facilitating conversation with one another and also supporting each of the family members individually in determining the type of support they need during this time.

It’s complicated

Grief that is experienced in the anticipation of the end of someone’s life causes many mixed emotions. Patrice Martin, Director of Grief and Integrative Therapies, shares, “I’ve heard people describe their experience at the end of life as the ‘in-between place’, Martin explains, “where someone experiences both thoughts of holding onto hope and letting go.” Given the conflicting nature of these thoughts, the person can often feel confused and overwhelmed by changing emotions.

Counselors discuss the importance of self-care during anticipatory grief, which can cause emotional, mental, and physical exhaustion. In managing the ups and downs of illness, counselors encourage families to find ways to tend to their basic needs to help sustain them during this uncertain time. Martin states that, at the end of life, families often need to be preparing for both the short-term and long-term scenarios at supportive time and advises that they fully utilize the supports of the hospice team, who are skilled in helping to determine the goals of care, to assist them in identifying what matters to them most.

Denial is part of the process

Whenever someone is faced with bad news, it is natural for them not to believe it, or to question the reality of what they are being told. Martin explains that denial has a purpose in the grief process. “Denial can act as a buffer against intense emotions, allow us to keep positive, maintain our daily tasks, and feel a sense of normalcy during this time.” Thus, if someone appears to be in denial, that is not necessarily a concern. The concern, Martin says, is when someone appears to be “stuck” in denial. “Sometimes, by not accepting the reality of the situation, we may lose track of the big picture and not realize the futility or even harm of continuing the same treatments or activities”. In fact, Martin says, it’s quite common for a griever, after the death of their loved one, to look back and have regrets about decisions they made. She often hears clients in grief counseling express regret for losing patience with their loved one because they weren’t eating enough, understanding their limits, or moving fast enough. This is inevitable, says Martin, as it’s very difficult to fully accept the reality of their loved one’s limitations at the time it is happening. “We remind our grievers to remember what they understood at the time when they made those decisions, and to give themselves grace”.

This is where Martin says using the support of a hospice team can be very helpful to both the person and their family, as they assist both in understanding their illness and prognosis, as well as what to expect as the person’s condition declines. The hospice team also provides each family with a booklet that outlines common changes that occur when someone is reaching the end of their life. Martin encourages families to share with their hospice team any questions that they have or to ask what they can expect as the illness progresses.

It’s grieving more than just the loss of life

Although anticipatory grief includes all the emotions that relate to the fact that someone’s life is coming to an end, it also includes emotions relating to the losses that the person and their family have already experienced. Having a life-limiting illness can include many losses, including a person’s independence, mental and/or physical abilities, sense of control, plans for the future, sense of security, and sense of identity. A caregiver, whose loved one experiences these changes, can also feel as though they are losing their person before they are gone. Some families must face a physical separation due to the loved one’s need to reside in a different home or in a skilled nursing care facility. And some families face a psychological separation from their loved one due to cognitive decline or increased fatigue.

Anticipatory grief can also increase as the illness progresses. One grief client described her experience. “It was more of an unraveling as the weight of it got heavier with each relapse, with each hospital admission, each ER visit.”

Counselors advise that families acknowledge the losses they are experiencing and find ways to express how they are feeling about these losses. Families can talk with the hospice social worker, chaplain, or a grief counselor, and can also attend a caregiver support group to meet with others who understand. The Grief Support Program hosts a virtual caregiver support group for anyone who is caring for someone with an advanced illness. This reduces the isolation that can be felt both by caregiving and with grief.

Yes, anger happens too

Feeling angry about the situation can be quite common for both the person facing their illness and their loved ones. Again, Martin shares that anger has its purpose in the grief process. “Anger has a bad reputation, but it can actually help us to recognize what is important to us, protect things that we value, or help defend ourselves or our loved ones from a threat.” Since someone’s life is in danger, it only makes sense that they may react with anger. What’s important is that the person experiencing these reactions finds healthy ways to express their anger. Oftentimes, grievers are able to do this when they find people who understand and validate their feelings of anger. Again, this is where the hospice team can be helpful, as they encourage families to share any concerns they have about their loved ones’ well-being, or any worries they may have for the future. Counseling and support groups can also provide someone with the opportunity to share their frustrations without feeling judged.

