End-of-life care for young adults

As you or your loved one nears the end of life, you may notice changes in sleeping, eating, and breathing as body systems begin to slow down. Patients may take in minimal food and liquid, which will progress to the point that all they desire is to keep the lips and mouth moist.

Sleep may increase to the point where they become comatose. Breathing may become more irregular, perhaps even with short periods of apnea. Congestion and a rattling sound may become apparent because of the inability to cough up saliva and secretions. Hearing and vision will decrease.

It's not unusual for a dying person to have visions, especially of others that are already deceased. It's best not to correct or express doubt with your loved one. Instead, offer support and ask about what they see and what the person in the vision is saying.

Be sure to inform the hospice team about any of the above changes so they can confirm that these changes are, in fact, due to end of life.

As your loved one's life draws to its close, there are things you can do to make them more comfortable:

• Talk to your loved one, even if it seems as though they can't hear you
• Try to fulfill any requests such as favorite foods, music, or pictures
• Use pillows or adjust the bed to make your loved one comfortable
• Wash your loved one's face and hands gently with a warm washcloth and apply lotion to keep the skin from becoming dry
• Help your loved one turn or change positions to prevent bed sores and cramps 

Talk to the hospice team about other things you can do to care for your loved one and what to expect when they pass away.

The end of life often can compel your loved one and family to look inward and search for answers about spiritual matters such as the meaning of life, death, and being. Author and gerontology professor Kenneth J. Doka, PhD has suggested that this quest can take the form of searching for the meaning of one's life and learning how to define dying appropriately for oneself. 

Meaning in life is defined individually and will somehow encompass affirming the value of your life. Failure to do this will create despair and a feeling of having wasted your life.

You can help your loved one find the meaning in their life. Ask the patient to talk about their life. Share old photos and create family trees and genograms. Share family stories. Talk about all of those whose lives they have affected. If your loved one wishes to talk about their own death, allow your loved one to do so and listen even though it may be difficult or painful. Talking about death may be helping your loved one cope.

Individuals who seek to "die appropriately" are trying to interpret and understand the experience of their own death. Hope beyond the grave can take many forms.

These include a belief in:

• Immortality through an afterlife
• Immortality through one's remains returning to the chain of life
• Immortality through one's progeny
• Immortality through one's creations
• Immortality within the memory of one's community
• Immortality through the donation of organs and body parts

Whatever way your loved one chooses their spirituality to manifest, it will undoubtedly reflect the person’s individuality.

Advance Directives

Advance directives are a patient's instructions about future medical care in case they can no longer speak for themselves. Ideally, an advance directive should be in place before a person becomes ill or before a crisis.

If your loved one doesn't have an advance directive, you should choose a practical time and place to have this conversation. Let your ill relative set the conversation's pace. Use good listening skills but expect some initial resistance. Whatever your loved one’s wishes are, acknowledge and sustain them, even if you don't agree.

An advance directive is normally made up of one or two legal documents: a living will and/or a medical power of attorney. You can obtain an advance directive from your healthcare provider, or you can download a copy from the National Hospice and Palliative Care Organization.

Each type of advance directive is regulated differently by state. For this reason, you may wish to consult with an attorney when preparing an advance directive. 

Living Wills

A living will outlines a person's wishes about medical treatment if they are unable to communicate at the end of life. State law defines when a living will can go into effect and may limit treatments to which the living will applies. Still, a person always has the right to refuse treatment.

Medical Power of Attorney

Sometimes called a healthcare proxy, or appointment of a healthcare agent, a medical power of attorney allows a person to appoint someone they trust to make decisions regarding their medical care. In many states, the appointed person may speak for a patient at any time they are unable to make decisions, not just at the end of life.

Read Communicating as a Caregiver from the Caregiver Workbook series, and Advance Care Planning, for more information. 

 Financial Matters

The costs of end-of-life care can be considerable. Financial stress at this time is common, and financial issues are important. Families deal with terminal illness and finance concerns in different ways. It's important to not feel guilty because you have concerns.

Although no single resource exists to completely address a family's financial concerns, an LLS Information Specialist (800-955-4572) can provide information and referrals to help you. 

Hospice is about improving the quality of the death experience for patients, families, and caregivers. The philosophy of the hospice model is to provide compassionate, quality care for people facing terminal illness. This is accomplished with an interdisciplinary team approach so the best medical care, pain control, and emotional and spiritual support can be tailored to the individual needs of each patient and family. Hospice philosophy also embodies the belief that everyone has the right to die with dignity and without pain, and that families should receive the help and support needed to participate in this process.

