End-of-Life
The terminal phase of an illness can create unimagined challenges and concerns for you, your loved one and your family. The following description of emotional, physical, spiritual, financial and legal issues inherent in end-of-life care, as well as the special needs of children at this time, can be instrumental in helping you to meet these end-of-life challenges and concerns and transform them into growth-engendering opportunities.

Emotional
Physical
Spiritual
Legal
Financial
Hospice
Children and End-of-Life

Emotional
The Patient: You might find your loved one experiencing a range of emotions which might include sadness, guilt, fear, anxiety, loneliness, grief, withdrawal and disengagement. They can be stubborn and resistant, but oftentimes patients do this to maintain a sense of control. Some people welcome death, some fade slowly and some fight death intensely till the very end. We are all individuals, and it is important to remember that your family member will die in his or her own way also. There is no "right" way to die, and it is important to remember this.

The Family/Caregivers: You and other family members may be feeling anger, guilt, anxiety, sadness, difficulty in focusing and concentration, meaninglessness, fear, resentment, and a sense of loss of hopes, independence, and/or security. It is important to remember your individuality also, and to know that all feelings are acceptable, even negative ones, and to not be harsh and judgmental with yourself. Many caregivers are confused by the withdrawal and disengagement mentioned above that is exhibited by dying individuals. It is important to understand this as a part of the dying process.

What can help?
Honest communication is of utmost importance. However, communication is a two way street. Listen to your loved one and other family members, but do not neglect to also communicate your own needs. Communication is not only verbal, but also non-verbal. You can be saying one thing verbally and conveying something else by your body position and facial expressions. Try to remain open. Avoid making statements like, "You shouldn't feel guilty", but instead say, "Help me to understand what is making you feel that way". This keeps the dialogue and communication going. The first response does not promote open conversation and can be stifling.

Another point to be aware of is that we all have differing needs for information. Studies show that most patients want to know if they are terminal. It is important, however, to take the lead of the patient in this. Look for signs of what they want to discuss and when they want to discuss it. Protecting them by not telling them about their condition can greatly increase a sense of isolation, which will in turn increase other feelings like depression and loneliness.

If you are a non-immediate family member or friend, you may be feeling that you do not know what to say or do. Oftentimes, this can be interpreted by the patient and family as being neglected or deserted. The best thing to do is to take a chance. Offer to help out with specific suggestions. "Can I food shop for you this week?" or "Can I come and read to ____, so that you can get out to the hairdresser?" are possibilities. If met with a refusal, then say "What, then, can I do for you?" If you are with the patient let him or her take the lead with conversation. They might be desirous of normal conversation this day, or they might want to discuss more serious matters. Listen for their cues.

As caregivers, try to allow your loved one as much autonomy as possible within the constraints of the illness. Let them make choices and treat them as you always did. Just because they are ill, does not mean that they are no longer your parent or spouse. Maintain grooming. Whenever possible, let them get dressed and made up. This can enhance self-esteem. Touch is another form of communication. A touch on the cheek or shoulder is another powerful way to say, "I love you".

The following very helpful suggestions from the Hospice Foundation of America are taken directly from the experience of terminal patients:

• Be honest with me. I can tell when your feelings or actions are insincere.
• Laugh with me; cry with me. Allow me to express intense emotions.
• Don't feel sorry for me. Your understanding helps preserve my dignity and pride.
• Touch me. I want to be accepted despite the way I may look. Inside, I'm still the same person you always knew.
• Let me talk about my illness if want to. Talking helps me work through my feelings.
• Let me be silent if I want to. Sometimes I don't have much energy and I just may want your silent companionship. Your presence alone can be comforting.
• Space your visits and calls. Consistent support is very helpful. ? Offer to baby-sit. The children need a break from my illness, and private times with my spouse are treasured.
• Support my family. I may be very sick, but they too are suffering. Let them express their grief.
• Offer to help me with the simple chores. Routine jobs are often difficult to accomplish.
• Continue to be my friend. Don't let my illness overshadow all the good times we've shared together. I know this is hard for you too.

Lastly, always maintain hope. Throughout the course of an illness, hope can take many forms. It can be hope for a cure, hope for quality of life, hope for a good death or hope for an existence beyond the grave.

In other words, hope should never cease.

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Physical
As your loved one nears the end of his or her life, you may notice changes in sleeping, eating and breathing as body systems begin to slow down. The patient may take in minimal food and liquid, which will progress to the point that all they desire is to keep their lips and mouth moist. Sleep may also increase to the point where he or she will become comatose. Breathing may become more irregular, perhaps even with short periods of apnea. Congestion and a rattling may become apparent because of the inability to cough up saliva and secretions. Hearing and vision will decrease. It is also not unusual for a dying person to have visions, especially of others that are already deceased. It is best not to correct them, but to offer support by asking them to share more about what they see and what the person in the vision is saying to them. It is also important to inform your healthcare team about any of the above changes, so that they can confirm that these changes are, in fact, due to end-of-life.

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Spiritual
End-of-life often can cause your loved one and family to look inward and search for answers on spiritual matters such as the meaning of life, death, and being. Doka (1993) suggests that this quest can take the form of searching for the meaning of one's life, learning how to define dying appropriately for oneself, or searching for hope beyond the grave. Meaning in life is defined individually, and will somehow encompass affirming the value of one's life. Failure to do this will create despair and a feeling of having wasted one's life. To assist your family member in this task, ask him or her to talk about himself or herself and to review their life. Share old photos and create family trees and genograms. Share family stories. Talk about all of those whose lives his or her life has impacted. 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; and immortality through the donation of organs and body parts. However your loved one manifests their spirituality, it will undoubtedly reflect their individuality and uniqueness.

