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Hospice

shows nurse providing care

Palliative Care vs. Hospice Care: What’s the Difference?

By Hospice

If you or a loved one have recently entered hospice care, all of the jargon and terminology may feel daunting and foreign. For many people, two terms that often become confusing are palliative care and hospice care. Today, let’s break these two terms down so that you feel more comfortable and knowledgeable. After all, understanding what’s going on around you can help create a little bit of control in an uncertain situation. 

shows nurse providing care

What is Palliative Care?

First, let’s talk about palliative care and get a sense of what it provides.  

Definition

In short, palliative care refers to the day-to-day care and emotional support provided to someone with a life-threatening illness as doctors pursue a cure (age doesn’t matter). In other words, curative treatments and palliative care occur simultaneously.  

For example, a person dealing with a stage 4 cancer diagnosis will receive palliative care as they go through the treatments prescribed by their doctor. Palliative care begins with a diagnosis and only ends when 1) the person gets well or 2) it becomes clear that the person isn’t going to survive their illness.

Who provides palliative care?

The primary care physician oversees palliative care. When a person begins to receive care, a team is assigned to them. This team will work with the patient and their family to provide medical, emotional, physical, social, and practical support.  

The palliative care team is made up of doctors, nurses, social workers, nutritionists, and chaplains (based on the patient’s needs). Each member of the team focuses on different aspects of the patient’s overall well-being and care.   

Shows nurse taking patient's blood pressure

What is the purpose of palliative care?

Some illnesses and treatment plans take a harder toll on the body. Palliative care seeks to enhance a person’s life by focusing on quality of life – for both the patient and their family.  

Not only does palliative care focus on easing symptoms, the palliative care team also desires to help patients understand their treatment options so they can make the choices most appropriate for their specific needs.  

Where can a person receive palliative care and is it covered by insurance?

Thankfully, palliative care is available at many different types of facilities. You can receive it at hospitals, nursing homes, outpatient palliative care or specialized care clinics, or even at home.  

As for insurance, it’s best to check with your insurance provider, though many plans do include some form of coverage. If you are a veteran, check with the Department of Veterans Affairs to see if they might cover palliative care.  

How do I request palliative care? 

If you think palliative care is the best next step, your primary care physician can refer you to a palliative care specialist. However, if your doctor doesn’t mention it on their own, don’t be afraid to ask!  

Doctor talking to young patient about treatment options

What is Hospice Care?

Now that you have a better understanding of palliative care, let’s compare it to hospice care. 

Definition

Hospice care refers to the care provided to those who have received a terminal diagnosis (often with a prognosis of six months or less). However, an illness’s timeline can change so it’s possible to receive hospice care for longer than six months, if needed. Hospice care focuses on pain and symptom management since patients in hospice care are no longer seeking a cure.  

Who provides hospice care?

Similar to palliative care, patients are provided with a hospice care team made up of doctors, nurses, social workers, nutritionists, volunteers, and chaplains (as needed) that provide a variety of services. However, hospice care is overseen by the hospice medical director rather than the person’s primary care physician. 

Regardless, everyone works together to ensure that both the patient and their family are receiving the holistic care they need. The team will visit regularly and is available by phone.  

Illustrates doctor talking with older couple about care options

What is the purpose of hospice care?

Hospice care seeks to provide care, comfort, and quality of life to the person who is dying. At this point, the patient understands that their body is no longer responding to medical treatments. The hospice care team steps in to offer comprehensive care for medical, physical, practical, and spiritual needs.  

Additionally, the hospice care team provides much-needed assistance to family members and friends as they grapple with the day-to-day demands of caring for a loved one with a terminal illness.  

Where can a person receive hospice care and is it covered by insurance?

In most cases, hospice care is received at the home, but it is also available at assisted living and nursing home facilities, hospitals, and hospice centers.  

Both Medicaid and Medicare offer coverage for hospice care (as do most other insurance companies), but you will need to call to get the specifics of your particular plan. Again, if you are a veteran, don’t forget to check with the VA. 

How do I request hospice care?

If you confer with your doctor and decide not to pursue life-saving treatments, you can start talking about hospice care. Most often, the doctor will bring it up, but if not, ask. There are some minimal eligibility requirements you can read about here 

Nurse reviewing paperwork and options with male patient

Let’s Recap

As you can see, hospice care and palliative care are quite similar. Both involve putting together a team of qualified professionals to assist a patient and their family medically, emotionally, physically, spiritually, and practically. Both involve easing pain and symptoms related to a life-threatening condition.  

The main difference between the two relates to ongoing curative treatment. With palliative care, the patient is still actively seeking a cure, while those in hospice care have exhausted all curative options and are focusing on quality of life. 

With these terms defined, hopefully you will feel empowered to ask for what you need when you need it. After all, both palliative care and hospice care options are available and will offer caring support during a difficult season of life.   

Two people holding hands in a comforting way

Caring for Yourself Emotionally and Physically When Someone You Love is Dying

By Grief/Loss, Hospice

If you have a friend or loved one who is dying, you’re likely dealing with a lot of feelings right now: sadness, shock, disbelief, anger, anxiety. It’s normal to experience these emotions, and you have every right to feel the way you do. As you juggle your own grief with the need to be there, physically and emotionally, for your friend or loved one, prioritize caring for yourself and realize that you can’t do it all on your own. Below, we will discuss 6 recommendations that will help you tend to yourself and stay emotionally stable as you care for your friend or loved one in their final days.

1. Share Your Feelings

Someone you care deeply about is dying and will soon be gone. Odds are, you will also need support as you explore your own feelings about this illness and the changes you see in your friend or loved one. Find someone who will listen to you without judgment as you talk out your own feelings. To stay available to your loved one, you need to be able to work through your own feelings. Do this with someone you trust.

group of four sitting together, sharing and talking

Additionally, many hospices, churches, and community groups offer support groups for friends and family of the dying—both before and after the death itself. Take advantage of these compassionate resources.

2. Care for Your Body

Visiting or caring for a terminally ill person will zap a lot of your energy – both mental and physical. To make the most of the time you have left with your loved one, you need to make sure you aren’t running yourself ragged. Make sure to eat nutritious meals. Get plenty of rest. Continue to exercise. Spend time doing things that make you happy. Take a break from the sick room.

Colorful plate of healthy foods like broccoli, carrots, chicken, tomatoes, brown rice

If you’re a primary caregiver, it may feel counter-intuitive or just plain wrong to prioritize caring for yourself, to take time away, or to enjoy simple activities, but you will need these times to help you stay afloat. No one can sustain continuous stress, anxiety, and sadness without starting to crack. Adding a few caring habits to your life will help you keep it together and have the energy you need to be fully present with your loved one.

