Published on December 10, 2025
Updated on December 5, 2025
Table of Contents
When someone you love is diagnosed with acute myeloid leukemia, or AML, the world can feel like it’s turned upside down. You may have questions, fears, and uncertainty about what comes next. This guide is here to walk with you through this journey, focusing on comfort, dignity, and quality of life.
Acute myeloid leukemia (AML) is a type of blood cancer that starts in the bone marrow—the soft, spongy tissue inside your bones where blood cells are made. Think of your bone marrow as a factory that normally produces healthy blood cells. In AML, this factory begins making abnormal, immature cells called blast cells instead of the healthy cells your body needs.
Here’s what happens in simple terms:
Normal bone marrow makes three main types of blood cells:
In AML, the bone marrow becomes crowded with blast cells that don’t work properly. These abnormal cells:
This crowding means your body doesn’t get enough healthy blood cells. You may feel tired because you don’t have enough red blood cells. You might get infections easily because your white blood cells aren’t working right. You could bruise or bleed more because you don’t have enough platelets.
AML moves quickly. Unlike some cancers that grow slowly over years, AML can change rapidly over days or weeks. This is why doctors use the word “acute” – it means the disease develops and progresses fast.
This guide was written with you in mind, whether you are:
A person diagnosed with AML who wants to understand what’s happening to your body and what comfort options are available to you
A family member or caregiver who loves someone with AML and wants to know how to provide the best support and comfort
A friend or loved one is trying to understand how to be helpful during this difficult time
Healthcare workers in hospice and palliative care who want to better serve patients and families facing AML
Anyone who wants to learn about comfort-focused care for people with blood cancers
No matter who you are, this guide speaks to you as a whole person, not just a medical case. You have feelings, relationships, hopes, and concerns that matter deeply. We honor all of these as we explore how to make this journey as comfortable and meaningful as possible.
This guide takes a different approach than what you might expect from medical information. We’re not going to focus on treatments aimed at curing AML. Instead, we’re going to talk about something equally important and often more relevant for many families: how to live as well as possible with this disease.
Comfort care – also called palliative and hospice care – is built on a simple but powerful idea: your comfort, dignity, and quality of life matter most. This approach recognizes that sometimes the kindest thing we can do is focus on relieving suffering rather than fighting the disease itself.
If you’re the person with AML, this guide will help you understand:
If you’re a family member or caregiver, this guide will help you:
Throughout this guide, we’ll return to these core principles:
Your body knows how to die naturally. Our role is not to speed up or slow down this natural process, but to remove as much preventable distress as possible so you can focus on what matters most to you.
Comfort is not giving up. Choosing comfort care is choosing to live fully and meaningfully, focusing on quality rather than quantity of time.
You are more than your diagnosis. You remain a whole person with relationships, values, preferences, and dignity that deserve respect and protection.
Small comforts matter greatly. Sometimes the most important care involves simple things: a cool cloth on a fevered forehead, favorite music playing softly, or the presence of someone who loves you.
Every person’s journey is unique. While we can describe common experiences with AML, your specific journey will be your own. This guide provides information to help you make decisions that align with your values and goals.
As we move forward together through this guide, remember that seeking comfort and focusing on quality of life is not only acceptable – it’s wise, loving, and deeply human. Whether you’re facing this diagnosis yourself or supporting someone you love, you deserve care that honors your whole person and helps you find peace, meaning, and comfort along the way.
When AML first shows itself, your body has been quietly struggling for a while. The symptoms that finally bring people to see a doctor often develop over days or weeks, not months. Understanding these early signs helps you recognize what your body has been trying to tell you.
The most common symptoms that make people seek medical care include:
Extreme tiredness that doesn’t get better with rest. This isn’t the tired feeling after a busy day – it’s a deep exhaustion that makes simple tasks feel impossible. You might find yourself needing to rest after walking to the mailbox or getting dressed.
Unusual bleeding or bruising that seems to come from nowhere. You might notice large, dark bruises on your arms or legs without remembering how they got there. Your gums might bleed when you brush your teeth, or small cuts might bleed longer than usual.
Getting sick often or infections that won’t go away. A simple cold might linger for weeks, or you might develop frequent fevers without an obvious cause.
Shortness of breath during normal activities. Climbing stairs or walking across a room might leave you feeling winded when it never did before.
Feeling weak or dizzy, especially when standing up quickly. Some people describe feeling like they might faint.
Loss of appetite and weight loss that happens without trying. Food might not taste good anymore, or you might feel full after eating just a few bites.
When your doctor orders blood tests, the key finding that confirms AML is the presence of 20% or more blast cells in your bone marrow or blood. Think of blast cells as baby blood cells that never grew up properly. In healthy bone marrow, you might have 2-3% blast cells. In AML, this number jumps dramatically.
Your doctor might also notice:
For the person with AML, the diagnosis often brings a mix of relief and fear. Relief because you finally have an answer for why you’ve been feeling so unwell. Fear because AML sounds frightening and moves quickly.
For family members, the diagnosis can feel like a shock, even if you’ve been worried about your loved one’s symptoms. It’s normal to feel overwhelmed, scared, angry, or sad. Some families describe feeling like they’re in a bad dream.
Physically, you might notice your loved one:
Emotionally, both patients and families often experience:
As AML progresses, your bone marrow becomes increasingly unable to perform its normal function of making healthy blood cells. This is when you’ll start to notice more significant changes in how you feel and function day to day.
Your bone marrow is like a busy factory that normally produces millions of blood cells every day. In AML, abnormal blast cells crowd out the space where healthy cells should be made. Imagine trying to work in a factory that’s become so cluttered with broken machinery that you can barely move around – that’s what’s happening in your bone marrow.
As more blast cells accumulate:
This crowding effect means that even if some healthy cells are still being made, there aren’t enough to meet your body’s needs.
Your energy levels will likely continue to decline as your red blood cell count drops. What once felt like mild tiredness may become profound fatigue. You might find yourself:
Your body works much harder to perform basic functions with fewer healthy blood cells. This is why rest is so important—your body needs to conserve energy for essential functions.
During this middle stage, you may notice new symptoms or worsening of existing ones:
Increased infections because your immune system isn’t working correctly. These might include:
More noticeable bleeding and bruising, such as:
Bone and joint discomfort from the pressure of crowded blast cells in your bone marrow. This might feel like:
As AML progresses to more advanced stages, your bone marrow’s ability to function becomes severely limited. This stage brings more serious complications, but understanding what’s happening can help you and your family prepare and focus on comfort measures.
Bone marrow failure means your body can no longer produce enough healthy blood cells to meet your basic needs. Think of it like a factory that has become so overwhelmed that production has nearly stopped.
When bone marrow failure occurs:
This isn’t something you did wrong or could have prevented – it’s the natural progression of how AML affects your body.
