|
Purpose and Goals
 The goal of the following course is for you to learn the basic concepts of palliative care, with emphasis on emotional, psychosocial, spiritual and family issues; pain management; and the rights of the patient to self determination and decision making.
Instructional Objectives
Upon completion of this course, the learner will be able to:
- Define and characterize palliative care.
- State the role of palliative care and symptom management in end of life care.
- Summarize nursing interventions that are useful in managing pain in a person having a terminal condition.
- Define strategies to communicate effectively with client and family about death and dying.
- Outline ways to address the emotional and spiritual concerns of the dying client.
Introduction
Palliative Care: What is it? How does it relate to life and end of life issues? Many healthcare professionals subscribe to the notion that death is simply another dimension of life - a transition of living. This perspective of death as a major life transition should be the focus of care for a client in the last stages of life.
Palliative care is care which is intended to relieve the symptoms of a disease that cause the patient to suffer, but which is not expected to cure the disease. This continuing education program focuses on the activities of health professionals that are involved in providing this type of care. For this program, we will focus on assisting and providing support to a person who is in the end stage of life, as well as to his or her family system. Please note that in all cases it is the client and his or her family system that establish priorities for care: the role of the health professional is to support the family system in achieving their unique goals. The term "family system" is broad and encompassing: it includes the client's significant other(s), immediate and extended family members, friends, and in some instances even the community. Each person defines who is included in his or her family system, and this group will vary from person to person.
Health professionals in general, direct caregivers in particular, are in an ideal position to assist, and even provide alternative perspectives to a person in their care, and to allow their client to be open about feelings as well. Opportunities for meaningful interactions can be especially evident when administering personal care to the client in his or her home. A certain intimacy can be established while assisting a person with the usual and ordinary things of life such as preparing meals, doing housekeeping activities, and completing personal care.
Implementing Palliative Care
Palliative care and symptom management are the essence of care for a client experiencing end stage disease symptoms. They are directed toward promoting a high quality of life, relief of suffering, and supporting a peaceful death. They encompass the active and total care of people whose disease is not responsive to curative treatment.
Diagnostic procedures and special treatments such as chemotherapy, radiation, nutritional augmentation, pharmacotherapy, and in some cases even surgery, may have a place in palliative care. These interventions are ordered by the physician if the benefits in providing relief of symptoms outweigh the disadvantages of not having it. The goal of any intervention in palliative care is to improve the quality of life for the person by managing symptoms as opposed to controlling or curing the disease.
Palliative care focuses on the relief of suffering when the underlying disease cannot be cured. Suffering is described as a state of severe distress that often is associated with events that threaten a person's intactness as a human being. Hence, suffering is viewed more broadly than simply experiencing physical pain. Rather, the whole person experiences suffering: having pain in the mind and spirit as well as one's body. Moreover, the physical symptoms will vary with different diagnoses, affected body systems, progression of the end stage disease, and impact of these factors on the individual person. For example, nearly 75% of people with cancer experience pain at some time during their illness. But other conditions produce pain as well, including heart disease, AIDS, decubitus ulcers, and neuropathy. Different interventions may be needed to manage the pain experienced by different clients with different diseases.
In addition to pain, there may be other physical symptoms experienced by the client receiving palliative care. For example:
- Neurological symptoms including seizures, paralysis, or changes in mental status such as lethargy, confusion, agitation, or hallucinations; sensory and perceptual changes.
- Cardiovascular symptoms such as edema, syncope, hemorrahage, or angina.
- Respitory symptoms such as dyspnea, cough, or congestion.
- Gastrointestinal symptoms such as nausea, vomiting, anorexia and cachexia, constipation, diarrhea, prolonged or continuous hiccups.
- Genitourinary symptoms such as incontinence, retention or dysuria.
- Musculoskeletal symptoms such as weakness, fatigue, pathologic fractures, contractures and spasms.
- Integumentary (skin and mucous membranes) symptoms such as pressure ulcers, ulcerative lesions, dry mouth, oral lesions, infections and pruritus.