3. Realize Your Own Limitations

It’s important to realize that not everyone can offer ongoing support to someone who is dying. If you feel you simply can’t cope with the situation, try to understand your reticence and learn from it. Ask yourself, “Why am I so uncomfortable with this?” and “What can I do to become more open and compassionate in times of need?”

Do not, however, avoid your friend or loved one altogether. Phone rather than visit. Write a letter or email if you can’t bring yourself to phone. Let them know that this situation is difficult for you while at the same time acknowledging that your loved one’s fears and needs come first.

On the other end of the helping spectrum, don’t become obsessed with the illness or feel that you must be your loved one’s only means of support. Do not emotionally overburden yourself.

4. Establish a Routine

After a terminal diagnosis, everything may feel out of control. Your routine is upset. You are suddenly dealing with events, people, and emotions you didn’t expect. Your life has lost its normalcy and has been thrown into disarray. By establishing a routine, you can begin to gain back some of the normalcy and control you lost. When you feel comfortable in your routine, you can begin to process what’s happened and learn how to deal with and manage your feelings.

Woman writing on a calendar, outlining her routine for the week

Additionally, establishing a routine will help your dying friend or loved one. They also need structure to rely on, as their life has been thrown into just as much, if not more, disarray than yours. If you are a close caregiver, establish a routine together. If you are more on the periphery, make sure to communicate your wish to visit on a regular visit and find a time that works best for both of you.

5. Embrace Your Own Spirituality

If faith is part of your life, express it in ways that seem appropriate to you during this difficult time. Pray with your friend or loved one and with their family. Allow yourself to be around people who understand and support your religious beliefs. Read spiritual verses or poems. Sing songs. Find the comfort that your faith can bring to the hard seasons of life.

Woman sitting in church pew

If you are angry at God because of your loved one’s illness, that’s okay. Find someone to talk with who won’t be critical of whatever thoughts and feelings you need to explore. It’s normal to have questions or doubts when faced with death, but as you embrace your own spirituality, you will find the answers you need.

6. Seek Hope and Healing

As much as you may not want to face it, in time, your friend or loved one will die. To love and live wholly again, you must find a way to mourn. In fact, you cannot heal unless you openly express your grief. Denying your grief, before and after the death, will only make it more confusing and overwhelming. As painful as it may be, you must embrace your grief in order to begin to heal.

Dr. Alan Wolfelt, a nationally recognized grief counselor and author, puts it this way: “You might fall into the common thinking of our society that denying these feelings will make them go away. You might have the urge to ‘keep your chin up’ and stay busy and wait to ‘get over’ your grief. Yet, ironically, the only way to help these hard feelings pass is to wade in the muck of them. To get in and get dirty. Grief isn’t clean, tidy, or convenient. Yet feeling it and expressing it is the only way to feel whole, once again.”

Two people holding hands in a comforting way

Reconciling your grief will not happen quickly. Remember, grief is a process, not an event. Be caring and patient with yourself. Never forget that the death of someone loved changes your life forever.

With these 6 tips in mind, start choosing the best ways to maintain your own self-health while supporting your dying friend or loved one. More than likely, you will still be tired and emotionally worn. However, these caring recommendations can help prevent you from reaching burnout as you journey alongside someone you love during their final days.

*Based heavily on a brochure by Dr. Alan Wolfelt, a respected author and educator on the topic of healing in grief. He serves as Director of the Center for Loss and Life Transition and is on the faculty at the University of Colorado Medical School’s Department of Family Medicine. Visit www.centerforloss.com to learn more about helping children in grief. Published with permission.

Younger person holding older person's hands in a comforting way

Who Qualifies for Hospice Care?

By Hospice

If you or a loved one have received a terminal diagnosis or have experienced a sudden decline in health, your entire family is probably feeling sad, stressed, and emotionally drained. To help you through this difficult season of emotional ups and downs, hospice care may be just what your family needs. But what are the eligibility requirements? Who qualifies and how? Let’s take a deeper look.

Younger person holding older person's hands in a comforting way

Two Basic Eligibility Requirements

1. Certification of Illness

A person is eligible for hospice if they have been diagnosed with a terminal illness and given less than six months to live. The primary physician and the hospice’s medical director will discuss the person’s illness and certify that the person has six months or less to live.

When determining eligibility and certifying illness, the primary physician and hospice medical director often look for three indicators: 1) a patient’s lack of improvement despite treatment, 2) a patient’s goal becomes comfort rather than cure, and 3) acute health events, like heart attack or stroke.

Older woman at medical appointment, talking with female doctor who is listening intently

Some common health symptoms that indicate a patient may qualify for hospice are:

  • Frequent hospitalizations in the past six months
  • Significant weight loss (10% or more) within the past 3-6 months
  • A change in mental, cognitive, and functional abilities
  • Increasing weakness and fatigue
  • Decreasing appetite or trouble swallowing
  • Inability to complete daily tasks, like eating, bathing, dressing, walking, etc.
  • Recurring infections or increasing pain
  • Insufficient hydration or nutrition
  • A desire to stop treatment or to not go to the hospital

With some illnesses, often those that are long-term, the primary physician and hospice medical director will look for specific symptoms to help them determine if an illness has reached an end stage. This includes illnesses like ALS, Alzheimer’s and dementia, lung, heart, or liver disease, HIV/AIDS, cancer, neurological conditions, sepsis, and renal failure.

Let’s move on to the second eligibility requirement.

2. Focus on Comfort Rather than Cure

After an illness has been certified, there is one more eligibility requirement. Before a hospice care team can step in and begin to help the family, the terminally ill person must state that it is their intention to seek palliative care instead of curative care. This means that all care will now focus on improving quality of life and relieving pain rather than on life-prolonging treatments.

However, please note that you can stop hospice care at any time. If life expectancy improves or new treatments become available, you can stop hospice care and focus on curative care.

At home nurse listening to older, male patient's heartbeat

Alternatively, if hospice care isn’t working out for your family for whatever reason, you can stop it and do something else that may work better for your particular situation. If you need to re-enter hospice care at a later date, you can do so after the illness is re-certified.

Once your eligibility is confirmed, you can begin receiving services from your hospice care team. Care usually takes place at your home, but your insurance may cover other options so make sure to ask. To learn more about the basic services available to you through hospice, click here.

What if You Need Hospice Care for Longer than 6 Months?