Severe anemia becomes a significant challenge during advanced AML. You might experience:
Bleeding risks increase significantly as your platelet count drops very low. This might show up as:
Infections become more dangerous because your immune system is severely weakened. Even normally harmless bacteria can cause serious problems. You might notice:
Bone pain is common in advanced AML because blast cells crowd the space inside your bones. This pain often:
Some people describe bone pain from AML as feeling like a deep bruise inside the bone or like pressure building up within the bone. This pain happens because the blast cells take up so much space that they put pressure on the bone itself.
The good news is that bone pain from AML responds well to comfort medications and other pain management techniques that we’ll discuss in the symptom management section.
Understanding the final stage of AML helps families know what to expect and how to focus on comfort during this sacred time. This stage is about honoring the natural dying process while ensuring your loved one feels as peaceful and comfortable as possible.
In the weeks before death, you may notice several changes that signal the body is beginning to shut down naturally. These changes are normal and are not signs of suffering—they are your body’s way of preparing for a peaceful transition.
Constant coldness, paleness, and severe fatigue become more pronounced as circulation slows down. Your loved one might:
Changes in eating and drinking are natural as the body’s needs change. You might notice:
Breathing changes are among the most common signs that death is approaching within days or hours. These changes occur because the body’s systems naturally slow down.
In the days before death, breathing might become:
These breathing changes are normal and usually don’t cause distress to the person dying. The congested sound, while difficult for families to hear, typically doesn’t bother the person because they are usually unconscious or deeply sedated.
As the body prepares for death, the kidneys begin to work less effectively, leading to:
Decreased fluid intake is also natural and protective. The body:
This decrease in fluids is not uncomfortable for the dying person and helps prevent complications like fluid buildup in the lungs.
Changes in awareness typically develop gradually over the final weeks:
These changes in consciousness are normal and are part of the natural dying process. Although the person may seem unaware, many families report that their loved one appears peaceful.
The actual dying process usually unfolds over hours rather than days. During this time, you may observe:
Cool, dry skin and decreased movement as circulation continues to slow. The skin might:
Loss of appetite and natural withdrawal from the world around them. This includes:
Restlessness or muscle movements that might include:
These movements are not signs of pain or distress – they are part of how the body naturally transitions toward death.
Death from AML usually occurs peacefully once the body’s systems can no longer function. In the final moments:
The moment of death is often very quiet and gentle. Many families describe it as their loved one simply drifting away peacefully, like falling into a deep sleep.
After death occurs, the body will:
Remember that your presence, love, and comfort measures make an enormous difference throughout this process. Even when someone appears unconscious, many people can still hear familiar voices and feel the comfort of a loving touch. Your loved one knows you are there, and that presence is a precious gift during their final journey.
When someone you love has AML, palliative care offers a different way of thinking about medical care. Instead of focusing only on fighting the disease, palliative care focuses on fighting the symptoms and suffering that come with the disease.
Palliative care is not about giving up—it’s about shifting priorities. If cure-focused care asks, “How can we fight this disease?” Palliative care asks, “How can we help this person feel as comfortable and peaceful as possible?”
This approach recognizes that comfort and quality of life are just as important as length of life, sometimes more so. When treatments become harder on the body than the disease itself, focusing on comfort makes sense.
Palliative care can start at any time during an illness. You don’t have to wait until treatments stop working. Many families find that adding palliative care early actually helps them cope better with everything else that’s happening.
Quality of life means different things to different people. For some, it might mean being alert enough to have conversations with family. For others, it might mean being pain-free, even if that means sleeping more. The key is figuring out what matters most to you and your loved one.
Palliative care teams spend time learning about:
There are no wrong answers to these questions. Your values and preferences guide all decisions about comfort care.
Palliative care can work alongside other medical treatments. If your loved one is receiving blood transfusions, chemotherapy, or other treatments, palliative care can help manage the side effects and symptoms.
The palliative care team works with your other doctors to make sure:
This team approach means you get the best of both worlds – medical expertise and compassionate comfort care working together.
Non-pharmacological means comfort methods that don’t involve medications. These approaches often work wonderfully alongside medications and sometimes can provide relief when medications aren’t enough.
Positioning and comfort measures can make a huge difference in how comfortable someone feels throughout the day and night.
Good positioning helps because:
Simple positioning techniques that often help include:
Heat and cold therapy are simple but effective comfort measures:
Heat therapy can help with:
If the person is able, try warm (not hot) heating pads, warm moist towels, or warm baths.
Cold therapy can help with:
Use cold packs wrapped in a thin towel, cool washcloths, or ice chips.
Relaxation techniques and mindfulness help both the body and mind feel more peaceful. Even people who have never tried these techniques before often find them helpful.
Simple breathing exercises:
Progressive muscle relaxation:
Gentle exercise and movement might seem impossible when someone is very sick, but even small movements can help with comfort, mood, and sleep.
Safe movement options might include:
The key is to move only as much as feels comfortable and to stop if there’s pain or severe fatigue.
Environmental modifications can create a more peaceful, comfortable space:
Shortness of breath and breathing difficulties are common with AML, especially as the disease progresses. Non-medication approaches can provide significant relief.
Positioning to ease breathing difficulties is one of the most effective comfort measures:
The best positions for easier breathing include:
Avoid flat positions when breathing is difficult, as this makes the lungs work harder.
Respiratory therapy techniques that families can learn include:
Pursed-lip breathing:
Diaphragmatic breathing:
Fan therapy and cool air circulation provide remarkable relief for many people:
The moving air helps the body feel like it’s getting more oxygen, even when oxygen levels haven’t changed.
Managing anxiety around breathlessness is crucial because anxiety makes breathing problems worse:
As AML progresses, appetite and eating naturally change. The goal shifts from nutrition for health to nutrition for comfort and pleasure.
Nutritional support focusing on comfort means:
Small, frequent meals work better than large meals:
Foods that often appeal during illness include:
Oral hygiene for comfort and dignity becomes very important:
Supporting natural appetite changes in advanced disease means understanding that:
The emotional and spiritual parts of comfort care are just as important as physical comfort. People with AML often experience fear, sadness, anger, or spiritual distress alongside physical symptoms.
Mindfulness and meditation practices can provide peace even for people who have never tried them:
Simple mindfulness techniques:
Psychotherapy and counseling support help people process the complex emotions that come with serious illness:
Many hospice and palliative care programs include social workers or counselors as part of the team.
Spiritual care and meaning-making address questions about purpose, faith, and what happens after death:
Spiritual care is available regardless of religious beliefs or practices.
Family presence and connection often provide the greatest comfort of all:
Comfort medications in hospice and palliative care are chosen specifically to improve quality of life and reduce suffering. The goals are different from medications used to treat diseases.