A person may be eligible for hospice if they:

• Have a life expectancy of 6 months or less
• Decide to stop receiving treatment
• Can no longer safely receive treatment

Most hospice programs enable the patient to stay at home. However, some are freestanding hospice centers or are affiliated with hospitals or nursing homes. The hospice team is usually comprised of hospice physicians, nurses, social workers, home health aides, volunteers, and chaplains or other pastoral counselors.

Some of the services provided include:

• Pain management
• Emotional and spiritual support
• Family coaching
• Provision of drugs and medical supplies
• Home health aide placement and supervision

You can ask your doctor for a referral or contact the following organizations for more information or a referral to a local hospice:

• National Hospice and Palliative Care Organization
• Hospice Foundation of America 

Physician order(s) for life-sustaining treatment (POLST)

POLST medical orders are for a person who is nearing the end of life. These orders may also be referred to by other names, such as "medical order(s) for life-sustaining treatment (MOLST)," and they can differ by state. 

A POLST form is completed by the doctor with input from the patient or the patient’s healthcare agent. It specifies treatment(s)/intervention(s) the patient wants to receive during a medical emergency. Pain management and comfort care will always be provided. Your loved one may choose to decline other medical interventions. These preferences may have been outlined earlier in your loved one’s advance directive. (Ideally, everyone will have an advance directive. A POLST form is only created for those who are nearing the end of life and is signed by the doctor.)

Other orders used in end-of-life care include “do not resuscitate (DNR)” and “allow natural death (AND)” orders, which tell healthcare professionals to not attempt CPR. These may be separate orders or included on a POLST form. Ask the hospice or healthcare team for more information. 

Children facing end of life have specific needs and concerns to consider. It's important to approach them in a spirit of honesty. However, honesty doesn't mean overwhelming them with information and details that can be frightening. Honesty means honesty of feeling. Information needs to be screened and made appropriate for their needs.

What's Appropriate?

You can determine the appropriate amount of information to share by listening to their communication, both verbal and nonverbal. Children often don't know how to express their feelings with words. An example of this might be if a child seems confused, lonely, or isolated. Then it might be a time to provide reassurance and individually tailored age-appropriate information.

As children grow, they have an evolving awareness of death, tempered with individual variations. Children younger than 3 years old generally don't understand death as a fact, although they're sensitive to intense anxiety at separation from their caretaker. From age 3 to age 5 they understand the concept, but don't understand that death is final. They see death as accidental and reversible, and something that won't happen to them.

From age 6 onwards, there's a gradual awareness, to varying degrees, of the finality, inevitability and universality of death. This includes a dawning personal awareness of the possibility of their own death, but only as something in the very distant future.

By about age 10, most children realize that death is universal and permanent. Children often don't ask direct questions about death. Don't assume that an apparent lack of concern means that they don't have questions and anxieties about death. Sometimes children wait for adults to anticipate and deal with their concerns. Young children may also wish that someone will "go away," and if that person should die, they can feel that their wish caused the death. You should be sensitive to this possibility also.

Always gear your approach to any child to their personality, needs, and developmental level. Some children need to be asked regularly if they have questions or concerns they'd like to discuss. For some children, you may need to offer only facts and information appropriate to their apparent needs. Use the child's language, and always let them know that all feelings are acceptable — even tears, sadness, and anger. Some children need to know that silence is also acceptable. These children might prefer to express their feelings with play or toys.

The most important feature of your communication with a child about end of life is to tailor and temper the information and approach them as an individual. Remember that the feelings and attitudes conveyed in your approach are even more crucial than the content of your words.

Preparing a Child for Death

Preparing a child for death is possibly one of the most difficult tasks a parent and family will ever face. Conveying to the child that they won't be alone as they near the end and that parental support and love will continue even afterward can be most helpful to a dying child. A child also needs to know that death will not hurt, because if there's any pain the doctors will treat it and that after death, there will be no more pain.

Children, just like adults, need to know their life has purpose and meaning. Letting them know the effect their short life had on others is important to them. And finally, children may also need to say goodbye. Watch their communication. They may want to decide who can have their toys, dolls, trucks, and books.

Most parents report that making funeral plans and other arrangements ahead of time can be helpful and greatly reduce the stress they feel at the time of their child's death.

Resources and Referrals

For more information about children and hospice, contact the Children's Hospice International at (800) 242-4453.

LLS Information Specialists are always here to help you with information and referrals as you meet the challenges of end-of-life.

Despite the intense roller-coaster of emotions experienced by many bereaved people, most grief is a normal, albeit painful reaction to the loss of a loved one. Each individual expresses grief in their own way. Although grief is not time bound, the intensity of normal grief does heal over time as the bereaved adjusts to the loss.