Great question. Doctors don’t know exactly how an illness will affect each person individually. Because of this, a prognosis of six months may turn into a longer period of time. Hospice prepares for that.

Hospice care breaks up into benefit periods. You can receive hospice care for two 90-day periods, followed by an unlimited number of 60-day periods. However, at the end of every benefit period, doctors will reassess and recertify that hospice care is still needed.

Older man sitting with doctor, getting his blood pressure taken

If the end of a benefit period is approaching, start the reapplication process 30 days before the next period is set to begin. That will give you time to get everything approved, ensuring there is no lapse in care.

Now that you better understand how hospice eligibility works, your next step is to talk with your own or your loved one’s primary physician to determine next steps.

Please NOTE: These eligibility requirements are based on Medicare’s Hospice Benefit. Medicare pays for more than 85% of all hospice fees in the United States. If you have a different health insurance provider, call to ensure they don’t have additional eligibility requirements.

At home aide smiling at and helping elderly female patient

Understanding the 7 Basic Hospice Services

By Hospice

If you have a loved one who has been diagnosed with a terminal illness, you may feel a little out of your element as you look into hospice care. One of the big questions on your mind may be, “What exactly does hospice do? What kind of services do they offer?” Today, we’ll take a look at the variety of standard offerings available through hospice and how they benefit your family.

Before we get started, it’s always helpful to have a definition of hospice care. At its core, hospice care is about taking care of patients and their families with kindness and compassion. It focuses on creating a comfortable, pain-free environment for the terminally ill, making each person feel confident that they know what to expect, and offering supportive care to family members.

Doctor placing comforting hand on patient's shoulder

First Things First

Once a terminally ill person enrolls in hospice care, they will begin receiving visits from their hospice care team. This team can include a wide variety of people, depending on the hospice services your family pursues.

The team could include a nurse, hospice aide, social worker, chaplain, bereavement coordinator, physical, occupational, speech, or dietary therapists, spiritual and/or grief counselors, and volunteers – all overseen by the hospice medical director.

However, the services your family receives will depend on your specific needs. Adjustments are made to accommodate each individual patient and their family. So, if you don’t want or need a dietary therapist right now, you don’t have to have one. But if your needs change, you can always request a dietary therapist later. Hospice care is very personalized and can be tailored to fit a family’s specific needs over the duration of a person’s terminal illness.

Male at-home nurse helping older man stand up from wheelchair

7 Basic Hospice Services

The most common way to pay for hospice is with Medicare (85.4%), followed by private insurance (6.9%), Medicaid (5%), and other options, including self-pay (2.7%). Because Medicare is used most often to pay for hospice, its benefit rules are used by Medicaid and other insurance plans as a base line. In other words, other insurance companies base their hospice benefit plans on Medicare.

That’s not to say there aren’t differences, but by reviewing Medicare’s hospice benefit policy, we can get a good look at what services are most commonly available across the country. NOTE: Some hospice providers will include their own personalized services in addition to these basic services, so make sure to ask if there are any additional services available.

1. Personal & Medical Care

Of course, every hospice patient will receive medical care. However, it’s important to understand that this is not curative care. Instead, it’s focused on managing pain and symptoms so that a hospice patient’s final days are as comfortable as possible. This includes services from doctors and nurses as well as prescription medication.

The hospice care team will closely monitor the hospice patient’s needs and create a treatment plan that meets both your end-of-life care preferences and provides optimal comfort.

At home nurse taking older man's blood pressure

2. Medical Supplies & Equipment

Secondly, hospice will provide medical supplies and equipment that may be necessary for pain relief and symptom management. This could include a walker, wheelchair, oxygen tank, hospital bed, bandages, catheter, bedpan, wound care supplies, and much more.

The hospice care team will arrange for both the delivery and removal of all such items. If there is something you need, communicate that to the care team, and they will work with you to ensure that the hospice patient’s needs are met.

3. Therapy & Nutrition

While it may not come to mind at first, hospice will coordinate physical therapy, occupational therapy, speech therapy, and even dietary counseling. If these services are deemed medically necessary by the hospice medical director, then they will be provided to the hospice patient. For example, if a person has trouble swallowing, speech therapy can help.

As for nutritional care, as the hospice patient’s body begins the dying process, they may not be able to process as many calories, digest properly, or process food or drink at all. With dietary counseling, family members are given the information needed to know when and how to make adjustments to diet and ensure that a loved one’s food intake is correct.

At home nurse giving cup of tea to elderly woman

4. Assistance at Home

As the hospice patient’s illness progresses, it will become even harder to take care of daily tasks. That’s why the hospice team is also available to help with eating, toileting, bathing, dressing, changing bed sheets, and more. The team’s highly trained nurses or aides will perform these tasks with care, discretion, and dignity. Plus, by doing these things, the hospice care team allows the family caregiver to take a break.

Talk with your hospice care team to find out what kind of at-home assistance they offer and request what best fits your needs.

5. Social Work Services

Here’s one you may not have heard about – social work services. You will have a hospice social worker assigned to you who will provide support by connecting the family to additional financial support programs or psychosocial support available in the community.

Some common social work services include:

  • Providing information about grief counseling and coping skills
  • Assisting with funeral or memorial preparations
  • Coordinating care
  • Helping families navigate the hospice care system
  • Advocating on the family’s behalf
  • Assisting survivors with arrangements and paperwork

Basically, the hospice social worker is there to guide your family through the hospice care process from beginning to end. Think of them as an incredible resource for questions and solutions.

Group of five people, various backgrounds, talking at support group

6. Counseling

Another big part of hospice care revolves around counseling, both for the hospice patient and their family. This could include emotional and spiritual counseling, grief counseling, and psychosocial counseling.

Spiritual & emotional counseling – There are skilled counselors available to help each person in the family achieve peace in their heart and spirit prior to the death. For some, this may mean seeking to restore broken relationships, mend hurt feelings, or draw closer to loved ones.

Grief counseling – After a terminal diagnosis, everyone knows that death will come sometime in the near future, and with death, comes grief. To support families through the ups and downs of grief, hospice makes grief counselors available to provide comfort, both before and after the loss of a loved one.

Psychosocial counseling – Receiving a terminal diagnosis takes a heavy toll, often bringing out depression or severe anxiety. Psychosocial counselors seek to help the hospice patient understand the end-of-life process and work toward social and emotional restoration.

At home aide smiling at and helping elderly female patient

7. Respite Care

One final service to review is respite care. Every family will have a primary caregiver, and it can be an exhausting role. To give family caregivers a much-needed, occasional break, the hospice care team will provide respite care.

