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T erminal Illness

Many illnesses can be cured or controlled while others are not curable and are considered to be “terminal”. The timeframe from diagnosis to death can Be from a few days to a few years. It is hard to predict a more precise time because individuals react differently. Those who have hope and the will to live will usually outlive those who have minimal or no hope at all. Attitude has a definite influence on a terminal person:s longevity. Things that might influence a person:s attitude towards death are experience, culture, religion and age. Generally, the elderly don:t have as much fear of death as their younger counterparts do. They are more resigned to the fact that death will occur largely by virtue of having had more exposure to death and dying. Many have lost family members and friends. Some welcome death as freedom from pain, suffering, and disability. What they often fear, however, is dying alone. This section will help the Home Care Assistant understand the complexities of the dying process and the role Home Care Assistants play when working with the terminally ill.

T he Positive Side of T erminal Illness The old adage “every cloud has a silver lining” can also Be applied to terminal illness Because, in addition to the problems, there can be opportunities to take advantage of. e.g.: Reconciliation with Self As individuals look back on and evaluate their lives, they face the pain and mistakes which, in turn, helps them to understand the totality of life. This reconciliation helps them to realize and accept that this was life. Reconciliation with O thers Relationships long characterized by contention may be restored. While factors may not be agreed upon by those involved, the important thing is that there is forgiveness on both sides. It does not necessarily mean that a perfect relationship will develop but there will be some peace acquired.


T he Process of Dying There are five stages in the dying process: Denial Anger Bargaining Depression Acceptance Denial is the first stage in which dying individuals refuse to believe they are dying. Even when a physician informs them that nothing can be done, they still feel a mistake has been made. This information can give them time to:  prepare;  take care of business;  close doors; and,  make amends. The shock begins to ebb as they face reality. A nger is the second stage in which individuals feel anger and rage. Suddenly they are not in control of their lives or death. There are no options O they are going to die. Feelings of helplessness develop, then guilt surfaces. They also experience envy towards those who are healthy. The anger is directed at everyone and no one in particular. Bargaining is the third stage in which dying individuals are now willing to compromise. They are willing to do or not do specific things in exchange for more time, which can be based on an upcoming event or on the belief that their families are dependent on them. Bargaining is usually done privately and on a spiritual level. Depression is the fourth stage in which dying individuals realize that death is inevitable. They are aware, angry and filled with sorrow. There is mourning over things that were lost and things that will be lost without a future. This is a normal part of the process of preparing to die. Acceptance is the fifth stage in which dying individuals have worked though the numerous conflicts and feelings that death brings. They succumb to the inevitable, as they grow more tired and weak. They become less emotional and are calm and at peace. They realize the battle is almost over and it's really alright to die. Reaching the acceptance stage does not mean that death is near. Dying individuals do not always go through all five stages. Some may never go beyond a certain stage; others may bounce back and forth from stage to stage. Some stay in one stage until death.


T4e 7ying 5erson0s Cig4$s Dying people have the right to: keep their individuality; be treated as live human beings; convey their feelings about death and pain; be involved in all decisions about their care; be optimistic; be cared for by optimistic people; be cared for by compassionate, sensitive and well-informed people; expect continuing medical care, regardless of the prognosis; have all questions answered truthfully and completely; seek spirituality; be free from physical pain; understand the stages and process of dying; die; die in peace and dignity; not die alone; and, expect that the sanctity of the body will be respected after death.

T hings A Person Should Consider W hen F acing A T erminal Illness Terminally ill people have the right to make choices and decisions about the types and extent of medical care they want to accept or refuse. Therefore, it is wise for them to discuss certain issues with their families while they are still able to do so. That way there is no doubt about their preferences and wishes. Some of these issues include: living will; durable power of attorney; “do not resuscitate” ordersC hospice care; and, funeral and disposal of remains. While these issues are primarily between the dying person and the family, Home Care Assistants need to Be informed of the eListence of any “Do Not Resuscitate” orders. If such an order is in place, Home Care Assistants would not provide emergency care such as Cardio Pulmonary Resuscitation (CPR). A cursory overview of these issues is provided in order that Home Care Assistants have a basic understanding of what they mean.


