Dying in Peace
Melodie Olson
Lynn Keegan
Nurse Healer OBJECTIVES
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Theoretical
Use theories of grief, self-transcendence, and culture to guide the process of helping the dying to experience their deaths peacefully and meaningfully.
Discuss with colleagues difficult issues surrounding the care of dying people.
Interview patients who have experienced nearing death awareness.
Clinical
Explore personal myths and beliefs about death with colleagues.
Use comeditation to help a dying patient experience peace.
Use the life review process to help a person experience a sense of integration.
Personal
Plan your ideal death.
Record several imagery scripts and experience “letting go” with these exercises.
DEFINITIONS
Culture: Socially transmitted ways of life including but not limited to language, arts and sciences, thought, spirituality, social activity, and interaction.1
Death: A moment in time.
Dying: A stage of life that fits into a broader philosophy, giving both death and life meaning.
Grief: A response to loss, characterized as dynamic, pervasive, individual, yet normative.
Loss: The absence (or anticipated absence) of someone or something of real or symbolic meaning.
Mourning: The expression of a sadness or sorrow resulting from a loss.
Myth: Story lines created by individuals and cultures about meaning and journeying in life.
Nearing death awareness: The dying person’s knowledge of death and attempts to describe this experience to healthcare providers, family, and friends.
Perideath: The last hours of life, the actual death, and the care of the body after death.
Self-transcendence: A spiritual concept referring to moving one’s self into a wider sense of consciousness and understanding.2
Spirituality: “The essence of our being.” (See also Chapter 32.)
▪ THEORY AND RESEARCH
To die peacefully, to die with the knowledge that life has had meaning and that one is connected through time and space to others, to God, and to the universe, is to die well. Helping people
to die well requires knowledge and skill, as well as a willingness to be intensely involved in the most intimate phases of another’s life. Physical, spiritual, psychological, and social distress must be addressed with concern and compassion. The nurse, in being present “in the moment” with the patient and family, inevitably confronts her or his own mortality. Care for the caregiver (professional and family) is a requirement, a part of the care of the dying. The patient and the family are the unit of care.
to die well requires knowledge and skill, as well as a willingness to be intensely involved in the most intimate phases of another’s life. Physical, spiritual, psychological, and social distress must be addressed with concern and compassion. The nurse, in being present “in the moment” with the patient and family, inevitably confronts her or his own mortality. Care for the caregiver (professional and family) is a requirement, a part of the care of the dying. The patient and the family are the unit of care.
One approach to easing the burden for those who are caring for the terminally ill is based on Watson’s Theory of Caring.3 Her theory of human caring focuses on the relationship between the whole person of the caregiver (nurse) and the whole self of the client/family as it protects and preserves the humanity and dignity of the client. In this partnership or relationship between caregiver and client and family, the burden becomes shared; each can ease the other’s burden. Developing theories to guide end-of-life care are based on standards of care, like those identified by professional associations, state laws, and culture. Theories related to grief and loss, self-transcendence, myths and beliefs (two components of culture), and nearing death awareness are particularly useful in formulating effective plans of care for the dying.
Grief and Loss
Grief theory links concepts of loss, bereavement, and mourning into a fabric of ideas that help decide action on the part of caregivers, family members, and patients. Grief is not only normative, but dynamic, pervasive, and individual. Each individual moves through bereavement at a different pace and copes in a different manner, depending on inner resources, support, and relationships. Society may think that the period of mourning has been long enough (a normative statement), but the individual may need more (or less) time before beginning to take charge of a changed life.4
Grief is a necessary process for both the dying person and his or her significant others. The more bonded and intimate two people have been, the more intense the grief. Grief is pervasive, affecting every area of life. Therefore, it affects relationships, physical symptoms, feelings, spirituality, and one’s sense of meaning in life and schedules of care. The person who is dying integrates care (e.g., regular laboratory tests, visits to the healthcare providers, various therapies) into a full schedule. As death grows closer, visits by family and friends may be welcome. But there comes a time when the one who is dying needs time to become introspective, to consider life’s messages and meanings. At any of these stages, caregivers may feel excluded from the dying one’s life, wanting to be present yet having difficulty “reaching” the loved one.