Funerals and ritual-Funerals and ritual are an important aspect of end-of life care also. Clicking on the following URL will link to a section of our Web site where one of our Guest Writers shares his views on the relevance of funerals and rituals. http://www.leukemia-lymphoma.org/all_page?item_id=6996

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Legal
Advance Directives: The Hospice Foundation of America defines an advance directive as oral and written instructions about future medical care in case a person is unable to speak for himself or herself. Each type of advance directive, as listed below, is regulated differently by state. For this reason, it may be advisable to consult with an attorney. Advance directives should ideally be in place before a person becomes ill, or before there is a crisis situation. However, if this is not the case, this may be one of the end-of-life issues that you are dealing with. It is important to pick a good time and place to begin this conversation. Let your ill relative set the pace of the conversation and use good listening skills. Expect initial resistance. It is not unusual, but whatever their wishes are, acknowledge and sustain them in that, even if you do not agree.

Living Wills: An advance directive that outlines a person's wishes about medical treatment should they be unable to communicate at the end-of-life. State law defines when it can go into effect, and may limit treatments to which the living will applies. A person always, though, has the right to refuse treatment.

Medical Power of Attorney: Sometimes called a health care proxy, or appointment of a health care agent, this directive allows a person to appoint someone they trust to make decisions about their medical care. In many states, the person appointed may speak for a patient at any time they are unable to make decisions, not just at the end of life.

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Financial
Studies have shown that the costs of end-of-life care can be considerable. It is important to know that financial stress is real, that financial issues are important, and that most families dealing with terminal illness experience them to different degrees. It is important to not feel guilty because these concerns exist. Although, no one resource exists to completely address a family's financial concerns, the Information Resource Center of the Society can provide information and referrals to assist you with these concerns. The number is (800) 955-4572.

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Hospice
A recent research study has found that most people care a great deal about the quality of the death experience, to the point that seventy-five percent of them would trade some amount of healthy life to improve the quality of end-of-life care. 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 to this care so that the best medical care, pain control, and emotional and spiritual support can be provided in a manner that is tailored to the individual needs of each patient and family. The hospice philosophy also embodies the belief that each and every person has the right to die with dignity and without pain, and that families should receive the help and support necessary to participate in this process.

Most hospice programs are home hospice programs which enable the patient to stay at home, however some hospices are freestanding hospice centers, or affiliated with hospitals or nursing homes. The interdisciplinary hospice team is usually comprised of hospice physicians, nurses, social workers, home health aides, volunteers and chaplains and other pastoral counselors. Some of the services provided include pain management, emotional and spiritual support, family coaching, provision of medications and medical supplies, and home health aide placement and supervision.

For more information or a referral to a local hospice, please speak with your physician or contact the National Hospice & Palliative Care Organization or the Hospice Foundation of America as follows:

National Hospice and Palliative Care Organization
(800) 658-8898 or www.nhpco.org

Hospice Foundation of America
(800) 854-3402 or www.hospicefoundation.org

Please click to link to our select reading list for pertinent literature on end-of-life. http://www.leukemia-lymphoma.org/all_page?item_id=6999

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Children and End-of-Life
Children facing end-of-life have specific needs and concerns to consider. It is important to approach them in a spirit of honesty. However, honesty does not 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. The way to determine this is also by listening to their communications, both verbal and non-verbal. Children often have feelings that they do not know how to express 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 do not understand death as a fact, although they are sensitive to intense anxiety at separation from their caretaker. From age 3 to age 5 they have an understanding of the concept, although they do not understand that death is final. They see it as accidental and reversible, and something that will not happen to them. From age 6 onwards, there is a gradual awareness, to varying degrees, of the finality, inevitability, and universality of death, with 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 do not ask direct questions about death. Because of this it is important to not assume that an apparent lack of concern means that they do not 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. It is important to be sensitive to this possibility also.

Always gear your approach to any individual child to his or her personality, needs and developmental level. Some children need to be asked regularly if they have questions or concerns that they would like to discuss. For some children, you may need to just present facts and information appropriate to their apparent needs. Use the child's language, and always communicate that all feelings are acceptable, even tears and sadness and anger. Some children need to know that silence and not talking are also acceptable. These children might prefer to express their feelings with play and toys.

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

Preparing a child for death is possibly one of the most difficult tasks for a parent and family to face. Conveying to the child that they will not be alone as they near the end, and that parental support and love will continue even afterwards can be most helpful to a dying child. A child also needs to know that death will not hurt, because if there is any pain the doctors will treat it and that after death, there will be no more pain. Children, just like adults, need to know that their life has purpose and meaning. Letting them know the impact that their short life had on others is important to them. And lastly, children may also need to say good-bye. Watch for their communications. They may want to decide who can have their toys, dolls, trucks and books.

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

The following URL links to information on Children and Funerals shared by an author in the Guest Writers section of our Web site: http://www.leukemia-lymphoma.org/all_page?item_id=6996

Resources and Referrals For more information on children and hospice, please contact the Children's Hospice International at (800) 242-4453 or www.chionline.org

Please click to link to the select reading list to access books relevant to Children and End-of-Life: http://www.leukemia-lymphoma.org/all_page?item_id=6999

The Information Resource Center of Leukemia & Lymphoma Society is always here to assist you with information and referrals as you meet the challenges of end-of life. If you need further guidance, we encourage you to call our toll-free number at (800) 955-4572 where an Information Specialist can learn more about your request and be better able to respond to your concerns. You can speak directly with an Information Specialist between the hours of 9am and 6pm EST. A live chat button is also available through the Web site (www.lls.org).