L iving W ills Some people, whether they are terminally ill or not, choose not to be resuscitated in the event of death. Individuals have every right to refuse treatment. To ensure that their wishes are respected, written instructions, known as a living will, are drawn up. A living will states that the person does not want life prolonged by extraordinary means, if there is no reasonable expectation of recovery. Most states allow living wills but their laws may vary. E.g. Some require the person to be at least 18 years of age and require that new living wills be made up every 5 to 7 years. In addition to having a living will drawn up, physicians and families should know the individual:s wishes.

Durable Power of A ttorney Hith a duraBle power of attorney, the “power� to make decisions on health care is given to another person (usually a family member, friend or lawyer). When the individual is not able to make decisions about his/her own health care, then the person with the durable power of attorney has the legal right to make the decisions on their behalf.

Do Not Resuscitate (D N R) O rders Hhen death is sudden and uneLpected, every effort is made to save the individual:s life By giving cardiopulmonary resuscitation (CPR). Some people with a terminal illness do not want to be resuscitated and therefore have their physician write a DNR order. This allows the individual to die with peace and dignity. If the individual is not mentally capable of making that decision, his/her family can do so on his/her behalf.

Hospice C are Hospice care is an organized program for delivering palliative care. Palliative care is designed to serve patients throughout their illness particularly, although not exclusively, in acute care hospitals and in ambulatory outpatient settings. Note: An ambulatory outpatient is someone who is not admitted to hospital but goes to the hospital for treatments. Hospice has been referred to as the "gold standard" of palliative care in the United States. Hospice programs in the US focus on caring for the terminally ill in their own homes. However, a growing number of hospice organizations provide palliative care services earlier in the course of illness through a variety of mechanisms.


Hospice focuses on the physical, emotional, social and spiritual needs of people who are dying and their families. It concentrates on pain relief and comfort, as opposed to curative or life saving procedures. Its goal is to improve the dying person:s quality of life. Many dying people and their families seek hospice care when faced with terminal illness. A hospice may be a part of the health care facility or it may be a separate facility. Some hospices also offer home care. Hospice services also include support groups and follow-up care for survivors.

F uneral and Disposal of Remains When people are diagnosed with a terminal illness, they should think about what they want done after death in terms of funeral arrangements and disposal of their remains. While some people are organized and have already given the topic some thought, others have refused to look at the fact that one day they will die. It makes it much easier on the families, if dying individuals have made their wishes known. Some people do not want a service, some are against cremation, some do not want their ashes buried O there are several variables. It can be very stressful for all concerned if the dying person has not relayed his/her preferences.

Needs of People W ho H ave A Terminal Illness Basically, people who are dying have the same physical, emotional, and spiritual needs as everyone else. In addition, they have concerns about pain and distress, losing control over their bodies and worries about being deserted. What they need most of all is to be cared about, not just cared for. Caring for terminally ill people can be very challenging, as dying people have a lot on their plate to deal with -- the physical effects of the disease, medication, plus psychological and social challenges. The job of the Home Care Assistant is to involve the person with a terminal illness (as much as possible) in making decisions and developing plans. How Home C are Assistants C an H elp C lients W ith A T erminal Illness help them to accept that they have a terminal illness. Ii.e. If they pretend that they don:t have the illness, it s important to ensure they are benefiting from this action and are not doing anything that may be harmful such as not taking their medication.) create an environment that encourages and supports sharing feelings. (i.e. Discuss topics in a calm location, which is favorable for conversations to take place. Let them know you are available and leaving the timing up to them.) understanding that men and women communicate in different ways and allow for those differences. (i.e. Women express their feelings more readily than men do.) 58

being realistic and flexible about what you hope to agree on or communicate. ( i.e. Let them talk aBout whatever they want to and with whomever they want. If they don:t want to tell the whole story, that is okay, providing they are telling somebody.) helping them to deal with anxiety and depression. There will be times when Home Care Assistants and terminally ill people disagree. The following suggestions may be helpful in these situations: explain your needs openly; choose your battles carefully; let the dying person make as many decisions as possible; support the dying person:s spiritual concernsC and, help to resolve their unfinished business. There are four main areas of care for those who are coping with dying: physical; psychological; social; and, spiritual.

Physical Needs of People W ho H ave a T erminal Illness The process of dying may take only a few minutes or it many take several weeks. Generally, there is a gradual slowing down of body functions, the body becomes weaker and the level of consciousness decreases. The person is given as much independence as possible. As the person weakens, Home Care Assistants can help to meet basic needs, which will promote physical and psychological comfort. While dying people may totally depend on others for their basic needs and for activities of daily living, it is important to give them as much as independence as possible and enable them to die in peace and dignity. The table on the next page illustrates the physical needs that dying people have and gives suggestions how the Home Care Assistant can help to meet these needs.