Most often, this means that the hospice patient will be placed in an in-patient facility for a few days, giving both the caregiver and the hospice patient a break. If this is something your family caregiver needs, contact your social worker, who can arrange this for you. You can get respite care more than once, but only on an occasional basis.

These are the basic services you can expect to receive from a hospice provider. Of course, don’t forget to ask if your specific hospice provider includes additional benefits. As you walk down this road, remember that you aren’t alone. There’s an entire team of people waiting to help you through it.

Older man sitting at desk writing letters

Creating Memory Capsules to Help Your Loved Ones Grieve

By Hospice, Living Well

Sometimes, leaving a tangible reminder is just what your family needs to grieve well. Tangible items give surviving family members something to hold when they miss you. Something they can treasure when the pain of loss is sharp. If you’ve been diagnosed with a terminal illness or have reached a significant age, consider utilizing your time to create memory capsules that will help your family grieve in the days, months, and years to come.

By leaving close family members such a precious gift, you help them participate in a healing ritual that will play a key role in helping them grieve well and heal. Plus, it will give you a sense of relief to know that you’ve said what you need to say before your final days come.

Older man sitting at desk writing letters

What is a Memory Capsule?

Similar to a time capsule, a memory capsule is a container that holds precious mementos, photos, notes, and other memorabilia associated with a loved one. Once the capsule is complete, you put it away until a specified time. This might be a year after the loss, or even specific times, such as weddings, graduations, and other special events that you may not be able to attend.

A memory capsule could include letters to loved ones to be opened on special days, gifts, video messages, favorite photos, and cherished mementos. Then, when the date comes to open the capsule, surviving family members will feel like you are there with them in that special moment.

Cherished jewelry in a small box

Remembrance is a key part of grieving well and creating a memory capsule is one way your loved ones can remember, reminisce, and acknowledge the pain of the loss. The capsule will allow your loved ones to feel your presence when they need you most. Regardless of what you decide, when they open the box, tender memories will flood them with love and help them lovingly remember and grieve.

How to Create a Memory Capsule

With a few simple steps, you can create both a memory capsule that will bring healing and comfort to your family.

1. Determine where you’ll store the capsule or capsules.

First, you must decide where you will be storing the capsule. Whether you decide to store it indoors or outdoors will affect what kind of container you use and what types of items you place inside. So, before you can really begin, you need to determine how you plan to store your memory capsule. Also, select a person to be in charge of the capsule. This person will be responsible for storing the container and bringing it out of storage at the appropriate time.

Woman holding box on lap while sitting on couch

2. Choose your container.

Once you’ve determined where you plan to store your capsule, it’s time to select the type of container you intend to use. For indoors, you could select a box, a plastic container, a jar, or some other container that is easily storable.

However, if you plan to keep the capsule outside or you intend to bury it, there are a few things to consider. For outdoor safekeeping, find a container that is non-biodegradable, like something made of metal. Water, dirt, pressure, and critters won’t be friendly to your capsule so make sure that it’s strong, weather-proof, and watertight.

3. Decide what to include.

Next, it’s time to decorate your container (if you wish) and gather your memories. Since this activity is meant to be part of a healing ritual, you might write a letter or record a video message for your loved ones individually or as a family. This may be for a special occasion or for a later date in general.

For your message, record a favorite memory. Share funny stories. Give words of wisdom that you think they may need after you are gone. Share how proud you are of them and what they mean to you. Then, gather photos, drawings, trinkets, clothing, or other cherished items. Find the items that are meaningful to you and place them in the container.

Woman sitting at table selecting photos

If you are planning to store your capsule outdoors, consider using good paper and permanent ink. Try not to use paper clips, staples, or rubber bands because they will rust or break with age. Consider placing photos and other paper items into plastic sleeves to further protect them.

WARNING: Make sure you don’t include flammable materials or anything else that may cause damage, such as liquids, food products, matches, or lighters.

4. Set a date.

Typically, memory capsules are left closed for several years, but you can do whatever works best for your family. For example, if you are putting together a memory capsule for a loved one’s future birthday, Christmas, or wedding, they may open it within one year or it may be several years down the road. The most important thing is to select a time frame and make sure that everyone participating knows what the time frame is.

5. Seal your container and store it.

Once you have had a chance to add your letters, messages, and memorabilia to the memory capsules, all that’s left is sealing the container and storing it away until the agreed upon date. You can even write a “Do not open until” date on the outside. Enlist the help of family members so that your plans and wishes are known.

Little girl opening small memory capsule with her mom beside her

For extra protection, seal memory capsules with tape or a lock. If you are writing letters for future dates, entrust those letters to a family member. That family member can deliver the letters at the appropriate time.

Helping Your Loved Ones on Their Grief Journey

It may be difficult to think of all the special moments you may miss. The process of putting together messages and mementos can be very emotionally demanding. But in the end, it is worth it.

Dr. Alan Wolfelt, a nationally respected grief counselor and educator, says this about grief: “From my own experiences with loss as well as those of thousands of grieving people I have companioned over the years, I have learned that we cannot go around the pain that is the wilderness of our grief. Instead, we must journey all through it, sometimes shuffling along the less strenuous side paths, sometimes plowing directly into the black center.” So, as you lovingly help your loved ones confront their emotions head on, you can help them begin to deal with your loss and find a way to move toward healing and eventually reconciliation.

Just remember, you’re not alone on the journey. If you need help creating your memory capsules, lean on your loved ones. They love you and can be a source of support through the process of saying your goodbyes.

Husband sitting next to wife in hospital bed

Helping Your Family Process a Loved One’s Terminal Diagnosis

By Hospice

Learning that a member of your family has a terminal illness is often the most devastating news a family can receive. Your family is starting a journey they didn’t ask for and don’t want – with hospital visits, hospice care, grief, sorrow, and tears. But it doesn’t have to only be rainy days! You can create beautiful memories to cherish and turn your love and concern into positive actions. Together, let’s discuss ways you can help your family process what’s happening and grieve well together.

Father and son sitting outside looking at lake

1. Take Time to Accept What’s Happened

It’s going to take time to cope with your family’s new reality. Before the diagnosis, you may have thought this type of thing only happens to other families, and it’s hard to grasp that it’s now happening to yours. If the onset of the terminal illness was sudden or unexpected, you and the rest of your family will likely feel shock and numbness at first. This is a natural and necessary response to painful news.