Pain medication in comfort care focuses on keeping people as comfortable as possible while respecting their preferences about alertness and function.
| Type of Pain Medication | What It Does | Common Examples |
|---|---|---|
| Mild Pain Relief | For aches and minor discomfort | Acetaminophen (Tylenol) |
| Moderate Pain Relief | For moderate pain that affects daily activities | Tramadol, low-dose opioids |
| Strong Pain Relief | For severe pain that interferes with comfort | Morphine, oxycodone, fentanyl |
| Nerve Pain Relief | For tingling, burning, or shooting pains | Gabapentin, pregabalin |
The right medication depends on:
Pain medication works best when:
Nausea and vomiting can worsen everything else, so controlling these symptoms is a priority in comfort care.
Common anti-nausea medications include:
These medications work differently, so sometimes a combination works better than one alone.
Breathing problems cause anxiety and discomfort that medications can often help significantly.
Morphine is the most effective medication for breathlessness, even in people who don’t have pain. It helps the body feel less short of breath without dangerously affecting oxygen levels.
Lorazepam (Ativan) helps when anxiety makes breathing problems worse.
Bronchodilators like albuterol might help if there’s any wheezing or lung congestion.
Scopolamine patches can reduce secretions that cause congested breathing sounds.
Good sleep improves everything else – pain tolerance, mood, energy, and family relationships.
Sleep medications commonly used include:
Anxiety medications help people feel calmer and more peaceful:
One of the most critical conversations in comfort care is the balance between comfort and alertness.
Some people prefer to be:
Others prefer to be:
No right or wrong choice is about what matters most to you and your family. These preferences can also change over time, and that’s completely normal.
The key is communication with your hospice or palliative care team about:
AML creates unique challenges that require specific comfort approaches. Understanding these symptoms helps families provide better support and know when to seek help.
Fatigue in AML is different from normal tiredness. It’s a deep exhaustion that doesn’t improve with rest and can overwhelm even simple tasks.
Energy conservation strategies help make the most of limited energy:
Prioritize activities by importance:
Plan the day around energy levels:
Modify daily activities to require less energy:
Accept help gracefully:
Bleeding risks increase with AML because the bone marrow doesn’t make enough platelets. Simple safety measures can prevent injuries while maintaining quality of life.
Home safety modifications:
When to seek immediate help:
Comfort measures for bleeding concerns:
Balance safety with living:
AML weakens the immune system, making infections more dangerous. However, complete isolation can harm quality of life and emotional well-being.
Reasonable precautions include:
Balancing precautions with quality of life:
Signs of infection to watch for:
When infection occurs:
Bone pain from AML happens when blast cells crowd the bone marrow, creating pressure inside the bones. This pain often responds well to comfort measures.
Comfort positioning for bone pain:
Heat and cold for bone pain:
Gentle movement and stretching:
Creating a comfortable environment:
Working with the pain management team:
Remember that bone pain from AML is real and significant – it’s not something you have to “tough out.” Good pain management allows people to focus on what matters most during this precious time with family and loved ones.
All these comfort measures aim to help your loved one feel as peaceful, comfortable, and surrounded by love as possible. Every small comfort makes a difference, and your caring presence is the most important gift you can offer.
Starting palliative care right at diagnosis might seem surprising, but it’s one of the most helpful things you can do for someone with AML. Think of palliative care as an extra layer of support that works alongside your medical team to make sure comfort and quality of life stay front and center.
Research shows that people who get palliative care early actually feel better and live better during their illness. When palliative care starts at diagnosis, patients report:
This happens because palliative care teams specialize in comfort. While your oncology team focuses on the medical aspects of AML, the palliative care team focuses entirely on how you feel – physically, emotionally, and spiritually.
AML symptoms can be challenging from day one, and they often get more complex as the disease progresses. When palliative care starts early, you get:
Proactive symptom prevention – Instead of waiting for pain, nausea, or fatigue to become severe, palliative care teams help prevent or minimize these symptoms before they become overwhelming.
Expert medication management – Palliative care doctors specialize in medications that improve comfort and quality of life. They know how to balance pain relief with alertness, prevent medication side effects, and adjust treatments as needs change.
Coordination among all your doctors – Your palliative care team works with your oncologist, primary care doctor, and specialists to ensure everyone is working together for your comfort.
Quick response to new symptoms – When something new comes up, you have a team that knows you well and can respond quickly with solutions.
AML affects the whole family, not just the person diagnosed. Early palliative care provides support that helps everyone cope better:
Family meetings are where everyone can ask questions, express concerns, and understand what to expect moving forward.
Emotional support from social workers and counselors who understand the unique challenges of blood cancers.
Practical guidance about caregiving, managing medications at home, and when to seek help.
Respite and relief so that family caregivers don’t become overwhelmed and burned out.
Communication coaching to help families have difficult conversations about fears, hopes, and future planning.
You don’t need to wait for your doctor to suggest palliative care – you can ask for it yourself. Here’s how:
Talk to your oncologist during your next appointment. You might say: “I’d like to add palliative care to my team to help with comfort and quality of life. Can you help me connect with palliative care services?”
If your hospital has a palliative care team, contact them directly. Most cancer centers have such programs, and they’re used to patients referring themselves.
Ask the social worker or nurse navigator at your cancer center. These professionals often know exactly how to connect you with palliative care services.
Call your insurance company to ask about coverage for palliative care services and find covered providers.
Most insurance plans, including Medicare, cover palliative care when it’s provided alongside other medical treatments. You don’t need to choose between cancer treatment and palliative care – you can have both.
Early palliative care works as a team member, not a replacement for your other medical care. Here’s what you can expect:
| Palliative Care Service | What It Includes | How It Helps |
|---|---|---|
| Symptom Management | Pain control, nausea relief, fatigue management, and sleep improvement | Keeps you comfortable during treatments |
| Emotional Support | Counseling, support groups, and coping strategies | Reduces anxiety and depression |
| Family Support | Caregiver education, respite care, and family meetings | Strengthens your support system |
| Spiritual Care | Chaplain visits, meaning-making, and faith support | Addresses spiritual distress and questions |
| Care Coordination | Communication between doctors, treatment planning | Ensures all your care works together |
Regular visits – Usually monthly or more often if needed, either in clinic, hospital, or at home.
24/7 phone support – Someone to call when symptoms get worse, or new concerns arise.
Medication expertise – Specialists in comfort medications who can fine-tune your prescriptions.
Advanced care planning: Helps you think through and document your wishes for future care.
Hospice care is designed for people expected to live 6 months or less if their disease follows its natural course. This doesn’t mean you have exactly 6 months – it’s an estimate based on medical understanding of how diseases typically progress.
For AML, the 6-month prognosis usually means:
You don’t have to wait until the last possible moment to consider hospice. Many families find that starting hospice earlier allows for better symptom control and more meaningful time together.