Grief can be isolating

After a life-threatening diagnosis is given, we are forced to deal with a new reality, while the rest of the world seems to keep moving along. It’s not uncommon for someone to retreat from others as they process what is happening. And it can be hard to find others that understand what you are experiencing or know how to support you. Counselors encourage grievers to stay connected to their support system while also finding others who understand. Hospice and palliative programs are designed to provide support that is useful and understanding. At Lightways Hospice and Serious Illness Care, we believe that no one should have to face a life-threatening illness alone.

Questions about serious illness care or grief support?

Contact Lightways Hospice and Serious Illness Care directly at 815.740.4104 or our Grief Support team at 815.460.3282.

 

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Contact Lightways

Call 815.740.4104

Do Hospice Patients Need Hospital Care: A Caregiver’s Guide

Do Hospice Patients Need Hospital Care: A Caregiver’s Guide

Jul 10, 2026 | Hospice Care, Light the Way Blog

Do Hospice Patients Need Hospital Care: A Caregiver’s Guide

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One of the most frequent questions caregivers ask is whether a person receiving hospice care can still go to the hospital. The short answer is yes, it depends on the situation and what your goals of care are. Understanding how hospice works, and how Medicare and Medicaid coverage apply, can help caregivers feel more confident and prepared when unexpected situations arise.

Hospice Care and the Focus on Comfort

Hospice care is designed for patients with a life-limiting illness who are choosing to focus on comfort, quality of life, and support rather than curative treatment. Hospice services are typically provided wherever the patient lives, at home, in a nursing facility, or in some cases an inpatient hospice unit. Hospice services include medical care, symptom management, emotional and spiritual support, medications related to the terminal diagnosis, medical equipment, and 24/7 on-call support.

Because hospice prioritizes comfort and symptom relief, many issues that might otherwise lead to a hospital visit can often be managed at home with the hospice team’s support.

Medicare Coverage and Hospice

Under Medicare Part A, hospice is a comprehensive benefit that covers:

  • Visits from nurses, aides, social workers, and chaplains.
  • Comfort medication and any medications related to the terminal illness.
  • Medical equipment and certain supplies.
  • Short-term inpatient hospice care for symptom management.
  • Respite care for caregivers.

While enrolled in hospice, Medicare does not cover hospital care related to the terminal diagnosis, as hospice assumes responsibility for managing those needs.
Said a different way, hospice becomes your insurance provider and like any insurance must be aware and approve of visits to the hospital.

It is the hospice’s responsibility to manage any issues you are having which we can do in your home, facility or in our inpatient hospice unit.

When Can a Hospice Patient Go to the Hospital?

  • For issues unrelated to the terminal illness:
    If a patient experiences a medical issue unrelated to their hospice diagnosis, hospital care may be covered by Medicare or Medicaid, depending on the circumstances. It is important to notify the hospice team so they can help coordinate care. Please note that a fall with an injury, an infection, or dehydration is considered related to any terminal illness. If a patient with cancer has a heart attack, that would be considered unrelated.
  • If goals of care change:
    A patient always has the right to revoke hospice care if they choose to pursue curative treatment in the hospital. Hospice can be restarted later if the patient again meets eligibility criteria and wishes to return to comfort-focused care. Hospice must be notified immediately, or your Medicare is not available to you or the hospital.

Medicaid Coverage and Hospice

Medicaid hospice benefits are the same as Medicare’s and vary slightly by state.