Hope increases as death approaches, but the nature of hope changes. Hope for less pain, for example, is common, when hope for a cure has been abandoned. Hope is a basic construct of spirituality and has been recognized as having both physiologic and psychological value. Families and staff caregivers share in hope as it relates to spirituality and the end of life. The whole team grieves, and the whole team helps each other through the process.5,6
Spiritual development is related to the phases of grief originally identified by Kübler-Ross.7 Nursing care during each of the phases takes into account the spiritual maturity of the griever, whether it is the dying person or those who love that person. A person who is in the early stages of spiritual maturity, whether a child or an adult, needs much external help, information, communication, and developing trust. This person may not achieve acceptance (and transcendence) without moving to a higher level of spiritual development. For comfort persons who have a more formal spiritual practice may use rituals, rites, symbols, and activities that incorporate them; thus, they may find comfort in planning their own funeral. Skeptics may build on the comfort found in the formal structures but often add intellectual processes, such as bargaining with medical science (e.g., becoming part of experimental studies), reading books on death and dying, considering their contributions in this life, yet acknowledging a fear of the final moments—fear of pain and loss. Those in the final spiritual stage believe in a common bond uniting humanity, the world, and the universe. They are attracted to the mystery of faith.8 Therefore, the dying person in this stage may worry more about others, become angry about
the effect the disease or the dying has on loved ones, choose humanitarian goals, become introspective and prayerful, and contact family and friends to say goodbye.
the effect the disease or the dying has on loved ones, choose humanitarian goals, become introspective and prayerful, and contact family and friends to say goodbye.
Nursing care requires a careful assessment of a dying person’s spiritual resources to assist with peaceful death. Dossey’s description of the last moments of her mother’s life shows a beautiful integration of past ways of her mother’s worship practices (Bible verses) and modern, familial ritual created especially for her.9
The nurse’s own developing spiritual maturity can be a useful support, as when one accompanies an acquaintance for a while along a road. The nurse maintains an attitude of being open, listening, and assessing the client’s path even when his or her own journey changes directions. Successfully dealing with grief allows the dying client to achieve peace and allows the family and significant others to move on with a changed life, cherishing memories while creating new ones.
Self-Transcendence
Many people have studied self-transcendence, the sense of a temporal integration of self, the feeling that past and future enhance the present. In studying survivors of concentration camps, Frankl discovered that those who survived seemed to transcend (beyond self) either toward other people or toward meaning.10 Transcendence may occur through creativity, the family, or works of art; through receptivity toward others; or through acceptance of a situation that cannot be changed. People who can be identified as self-transcendent at the end of life tend to have less depression, less selfneglect, and less hopelessness.11 They have a greater sense of well-being and a greater ability to cope with grief. The self-transcendent person lives in the present and usually sees death as a normal part of life. Encouraging people to seek meaning and connections, either in the present or through the ages, helps people move toward self-transcendence to achieve peace.
Measures to support one’s movement toward self-transcendence build on the need to look inward for connectedness and a sense of timelessness. Life review—the systematic review of one’s life to see that it was meaningful, to remember those who are loved, and to know one’s own place in history—is one example of a useful process.12 Life review is the story of this life, of living in this space on this Earth in this time. Studies show that systematic life review helps reduce depression and anxiety, and it promotes a feeling of “This was my life, no one else would have done it this way, and I have a unique place in this universe.”13
Myths and Beliefs
Myths are our story lines, values, beliefs, and images; they are our personal manual about the meaning and the journeys of the human spirit.14 Myths help us seek the unfolding mystery in life. In seeking life’s meaning and purpose, personal myths help us manifest hope, learn to accept daily struggles and challenges, and deal with ambiguity and uncertainty. Myths help us recognize strengths, choices, goals, and faith. They also help us to assess our perception of our world, recognize our capacity to pursue personal interests, and demonstrate love of self and selfforgiveness. Myths provide a sense of connection and of oneness with all of life and nature.
Throughout life, we create many myths; some serve us well, while others hinder our healing journey. More than 30 years ago, the Senior Actualization and Growth Exploration (SAGE) study began to question society’s beliefs about older people and their potential.15 The researchers taught seniors deep relaxation, biofeedback, breathing exercises, meditation, yoga, and ways to expand creativity through movement, music, art, education, and group discussion. This project not only helped the participants reshape their declining years to an understanding of healthy aging and lifestyles that promote the goal of healthy aging, but also gave them new, practical ways to cope with personal problems and a more confident self-image. With healthier lifestyles, most people can add a vital 30 or more years to their life span. There is also more time to practice a new way of living so that dying in peace is a clear choice for each person.