AML can change quickly, sometimes over days or weeks rather than months. This creates unique challenges for hospice planning:
Timing can be difficult to predict – Someone might feel relatively stable one week and much sicker the next. This makes it hard to know exactly when to start hospice.
Families may feel rushed into making hospice decisions because the disease moves so fast. It’s important to have conversations about goals and preferences before you’re in a crisis situation.
Hospice teams experienced with AML understand this rapid progression and can help families navigate the quick changes that sometimes happen.
Many people with AML need blood transfusions to manage anemia and help them feel better. Different hospice programs have different policies about transfusions:
Some hospice programs will continue transfusions if they improve the quality of life and comfort, especially if the person was already receiving regular transfusions.
Other hospice programs consider transfusions to be life-extending treatments that don’t align with the hospice philosophy of natural dying.
The key is finding the right fit for your situation and values. If transfusions help your loved one feel more comfortable and spend quality time with family, it’s worth finding a hospice that will support this.
Questions to ask potential hospice providers:
Not all hospice programs have the same level of experience with blood cancers like AML. Finding one with relevant experience can make a big difference:
Look for hospices that:
You can find experienced hospices by:
One of the most apparent signs that hospice might be helpful is when someone with AML is spending more and more time in the hospital and less time living life at home.
Patterns that suggest hospice consideration:
Declining function might look like:
These changes signal that the body is using more and more energy just to keep going, leaving less energy available for the things that make life meaningful.
This is often the most important consideration for hospice timing: when the focus shifts from extending life to making the remaining time as comfortable and meaningful as possible.
This shift might happen when:
It’s important to know that choosing comfort doesn’t mean giving up hope – it means changing what you’re hoping for. Instead of hoping for a cure or remission, you might hope for:
Readiness for hospice is emotional and spiritual, not just medical. Both the person with AML and their family need to feel ready to shift focus toward comfort.
Signs of patient readiness:
Signs of family readiness:
It’s normal for family members to be ready at different times. Some people embrace hospice quickly, while others need more time to process the change in goals. Hospice social workers are skilled at helping families work through these different perspectives.
Talking about prognosis – how long someone is likely to live – is never easy, but these conversations are essential for making good decisions about hospice care.
Good prognosis conversations include:
Questions you can ask your medical team:
Remember that prognosis is an educated estimate, not a guarantee. Some people live longer than expected, others shorter. The goal is to have enough information to make decisions that align with your values and goals.
Before starting hospice, it’s important for families to talk openly about what they hope for and what matters most during the time remaining.
Important topics to discuss:
Where would you like to spend your final time? Many people prefer to be at home, but some feel safer in a facility. There’s no right answer – only what feels right for your family.
What does a good day look like now? Understanding what brings comfort, joy, or peace helps guide hospice care planning.
What are your biggest fears or concerns? Naming these fears allows the hospice team to address them directly.
What medical interventions do you want to continue or stop? This might include decisions about hospital visits, certain medications, or procedures.
Who do you want involved in your care? Some people want many visitors, others prefer quiet time with just close family.
What would make this time meaningful for you? This might involve completing certain projects, having specific conversations, or participating in meaningful activities or rituals.
These conversations take time and often happen over several days or weeks. It’s normal for feelings and preferences to change as you think more about these questions.
Hospice provides comprehensive medical care focused entirely on comfort and quality of life:
| Hospice Medical Service | What’s Included | How Often |
|---|---|---|
| Nursing Visits | Symptom assessment, medication management, family education | 2-3 times per week, more if needed |
| Doctor Visits | Medical oversight, prescription management, care plan updates | As needed, usually monthly |
| On-Call Support | 24/7 phone access to nurses | Available anytime, day or night |
| Medical Equipment | Hospital bed, oxygen, wheelchairs, other comfort items | Delivered and maintained as needed |
Nurses who understand AML and know how to manage the specific symptoms that come with blood cancers.
Quick response to changes – If symptoms get worse or new problems arise, hospice teams can often visit the same day or provide phone guidance.
Coordination with your other doctors ensures everyone works together for your comfort.
Hospice takes over the cost and management of all medications related to comfort and symptom management:
Pain medications – Including strong medications like morphine if needed, with careful attention to balancing comfort and alertness based on your preferences.
Symptom management medications – For nausea, anxiety, breathing difficulties, sleep problems, and other symptoms common with AML.
Emergency medications – Kept at home so families don’t need to rush to emergency rooms for symptom management.
Medication education – Teaching families how to give medications safely and when to call for help.
The goal is to keep you comfortable at home rather than needing hospital visits for symptom control.
Hospice recognizes that caring for someone with AML is exhausting both physically and emotionally:
Respite care – Hospice aides or nurses who can stay with your loved one for a few hours so family caregivers can rest, run errands, or take care of themselves.
Caregiver education – Teaching families how to provide comfortable care at home, including positioning, medication administration, and recognizing when to call for help.
Emotional support – Counseling and support groups for both patients and family members.
Practical assistance – Help with tasks like bathing, light housekeeping, and meal preparation.
24/7 emotional support – Someone to call for medical questions and emotional support during challenging moments.
Hospice care addresses the whole person, including spiritual and emotional needs:
Chaplain services – Available regardless of religious beliefs, chaplains help with spiritual questions, finding meaning, and preparing for death.
Social work services – Help with family dynamics, financial concerns, advance directives, and connecting with community resources.
Bereavement support – Grief counseling and support groups that continue for family members after their loved one dies.
Volunteer services – Trained volunteers who can provide companionship, help with errands, or offer specialized services like music or pet therapy.
Many families worry about starting hospice too early or too late. Here are the most common concerns and practical ways to think about them:
“What if we start hospice and then things improve?”
Hospice isn’t a one-way door. If someone’s condition improves significantly, they can discontinue hospice services and return to other treatments. The focus remains on what’s best for the person’s comfort and quality of life.
“Are we giving up too soon?”
Choosing hospice isn’t giving up – it’s choosing a different kind of hope. Instead of hoping for a cure, you’re hoping for comfort, peace, and meaningful time together. Many families find that hospice allows them to live more fully during the time they have.
“What if we wait too long?”
Starting hospice earlier often means better symptom control and more time to benefit from all the services hospice provides. Waiting until the very end sometimes means missing out on weeks or months of improved comfort and family support.
“Will hospice try to speed up death?”
Absolutely not. Hospice never hastens death. The goal is to allow natural dying while removing preventable suffering. Many people actually live longer on hospice because their symptoms are better controlled and their stress is reduced.
“Can we still go to the hospital if we need to?”
Most hospice programs allow hospital visits for symptom management when that’s the best way to keep someone comfortable. The key is that hospital care focuses on comfort rather than trying to extend life.
The right time for hospice is when it aligns with your goals and values. If comfort and quality of life have become more important than length of life, hospice can provide expert support for those goals. Trust your instincts, talk openly with your family and medical team, and remember that choosing hospice is choosing to focus on living as well as possible during the time you have together.