Don’t try to take it all in at once. Accept your new reality in doses or increments. First, try to understand it in your head. Then, over the weeks and even months to come, you will come to understand it with your heart. Just take it one day at a time.

Mother comforting daughter, sitting on couch

2. Be Aware of Your Family’s Coping Style

How you and your family respond to this terminal illness will have a lot to do with how you as a family have related in the past. If your family is used to openly talking about their feelings with each other, they will probably be able to communicate more easily about the illness and the changes it brings. Families where people don’t talk about feelings and tend to deal with problems individually will probably have difficulty acknowledging the illness and its impact.

As you have conversations, you will find that some family members want to discuss the terminal illness, while others seem to want to deny the reality and refuse to discuss it. Right now, your family may feel like a pressure cooker: you all have a high need to feel understood, but little capacity to be understanding. Try not to force anything and give each family member room to come to grips with reality in their own way.

Little girl cutting vegetables in the kitchen with mother

3. Adjust to Changing Roles

A family member’s terminal illness is going to necessitate changes – in routine, in roles and responsibilities, activities, and more. Your family may have a hard time adjusting to the changing roles. For example, if the head of the household is dying, the other spouse may now have to find a job in addition to caring for the home and children. If grandma acted as the family’s binding force before she was ill, her family may now feel confused and disjointed where they once felt strong and cohesive.

These changes can cause upheaval and high emotions, affecting how your family interacts. Depending on temperament and age, some may act short-tempered, overly dependent, or stoic, to name a few options for altered behavior. Each person’s stress, anxiety, or fear will manifest in different ways, so be on the lookout for it. Try not to take any outbursts personally.

Home health nurse checking older man's heartbeat with stethoscope

4. Consider Getting Outside Help

One of the most compassionate things you can do for your family during this stressful time is to reach out for and accept help. If someone in your family is caring for the dying person at home, look into end-of-life care options. Have groceries delivered. Hire a housekeeper to come in twice a month. Talk to your church or other community organizations and ask for volunteers to help. And family counseling can be a healing, enriching experience that helps family members understand one another now and long after the illness.

Additionally, hospices are well-staffed and trained to help both the dying person and the dying person’s family. Their mission is two-fold: 1) to help the dying die with comfort, dignity, and love, and 2) to help survivors cope both before and after the death. Contact your local hospice early in the dying process. Too often families wait until the last few days of the sick person’s life to ask for hospice care. When contacted early, hospices can provide a great deal of compassionate support and care up to six months before the death.

Husband sitting next to wife in hospital bed

5. Understand What the Dying Person May be Feeling

Experiencing terminal illness affects a person’s mind, heart, and spirit. While you don’t want to make assumptions about what another person may feel, do be aware that terminally ill people may experience a variety of emotions. Fear, anxiety, anger, guilt, sadness, and loneliness are just a few of the emotions they may feel—one at a time or simultaneously.

These feelings are a natural response to terminal illness. Your role as caring family member should be to listen to the sick person’s thoughts and feelings without trying to change them. If they are sad, they’re sad. Don’t try to take that necessary emotion away. If they are angry or feeling guilty, that’s okay too. You may be tempted to soothe away or deny these painful feelings, but a more helpful response is to simply acknowledge them. Listen and understand.

Woman sleeping peacefully in bed

6. Help Family Members Tend to their Own Needs

When a family member is dying, that person becomes the focal point for the entire family. Suddenly everyone is concerned about that one person and their coming death. This is normal, but family members should not lose sight of their own needs during this difficult time.

Encourage everyone to nurture themselves as well as the sick person. Get enough rest. Eat balanced meals. Lighten schedules as much as possible. And even though the family is experiencing a serious time, they should still give themselves permission to be happy. Plan fun events. Allow time to laugh, love, and enjoy life.

Group of people holding hands in prayer

7. Embrace Your Spirituality

If faith is part of your family’s life, express it in ways that seem appropriate to you. Singly or together, you may find comfort and hope in reading spiritual texts, attending religious services, or praying. Allow yourselves to be around people who understand and support your religious beliefs. If one or more family members are angry at God because of the illness, realize that this is a normal and natural response. Try not to be critical of whatever thoughts and feelings each family member needs to explore.

8. Seek Hope and Healing

When a family member dies, each surviving member of the family must find a way to mourn if they are to love and live wholly again. It’s impossible to heal if you aren’t willing to openly express grief. Denying your grief, before and after the death, will only make it more confusing and overwhelming.

Mother and young son paying respects at a cemetery

Remember, every family member will grieve in a different way. Leave room for different expressions of grief. Some will feel sad, others angry, guilty, or even relieved. Don’t judge the reactions of the other people in your family – simply realize that each of you will face the pain differently. Look for ways to honor and remember the person you’ve lost. These healing actions will help you find a way to move forward.

Reconciling your grief will not happen quickly. Grief is a process, not an event. Encourage your family to be patient with each other and kind to themselves. Your life as a family has changed forever, and it will take time, open sharing, and intentionality to discover the way forward.

Man and woman sitting at a table reviewing documents, laptop lying on table

Deciding How to Pay for Hospice Care

By Hospice

Facing a terminal illness brings many worries and concerns but paying for end-of-life care shouldn’t be one of them. Thankfully, there are many ways to pay for hospice, and many of them are free. Let’s take a look at 7 ways to pay for hospice care. Then, you can decide which options work best for your family and specific situation.

First, it’s important to note that hospice care refers to care and support in the final stages of illness. It focuses on quality of life and comfort rather than curing an illness. If you or a loved one are still trying to cure an illness, then it’s not time for hospice care. Now, let’s get started.

Man and woman sitting at a table reviewing documents, laptop lying on table

1. Pay with Medicare (Ages 65+)

If the terminally ill person has Medicare coverage, then the Medicare Hospice Benefit should cover the vast majority of expenses (often 100%) if you use a Medicare-approved hospice provider. Thankfully, more than 90% of all hospices are certified by Medicare, so you should have no trouble finding one.

While there are eligibility requirements, if you qualify, then the Medicare Hospice Benefit will cover (to name a few):

  • All items and services needed for pain relief and symptom management
  • Medical, nursing, and social care and services
  • Drugs for pain management
  • Additional levels of service if needed
  • Durable medical equipment for pain relief and symptom management
  • Supplies, such as catheters or bandages
  • Aide and homemaker services
  • Speech, occupational, and physical therapy
  • Short-term inpatient care or short-term hourly care
  • Respite care (to provide primary caregiver with relief; small co-payment may be required)
  • Spiritual and grief counseling for you and your family

However, it’s important to note that the Medicare Hospice Benefit will not pay for treatments or prescriptions aimed at curing a terminal illness, room and board, services from a second hospice team (you must receive care from just one hospice team), and any inpatient/outpatient care or ambulance services you receive that are not arranged by your hospice (or are unrelated to your terminal illness).