Why Calling the Hospice Team First Matters

Hospice teams are available 24/7 and are trained to respond quickly to changes in conditions. Calling hospice before going to the hospital can:

  • Prevent unnecessary and stressful hospital visits.
  • Allow symptoms to be managed at home or in an inpatient hospice unit.
  • Ensure care aligns with the patient’s wishes.
  • Avoid unexpectedly denied medical bills.

Supporting Caregivers Through the Decision

Decisions about hospital care can be emotional and stressful. Hospice teams collaborate closely with caregivers to explain options, honor patient preferences, and provide guidance during urgent situations. You are never alone; help is always just a phone call away.

Hospice patients can go to the hospital, but hospice care is designed to reduce the need for hospitalization by providing comprehensive, comfort-focused care wherever the patient lives. Medicare and Medicaid cover hospice services related to the terminal illness, while hospital care for unrelated conditions may still be covered. When questions arise, the best first step is always to contact the hospice team, who can help navigate decisions with clarity, compassion, and support.

Questions about hospice care or what to expect?

If you or someone you care for has questions about hospice or what to expect, reaching out to a trusted hospice provider can help bring peace of mind during a challenging time. Please contact Lightways Hospice and Serious Illness Care directly at 815.740.4104 for any questions you or your family may have regarding hospice care and coverage.

 

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Contact Lightways

Call 815.740.4104

Understanding Dementia Care: The Role of Palliative Care and When Hospice Is Needed

Understanding Dementia Care: The Role of Palliative Care and When Hospice Is Needed

Jun 12, 2026 | Hospice Care, Light the Way Blog

Understanding Dementia Care: The Role of Palliative Care and When Hospice Is Needed

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Dementia is a progressive, life-limiting condition that affects memory, thinking, communication, and eventually the body’s ability to function. As dementia advances, individuals often require increasing levels of support as the brain gradually loses its ability to coordinate everyday activities such as eating, walking, swallowing, and communicating.

While there is currently no cure for dementia, specialized care can significantly improve the quality of life for both patients and their caregivers. Understanding the benefits of palliative care and hospice care, and recognizing the signs of advanced disease, can help families access the support they need at the right time.

How Palliative Care Supports Patients Living with Dementia

Serious Illness Care (or palliative care) is specialized medical care focused on improving quality of life for individuals living with serious illnesses, including dementia. Unlike hospice care, palliative care can begin at any stage of the disease and can be provided alongside treatments intended to manage symptoms or slow progression.

For patients with dementia, palliative care helps address many of the challenges that arise throughout the disease process, including:

  • Managing symptoms such as anxiety, agitation, depression, pain, sleep disturbances, and behavioral changes.
  • Coordinating care among multiple healthcare providers.
  • Supporting difficult conversations about future healthcare decisions and goals of care.
  • Assisting families with advance care planning.
  • Providing emotional support for patients and caregivers and connecting caregivers to resources.
  • Helping caregivers understand disease progression and what to expect as dementia advances.

Because dementia often progresses gradually over many years, serious illness care can be an invaluable resource long before hospice becomes appropriate.

10 Signs It May Be Time for Hospice Care

Hospice care focuses on comfort, dignity, and quality of life when a patient’s illness has reached an advanced stage. For individuals with dementia, recognizing the signs of decline can help families seek support before a crisis occurs.

