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The End of Life Process Each dying person and each of his or her family members may cope with the dying process in a different way. Past losses, educational level, spiritual beliefs, and the individual's philosophy may all affect how he or she reacts to the dying process. To die peacefully and to die knowing that life has had meaning are important to the dying person. The goal at the end of life is a healthy death, which is defined as a death that has positive benefits for the dying person and for his or her family and friends. We can assist individuals at the end of life and their families by providing compassionate care that incorporates the physiological, psychosocial, and spiritual considerations that are most relevant to the dying person and his or her family. By providing guidance and support, we can guide dying individuals through this final life transition. Loss, and the grief that often accompanies that loss, is a normal part of the human experience. A healthy response to loss is the goal. That healthy response, and the healing process, is only achieved when individuals give attention to, and achieve a balance between their physical, psychological, emotional, and spiritual needs. The Nature of Dying Dying individuals are usually the best qualified to help others understand what is best for them in this process. It is important for dying individuals to communicate their needs related to the place of their death, pain management concerns, the specific roles of health care providers during the dying process, the type and level of involvement of family members throughout the process, specific funeral arrangements required, and important rituals requested during the process. None of these is as important, however, as the care, trust, compassion, acceptance, and love that are provided and shared in the dying process. The nature of dying and the dying process include spiritual, psychological, social, and physical aspects common to both dying individuals and their families. Spiritual Aspects Most people have done little to prepare for their deaths. Some may be afraid of death and the possibility of pain during the dying process. Some deny their mortality. Others may not have a religious foundation that explains or prepares them for the hereafter. Still others may not have adequate coping skills to deal with the profound questions surrounding death and the dying experience. With the knowledge of impending death, individuals often seek to find or make sense out of their lives. Spirituality is an integral part of dying. It is usually a component of religion, but a person need not be religious to be a spiritual being. Spirituality has been defined as: · pertaining to one's inner resources, especially one's ultimate concern; the basic value around which all other values are focused; · the central philosophy of life-religious, non-religious or anti-religious-that guides conduct; and the supernatural and nonmaterial dimensions of human nature. · Religion is usually recognized as the practical expression of spirituality: the organization, rituals, and practice of one's beliefs. Religion is a personal way of expressing spirituality through affiliations, rites, and rituals. While religion includes specific beliefs and practices, spirituality is much broader. Spirituality is about

existence, about the individual's relationship with him- or herself, with others, and with the universe. Spirituality extends beyond the physical, material, and self. Both spiritual and religious beliefs give meaning and purpose to life, and they play an important part in an individual's ability to make sense of his or her existence. Psychological Aspects At the end of life, people may experience a variety of psychological symptoms such as sadness, depression, and anxiety. Feelings of sadness are usually the result of the many losses experienced by the dying person-loss of energy to work, loss of hobbies or interests, loss of the ability to participate in future events, among many other losses. Depression is often under diagnosed and under treated due to a lack of knowledge regarding depression, a low priority given to psychological symptoms, time constraints, and concern about adverse reactions to medications used to treat depression. Normal criteria for diagnosing depression may not be useful for the dying person. In the terminally ill, feelings of helplessness, hopelessness, worthlessness, guilt, and suicidal ideation are better indicators of depression. Anxiety, another symptom experienced by individuals at the end of life, is often affiliated with feelings of fear, worry, uneasiness, and apprehension. Anxiety may also be associated with concerns about being a burden to others, worries about being separated from loved ones, and fears about a painful death. Social Aspects Social aspects at the end of life involve both the patient and the family. Once the term dying is applied to an individual, role changes often occur. Changes in all of life's activities can be affected. The individual may no longer be able to work, may not be able to drive, may be unable to engage in hobbies, may lose financial resources, and may experience a change in personal roles and relationships. Social isolation frequently results as friends and sometimes even family members seemingly abandon the dying person. The individual's role within the family may also change as the family attempts to take on new roles once assumed by the dying person. This can lead to feelings of distress, loss, frustration, and depression. If an individual is elderly and family members have the attitude that the person is "ready to die" and therefore has less of a need to interact with others, this, too, can foster feelings of social isolation, fear, and anxiety. Physical Aspects Alleviating physical symptoms has been the main focus in end-of-life care. The multiple physical symptoms of pain, dyspnea, gastrointestinal disturbances, delirium, agitation, fatigue, and anorexia require care that aims to control or relieve these symptoms to provide the patient with as much function as possible. The Dying Individual's Needs Dying is a profound process of spiritual transformation, a spiritual event of enormous importance. Often, attention is turned away from the outer distractions in the world and turned inward toward a greater peace and comfort in spiritual fulfillment. There seems to be three spiritual needs of the dying: · The need to search for the meaning of life · The need to die appropriately · The need to find hope that extends beyond the grave Spiritual or religious beliefs can be crucial in helping individuals meet these needs. As individuals search