Consequently, in addition to assisting with or providing routine activities of daily living during care, special therapies may be ordered by the physician to relieve or manage symptoms. For instance, nutritional, physical, occupational, or speech therapy may be ordered for persons with a chronic disease or debilitating condition to maintain a certain quality of life during the end stages of the condition. Such interventions may also help to maintain a greater degree of mobility or enable one to participate in activities of daily living for a longer period of time. Medical supplies and durable medical equipment also can be helpful in palliative care and symptom management, such as hospital beds with special features; oxygen, intravenous, and enterostomy therapies; and wheelchairs and other comfort devices. In addition to improving comfort, durable equipment and medical supplies can help to provide a safer environment for the client as well as caregivers.
Management of Specific Symptoms
Symptom management in many cases is the most important activity in providing care to a client. Symptoms will vary from person to person, and his or her particular health problems or diagnosis. Likewise, the symptoms will change in intensity, frequency and duration as the disease progresses. Carefully listening to what the client is telling you, observing and assessing for changes from the baseline status, then intervening early on can go a long way to managing symptoms in the client.
Symptoms encountered in palliative care that cause an intense degree of discomfort include nausea, vomiting, anorexia, pain, skin breakdown and decubitus ulcers, urinary and bowel irregularities, and respiratory problems. If these cannot be managed at home, short-term inpatient care may be provided for symptom control, respite care, or terminal care (when death is imminent).
Pain Management
Pain management is an important component of palliative care. In recent years major contributions have been made to the nursing research literature regarding protocols for pain relief. The holistic view of pain and its management includes attention on the part of the caregiver to physical, emotional, social, and spiritual needs. Adequate availability and doses of analgesics, including narcotics; around-the-clock scheduling; and the use of co-analgesics and other non-drug interventions have made the control of pain an attainable goal. Throughout the care process, the client is central in making decisions about pain management. Judicious use of prescriptive and non-prescriptive drugs can greatly enhance the quality of life by providing relief from pain and other discomforts such as nausea, vomiting, and diarrhea.
Analgesia includes not only drug therapy, but also non-pharmacological interventions such as imagery, massage, therapeutic touch, music therapy, and meditation. The goal of therapy is to keep the client comfortable, as defined by the client, without overly clouding mental and cognitive functions necessary to the client's participation in the activities of daily life. Fears of addiction to narcotics frequently are a concern to clients and families as well as healthcare professionals. Thus, teaching about pain management and facilitating the expression of beliefs about the use of medications are critical interventions if these are to be used effectively in palliative care and symptom management.
Measures of client comfort and function should be visible to caregivers as well as members of the family system on a documentation record, such as a bedside flow sheet specifically designated for rating pain. This information will provide an assessment of the success of the pain control regimen and also remind the caregiver that ratings above a specified number require intervention. Whether or not the agreed-upon goal has been achieved should also be routinely reported at the change of shift, along with other information about the person's status such as vital signs. In fact, the American Pain Society suggests that pain rating be treated as the fifth vital sign (in addition to blood pressure, pulse, respiration, and temperature).
Emotional and Communication Support
Health professionals providing palliative care must be sensitive to the reality that depression, anxiety, and sleep disorders may be present and may cause physical or emotional symptoms. Furthermore, unique psychosocial issues accompany terminal illness. Emotional responses such as denial, anger, sadness, acceptance, and hope may vary from day to day and may differ between the client and the various members of the family.
Coping skills to deal with the loss of the loved one also may be limited, or dysfunctional, in some family systems. Moreover, even family systems that have effective coping abilities may find relationships strained at some time or another during a terminal illness.
Obviously, one of the most critical components of palliative care is effective communication between and among the client, caregivers and family members. Caregivers involved in terminal care must be aware of the opportunity and carefully listen for an opening for communication on the part of the client. Most dying persons want to talk about the process of their own death with loved ones. Oftentimes, family members feel extreme discomfort with the topic, and are unable to participate in discussions of death and dying. In these situations, health professionals can lead the way and assist the family system to feel that it is okay to talk about death and dying within the family.
Many times, actually saying the words "death" and "dying" provides an opening for communication to begin on the topic. If the caregiver is comfortable with those words, that in and of itself can help others to feel more comfortable talking about the highly sensitive topics of death, loss and grieving. In one case Mary, 72 years old, had end stage cardiac disease and was having trouble making a decision about continuing to live at home. Mary wanted to remain at home but her family was very concerned about her living alone. When asked what she believed their real concern to be Mary said, "I think my family is afraid they will come into my home and find me dead." When asked if she was afraid to die at home or even alone, her response was, "Heavens, no! This is where I want to spend my last days. I want to die where I lived for the last 50 years with my husband and children. My husband died in our house 7 years ago. This is where I belong."