When someone you love has AML, the entire family becomes part of the journey. This experience affects everyone – parents, children, spouses, siblings, and close friends. Supporting each other through this difficult time requires honest communication, careful attention to caregiver needs, and intentional efforts to create meaningful moments together.
Honest communication becomes more important than ever when facing AML. Families often struggle with what to say and what not to say, worried about making things worse or taking away hope. The truth is that open, loving communication usually helps everyone feel less alone and more supported.
Common fears that families face include:
It’s normal and healthy to talk about these fears. When fears stay hidden, they often grow bigger and more frightening. When families share their worries openly, they can often find ways to address them together.
Creating safe spaces for difficult conversations means:
Talking about hopes requires redefining what hope means. Early in an illness, families might hope for cure or complete recovery. As AML progresses, hope often shifts to:
Both fears and hopes can exist at the same time. It’s possible to hope for comfort while fearing pain, or to hope for peace while worrying about the future. These mixed feelings are entirely normal.
Every family member – including children – deserves honest information appropriate to their age and understanding. Excluding family members from conversations often creates more anxiety and confusion than including them.
When talking with children about AML:
For teenagers and young adults:
For adult children and siblings:
Family meetings can help ensure everyone stays informed and has a chance to participate in important decisions. These meetings work best when:
Writing down important wishes and preferences helps ensure that the person with AML receives care that matches their values and goals. This documentation also helps family members feel confident that they’re making decisions their loved one would want.
Important documents to consider:
| Document Type | What It Covers | When You Need It |
|---|---|---|
| Advance Directive | Medical treatment preferences if unable to speak | Before becoming too sick to make decisions |
| Healthcare Power of Attorney | Who makes medical decisions if patient cannot | As early as possible after diagnosis |
| Financial Power of Attorney | Who handles financial decisions if needed | Soon after diagnosis |
| Living Will | Specific wishes about life support and end-of-life care | Before hospice enrollment |
| POLST/MOLST | Physician orders for specific medical situations | When working with hospice team |
Beyond legal documents, consider recording:
These conversations and documents should happen gradually over time, not all at once. As the person with AML feels ready, they can share more of their thoughts and preferences with family members.
The goal is not to make every decision in advance, but to give family members enough guidance to make decisions that honor their loved one’s values and wishes when the time comes.
Caring for someone with AML is physically, emotionally, and spiritually demanding. Family caregivers often focus so completely on their loved one that they ignore their own needs until they reach a breaking point.
Signs of caregiver stress and burnout include:
Physical signs:
Emotional signs:
Social signs:
Spiritual signs:
Caregiver burnout is not a sign of weakness or failure – it’s a normal response to an incredibly difficult situation. Recognizing these signs early allows you to seek help before reaching complete exhaustion.
No one should try to handle AML caregiving completely alone. There are many resources available to provide practical help and emotional support.
Types of support available:
Respite care services give caregivers breaks to rest and recharge:
Support groups connect caregivers with others who understand:
Professional support services:
Practical assistance programs:
How to access these resources:
Don’t wait until you’re completely overwhelmed to seek help. Using support services early helps prevent burnout and allows you to be a better caregiver over the long term.
Taking care of yourself is not selfish—it’s essential for caring for your loved one. Think of it like the instructions for an airplane oxygen mask: You have to put your own mask on first before you can help others.
Physical health maintenance:
Sleep – Even though it’s difficult, try to maintain some sleep routine:
Nutrition – Eating well gives you energy for caregiving:
Exercise – Even small amounts of movement help with stress:
Medical care – Don’t neglect your own health needs:
Emotional health maintenance:
Stay connected with supportive people:
Maintain some activities that bring you joy:
Process your emotions in healthy ways:
Set realistic expectations for yourself:
Even with AML, there are often good days among the difficult ones. Making the most of these better days creates precious memories and helps everyone focus on living fully rather than just surviving.
Good days might look different from how they used to. Instead of big adventures or busy activities, good days with AML might involve:
How to recognize and embrace good days:
Pay attention to your loved one’s energy and mood – Some days, they might wake up feeling stronger or more alert than usual. These are opportunities to do things that bring joy.
Be flexible with plans – Instead of scheduling activities far in advance, learn to recognize good moments when they arrive and make the most of them.
Keep expectations appropriate – A good day doesn’t mean your loved one is getting better permanently. Enjoy the moment without putting pressure on it to last or repeat.
Include the person in decisions about how to spend good days – Ask what would make them happy rather than assuming you know what they want.
Simple activities that often work well on good days:
Document good moments when it feels natural to do so:
Remember that good days are gifts, not guarantees. Treasure them without worrying about when the next one will come.
People with AML remain whole human beings with preferences, opinions, and the right to make decisions about their own lives. Maintaining dignity and independence becomes especially important when someone needs increasing help with daily activities.
Dignity means treating the person with AML as the valuable individual they have always been, not as a patient or a set of symptoms. This includes:
Respecting their opinions and preferences, even when they can’t do things for themselves:
Maintaining their role in the family and community:
Protecting their privacy and personal boundaries:
Independence doesn’t mean doing everything alone – it means having choices and control over your own life, even when you need help with daily tasks.
Ways to support independence:
Encourage self-care when possible:
Provide choices whenever possible:
Adapt the environment to support independence:
Balance safety with autonomy:
The end of life is also a time for completion, forgiveness, and peace. Families can help create opportunities for meaningful closure while honoring everyone’s individual needs and comfort levels.
Important conversations that bring closure often involve:
Expressions of love and gratitude:
Forgiveness and healing:
Legacy and meaning:
Crafting Meaningful Legacies: A Guide for End-of-Life Professionals is a wonderful resource for both dedicated professionals and families eager to contribute their time. It offers valuable insights into creating lasting legacies that will be cherished for generations to come. Embrace the opportunity to make a profound impact!
Practical completion:
Spiritual preparation and peace:
Creating rituals and meaningful experiences:
Simple ceremonies that honor the person and relationships:
Meaningful activities that can be done even when energy is limited:
Ways to include extended family and friends:
Remember that closure happens differently for each person and relationship. Some families have profound conversations and complete reconciliations. Others find peace in quieter ways through daily acts of care and love. There’s no single right way to achieve closure – the goal is to honor the relationships and create as much peace as possible for everyone involved.
The most important gift you can give during this time is your presence, your love, and your commitment to making sure your loved one knows they are valued, cherished, and will be remembered. These simple but profound acts of love create the foundation for healing and peace that can sustain families long after their loved one is gone.
When you’re looking for palliative or hospice care for someone with AML, asking the right questions can help you find the best fit for your family’s needs and values. These conversations might feel overwhelming, but remember that good care providers welcome questions—they want you to feel confident in your choice.