for meaning in their own death or in the death of a loved one, spiritual issues may surface. During this experience, bereaved people may ponder the existential issues of life, not only with regard to the loss of a loved one, but for themselves as well. Sometimes the dying person, as well as his or her family, will be angry with God or a Ultimate Being and may experience a crisis of faith and meaning. Finding meaning is individual and personal. However, finding meaning in life is especially difficult during the dying process. What each individual finds meaningful is not as important as the ability to look back on life, see what has been meaningful, and realize that life can continue to be meaningful even in the last stages. Most often there are at least five elements of spiritual care can be helpful to the dying person: · Engaging in prayer or meditation with or for the dying person · Including the presence of loved ones in the provision of spiritual care and rituals · Providing a time to share feelings and thoughts · Assisting the person to complete any unfinished business · Giving the person permission to die Health care providers or caregivers who share these experiences with a dying individual share in his or her spirituality and the healing comfort of the special relationship they have established with that individual. Supportive Aspects of Care Ultimately, all individuals must ask themselves what role spirituality plays. Dying is one of the great mysteries of life. However, some health care professionals tend to regard dying as a failure, and they use phrases like "fighting the battle," or "lost the battle". Few health care professionals are comfortable with the subject of death or the dying process. Fewer still have received any training on the subject or on how to assist dying patients and their families. Hospice care ensures dying is so much more than just a medical event; it is a life event that everyone will experience at some time or another. Each person's death is as unique as his or her birth. For all involved, it is a time for exchanging love, for reconciliation, and for transformation. The dying person's loved ones can become compassionate companions during the experience and can help the dying person through this journey. Interactions with the Dying Person You must relate to the person, not the illness. In the process, they serve as a role model for both the individual and the family members to do the same. People who are dying need intimate, natural, and honest relationships. It is important to see all people as the unique individuals they are, right up to the moment of death. Be Attentive: Undivided attention is the greatest gift a health care provider can offer to the dying person. Family members and health care providers must listen without judgment, pay attention to nonverbal cues, and respect the personal truths the dying person may be discovering. Allowing individuals to express their thoughts about dying can make the last chapter of their lives profoundly meaningful. Demonstrate Compassion: Individuals want and deserve to be cared for by compassionate, sensitive, knowledgeable people who will attempt to understand their needs. Placing a cool cloth on a perspiring brow, holding the hand of a frightened, dying person, and listening to a lifetime of stories conveys caring and acceptance of that individual.

