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Modules:

  • Introduction
  • 1. Advance Care Planning
  • 2. Communicating Bad News
  • 3. Whole Patient Assessment
  • 4. Pain Management
  • 5. Assisted Suicide Debate
  • 6. Anxiety, Delirium
  • 7. Goals of Care
  • 8. Sudden Illness
  • 9. Medical Futility
  • 10. Common Symptoms
  • 11. Withholding Treatment
  • 12. Last Hours of Living
  • 13. Cultural Issues
  • 14. Religion, Spirituality
  • 15. Legal Issues
  • 16. Social and Psychological
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    Back to Introduction and Background
    Elements of End of Life Experience

    Role of Hospice, Palliative Care
    Conceptions of Suffering
    Elements of End of Life Experience

    Elements of End of Life Experience

    • Elements in the broad conceptualization of end of life experience can be thought of in 4 categories:
    • Some of what the patient brings with himself or herself cannot change; in fact it would not be desirable to change some aspects
    • Knowing and accommodating these fixed characteristics, the clinician may then focus on a person’s modifiable dimensions
    • Then the task is to identify the patient’s expectations and needs, and deliver the appropriate care interventions, whether directly by the clinician or through other aspects of the system
    • Together these elements of need and care combine to determine the overall experience of the dying process—the outcomes by which the health care system and society must measure our performance

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    Fixed Elements

    • The most prominent fixed characteristic of a patient facing the end of life is his or her diagnosis and its prognosis
    • Other fixed features have to do with the patient’s background
        Issues that arise as a person faces the end of his or her life (or as parents face the loss of a child) are handled differently by people depending on their background and experience of life, i.e., race, ethnicity, culture, religion, socioeconomic class, etc. To a great extent, patients neither can nor want to change these important features
    • Some physicians may bring have competence in the care of patients with particular cultural backgrounds. Others may not
      • In any case, the individual patient’s background must be learned
      • Through respectful inquiry, the physician can quickly learn about the patient’s specific cultural issues
    • An individual’s background can be broadly categorized into differences of:
      • Race
      • Ethnicity and culture
      • Religion
      • Socioeconomic class
    • There are many ways in which these differences combine—race may not track culture, culture may not track religion, socioeconomic class may not track ethnicity, and so forth
    • Nonetheless, the categories provide a framework from which to work through the issues for an individual patient

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    Race

    • As examples, several studies have demonstrated race-related differences in preferences for life-prolonging intervention toward the end of life
    • Commentators have raised the possibility of mistrust across racial difference
      • In conducting advance care planning discussions or establishing goals for care, sensitivity to the possibility of mistrust may be helpful

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    Ethnicity and Culture

    • The impact of illness is handled differently in different ethnic and cultural groups
    • Culture has been shown to be a strong determinant in attitudes toward end-of-life decisions and care
    • A good deal of useful information is available on various cultural attitudes toward health, illness, and dying
    • However, it is important to remember that people are individuals and the best way to understand another person's culture is to listen carefully to his or her values and beliefs
    • Open, balanced communication is what is required to negotiate cultural differences
    • Respect can be conveyed by erring on the formal side of normal interactions, at least to begin with
      • It is important to remember that our current-day norms in the US of informality are in the minority among cultural approaches
      • Ask patients and their families about these characteristics
      • If questions are respectfully posed they will rarely be offensive
    • It is always best to use interpreters when language barriers exist
      • Using family members is fraught with difficulty
      • If there is a translator, you can also learn from him or her if someone is available and knowledgeable in the relevant group’s context for living
    • Further considerations of cultural issues in end of life care are treated in various modules, including:

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    Modifiable Elements

    • While the patient comes to the physician with an unchangeable diagnosis and a background that is set, there are often aspects of a patient’s experience that are more modifiable than may be apparent initially
    • The following aspects can all change with time and effort:

    Pain and Other Physical Discomfort

    • Patients may experience many physical symptoms as a result of their serious and life-threatening illness
    • Pain, although exceedingly important, is not the only one. Fatigue, drowsiness, insomnia, dyspnea, anorexia, and nausea are but a few of the common symptoms suffered by patients
    • For pain, and most of these symptoms, there are validated assessment tools and effective treatments
    • While research is still necessary to improve our ability to manage symptoms effectively, the biggest need is timely application of knowledge that is already available
    • Clinician assessment of a full range of possible symptoms, use of assessment tools, appropriate interventions, and outcome measures are now incumbent on the medical profession

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    Psychological and Cognitive Symptoms