  1. Frequent Falls and Increasing Weakness
    As dementia progresses, muscle weakness, impaired judgment, and poor balance can lead to frequent falls and injuries. Patients may become unable to walk safely without assistance.
  2. Difficulty Swallowing
    Many patients with advanced dementia develop dysphagia, or difficulty swallowing. They may cough or choke while eating, pocket food in their cheeks, or have trouble managing liquids.
  3. Significant Weight Loss
    Weight loss often occurs because eating becomes more difficult and appetite decreases. Malnutrition can contribute to further weakness and increased vulnerability to illness.
  4. Limited Communication
    Speech may become increasingly difficult to understand. Some individuals may communicate only through facial expressions, gestures, or other nonverbal cues.
  5. Loss of Bladder or Bowel Control
    Incontinence becomes common as dementia affects muscle control, mobility, and awareness of bodily functions.
  6. Increased Sleeping and Reduced Alertness
    Patients may spend much of the day sleeping and show less interest in activities, family interactions, or their surroundings.
  7. Little or No Verbal Communication
    Individuals may speak only a few words or stop speaking entirely. Understanding and responding to others may become increasingly difficult.
  8. Reduced Food and Fluid Intake
    A noticeable decline in eating and drinking often occurs as the body begins to slow down. This is a common part of the natural progression of end-stage dementia.
  9. Recurrent Infections
    Advanced dementia weakens the body’s ability to fight illness. Repeated infections such as pneumonia, urinary tract infections, or skin infections are often signs of significant decline.
  10. Changes in Breathing
    Breathing patterns may become irregular, shallow, or include periods of apnea (pauses in breathing), particularly during the final stages of life.

When Is Hospice Appropriate for Someone with Dementia?

Hospice care is appropriate when a physician determines a patient’s life expectancy may be six months or less if the disease follows its expected course.

For dementia patients, hospice eligibility often includes several of the following:

  • Dependence on others for most or all activities of daily living
  • Inability to walk independently
  • Minimal or no meaningful verbal communication
  • Significant weight loss or nutritional decline
  • Difficulty swallowing or aspiration risk
  • Recurrent infections such as pneumonia or urinary tract infections
  • Frequent hospitalizations or emergency room visits
  • Progressive decline despite medical interventions

Many families are surprised to learn their loved one qualifies for hospice. Unfortunately, dementia patients are often referred later than ideal, limiting the time they and their families and caregivers can benefit from hospice services.

Why Earlier Hospice Referrals Matter

Multiple hospitalizations can be especially difficult for individuals with dementia. Changes in the environment often increase confusion, anxiety, agitation, and emotional distress. Hospital stays may also expose patients to additional risks, including infections and further physical decline. Hospital stays may also not align with the patient’s goals to stay home or in their facility without hospitalizations or emergency department visits.

Hospice provides support wherever the patient calls home, helping manage symptoms and urgent concerns without unnecessary hospital visits whenever possible.

Many physicians are afraid and hesitant to initiate conversations about hospice. Families should feel empowered to take the lead and discuss both palliative care and hospice options with their healthcare providers and ask for an evaluation when they believe additional support may be beneficial.

What Hospice Provides for Dementia Patients and Their Families

Hospice care addresses the physical, emotional, and spiritual needs of both patients and caregivers through an interdisciplinary team approach.

Services include:

  • Expert pain and symptom management
  • Regular nursing visits and medical oversight
  • Certified nursing assistant support for personal care needs
  • Emotional support and counseling
  • Spiritual care services
  • Integrative therapies such as massage, music therapy, and aromatherapy
  • Education about disease progression and what to expect
  • Guidance with difficult care decisions
  • Medication, equipment, and supplies related to the hospice diagnosis
  • Respite care and caregiver support

Hospice care can be provided in a patient’s home, an assisted living community, a skilled nursing facility, or an inpatient hospice unit.

A Compassionate Approach to Dementia Care

Watching a loved one decline from dementia can be overwhelming and heartbreaking. Understanding the signs of advanced disease and knowing when to seek additional support can help families focus on what matters most: comfort, connection, and quality of life.

Whether your loved one is in the early stages of dementia and could benefit from palliative care or is experiencing the signs of advanced decline that may indicate hospice eligibility, you do not have to navigate this journey alone.

The right support at the right time will make a meaningful difference for both patients and the people who love them.

Questions About Palliative Care and Hospice Services?

To learn more about palliative care or hospice services for individuals living with dementia, contact Lightways Hospice and Serious Illness Care at 815.740.4104.