Essential questions about experience and services:
“How much experience does your team have with AML patients?” Some hospice and palliative care programs have more experience with blood cancers than others. Teams familiar with AML understand the unique symptoms and rapid changes that can happen with this disease.
“What is your policy on blood transfusions?” This is especially important for AML patients who may benefit from transfusions for comfort. Some hospice programs will continue transfusions if they improve the quality of life, while others may not.
“Do you provide 24-hour support?” You’ll want to know that help is available when symptoms change quickly, or new concerns arise, especially at night and on weekends.
“What services do you provide at home versus requiring hospital visits?” Understanding where different types of care happen helps you plan and know what to expect.
Questions about the care team:
“Who will be the main members of our care team?” Most palliative and hospice teams include doctors, nurses, social workers, and chaplains. Ask about how often you’ll see each team member.
“How do team members communicate with each other and with our family?” Good communication between all team members ensures everyone stays informed about changes in condition and care needs.
“Is there a specific nurse or case manager who will coordinate our care?” Having one main contact person often makes communication easier for families.
Questions about practical support:
“What medical equipment and supplies do you provide?” This typically includes hospital beds, oxygen equipment, wheelchairs, and medical supplies related to comfort care.
“Do you provide respite care for family caregivers?” Respite care gives family members breaks to rest and take care of their own needs.
“What support do you offer for family members and caregivers?” Ask about counseling, support groups, and bereavement services that continue after your loved one dies.
Questions about costs and logistics:
“What costs will our insurance cover, and what might we pay out-of-pocket?” Understanding financial responsibilities upfront prevents surprises later.
“How do you handle emergencies or urgent symptoms?” Know what to do if symptoms worsen quickly and whether you should call the hospice team or go to the emergency room.
“Can we continue seeing our current oncologist for consultations?” Some families want to maintain relationships with specialists even while receiving comfort-focused care.
Understanding insurance coverage for palliative and hospice care helps families plan and reduces financial stress during an already difficult time. The good news is that most insurance plans provide good coverage for these services.
Medicare coverage is the primary insurance for most hospice patients:
Medicare covers hospice care completely for people who meet the requirements: being 65 or older (or having certain disabilities), having a terminal diagnosis with 6 months or less life expectancy, and choosing comfort care over curative treatments.
Services covered by Medicare include:
Medicare patients typically pay nothing for hospice services, with small possible charges of $5 or less for some medications.
Medicaid coverage varies by state but generally follows Medicare guidelines:
Most states provide full hospice coverage through Medicaid for eligible patients. Coverage includes the same comprehensive services as Medicare, often with no out-of-pocket costs for families.
Private insurance coverage depends on your specific plan:
Most private insurance plans model their hospice coverage on Medicare and provide comprehensive benefits. However, coverage details can vary significantly between insurance companies.
Important steps for private insurance:
| Insurance Type | Typical Coverage | Patient Costs | Key Requirements |
|---|---|---|---|
| Medicare | 100% of hospice services | $0-$5 for some medications | Terminal diagnosis, 6-month prognosis |
| Medicaid | Comprehensive hospice care | Usually $0 | Income/asset eligibility, terminal diagnosis |
| Private Insurance | Varies by plan | Varies by plan | Check with your specific insurer |
Financial assistance options are available for families who need help:
United Way 2-1-1 is a free service that connects families with local financial assistance programs. Call 2-1-1 from any phone to speak with someone who can help you find medical expenses, utilities, housing, and food resources.
Local nonprofit organizations often provide financial help for families facing serious illness. Ask your social worker, hospital case manager, or palliative care team about organizations in your area.
Hospice and palliative care programs sometimes have their own financial assistance funds for families who need help with costs not covered by insurance.
Finding local resources can make a huge difference in getting your family the support it needs. Start with these reliable sources to connect with services in your area.
Start with your medical team:
Your oncologist, primary care doctor, or hospital case manager can refer you to palliative and hospice programs they trust and work with regularly. They know which programs have experience with AML patients.
Hospital social workers are excellent resources for connecting families with local services, financial assistance, and community support programs.
Use national directories to find local providers:
The Palliative Care Provider Directory helps you find palliative care services in your area. You can search by location to find programs near you.
The Center to Advance Palliative Care also maintains a nationwide directory of care providers.
Contact hospice programs directly to ask about their services and experience with AML patients. Most communities have multiple hospice organizations to choose from.
Community resources for practical support:
United Way 2-1-1 is a free, 24/7 service that connects you with local services, including meal delivery, transportation assistance, utility assistance, and caregiver support programs.
Religious organizations often provide practical support, such as meals, transportation, and companionship, even if you’re not a member of their congregation.
Local cancer centers frequently have resource lists and support programs specifically for families dealing with blood cancers like AML.
Senior centers and community centers may offer services like meal delivery, transportation, and social support to help families manage AML care.
Questions to ask when contacting local resources:
Connecting with other families who understand what you’re going through can provide comfort, practical advice, and hope during the AML journey. Support groups offer a safe space to share fears, ask questions, and learn from others who have walked a similar path.
Types of support groups available:
In-person support groups meet regularly in hospitals, community centers, or hospice facilities. These groups allow for face-to-face connection and often include both patients and family members.
Virtual support groups meet online and can be especially helpful for families who can’t travel easily or live in areas with limited local resources. Many national organizations offer video conference support groups.
Phone support groups provide a connection without requiring internet access or video capability. Some organizations offer one-on-one phone support as well as group calls.
Finding AML-specific support groups:
The Leukemia & Lymphoma Society offers support groups specifically for people with blood cancers and their families. They provide both in-person and online options, and can match you with trained volunteers who have personal experience with AML.
Local hospitals and cancer centers often host support groups for patients with blood cancers. Ask your medical team about groups that meet at your treatment facility.
National organizations like the American Cancer Society may sponsor support groups in your community. Contact their local offices to learn about available programs.
What to expect from support groups:
Shared experiences – You’ll meet people who truly understand the challenges of living with AML, including the physical symptoms, emotional struggles, and practical concerns.
Practical advice – Other families can share tips about managing symptoms, working with medical teams, and navigating insurance and financial issues.
Emotional support – Groups provide a safe place to express fears, sadness, and frustration with people who won’t judge or try to fix your feelings.
Hope and encouragement – Seeing how others cope and find meaning in difficult times can inspire and offer hope for your own journey.
Benefits for different family members:
For patients with AML, Support groups offer a connection with others who understand the physical and emotional challenges of the disease. Many people find comfort in knowing they’re not alone.
For spouses and partners, Groups for caregivers address the unique stresses of caring for someone with a serious illness while managing your own emotions and responsibilities.
For adult children – Support groups help them balance their own lives with caring for a parent and process complex emotions about loss and family roles.
For parents of young adults with AML, Specialized groups address the particular challenges parents face when an adult child has a serious illness.