F unction

Physical Environment

Body Comfort

Body Positioning







Body Reaction

C are Required

maintain pleasant environment to promote calmness & peace

adequate ventilation even, comfortable temperature well lit pleasant unnecessary equipment removed

body may become uncomfortable for a variety of reasons

oral hygiene good skin care back massages personal hygiene

person may become uncomfortable if not repositioned regularly

ensure good body alignment turn regularly use pillows & other support measures

becomes difficult may be hard to understand sometimes the person is not able to speak

don:t ask questions that require long answers ask questions which can be answered by “yes” or “no” continue to talk to the person, even if he/she is unable to speak

mucous can collect in the mouth person may have trouble swallowing

good oral hygiene is usually sufficient if the person is able to eat when not able to good oral hygiene should be given frequently

crusting & irritation of the nostrils usually caused by secretions, oxygen or nasal tubing vision blurs & gradually fails may be afraid of the dark eyes may be half opened secretions may collect in the corners of the eyes person turns toward the light

cleaning of the tubing lubricant on nose irritation explain what is being done keep the room lit but avoid bright lights & glare wipe eyes from inside to outside. If eyes don:t close, it may Be necessary to apply an ointment & moistened pads. (Note: Home Care Assistants do not apply the ointment.)

hearing is one of the last functions to go, often at the moment of death even if unconscious, the person may hear

always assume that the dying person can hear, even if unconscious speak in a normal voice provide reassurance about the care offer comforting words avoid topics that could be upsetting

body temperature rises circulation slows down perspiration increases skin feels cool & is pale

give god skin care ensure regular bathing prevent pressure sores change linen and clothing frequently use light covers as blankets increase warmth & increase restlessness


F unction

Body Reaction

C are Required

person is often incontinent of urine & feces Elimination

Doctors may order enemas & indwelling (left in continuously) catheters. If so, enemas may need to be given and catheter care provided. (Note: Home Care Assistants do not insert or remove catheters, they only clean them & ensure there are no kinks in the tubing to block flow of urine.)

Psychological Needs of People W ho H ave a Terminal Illness People who are dying have negative feelings such as anger, sadness, anxiety and fear. It is important that Home Care Assistants take these emotions seriously, that they not ignore them and that they be aware of them. Such feelings need to be identified, recognized, and communicated. How Home C are Assistants C an H elp Dying People M eet T heir Psychological Needs

being physically present; being honest; listening actively; gently touching the dying person, holding their hand or hugging them; and, practicing effective communications by: o allowing the dying person to express feelings, worries and concerns; o not being concerned about saying the wrong thing; o not being concerned about finding the right words; o not feeling obligated to talk at all -- silence is okay and effective.

Social Needs of People W ho H ave a T erminal Illness People who are dying still have a need to remain connected to certain people in their lives such as family and friends. They have concerns about their positions in the family unit and in the community. Common worries they share are who will care for and support their survivors and what will happen to their belongings. Dying people are very individualistic in their preferences regarding socialization. Some may want friends and family around, others prefer to be left alone. Some may want to spare their families unnecessary strife and, therefore, will only express their thoughts and feelings to a “third party� such as a caregivers. It is quite understandable that many caregivers find these situation to be uncomfortable, primarily because


they do not know what to do or what to say. There is no “one size fits all”, which can apply to these situations. How Home C are Assistants C an H elp Dying People M eet T heir Socialization Needs

HCAs can assist by: allowing them to talk about their concerns; allowing them to think about their options; allowing them to suggest how their needs might be met; being an advocate for them; not taking over their work; and, Being present and serving as a “sounding Board”.

Spiritual Needs of People W ho H ave a T erminal Illness Terminal illness can cause many people to question their faith and religion. In the wake of physical pain and loss of hope they wonder what the point is. In the chains of loneliness and loss of relationships, they wonder if God has deserted them. They think about the errors of their ways and their inadequacies, which causes them to feel helpless but, ultimately, they do face their mortality. Some common issues dying people might ponder over are: Has my life made a difference? What is the meaning of life? Have I accomplished my goals? What will happen to me after death? Dying persons often bring up spiritual issues. (Spirituality is concerned with or affecting the spirit or soul.) They may ask questions out loud but are not really looking for answers. Instead they are expressing what they are thinking about and are trying to determine the answers to their own questions. Some dying people put a lot of emphasis on their spiritual needs. They may wish to see a priest, rabbi, or minister and/or they may want to participate in religious practices. They may wish to have religious objects handy (e.g. bible, rosary, statues). Privacy is provided during spiritual moments. Courtesy is given to the clergy.