Stages of Grief

Grief can affect people emotionally, physically, cognitively, and behaviorally. Everybody experiences these aspects of grief in their own way:

• Emotional: Sadness, anger, guilt, self-reproach, anxiety, loneliness, fatigue, helplessness, shock, yearning, emancipation, relief, numbness
• Physical: Hollowness of the stomach, tightness of the chest, tightness of the throat, oversensitivity to noise, sense of depersonalization, breathlessness and shortness of breath, weakness of the muscles, lack of energy, dry mouth
• Cognitive: Disbelief, confusion, preoccupation, sense of presence, hallucinations, lack of focus
• Behavioral: Sleep disturbances, appetite disturbances, absent-mindedness, social withdrawal, dreams of the deceased, searching and calling out, sighing, restless over activity, crying, visiting places or carrying objects, treasuring objects

Many people express grief in a more visual way, such as crying, lack of energy, or trouble sleeping. Others, on the surface, may not seem to be grieving. Instead, they process grief internally. For these people, their grief may go unrecognized and unacknowledged. Be aware that grief is personal and specific to the person. Try not to make judgments about how you or others process the loss of your loved one. The manner and timing that you approach and work through grief depends on you as an individual.

On occasion, a person may become stuck at some point in the journey, and grief becomes complicated. Seeking the services of a grief counselor may be helpful. 

Blood Cancer United Community

Join the Grief and Loss of a Loved One group on Blood Cancer United Community. This group is for individuals who would like to discuss any aspect of the grieving process, at any point in the cancer journey and share feelings about loss, identity transitions, and relationship changes. If you are not already a member, you will need to create an account.

Children and Grief

Although children are not able to fully comprehend death until they're about 10 years old, they are nevertheless capable of experiencing grief from a very young age once they're able to sense separation from caregivers. Children's grief is different than that of adults and depends on their developmental level. Children's grief may also be cyclical: Children will grieve within the confines of their developmental stage and then re-grieve the same loss again when they're more developmentally advanced.

Over time, the ups and downs of grief will become less intense as the wounds of loss heal. What remains is often not an ending but a new beginning, as new and different but continuing bonds with a loved one are established, and personal growth and transformation are discovered.

A funeral or memorial service can help you cope after the loss of a loved one. In the early days of grief, navigating the practical issues that arise after death may feel overwhelming. Your loved one may have left instructions for you, or the decisions may be up to you or another family member. Many people may not be aware of the cost of funeral planning or the options available to families. Even if you do not plan to hold a traditional funeral, certain decisions still need to be made.

Early Funeral Planning (Before Death)

Ideally, funeral planning would happen before a person passes away. The benefits of early planning include:

• The person can be involved in the planning and decision making
• The person can provide information on any insurance policies that may cover funeral expenses
• The family can find comfort in knowing that their loved one’s wishes are followed
• The family can focus on grieving and remembering their loved one after they pass away

Funeral planning can be part of estate planning. See Triage Cancer’s Quick Guide to Estate Planning. 

Who Decides What Happens after Death?

“Laws for Body Disposition,” laws that determine who decides what happens to a body after death, vary by state and include:

• Personal preference laws: In about half of states, there are laws for survivors to honor the written wishes of the deceased unless the wishes are highly impractical, illegal, or financially burdensome.
• Designated agent: In some states, you may also be able to appoint a person to make these decisions. (Typically, power of attorney ends at death and would not cover the right to make burial/cremation decisions.) If no person is appointed for body disposition, responsibility goes to next of kin (spouse, adult children, parents, brother/sisters).

Funeral Consumers Alliance provides information on laws by state.

Choosing a Funeral Director/Funeral Home

Find a funeral director you trust:

• Shop around to find one who can help you meet your needs and budget
• The Funeralocity website allows you to search and compare prices of funeral homes by city and zip code
• The Federal Trade Commission provides a funeral pricing checklist. 

If funeral arrangements have not already been made AND if the person passes away in a hospital setting:

• Ask the hospital if the body can be held in the hospital’s morgue for a day or two
• This may not always be possible, but it can give the family more time to make arrangements
• If the family sends the body to a funeral home immediately, they may be “stuck” with the funeral home or begin building up storage fees or other costs

Avoiding Unexpected Expenses

Know the cost of every aspect of the funeral. You do not want to be surprised by unexpected costs.

• Funerals typically have to be paid for in advance
• Some funeral homes offer third-party financing
• Ask for a written itemized statement before you pay 

Low-Cost Options at Traditional Funeral Homes

Always ask for price lists and always ask if there is a cheaper option, even if one isn’t presented at first. 