Through darkness, we bring light

Contact Lightways

Call 815.740.4104

The Grief Experience in the Beginning

The Grief Experience in the Beginning

May 8, 2026 | Grief Support, Light the Way Blog, Lightways News

The Grief Experience in the Beginning

The Grief Experience in the Beginning

After learning of their loved one’s death, grievers often describe their experience in similar ways:

  • “My world stopped, while the rest of the world moved on”.
  • “I feel as though a carpet has been pulled out from under me”.
  • “I feel like I’ve lost a limb, like I’m no longer a whole person.”

This sense of disbelief and isolation is often compounded by strong feelings, insistent thoughts, difficulty concentrating, and changes in sleeping and eating patterns. Grief affects us emotionally, mentally, physically, and spiritually, often leaving grievers feeling disoriented, overwhelmed, and exhausted.

What Griever’s Need

Thus, it is not surprising that in the beginning of grief, it is often hard for a griever to identify what they need. And, when seeing someone they care about so affected, supporters often share that they feel helpless, and at a loss of what to say. Unfortunately, these two conditions can result in nothing being said about the person’s loss, and an avoidance of the griever altogether, thus increasing the griever’s sense of isolation even more.

Due to the challenges of supporting grievers, the Grief Counselors at Lightways wanted to share what they have learned from grievers about what is helpful and not helpful.

Here’s what they had to share:

Tending to our Basic needs

Many grievers describe how overwhelming grief is at first, and that during this time, they are often only able to focus on their basic needs, such as rest and comfort. Grief Counselors share the importance of self-care, which includes anything that tends to “your body, mind, and soul,” and helps you to sustain yourself during grief. Some grievers struggle with eating and sleeping, so they are encouraged to hydrate, eat small meals, and take naps to stay nourished and rested. For some grievers who have been caregivers, the Counselors also recommend that they make sure to see their health care provider if they haven’t in a while. Additionally, because grievers are often operating on limited reserves, they need to adjust their expectations of themselves. Receiving help from their supporters with day-to-day tasks and having a reduced workload can be very helpful to some grievers.

Tending to our Pain

Grief reactions can be very intense for some grievers. So much so that some grievers use the word “pain” to describe their grief. Thus, Grief Counselors work with grievers on identifying what types of things might “soothe” the pain of grief. Often, what grievers discover is that sensory experiences help soothe the pain of grief. Counselors encourage grievers to identify what sights, sounds, smells, textures, and tastes provide them comfort when they are hurting. Examples of things that can help are their loved one’s clothes or perfume, pets, nature, tea, pictures or videos or their loved one, soft blankets, and more.

The right balance of time alone, and time with others

Because of the need to attend to basic needs, some grievers find they need time alone to do so. Other grievers feel less distressed when they are around others and seek connection. This is very individual and can change throughout the grief process.

At the beginning of grief, as a griever is trying to adjust to their “new normal”, they often have a lot of tasks that they need to take care of, such as planning final arrangements or dealing with financial matters. One griever explained that the help they received from others felt disproportionate. They explained that at first, they felt bombarded by calls from others to the point that it felt overwhelming. Later on, they noticed they weren’t hearing from anyone. “It was like crickets”.

Grief Counselors suggest that grievers and their supporters try to communicate and figure out what the right balance may be for them. Christopher Ciesla, Grief Counselor at Lightways states that in counseling, he works with grievers on how to advocate for themselves to have their needs met. He shares that at times he and the griever will “develop bullet points on how to teach their support members to support them better”. This helps, he explains, the griever to “talk to their partner or support system to guide them on what is most helpful, since most people are uncertain what to do”.

A note about Reaching Out to a Griever

“How are you doing?”:

Patrice Martin, Director of Grief and Integrative Therapies, was surprised to learn from grievers that this question can be difficult to answer. What is often a person’s attempt to reach out to a griever with support, can feel to a griever like a loaded question. “Grievers will ask us, ‘How do I answer that? Tell them the truth? Pretend I am doing better than I am?” says Martin. Grievers may not feel comfortable opening up at the time (or place) when this question is asked, or they may not feel that the person is genuinely interested in the true answer.