To learn more, go to Medicare’s Part A coverage on their website.

Woman talking with female doctor at exam

2. Pay with Medicaid (Select Groups)

While Medicare is administered by the federal government and the rules are consistent throughout all U.S. states, Medicaid is a little different. Medicaid is funded by both state and federal monies, and each state is given flexibility to set their own eligibility requirements.

To that end, where you live plays a key role in determining your eligibility for Medicaid coverage.

Additionally, if you or a terminally ill loved one decide to move to a different state (perhaps to be closer to family), you must re-apply for Medicaid in your new state. Medicaid coverage doesn’t transfer from state to state.

Generally, Medicaid aims to assist low-income individuals, families, seniors, and people with disabilities. Medicaid offers similar services as Medicare, including:

  • Nursing and physician services
  • Counseling services
  • Medical appliances and supplies
  • Medication for symptom control and pain relief
  • Home health aide and homemaker services
  • Physical, occupational, and speech therapy

It’s possible to have dual coverage – both Medicare and Medicaid. If this is the case for you, you can use Medicaid to cover costs that Medicare doesn’t.

The best thing to do when using Medicaid to pay for hospice care is to call your State Medicaid Agency and find out if you meet their eligibility requirements for hospice care. Click here to see a full list of contact information for State Medicaid Agencies across the United States.

Man on phone asking about insurance, writing down answers

3. Pay with Private Insurance (Any Age)

If you are not eligible for Medicare or Medicaid, but you do have a work-based or private insurance plan, contact your health insurance provider to determine what your insurance plan covers.

Though private insurance plans vary greatly, many plans do provide at least some coverage for hospice care. However, keep in mind – even if your plan does offer some hospice care benefits, they may have limits on hospice expenses. This is why it’s so important to contact your provider to get a clear image of what options are available to you.

Additionally, your insurance provider may have specific eligibility requirements you must meet before you can access hospice care benefits. Make sure to ask about these requirements. At the very least, most insurance providers will require 1) a certification of a terminal illness from an attending physician, and 2) confirmation that the terminally ill person has elected not to seek curative treatments.

If your insurance plan does not cover the full cost of hospice care, there are other options to help your family supplement the cost of care.

4. Pay Using Veterans’ Benefits/Tricare (Any Age)

If you are a veteran, the Veterans Administration can help pay for hospice if you are enrolled in the VA Standard Medical Benefits Package. As long as you meet the clinical need for hospice services, you are eligible regardless of age. A few highlights of this coverage include:

  • Care available at your home, nursing home, assisted living, or wherever you call home
  • No co-pay for hospice care
  • Medical equipment, medication, and personal care supplies
  • Pain and symptom management
  • Care coordinated with your doctors
  • Physical, occupational, and other therapy services
  • Spiritual care and support
  • Volunteers with military experience (when available)
  • Ongoing grief counseling for patients and family

To learn more about utilizing your VA benefits to pay for hospice care, contact your VA social worker and discuss your options.

Father and young daughter standing in field with American flag wrapped around them

For veteran spouses and children, CHAMPVA for Life is a health insurance program available to the spouses and/or children of veterans killed in action or permanently disabled. It covers most medically necessary care for individuals who are 65 or older, including hospice. To learn more about CHAMPVA, click here.

NOTE: If you or a loved one are a veteran, also look into veterans’ burial benefits. These benefits include burial and plot allowances to offset the cost of a funeral or memorial, free headstone and burial flag, military honors, and if desired, burial in a national cemetery (at no cost to the family).

5. Pay with Crowdfunding (Any Age)

If you have a large support network, then creating a crowdfunding campaign may be a viable option. GoFundMe is one of the most common platforms. On sites like this, you can share about your health journey and invite others into your final days.

While it’s best not to count on crowdfunding as a primary source of financial help, it can definitely make a dent in the cost of hospice care for yourself or a loved one. Additionally, there are foundations out there – like Hospice Help Foundation – that are focused on offering financial assistance to families who need financial assistance to afford hospice care.

Elderly woman accepting cut of tea from nurse

6. Ask About Reduced Rates (Any Age)

If you’re uninsured or your available insurance just doesn’t cover the cost of hospice care, consider talking to your hospice care provider about reduced rates. Some hospice facilities offer free care for patients who lack the resources to pay. Additionally, hospices often seek out charitable donations, grants, or other community sources specifically so that they can assist families financially.

Even if the hospice cannot offer free care, they may be able to offer reduced rates or charge on a sliding scale. Either way, it doesn’t hurt to ask!

7. Pay with Personal Savings (Any Age)

While most people are unable to pay for hospice care out of pocket, if you are able to do so, it’s another way to pay for hospice. Of course, make sure that all other options available to you are exhausted before paying out of pocket. If you are eligible for benefits and services, it’s best to take full advantage of those options before taking a financial hit.

One person holding another person's hands in comfort as they listen

If you or a loved one have received a terminal diagnosis and you are looking into hospice care, there are many options available to pay for end-of-life care. Look into each one to see if you qualify. Also, most hospice providers employ financial support personnel, who can answer any questions you may have as you determine the best way to pay for hospice services.

Hopefully this information has helped you better understand some of the most common ways to pay for hospice care and gives you a path forward. As you consider other end-of-life concerns, look into estate planning and funeral planning so you can start providing answers to the questions your family will ask in the future.

Home health nurse helping woman walk across room

Processing & Accepting Your Terminal Diagnosis

By Hospice

You’ve just received the news you’ve been dreading ever since you had that first appointment: your medical condition is terminal. Right now, you may be feeling so many emotions – shock or disbelief chief amongst them. Even as you grapple with your feelings, you’re faced with an exceedingly difficult challenge: accepting that you are dying while striving to make the most of your days. In this article, we will discuss how to process the reality of your terminal diagnosis while also finding a way to continue to live fully even though you are dying.

Processing & Accepting the Reality of Your Diagnosis

The initial shock of your diagnosis may have faded, or it could still be front and center. Take a few days to allow the strength of your emotions to abate a little. Then, for both your own sanity and your family’s, start processing through your new reality so that you can make the most of your final days.