Nearing Death Awareness
When people become aware that they are approaching death, they often talk about two things. They may attempt to describe what they are experiencing while dying, and they may
request something that they need for a peaceful death. This awareness is not to be confused with near-death experiences that happen as a result of cardiac arrest, drowning, or trauma in which a person feels the self suddenly leave this life, but quickly return. In a state of nearing death awareness, a person’s dying is slower, often because of a progressive illness such as acquired immunodeficiency syndrome (AIDS), cancer, or heart or lung disease. The person becomes aware of a dimension that lies beyond, a drifting between this world and another, perhaps a space of transcendence, yet not one that touches “an Ultimate.” The slower dying process allows the dying person to have more time to assess his or her life and to determine what remains to be finished before death. Some dying patients try to describe being in two places at once or somewhere in between. It is a time for a caregiver to respond to the dying person’s wishes and needs and to listen to what dying is like for that person. It is at this time that discussions about the patient’s wishes about cardiopulmonary resuscitation should be heard if this topic has not been discussed prior to this time.16 This can be a period of challenge for many caregivers, and yet it can help each of us to prepare for what may happen in our dying. Those individuals who are tired of living but who do not believe that it is time to die describe the dying process differently from those who are truly ready to depart. The statements of those who are truly ready are different in the clarity with which the words are spoken, the look in their eyes, or their touch. Their statements, looks, or touches are like no others that have been made before or during the dying process.
request something that they need for a peaceful death. This awareness is not to be confused with near-death experiences that happen as a result of cardiac arrest, drowning, or trauma in which a person feels the self suddenly leave this life, but quickly return. In a state of nearing death awareness, a person’s dying is slower, often because of a progressive illness such as acquired immunodeficiency syndrome (AIDS), cancer, or heart or lung disease. The person becomes aware of a dimension that lies beyond, a drifting between this world and another, perhaps a space of transcendence, yet not one that touches “an Ultimate.” The slower dying process allows the dying person to have more time to assess his or her life and to determine what remains to be finished before death. Some dying patients try to describe being in two places at once or somewhere in between. It is a time for a caregiver to respond to the dying person’s wishes and needs and to listen to what dying is like for that person. It is at this time that discussions about the patient’s wishes about cardiopulmonary resuscitation should be heard if this topic has not been discussed prior to this time.16 This can be a period of challenge for many caregivers, and yet it can help each of us to prepare for what may happen in our dying. Those individuals who are tired of living but who do not believe that it is time to die describe the dying process differently from those who are truly ready to depart. The statements of those who are truly ready are different in the clarity with which the words are spoken, the look in their eyes, or their touch. Their statements, looks, or touches are like no others that have been made before or during the dying process.
▪ HOLISTIC CARING PROCESS
Holistic Assessment
In preparing to use interventions for promoting peaceful dying, the nurse assesses both the dying person and the family or significant others in the following areas:
The different emotions that surface during the process:
Guilt: Blame of self and others over management of the dying person; distress over inability to decrease pain
Anger: Toward God, disease, family or significant others, doctors, or survivors; over inability to fix things physically, emotionally, and spiritually
Ability to laugh: The shortest distance between two people; relationship between comedy and tragedy (joy and sadness pathways cannot operate simultaneously)
Love: An essential element in living and in dying; a state of self-giving and presence of being a person, where openness and willingness exist for self or another; the network that brings and weaves families and significant others together to work through the dying process and move into total acceptance of death
Fear: Often evocation of separateness and aloneness, but can become a path leading deeper into the present moment; useful in that it reveals areas of resistance; return to unconditional love and a sense of equanimity after release of fear
Forgiveness: Essential element for inner peace; an exercise in compassion that is both a process and an attitude; not necessarily reconciliation
Faith: The larger vision of existence, which is different for each person; helps to harness energy to evoke healing resources and power
Hope: Support of patient or family and significant others during death’s darkness; an inner moment that perceives lightness when in the midst of darkness and has the potential for leading to deeper love; hope for decreased pain and increased physical and spiritual comfort, for a miracle, for peace of mind, for a remission, for peaceful death transition, and for acceptance of a shorter life than expected or the death of a loved one
The patient’s interactions with others and the effect of the patient’s emotions on these interactions
The need for education about what will happen and what can be done to help, for the family and the patient
Comfort needs, assessed according to the patient’s culture and wishes for
Signs of psychiatric illness, under- or over-medication that may interfere with a patient’s ability to cope with dying
Hallucinations
Delusions
Depression
Denial that interferes with the ability to move toward comfort and peace
Excessive anxiety
Confusion, agitation, or memory loss, especially in older adults
Advanced dementia
Identification of Patterns/Challenges/Needs
Following are the patterns/challenges/needs compatible with dying in peace interventions. (Also see Chapter 7.)
Altered circulation
Altered oxygenation
Altered body systems
Altered communication
Effective communication (see the section titled “Nearing Death Awareness” earlier in this chapter)
Spiritual distress
Spiritual well-being (see the section titled “Nearing Death Awareness” earlier in this chapter)
Ineffective individual or family coping
Self-care deficit
Body image disturbance
Powerlessness
Hopelessness
Pain
Anxiety
Death anxiety
Grieving
Fear
Outcome Identification
Exhibit 21-1 guides the nurse in identifying patient outcomes, nursing prescriptions, and evaluation for assisting patients and their families and significant others during the dying process.