Martin encourages those who want to check in on a griever to consider the time and place of the check-in – where you are, what the person is doing, as well as your relationship with that person. “Instead of asking, “’ How are you doing?”, you may want to ask how their day is going or simply state to them that you wanted to check in, that you have been thinking of them and would love to connect. When asking, Martin cautions, “make sure you are sincerely open to hearing their honest answer.”

Reaching out for help from others can also be challenging for grievers. Partially because they may not know what they need, but also because reaching out comes with some risks for the griever, who may be feeling vulnerable, or worried about being a burden to others, or “ruining the mood” of the other person.

Permission to grieve and permission to not be OK.

The Grief Counselors report that grievers are often grateful to learn that what they are experiencing is common and natural. They share that they sometimes get the message from others (or themselves) that they shouldn’t be feeling the way they are feeling. Grievers share that they hear comments from others like “Are you still having a hard time?” or “Don’t be sad. They would want you to be happy.”

Grief Counselors at Lightways are big advocates for there not being “shoulds” around grief. There are so many factors that can affect how someone responds to a loss, which makes each person’s grief reaction to a death unique. There are all kinds of grief reactions, both positive and negative, and they are all OK.

Support and understanding, not silver lining

One of our grief clients, who experienced both the loss of a partner and a child shared her experience:

“I didn’t expect any words would make me feel better after these losses, but I was caught off guard that there were things people would say that made me feel worse. Some of my closest family members said to me, “Are you over it yet?” and “Don’t cry anymore, he is in heaven”. I don’t hold it against them – I pray they never know what these losses feel like, and I understand that it’s hard to watch our loved ones suffer. In hindsight, just their presence would have been enough, but I didn’t know that’s what I needed or wanted. And our grief is not something to be fixed.”

One of the Grief Counselors, Katie Thiesen, likes to share one of her favorite quotes by Haruki Murakami, “Pain is inevitable. Suffering is optional.” “Suffering”, she says, “is what happens when we have to hold our pain alone”. She shares that supporters often want to “rush to fix pain, yet the only way to ‘fix’ grief would be to have their person come back to life and be healthy. So instead, we need supporters who are willing to sit in the mess, in the depths of the pain of grief with the grievers. Not to ‘fix’ it, but to be with us in it. If people do not sit in it with one another, that often adds to the pain as it creates further isolation”.

Acknowledgement of pain of grief

Instead of attempting to get someone who is grieving to “think positively”, grievers say they appreciate it when someone instead acknowledges how hard this is for them. When they are able to just sit with them in their pain and not try to fix it. This is hard for many of us to do, and can make us feel helpless, or bring up our own discomfort or pain. This is why grievers often find comfort in talking with other grievers, who can empathize with them as they have felt similar ways. One griever shared how much she liked coming to the support group, “I love coming here because I don’t have to pretend that I’m OK. I can just share how I’m truly feeling”.

Opportunities to speak about their loved one

Our client also shared with us how important it is to have the opportunity to talk about her son.

“Towards the end of year two, people checked in on me less often. My friends and family talked less about (my son). And one of my greatest fears is that people will forget him.”

When asked what has been helpful, grievers often share how touched they were when someone remembered a special day or shared a memory about their person. Grief Counselors recommend that supporters consider what days or situations might be hard for the griever they are supporting and make sure to check in on them that day.

Counselors also recommend that grievers find ways to honor their person, either privately or in a group setting. At Lightways, the Grief Support Program offers a variety of different events and activities that give grievers a chance to pay tribute to their loved ones.

The Grief Support Program

The Grief Support Program at Lightways wants to make sure that the community knows that grief support is available to them, regardless of whether their loved one received hospice services. All the grief support services, including short-term counseling, support group, workshops, and special events, are available free of charge.

If you or anyone you know is interested in learning more, you can reach out to the Grief Support Program at 815-460-3282, [email protected] or Contact Lightways.

Through darkness, we bring light

Contact Lightways

Call 815.740.4104