Doctor explaining diagnosis to a woman

1. Acknowledge You Are Dying

Acknowledging you are dying is the first step to living the rest of your life. If your illness was sudden or unexpected, you’re going to deal with shock, disbelief, or numbness at first. This is a natural and necessary response to painful news. Don’t try to deal with everything at once; take your time. At first, you will understand everything with just your head, but in time, you will come to understand it with your heart.

To acknowledge you are dying is to let go of the future. It is to live only in the present. There is no easy way to do this, and you will probably struggle with this every day. However, by acknowledging and not denying the reality of your coming death, you will open your heart and mind to the possibility of a new, rich way of living.

2. Question the Meaning of Life

Discovering that you are dying naturally makes you take inventory of your life. You have a right to have questions, fears, and hopes. Illness often establishes a new direction for our lives and makes us question some of our old habits. New thoughts, feelings, and action patterns will begin to emerge; embrace them. The unknown invites you to question and search for the meaning of your life, in the past, present, and future.

Older man sitting on stone steps thinking

3. Accept Your Response to the Illness

Each person responds to news of terminal illness in their own way. You, too, will have your own response. You may feel fear, excitement, anger, loss, grief, denial, hope, or any combination of emotions. By becoming aware of how you respond right now, you will discover how you will live with your terminal illness. Don’t let others tell you how you feel. Instead, find people who encourage you to teach them how you feel. After all, there’s no right or wrong way for you to think and feel.

4. Respect Your Own Need to Talk or Stay Silent

You may find that you don’t want to talk about your illness at all. Or you may find that you want to talk about it with some people, but not with others. In general, open and honest communication is a good idea. When you make your thoughts and feelings known, you are more likely to receive the kind of care and companionship you need.

But if you don’t want to talk about your illness, don’t force yourself. Perhaps you will be able to open up more later on, after you have lived with the reality of your illness for a time.

Husband comforting wife, sitting at home

5. Tell Your Family and Friends You Are Dying

As hard as it may be, your family and closest friends deserve to know that you are dying. Tell them when you feel able to. If you simply cannot bring yourself to tell them, ask a compassionate person you trust to share the news on your behalf.

Just as every terminally ill person reacts differently to a diagnosis, each family member or friend will react differently to your news. Some will sit in shock, cry, or refuse to believe it. Others will spring into helpful action by running errands for you, offering to clean your house, etc.

Many will not know how to respond. Because they don’t know what to say or do, or because your illness reminds them of their own mortality, they may even avoid you altogether. Please know that their apparent abandonment does not mean they don’t love you. Give them time to process.

Make sure not to neglect telling children. They, too, deserve to know. As with all people, children can cope with what they know. They cannot cope with what they don’t know. Be honest with them as you explain the situation in language they will understand. Don’t overexplain but do answer any questions they may have.

Older woman wearing green sweater sitting on couch doing research

6. Be an Active Participant in your Medical Care

Many people are taught to be passive recipients of the care provided by medical experts. But don’t forget—this is your body, your life. Don’t fail to ask questions that are important to your emotional and physical well-being out of fear that you will be “taking up someone’s time.”

Learn about your illness. Visit your local library and consult the medical reference books. Request information from educational associations, such as the National Cancer Institute or the American Heart Association. Ask questions of your doctor, home health or hospice nurses, and other caregivers.

If you educate yourself about the illness and its probable course, you will better understand what is happening to you. You will be better equipped to advocate for personalized, compassionate care. You may not be in control of your illness, but you can and should be in control of your care.

Man crouched beside wheelchair-bound wife, talking and laughing

7. Be Tolerant of Your Physical and Emotional Limits

Your illness will almost surely leave you feeling fatigued. Your ability to think clearly and make decisions may be impaired. And your low energy level may naturally slow you down. Respect what your body and mind are telling you. Nurture yourself. Get enough rest. Eat balanced meals. Lighten your schedule as much as possible.

8. Say Goodbye

Knowing you will die offers you a special privilege: saying goodbye to those you love. When you feel you are ready, consider how you will say goodbye. You might set aside a time to talk to each person individually. Or, if you are physically up for it, you might have a gathering for friends and family. Other ways of saying goodbye include writing letters, creating videos, and passing along keepsakes. Your survivors will cherish forever your heartfelt goodbyes.

9. Find Hope & Embrace Your Spirituality

When people are seriously ill, we tend to get caught up in statistics and averages: How soon will the illness progress? How long do I have left? These can be helpful to know, but they don’t always provide spiritual and emotional comfort.

Older man and wife sitting at table praying over meal

Even if you are certain to die from this illness, you can find hope in your tomorrows, your next visit from someone loved, your spirituality. Hope means finding meaning in life—whether that life will last five more days, five more months, or five more years.

If faith is part of your life, looks for ways to express it. You may find comfort and hope in reading spiritual texts, attending religious services, or praying. Allow yourself to be around people who understand and support your religious beliefs. If you are angry at God because of your illness, that’s okay; it’s a normal and natural response. Find someone to talk to who won’t be critical of whatever thoughts and feelings you need to explore.

10. Reach Out for Support

While you may have been raised to be fiercely independent, confronting a terminal illness cannot and should not be done alone. As difficult as it may be for you, you must reach out to others, specifically the people you feel most comfortable with in stressful times. Give yourself permission to reach out for prayers, support, and practical assistance.

Home health nurse helping woman walk across room

Additionally, hospices are an indispensable resource for you. They are well-staffed and trained to help both the dying person and the dying person’s family. Their mission is to help the dying die with comfort, dignity and love, and to help survivors cope both before and after the death. Whatever you do, don’t isolate yourself and withdraw from people who love you.

You still have a journey ahead of you – as you learn to accept and live with your diagnosis. Hopefully, these words have given you hope and a place to start as you process through your feelings and decide how to live the remainder of your days with purpose and intentionality.

*Based heavily on a brochure by Dr. Alan Wolfelt called Helping Yourself Live When You Are Dying. Dr. Wolfelt is a respected author and educator on the topic of healing in grief. He serves as Director of the Center for Loss and Life Transition and is on the faculty at the University of Colorado Medical School’s Department of Family Medicine. Visit www.centerforloss.com to learn more about the natural and necessary process of grief and mourning and to order Dr. Wolfelt’s books.

Father holding daughter's hand as they walk outside

10 Ways to Emotionally Support a Dying Child (and Their Family)

By Grief/Loss, Hospice

A child you care about is dying. You want to offer your love and care, but you’re not sure how to go about it. Whether you are a parent, friend, or caregiver, may this guide help you turn your care and concern into action.