Therapeutic Care Plan and Interventions
The following guidelines are appropriate both for the dying person and the caregivers, whether family, friends, or nurse. They are helpful in all settings. The guidelines apply from the first awareness of a coming interaction with a patient and family who are moving through the dying process, through dying, and afterward.
Before the interaction:
Spend a few moments centering yourself to recognize and honor your presence there. Become a healing presence, be in the present moment with the client/family … believing in and affirming their dignity and wholeness.
Begin the session with intention to facilitate healing and peaceful dying. This may be a prayer.
At the beginning of the interaction:
Encourage the patient and the family and significant others as the caregiver(s) to do the following:
Set realistic goals.
Identify different behaviors that have surfaced in their interactions with each other during this period.
Gather a healing team and honor the patient’s personal needs and feelings to avoid more suffering.
Accept current circumstances, and release things that are beyond their control. Accept the fact that release may not be possible at this time, but they can work toward it.
Take frequent breaks, at least 20 minutes daily, to evoke high-quality quiet time with relaxation, imagery, music, meditation, prayer, journal keeping, or dream work to assist in the process of letting go.
Exercise, take long hot baths or showers, eat nutritious foods, eliminate excess caffeine or junk food, and ask other people for relief.
Encourage the patient and caregivers to tell themselves over and over what a good job they are doing and that it is the best job that they can do. Repeating it helps in releasing guilt, anger, and frustration.
EXHIBIT 21-1 Nursing Interventions: Dying in Peace
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During the dying process:
Recognize the one who is dying as the person who is usually the best teacher about what is right. The place of death is not as important as the care, trust, compassion, acceptance, and love that was provided and shared in the perideath interactions.
Determine the care needed. The whole family should consider the following questions and issues:
Will the dying person receive better care in a hospital, in a hospice, or at home?
What kinds of medical treatment, technology, and equipment are needed?
What information is needed to make decisions about care choices (e.g., providing hydration, withholding nutrition)?
Can a hospice nurse or healthcare professional assist with treatments and medication?
Is a parish nurse or congregational nurse available for liaison with the congregation involved?
What expenses will be involved? What expenses will be covered by insurance? Is the patient eligible for state or federal disability payments, veterans or Social Security benefits, or Medicaid or Medicare?
Who will assume the care 24 hours a day? Who will provide respite care? Are there children at home who also need continuous care? Can the care of the dying person and young children both be managed?
Will some or all of the organs be donated?
Explore the advantages and disadvantages of dying at home (or alternative sites). Advantages for staying in the home include the freedom of the patient and the family to do anything they wish because they can change or alter routines and schedules at will. In addition, staying in the home makes the continuous support of family, friends, and even pets available. It allows meals to be prepared fresh and served with attention to details; it eliminates the stress of traveling to and from the hospital or hospice; it provides the unique beauty of familiar surroundings; it makes high-quality time available to focus on inner work for the moment of death; and permits the patient and family to experience feelings and emotions in a different way because their closeness is subject to fewer interruptions. Finally, the patient and family can make most of the decisions regarding care, medication, and treatments and can ask advice from professionals when needed. Disadvantages to staying at home may include inadequate support for coping with care needs or competing needs for care by small children, older adults, and other sick or disabled family members. When available, inpatient hospice units may help
blend some of the advantages of care in the home with the additional support an individual may need that significant others cannot provide.
Integrate therapies.
Does the dying person believe that medical and nonmedical modalities are complementary?
How motivated is he or she to try nonmedical resources (e.g., acupuncture, aromatherapy, touch therapies, music)?
What nonmedical resources are available?
Does the dying person really want to try different modalities, or is he or she receiving so much advice about therapies that the response is passive rather than active?
Is the dying person choosing to try therapies to please caregivers? A patient should feel free to choose not to include complementary therapies if they are not wanted.
Incorporate the senses in rituals.
Touching: Lovingly, freely, and joyfully convey through your hands what your heart is feeling. Touching is a powerful way to break the illusion of separateness, loneliness, and fear; it may evoke laughter, calmness, or tears. Create times to give and get hugs. Hold a hand now and then. Avoid touching if it is not welcome.
Smelling: Use lotions and colognes with mild fragrances, remembering that illness will probably change the types of fragrances that can be tolerated. Use caution because some odors cause nausea and unpleasant feelings. Try light, natural scents such as rosemary or vanilla, perhaps as a plant growing in the room or a candle in the bathroom (remembering safety considerations with an open flame).
Tasting: Remember that taste varies with degrees of illness but stays with us until the end of life. Tasting and eating have social and symbolic meaning to patients and family. Explain what will happen if the patient stops eating within the progression of terminal illness, that it may be normal and may not cause undue suffering. Provide tastes and foods that are desired.
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