Online communities provide 24/7 connection and support for families dealing with AML. These resources can be especially valuable during sleepless nights, when questions arise between medical appointments, or when you need support but can’t get to in-person meetings.
Reputable online communities for AML families:
The Leukemia & Lymphoma Society maintains online discussion boards and chat rooms where families can connect with others facing similar challenges. These moderated communities provide both emotional support and practical information.
Smart Patients is an online platform where people with serious illnesses and their families share experiences, ask questions, and support each other. They have specific communities for blood cancers, including AML.
CancerCare offers online support groups and chat sessions facilitated by professional counselors. They provide both general cancer support and groups specific to blood cancers.
Benefits of online communities:
Accessibility – Available anytime, day or night, from anywhere with internet access. This is especially helpful when physical symptoms or caregiving responsibilities make it hard to attend in-person meetings.
Anonymity – You can share as much or as little personal information as you’re comfortable with, and participate under a username if you prefer privacy.
Diverse perspectives – Online communities often include people from different geographic areas, ages, and stages of illness, providing a wider range of experiences and advice.
Searchable information – Many online communities allow you to search previous discussions to find information about specific symptoms, treatments, or concerns.
Guidelines for safe online participation:
Verify medical information – While online communities provide valuable peer support, always check medical advice with your healthcare team before making changes to care.
Protect your privacy – Be cautious about sharing personal medical information or identifying details online.
Choose moderated communities – Look for online groups with moderators who ensure discussions are helpful and appropriate.
Balance online and offline support – Online communities work best with the real-world backing from family, friends, and professional counselors.
Specific online resources for AML information:
The National Cancer Institute provides reliable, up-to-date information about AML, treatment options, and supportive care resources online.
The American Cancer Society offers comprehensive online resources about living with blood cancers, including symptom management and family support.
The Leukemia & Lymphoma Society provides detailed information about AML progression, comfort care options, and family resources on its website.
Grief and loss are part of the AML journey for families, and bereavement support helps people navigate the complex emotions that come with losing someone you love. These services often begin before death occurs and continue for months or years afterward.
Types of bereavement support available:
Individual grief counseling provides one-on-one support with professional counselors who understand the unique aspects of losing someone to cancer. These sessions can help you process emotions, develop coping strategies, and work through the various stages of grief.
Support groups for the bereaved connect you with others who have lost loved ones to serious illness. These groups provide peer support and the comfort of knowing you’re not alone in your grief.
Family grief counseling helps entire families process loss together, improve communication, and support each other through different ways of grieving.
Children’s bereavement services provide age-appropriate support for young people who have lost a parent, grandparent, or other important person to AML.
When bereavement support begins:
Anticipatory grief support starts while your loved one is still alive, helping families process the emotions that come with knowing death is approaching. This early support helps prepare families for loss and can ease the intensity of grief after death occurs.
Immediate grief support provides crisis counseling and practical assistance in the days and weeks immediately following death. This might include help with funeral planning, legal issues, and managing overwhelming emotions.
Long-term bereavement support continues for months or years after death, recognizing that grief is a long process that changes over time but never completely ends.
Who provides bereavement support?
Hospice programs automatically include bereavement support for families of their patients. This support continues for 13 months after death and includes counseling, support groups, and educational resources.
Hospitals and cancer centers often provide grief counseling for families of patients who die in their facilities, even if the family wasn’t enrolled in hospice care.
Community mental health centers offer grief counseling services, often on a sliding fee scale based on ability to pay.
Religious organizations frequently provide spiritual counseling and support groups for bereaved families, regardless of your religious beliefs or membership status.
Specialized bereavement services address particular types of loss:
| Type of Service | Who It Helps | What It Provides |
|---|---|---|
| Individual Counseling | Anyone grieving a loss | Personal, confidential support |
| Family Counseling | Entire families processing loss together | Communication help, family healing |
| Support Groups | People with similar losses | Peer support, shared experiences |
| Children’s Services | Young people who lost someone important | Age-appropriate grief support |
| Online Support | Those who can’t attend in-person services | 24/7 access to support and resources |
Signs that professional bereavement support might help:
How to access bereavement support:
Through hospice programs – If your loved one was enrolled in hospice, bereavement support is automatically included. Contact the hospice directly to learn about available services.
Through your doctor, Primary care physicians can refer you to grief counseling services and may be able to prescribe medication if depression or anxiety becomes severe.
Through community resources – Call 2-1-1 to find local grief support services, or contact United Way for referrals to bereavement programs in your area.
Through religious organizations, Many churches, temples, and other faith communities offer grief support regardless of membership or beliefs.
Remember that seeking bereavement support is a sign of strength, not weakness. Grief is one of the most difficult human experiences, and professional support can help you navigate this challenging time while honoring the memory of your loved one. There is no timeline for grief, and support is available for as long as you need it.
The goal of all these resources – palliative care, hospice services, support groups, and bereavement care – is to ensure that you and your family never have to face the challenges of AML alone. Help is available, and reaching out for support is one of the most loving things you can do for both yourself and your loved one with AML.
As your journey with AML continues, there comes a time when comfort becomes the most crucial goal – more important than medical appointments, test results, or treatment schedules. This shift toward comfort-focused care isn’t about giving up hope. Instead, it’s about finding a deeper, more meaningful kind of hope that focuses on peace, love, and the precious moments you can still share together.
When comfort becomes the highest priority, everything else in your life can reorganize around what truly matters. This doesn’t happen overnight and is not always an easy transition. But when families make this shift, they often discover a sense of peace they didn’t know was possible during such a difficult time.
Comfort as the highest priority means making decisions based on what will help your loved one feel most peaceful and pain-free. This might look different from day to day, but the guiding principle remains the same: choose whatever brings the most comfort and the least distress.
In daily life, this might mean:
This shift often brings relief to both patients and families. When the pressure to fight the disease is lifted, energy can flow toward love, connection, and peace. Many families describe feeling like they can finally breathe again when comfort becomes the primary goal.
Choosing comfort over cure often requires making difficult decisions about medical care. These decisions are deeply personal, and there’s no single right answer for every family. The key is making choices that align with your values and your loved one’s wishes.
Common medical decisions that focus on comfort include:
These decisions become easier when you remember that choosing comfort is choosing love. You’re not abandoning your loved one – you’re surrounding them with care that honors their dignity and focuses on their well-being.
The physical environment plays a huge role in comfort and peace. Simple changes to your loved one’s surroundings can make an enormous difference in how they feel day to day.
Elements that contribute to comfort:
Temperature control is especially important for people with AML, who often feel cold as circulation slows down. Warm blankets, heating pads on low settings, and maintaining a comfortable room temperature all contribute to physical comfort.
Noise control helps create a peaceful atmosphere. This might mean turning off televisions during rest times, asking visitors to speak quietly, or using soft background sounds like gentle music or nature recordings.