How Home C are Assistants C an H elp T he T erminally Ill H andle T heir Spiritual Needs be present; be empathic; listening; reaffirming that their lives have been meaningful and continue to be meaningful to others; providing creative opportunities (e.g. in music, literature, and other arts); and, allowing privacy during spiritual moments.

. C hallenges that People W ith a Terminal Illness F ace Few people find being ill to be an easy task and this is especially true for the terminally ill. The illness brings new and frightening trials. Problems that were once in the forefront now take a back seat and problems that were in the back seat can come to the forefront. The primary issues or problems experienced during terminal illness are: grief; loneliness; anxiety; depression; anger; and, spiritual distress. G rief Issues that People W ith a T erminal Illness F ace The most common response to terminal illness is grief. It is a normal and expected reaction to the losses that will occur. e.g.: loss of independence; loss of control; loss of physical health; loss of security; loss of fantasy that they will live forever; loss of loved ones; and, loss of a contented role in life. There are classic physical and emotional reactions that occur when terminally ill: Physical reactions: o changes in appetite; 63

o o o o

changes in sleep patterns; shortness of breath; changes in digestive system; and, fatigue.

Emotional reactions: o shock; o denial; o sadness; o anger; o guilt; Loss of emotional feelings; and, Isolation due to difficulty relating to others. The grieving process has three main stages: being stunned and trying to avoid the pain; being imbalanced during which physical and emotional reactions are apparent; and, becoming adjusted.

How Home C are Assistants C an H elp T he T erminally Ill Cope W ith G rief

HCAs can assist by: understanding that grief is predictable and normal; recognizing & expressing the losses that are part of terminal illness; exploring the losses and their meanings; encouraging them to resolve disagreements and relationships; realizing that some conflict and relationships cannot be resolved; and, determining what is possible for the future.

Loneliness Issues that People W ith a T erminal Illness F ace

Loneliness seems to go hand in hand with terminal illness. Sometimes it can be physical when there are few people around. Other times, it can be emotional, when people present are


unwilling to hear or to help dying individuals express their feelings. Since many people fear dying alone, it is beneficial for them to see and hear others around.

How Home C are Assistants C an H elp T he T erminally Ill Cope W ith Loneliness HCAs can assist by: just being there; listening with their hearts and souls as well as their minds; being receptive to their flaws and deficiencies without being judgmental; being consistent with their presence and care; accepting that sometime people will feel lonely, regardless of who is present; remembering that there is more than what can be seen with the naked eye (i.e. For some, the presence of loved ones who have passed over can be more helpful than the presence of any earthly being.)

A nxiety Issues that People W ith a Terminal Illness F ace Anxiety is the most common form of psychological distress in people who have a terminal illness. It manifests itself as: dismay; fright; apprehension; grumpiness; changes in appetite and eating habits; shortness of breath; and, craving alcohol or drugs. Anxiety can be related to: the stress and/or treatment of the disease; poorly managed symptoms; the disease processes; side effects of drugs; and, other outside causes.


How Home C are Assistants C an H elp T he T erminally Ill Cope W ith A nxiety HCAs can assist by: responding to physical symptoms; increasing their/their families control & involvement in decision making & care; understanding the illness, treatment and routines; exploring anxious feelings & underlying issues; providing medications regularly & as-needed. (Note: Home Care Assistants do not administer medications but should refer the task to somebody who can.)

Depression Issues that People W ith a T erminal Illness F ace Depression is a profound sadness, which may include feelings of helplessness, worthlessness, and suicide. It often is unresponsive to supportive interventions. In terminal illness the risk of depression increases when physical symptoms are not managed effectively. Most people with terminal illness have thoughts of suicide. Factors that increase the risk of attempting suicide are: advanced illness; pain; disorientation; exhaustion; fatigue; alcoholism; little social support; history of depression; history of other psychological problems; history of attempted suicides; unresolved grief; and, being a male. When Home Care Assistants suspect that terminally ill clients are considering suicide, they should ask them directly if they are thinking about committing suicide (or killing themselves). This often brings relief to them because they usually have mixed feelings about suicide. By being able to talk about their thoughts, often the problem causing the idea can become manageable. If the suicidal person admits that he/she is considering suicide, then help should be sought (e.g. physician, suicidal & crisis hotlines).