When a Child is Dying

In our hearts, we all believe that children aren’t supposed to die. As much as we wish otherwise, the sad truth is that children do die. Confronting this difficult reality is the first step you can take toward helping a dying child. It’s going to take time, so for now, try to accept the reality of the child’s medical condition, if only with your head. You will later come to accept it with your heart.

Little boy in bed checking his teddy bear's heartbeat with a stethoscope

As you navigate through a heartbreaking situation, may these 10 insights serve as a guide to loving a child (and their family) through one of life’s most difficult times…the loss of a child.

1. Don’t Underestimate the Child’s Capacity to Understand

Children have the capacity to understand more than we give them credit for. Like adults, they deserve our respect and compassion—and our honesty. Sometimes adults, in an effort to protect themselves, assume that children are incapable of understanding or should be protected from the truth. These adults often don’t talk directly to dying children about their prognoses, which can leave the children feeling alone and isolated.

Children can cope with what they know. They can’t cope with what they don’t know. Dying children deserve an atmosphere that creates open, two-way communication. Many terminally ill children will go back and forth between wanting to know details about their illness and not wanting to acknowledge they are even sick. It is critical to follow the child’s lead. Always listen first as you participate in open dialogue about any feelings, concerns, or questions they might have. If they ask something and you don’t know the answer, simply say, “I don’t know.”

Child sitting on bed with mother kneeling and talking in a loving way

2. Be Honest with the Child About Their Coming Death

As the child comes to comprehend their illness and its severity, explain to them that they will likely die, making sure to use language they will understand. The conversation may be the hardest thing you have ever done, but honest love is what a dying child needs most.

Depending on their age and developmental maturity, they may not immediately (or ever) fully understand what their illness means. But they will begin to incorporate the notion of death into their remaining life and will have the opportunity to think about it and ask questions. They will also have the privilege of saying goodbye.

Do not try to protect the child by lying about their condition. If a dying child is told they are going to get better but everyone around is acting down and defeated, they will notice. This may make the child feel confused, frustrated, and perhaps angry.

Instead, show your love and respect by being honest and open with them and helping them understand that they are dying.

Father holding daughter's hand as they walk outside

3. Encourage Open Communication, But Do Not Force It

As caring adults, we should encourage honest communication between the child, caregivers, family, and friends. However, we should never force it. Children will naturally “dose” themselves as they encounter the reality of the illness in their life. In other words, they will accept the reality of their circumstances in small doses over time. They aren’t able to take all the information in at once, nor will they want to.

Answer only what the child asks. Don’t overrespond out of your own anxiety. Remember—children will determine with whom they want to share their pain. Often, a child wants to protect their parents or other close adults and will adopt a “chin up” attitude around them. This is a normal response and should be respected.

4. Watch for the Child’s Indirect Communication

Children, particularly seriously ill children, are not always direct about their thoughts and feelings. They may make statements, display behaviors, or ask questions that indirectly suggest their understanding or awareness of the situation. These cues reflect underlying needs and deserve loving responses. Pay special attention to the child’s non-verbal means of trying to communicate any needs or concerns.

Mother kissing son's forehead at sunset

5. Tune In to the Dying Child’s Emotions

Aside from the considerable physical toll terminal illness can take, dying also affects a child’s head, heart, and spirit.

While you shouldn’t guess at or make assumptions about a child’s feelings, do be aware that they may experience a variety of emotions. Fear, anxiety, anger, sadness, and loneliness are just a few of the emotions they may feel—one at a time or simultaneously.

These feelings are a natural response to serious illness. Don’t try to help the child “get over” these feelings; simply enter into their feelings and validate them.

6. Help the Dying Child Live to the Fullest

Terminal illness presents human beings with an exceedingly difficult and contradictory challenge: you are dying, you know you are dying, yet it is your nature to want to live. Dying children often feel this tension, too. If the adults around them have been honest, they understand that they will soon die, but they still want to live and laugh and play as often as they can.

Help the dying child live happily. Do what is in your power to make them comfortable. Create special, memorable moments. Don’t completely abandon your normal routine (this may make the child feel out-of-control and unprotected) but do work to make each remaining day count. Above all, spend time with them. Make sure that the people who mean the most are around as often as possible.

Four children of different ethnic backgrounds smiling while playing outside

Peer relationships are very important to children, and the illness will likely create some social and physical barriers to these friendships. When possible, nurture the child’s friendships when possible. Arrange a special party. Make play dates with one or two best friends. Help two children write letters back and forth when personal contact isn’t possible.

7. Take Advantage of Resources for the Dying

Local hospices are well-staffed and trained to help both a dying child and their family. The hospice’s mission is to help the dying die with comfort, dignity, and love, and to help survivors cope both before and after the death. Other organizations, like the Make-A-Wish Foundation, help dying children find joy in their remaining lives.

8. Support Parents and Other Important Adults in the Child’s Life

A child’s terminal illness naturally impacts everyone who loves the child. Not only should you be supportive of the child, you should also be available to support and nurture other family members and close friends through the grief and stress of the situation. The adult’s response to the illness will influence the child’s response. So, in supporting adults, you are supporting the child.

Perhaps you can be a caring companion to the family and help in practical ways. Offer to provide food for the family, wash clothes, or clean the house. Listen when they need to talk. Sit with the ill child to give parents a break. Offer to babysit the other children in the family. While words may be inadequate, your supportive behavior will be remembered forever.

Holding a friend's hand in a comforting way

9. Don’t Forget Siblings

Don’t forget the impact a dying child’s illness is having on their siblings. Because so much time and attention are focused on the dying child, his brothers and sisters may feel emotionally abandoned. Go out of your way to ensure their needs are also being met.

10. Embrace Your Spirituality

If faith is part of your life, express it in ways that seem appropriate to you. During this difficult time, you may find comfort and hope in reading spiritual texts, attending religious services, or praying. Allow yourself to be around people who understand and support your religious beliefs.

A Final Word

All children, terminally ill or not, have the right to be nurtured, to be children, and to make choices that impact their lives. There is nothing more difficult for families than confronting the death of a child. As caring adults, we have a responsibility to maximize the quality of life for the child, the family, and friends. May these 10 insights help you lovingly care for each person affected by the death of a child.

*Based heavily on a brochure by Dr. Alan Wolfelt called Helping a Child Who is Dying. Dr. Alan Wolfelt is a respected author and educator on the topic of healing in grief. He serves as Director of the Center for Loss and Life Transition and is on the faculty at the University of Colorado Medical School’s Department of Family Medicine. Visit www.centerforloss.com to learn more about helping children in grief. Published with permission.

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