Direct cremation is almost always the least expensive option at funeral homes.

• Always ask what isn’t included in a charge. Even with direct cremation, there will likely be additional charges (for example, cremation permit, urn, etc.).
• Funeral providers who offer direct cremations must also provide an alternative container option (essentially a cardboard casket) that can be used in place of a traditional casket.
• Urns or other storage for cremated remains can often be cheaper if they are purchased through a third party.
• An urn is also not specifically required. You can use anything—vase, bottles, or other containers.
• Cremated remains for an adult weigh 4–6 lbs. on average. This will fill a container that is about 200 cubic inches—a little less than a gallon jug.

Direct burial is another option that is less expensive than a traditional, full-service funeral:

• The body is buried shortly after death with no viewing or visitation, so embalming is not necessary
• A memorial service may be held graveside or later, but this may come with additional costs
• Caskets are available for purchase through a third party, but remember to account for shipping and/or transportation costs
• Grave markers can also be purchased through a third party, but check if the cemetery has any restrictions

Note: Even if a family chooses a direct burial or a direct cremation, the family can still hold a memorial service or celebration of life at home (or other less expensive location) to honor their loved one and share fond memories.

Embalming

Embalming is NOT required except in some states, when:

• A body crosses state lines from Alabama and Alaska; or
• A body leaves California, Idaho, Kansas, Minnesota, or New Jersey by common carrier (airplane or train) 

Note: The above information could change. For up-to-date information, Visit funerals.org.

A funeral home may insist on embalming if an open casket viewing or funeral is planned. Embalming does not preserve a body forever. 

What Is the Average Costs of a Funeral?

The following are average funeral and burial costs in the U.S. in 2023 compiled by Funeralocity. These amounts may not include additional costs such as flowers, musicians, obituary notices, or cemetery fees.

Home Funerals and Home Burials

Home funerals are legal in every state.

• Some states may require that a funeral director is involved in some way
• It is legal for a family to keep or bring a loved one home after death for bathing, dressing, private viewing, and ceremonies 

Most states allow home burials on private property outside city limits.

• Each city/state has its own laws and restrictions for home burials
• Some states require that a funeral director is hired to assist with a home burial
• Home burials are illegal in California, Indiana, and Washington

For more, visit National Home Funeral Alliance: State Requirements for Home Funerals. 

Donating a Body for Education and/or Research

Programs that accept bodies donated for education and/or research are called Whole-Body Donation Programs or Non-transplant Anatomical Donation Organizations (NADOs).

• The body will be cremated when complete, and the remains returned to the family at no cost to the family
• It can take two to three months (or longer) for the remains to be returned. Check with the specific program for more details.
• Some programs also cover the cost of death certificates and a nice urn.
• Whole-body donation is different from being an organ donor for transplant purposes. A person can be an organ donor without making a whole-body donation.
• Cancer does not typically disqualify a person for whole-body donation. Some communicable diseases, such as HIV and hepatitis, can disqualify a person from whole-body donation.
• A donation may be made directly to a hospital or through a nonprofit service.
• Different programs have different requirements. The prospective donor may be required to sign a consent form before death. In other cases, the next of kin or person with legal rights may be able to consent to the donation.

The following resources may help you in your search:

• American Association of Tissue Banks (You can search for accredited programs)
• Anatomy Gifts Registry (Charges a shipping fee for return of ashes)
• MedCure
• United Tissue Network 

Note: Even if a family chooses whole-body donation, the family can still hold a memorial service or celebration of life to honor their loved one and share fond memories.

Veterans

All veterans are entitled to burial at a national cemetery at no charge. This includes plot, opening and closing of grave, and marker. This does not include funeral services or transportation to the cemetery.

Visit the VA Veteran Benefits website to learn more.

Financial Assistance

• Social Security death benefits provides a one-time, lump-sum death payment of $255 to the eligible surviving spouse or child. A funeral director can usually assist in making the claim.
• Check government assistance for a funeral by state.
• You may also consider asking family and friends to make contributions to the funeral costs.
• Some life insurance policies or supplemental policies help cover funeral expenses.
• Local churches or religious organizations may have funds set aside to cover funeral costs for low-income families.

Financial Assistance after the Death of a Child

• Children’s Burial Assistance
• Final Farewell

More Resources for Funeral Planning

• LLS’s Palliative Care, Hospice, and End-of-Life Resources List
• Federal Trade Commission: Shopping for Funeral Services
• Funeral Consumers Alliance
• National Funeral Directors Association
• Remembering a Life (from the National Funeral Directors Association)