Hope doesn’t disappear when you choose comfort care – it transforms. Instead of hoping for a cure or remission, hope can focus on the meaningful moments that are still possible, even in the midst of serious illness.
Quality moments don’t require grand gestures or perfect health. Some of the most precious memories families create during this time are quiet, simple, and deeply meaningful.
Quality moments might include:
The key to quality time is presence rather than activity. Your loved one benefits more from your calm, loving presence than from trying to entertain them or keep them busy. Sometimes the most meaningful moments happen when you’re simply sitting together in comfortable silence.
When time becomes precious, even ordinary days can be filled with meaning. This doesn’t mean every day has to be perfect or special – it means approaching each day with intentionality and love.
Ways to make ordinary days meaningful:
Flexibility is essential because AML can quickly change energy levels and comfort. Plans may need to be adjusted, and that’s completely normal. The goal is to remain open to any connection possible each day.
Quality moments often happen in a community with the people who love your family most. Including others at this time can bring great comfort to both your loved one and to family and friends who want to help.
Ways to include others meaningfully:
Remember that your loved one gets to choose who they want to see and when. Some people like lots of visitors during this time, while others prefer quiet time with just immediate family. Both preferences are entirely normal and should be respected.
To every person walking this path with AML – whether you’re the patient, a family member, or a caregiver – please know that you are not alone. This journey is one of the most challenging experiences humans face, and it requires tremendous courage, love, and strength.
Your life has meaning and value that extends far beyond your diagnosis. AML may have changed your body, but it hasn’t changed who you are at your core. You remain a beloved family member, friend, and person worthy of comfort, dignity, and love.
It’s normal to have many different feelings during this time – fear, sadness, anger, peace, gratitude, and love can all exist at the same time. There’s no right way to feel or wrong way to face this illness. Your feelings are valid, and expressing them to people you trust can provide significant relief.
Your comfort matters. You deserve to have your pain managed well, your fears addressed with kindness, and your preferences respected. Don’t hesitate to speak up about what you need to feel more comfortable or peaceful.
You have the right to make decisions about your own care, including the right to say no to treatments that don’t align with your values or goals. Choosing comfort over cure is not giving up – it’s choosing to focus on what matters most to you.
Your love makes an enormous difference. Even when you feel helpless in the face of this disease, your presence, care, and love provide comfort that no medical treatment can replace.
Caregiving is one of the most challenging things humans do. You may feel overwhelmed, exhausted, or emotionally drained, and those feelings are completely normal. Taking care of yourself isn’t selfish – it’s necessary for being able to care for your loved one.
You don’t have to be perfect. There will be moments when you feel impatient, sad, or frustrated. There will be times when you don’t know what to say or do. These human moments don’t make you a bad caregiver – they make you a real person dealing with an incredibly difficult situation.
Ask for help when you need it. Whether it’s practical help with household tasks, emotional support from friends or counselors, or respite care so you can rest, accepting help allows you to be a better caregiver and to sustain your efforts over time.
Your work in hospice and palliative care represents some of the most important and compassionate work in all of healthcare. You provide comfort, dignity, and support during one of the most vulnerable times in people’s lives.
Every family you serve is doing the best they can with an impossible situation. Some families will embrace comfort care quickly, while others will struggle with the transition. Some will be organized and communicative, while others will be overwhelmed and confused. All of these responses are normal and deserve your patience and understanding.
Your expertise in symptom management and emotional support provides relief that families cannot find anywhere else. Your knowledge about medications, comfort techniques, and the dying process helps families navigate this journey with less fear and more peace.
Remember to care for yourselves, too. This work can be emotionally demanding, and it’s essential to have your own support systems, boundaries, and self-care practices that help you continue providing excellent care.
This journey with AML is not one anyone would choose, but it is one that can be walked with dignity, love, and peace. When comfort becomes the priority, families often discover reserves of strength they didn’t know they had. They find meaning in simple moments and connection in the midst of loss.
Every day you choose comfort over suffering is a victory. Every moment of peace you create is precious. Every expression of love and care makes a difference. This is not a journey of defeat – it’s a journey of choosing what matters most and holding onto it with both hands.
You are stronger than you know, more loved than you can imagine, and not alone in this journey. Support is available, comfort is possible, and peace can be found even in the midst of the most challenging circumstances.
The path ahead may be uncertain, but it can be walked with compassion, dignity, and love. That is our hope for you, and our commitment to walking alongside you every step of the way.
Early Palliative Care in Acute Myeloid Leukemia
Effectiveness of Integrated Palliative and Oncology Care for Patients With Acute Myeloid Leukemia
Supporting a Loved One with Acute Myeloid Leukemia
Caring for a Loved One with Acute Myeloid Leukemia
End-of-Life Care: Understanding Symptoms and AML Progression
Cancer Caregiving A-to-Z: An At-Home Guide for Patients and Families
Things I Wish I’d Known: Cancer Caregivers Speak Out
Articles on Advance Directives
CaringInfo – Caregiver support and much more!
The Hospice Care Plan (guide) and The Hospice Care Plan (video series)
Surviving Caregiving with Dignity, Love, and Kindness
Caregivers.com | Simplifying the Search for In-Home Care
Geri-Gadgets – Washable, sensory tools that calm, focus, and connect—at any age, in any setting
Healing Through Grief and Loss: A Christian Journey of Integration and Recovery
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VSED Support: What Friends and Family Need to Know
Take Back Your Life: A Caregiver’s Guide to Finding Freedom in the Midst of Overwhelm
The Conscious Caregiver: A Mindful Approach to Caring for Your Loved One Without Losing Yourself
Everything Happens for a Reason: And Other Lies I’ve Loved
Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying
Bridges to Eternity: The Compassionate Death Doula Path book series:
Additional Books for End-of-Life Doulas
VSED Support: What Friends and Family Need to Know
Find an End-of-Life Doula
At present, no official organization oversees end-of-life doulas (EOLDs). Remember that some EOLDs listed in directories may no longer be practicing, so it’s important to verify their current status.
End-of-Life Doula Schools
The following are end-of-life (aka death doula) schools for those interested in becoming an end-of-life doula:
The International End-of-Life Doula Association (INELDA)
University of Vermont. End-of-Life Doula School
Kacie Gikonyo’s Death Doula School
Laurel Nicholson’s Faith-Based End-of-Life Doula School
National End-of-Life Doula Alliance (NEDA) – not a school, but does offer a path to certification
Remember that there is currently no official accrediting body for end-of-life doula programs. It’s advisable to conduct discovery sessions with any doula school you’re considering—whether or not it’s listed here—to verify that it meets your needs. Also, ask questions and contact references, such as former students, to assess whether the school offered a solid foundation for launching your own death doula practice.
Holistic Nurse: Skills for Excellence book series
Empowering Excellence in Hospice: A Nurse’s Toolkit for Best Practices book series