How Home C are Assistants C an H elp T he T erminally Ill Cope W ith Depression

HCAs can assist by: advising professionals such as physicians and therapists; ensuring they take prescribed medications as directed (Note: Home Care Assistants do not administer medications but can ensure they have been taken.) managing physical symptoms; maintaining hygiene, diet and other activities of daily living; allowing expressions of sadness, guilt, anger and other negative feelings; being alert for and acting on signs of suicidal thoughts; and, ensuring goals are reasonable.

A nger Issues that People W ith a T erminal Illness F ace Because anger is a reaction to fear, threat or anxiety, it is quite prominent during terminal illness. It is often directed at family, caregivers and God. It can be displayed through aggressive behavior, fault finding or depression. When anger is consistent, it will drive others away, resulting in isolation problems, which leads to more fear and anxiety. Anger has an important function in that it expresses and alleviates anxiety and fear. A good way to deal with anger is to address the underlying issues, which could be actions or other emotions. The angry person should be permitted to express feeling of anger and to relay what the root of the anger is. How Home C are Assistants C an H elp T he T erminally Ill Cope W ith A nger

HCAs can assist by: being aware of the nature and function of anger; recognizing that some anger is unavoidable in terminal illness; determining what the underlying emotions or problems behind anger are (e.g. helplessness, fear & lack of control); dealing with the underlying emotions & problems; and, knowing their own responses to anger.


Dealing W ith T he F amily of T erminally Ill People The families of terminally ill people have a tough road to walk. Because the reality can be hard and devastating, it may be very difficult to comfort them. In their grief the family goes through stages like the dying person goes through. It is important that Home Care Assistants know this and that they not take anything said or done personally, especially when anger is at the forefront. How Home C are Assistants C an H elp T he F amilies O f T he T erminally Ill

HCAs can assist by: understanding what they are going through; treating them with courtesy & respect; showing feelings to them by being available and considerate; using touch to show concern; respecting their right to privacy; allowing them to participate in the care of their dying family member; and, being supportive.

Signs that Death is Near When working with the terminally ill, Home Care Assistants should be familiar with the signs of approaching death, which can have a rapid onset or develop gradually: As the body dies, the following may be noted: Sensation, Muscle Tone & Movement


Body Temperature

Respiratory System

sensation, muscle tone & movement disappear starts in the feet and legs and then spreads to the rest of the body jaw drops as the muscles of the mouth relax mouth may stay open face has a peaceful expression peristalsis slows down or quits (Peristalsis is a series of contractions that move food through the digestive tract.) incontinence occurs stool may bind up nausea vomiting temperature increases as circulation slows down person feels cool or cold person looks pale person perspires heavily pulse is fast, weak & irregular blood pressure drops respirations gradually increase in rate and depth and then become shallow and slow mucous collects in the respiratory tract, which causes the “death rattle� to Be heard


Pain Signs of Death

pain decreases as the person loses consciousness some individuals remain conscious until the moment of death no pulse no respirations no blood pressure pupils of eye are fixed and dilated


Many illnesses can be cured or controlled while others are not curable and are considered to be “terminal�. The timeframe from diagnosis to death takes from a few days to a few years. It is hard to predict a more precise time because individuals react differently. There are five stages in the dying process but not everyone goes through all the stages or goes through them in any particular order. Dying people are entitled to certain rights, which assure quality care and being treated as human beings. They have defined physical, psychological, social and spiritual needs that must be met. In addition, they have concerns about pain and distress, losing control over their bodies and worries about being abandoned. What they need most is to be cared about, not just cared for. Caring for the terminally ill can be very challenging. The job of Home Care Assistants is to involve them as much as possible in making decisions and developing plans, being an effective listener and ensuring their needs are addressed. It is important that Home Care Assistants realize that terminal illness is still life. While it may be short, it is the only life left. Terminal illness also has a positive side in that dying people can seek reconciliation with themselves and with others. It is a normal phase of the life process.


Caring for Terminally Ill Seniors  
Caring for Terminally Ill Seniors  

Collegiate Caregivers University Section 6