Her case manager informed Mary, the client in this case, that she was capable of making her own decision. To help reduce the family's anxiety, Mary agreed to carry a portable phone with automated dialing for quick access to her family and doctor. This strategy reassured the family, and it allowed Mary to live at home even with the seriousness of her illness. In the end, upon making a routine home visit, Mary's nurse found her deceased in bed. In essence, the care plan for this woman focused on assisting her to live and die in the manner she desired.
Meeting the Spiritual Needs of the Dying
Often when health professionals talk about spiritual care, or the spiritual needs of their clients, they think of providing that person with the opportunity to participate in some specific religious ritual, such as the sacrament of communion or last rites. Or they offer to call the person's rabbi, priest, or minister.
Yet, spiritual needs can be more concretely and broadly defined, if one will move from looking at the symbols of a person's relationship to God to the essence of that relationship itself. The basic spiritual needs of all persons are:
- the need for meaning and purpose
- the need for love and relatedness
- the need for forgiveness
Throughout history mankind has searched for the meaning of life, and this search has been the primary motivation for many of life's richest and most satisfying experiences. For many, ultimate hope and meaning comes from a relationship with God (or however they conceptualize the higher spiritual power in their lives). This bond is especially important for the person searching for meaning in the face of death. Reliance on people and worldly achievements falls away as they will all be left behind, and the focus is increasingly on the unknown future. Those who have a relationship with their God can contemplate that future with hope and a sense of peace.
The need for love and to be in relationships with others is also a profound spiritual need. The dying person is no longer in a position to earn love from other people or try to meet the conditions required to obtain or maintain their love. The only true and lasting source of unconditional love is their God, and the dying person may turn increasingly toward God for that love. Guilt is one of the biggest burdens of one's life, and it comes from the sense of failure to live up to expectations, either one's own or those of others, or of God. The dying person needs time to settle differences and to receive forgiveness from God and from others if he is to die in true peace.
Is it appropriate for a nurse to be interested and involved in meeting the spiritual needs of the client? Absolutely! When assessing the spiritual needs of the dying, it is important to evaluate each situation carefully, using the nursing process. Spiritual care should not be given haphazardly or with pat answers. Each individual is unique, and so are his beliefs and his needs.
Nurses may use their own spiritual selves in a therapeutic way to address the spiritual needs of the client. To do so, the nurse affirms each patient as a person worthy of our time and involvement, and relates to each in a supportive, caring way. In essence this is a process of being as opposed to doing. To relate to people in this way means that the nurse must be confident in who she is and what she believes, and this requires facing and resolving her own issues regarding death and dying.
Therapeutic use of self involves skills such as listening, empathy, vulnerability, humility, and commitment. It is a difficult task, but it can be accomplished with faith, education, and practice. The nurse must be willing to continue in the relationship as long as that person needs spiritual support. He will experience pain and grief when he gets involved with his clients in this way, but there is tremendous reward in knowing that one has helped the dying person through one of the most difficult and stressful times of life.
The Role of Advance Directives
In recent years, it has been increasingly recognized that an individual has the right to self determination not only with regard to activities during life, but also in choosing services that will enhance the quality of life during her final days. The person may have chosen an executor, made decisions regarding disposition of personal property, and provided loved ones with information about specific concerns and intentions. An important part of this process is the preparation of advanced directives that may include a living will and a durable power of attorney for health care decision-making in the event of incapacitation. If the person decides that he does not want to be maintained by gastric feeding or mechanical ventilation, then those decisions can be conveyed to the physicians and others involved in his care.
Many individuals at the end of life have reported considerable comfort in knowing that they have expressed their wishes and are to be allowed a death with dignity according to those wishes. Healthcare professionals can assist their patients to achieve this level of peace by encouraging the preparation of advance directives.
Nurses are committed to providing care to the whole person throughout the life span, and to maintaining a holistic perspective on the needs of the person in their care. What could be more important than marshaling all the nurse's personal strengths and professional skills to provide caring support to those facing one of life's greatest transitions?
|
National Center of Continuing Education