Create a Calm Environment: The human presence can be very healing, particularly in the final days of a dying person's life. Leaving room to allow silence and reducing distractions creates a calm and receptive environment that may be important to the dying person and his or her family. Attend to Spiritual Needs: As people approach death, their quest for spirituality may involve a search for peace and safety. Some individuals practice a religion while others do not practice religion but do consider themselves spiritual. No matter the path, individuals should be allowed to seek their answers in their own way. Healing Strategies It is important for dying individuals to spend their final months, weeks, or days in a way that best suits them and their family and friends. Some people may want to spend time talking or simply being together with those who mean the most to them. Others might find it helpful and rewarding to work on some activities. At the Red Deer Hospice many of the following activities are incorporated into the daily routine depending on the residents wishes. Journal Writing: Journal writing can be an extremely effective healing technique to use during the grieving process. It can be done as a family or individually. For families, recollections, family stories, and thoughts about time spent together can be written down. Adding pressed flowers, photos, small mementos, and other items to a special book will help memorialize the life that is passing. For dying individuals, the healing effect may come from the process of writing their innermost thoughts and feelings. Family Photos: Family members can select photos to put in a special album and write captions next to each photo. Younger family members may enjoy recapturing memories and appreciate learning about their family's history. A Collection of Favorite Things: Encourage the family to organize a collection of the dying person's special recipes, books, or other collectibles. They can add personal notes to any books or recipes to keep a record of memories about the collection. A Memory Garden: Planting a tree or memory garden is a special way to make a living memorial. As the plants grow, family and friends will be reminded of the loved one. Pets: Depending on individual preference and specific life situations, animals may provide comfort to the dying person. The Red Deer Hospice welcomes pets. Short Trips: If the person has the strength, going to a favorite place or a special restaurant may be therapeutic and can take the focus off the illness. Music Therapy: Music therapy helps promote a patient's physical, mental, and spiritual wellbeing. Music therapy is especially useful at the end of life when communications often break down and a sense of isolation sets in. Gentle environmental sounds like ocean waves, wind, rain, birds, and music from harps, flutes, or stringed instruments may provide a sense of peace. Not everyone likes music, so it is important to pay attention to the dying person's likes and dislikes and provide music that will help the dying person feel a sense of relaxation and a sense of peace. The Hospice has weekly music therapy.

Art Therapy: Art therapy is based on the principle that individuals project their internal world into visual forms. Drawing, painting, or making a collage can be a way for the dying person to express his or her feelings about the end of life. A Spiritual Assessment: Many terminally ill people find it helpful to take a spiritual assessment of their life as they move closer to dying. A spiritual assessment involves asking some of the following questions: What do I need to do, or let go of, in order to be more peaceful? What am I grateful for? What have I learned about courage, strength, power, and faith? How am I handling my suffering? What will give me strength as I die? Involving the Senses in Rituals for the Dying Every culture since the beginning of time has used rituals and ceremonies. Music, art, reading, praying, and meditating may help dying individuals become more in touch with their spiritual aspects. Rituals may help to promote a sense of peace and comfort for the dying person. Touch: Touching is a powerful way to break the isolation, loneliness, and fear of dying. The health care professional should first assess the situation, then guide family members in the use of appropriate touch (e.g. the patient may be in great physical pain and touch may be unwelcome). In most cases, touching can bring a sense of peacefulness. Smell: The sense of smell can elicit powerful emotions. Illness will probably change the types of fragrances that can be tolerated, but the dying person may be able to tolerate mildsmelling lotions and colognes. Natural scents like rosemary or vanilla, a fragrant plant, or a mildly scented candle are usually tolerated the best. Use caution when incorporating fragrances into end-of-life care, since some odors may cause nausea or unpleasant feelings in the dying person. Taste: The sense of taste varies for each individual and usually remains until the end of life. When creating rituals for the dying person, provide foods that he or she desires. Tasting and eating have symbolic meanings for the patient and the family. If the dying person no longer wishes to eat, this can be normal and can be supported since it probably will not cause undue suffering. Sight: Arrange objects that have meaning to the dying person within easy view; these objects should symbolize positive people, places, and events in the patient's life. A room lit by soft, subdued sunlight can provide a sense of serenity to surroundings. Light colors are usually more soothing to the dying person than bright or dark colors. Hearing: The sense of hearing is often sharp even to the end of life, so special words at death can be heard. It can also be comforting to simply sit in silence and hold the hand of the dying person.


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