    • Mental suffering is as vexing as physical suffering
      • For some patients it is perhaps more so
      • Its recognition by the physician, assessment and treatment are an integral part of end-of-life care
    • Depression is widely under-recognized and under-treated in the general patient population and is an especially important problem in the dying patient
      • Too many clinicians rationalize helplessness and hopelessness in their patients with the thought that it is natural to be depressed when dying
      • On the contrary, depression is a frequently treatable complication of life-threatening illness
      • Feeling miserable is not an inevitable part of dying
      • Clinicians should be vigilant and skilled in its treatment
    • Anxiety is another common form of emotional suffering
      • It is capable of exacerbating other forms of suffering and it is also treatable
    • Confusion, whether due to the illness or to treatment side effect, is also common and can range from minor degrees of disorientation to major and distressing hallucination

    For more information, see Module 16: Social and Psychological Considerations

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    Social Relationships and Support

    • Social relationships are usually challenged and changed by illness
    • A person’s ability to stay in his or her job or go to school, to fulfill his or her prior role in the family, to keep up friendships, and to be active in the community are all undermined
    • Social attitudes to illness may isolate a person, and the burdens of care may lead to stresses in intimate relationships
    • Fear as well as anticipatory bereavement can occur in both the patient and those around the patient, and can cause changes in the orientation of relationships
    • All these challenges arrive at a time when the patient and family need extra support
    • Effective social support will be much more likely with some professional assistance

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    Economic Demands and Caregiving Needs

    • The personal and economic burdens associated with a life-threatening illness can be enormous
    • About one third of families report a significant loss of income and savings when there is a member of the family who is sick
    • Usually the wife or mother or daughter of the patient provides the care
      • Many people have to leave their paid work to do so
    • Women and single people have to pay for help more often than others
    • Financial losses are also incurred by insufficient insurance coverage of delayed reimbursement for services
    • Recognition of, acknowledgment of and assistance with these burdens, usually by involving social service support professionals, are critical
    • You don’t have to do the work yourself
      • Insist on the assistance of the health care colleagues who are available to you
      • Involve the community if you can

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    Hopes and Expectations

    • A patient’s (or parents’ if the patient is a child) outlook is greatly affected by his or her expectations
    • A traditional inclination to sustain a patient’s (or parents’) hope even at the price of deception has existed at various times in the history of the profession
      • Further, there has been an assumption in recent years that only cure can bring hope
    • Yet, in numerous studies, the American public is quite clear that the vast majority expect the physician to tell them the truth
    • In fact, there is positive work to be done in facing dying, and there are developmental goals to be realistically hoped for in finishing and reviewing life’s achievements and in reaching closure well
    • Through observation and study, we have learned that hope can be maintained, or strengthened, when we render a candid opinion to the patient of his or her prognosis
    • The task of the clinician is to assist the patient and family in discerning and achieving their own realistic goals
    • This skill can be learned, just like the skills of physical diagnosis or surgery
    • Think in terms of the final stage of development and closure; expect that a patient’s hope can be maintained, even in the face of dying
    • This concept is perceived to be more difficult in pediatrics where the child truly is dying before the "normal" time. However, the concept that the truth is needed is especially true for parents facing the death of their child if appropriate decisions are to be made
    • The specific focus of hope often changes over the course of the illness. In general, patients (and parents) can find fulfillment and closure in 4 general ways
      • They can find meaning in understanding their achievements
      • A sense of readiness can come from having a chance to bring closure to their life
      • Comfort can be found in understanding that death is a natural part of the grand scheme of life
      • Hope of legacies left or connection with something that will live on after they are gone
    • For parents whose child is dying, comfort may be found in creating memories
      • The child’s legacy can become the many lives affected by the child
      • Security can be found in realizing the strength of their spiritual lives

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    Spiritual, Cultural, and Existential Beliefs

    • Different patients may have different needs for spiritual support
      • Some patients will do better without a pastor—if the physician simply frees them from their physical suffering so that they can get on with their own work
      • Other patients appreciate the pastor’s support
    • Spiritual support can come from several sources
      • Many clinicians have pastoral care professionals who can be included in a patient’s team of care
      • Another approach is to involve the patient’s own pastor
      • But be careful; involvement in a religious denomination does not necessarily enable a pastor to engage successfully in the relief of spiritual suffering any more than attendance in medical school gives you the ability to perform cardiothoracic surgery
      • Study, interest, practice, and facility are what make a good chaplain—as is true for a good surgeon
    • While medical professionals need not involve themselves directly in a patient’s spiritual life, it is a critical aspect of life in advanced illness
    • Therefore, insist on competent chaplaincy in the settings where you work. Your patients deserve nothing less
    • Clinicians must be able to assess the importance of this sphere of life and help to engineer a plan that will address this unique aspect of human experience when it is appropriate—it is much easier with skilled colleagues working with you

    For more infromation, see Module 14: Religion, Spirituality, and End of Life Care

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    Health Care System Interventions

    Technical interventions have been the main focus of much of medicine. In this larger perspective it is clear that it technical intervention is just 1 of many elements in end-of-life care. Furthermore, it is not all provided by physicians and other professionals. Far from it. Support and care may also come from:

    Family and Friends

    • The 'front line' of care has always been provided by family and friends for a great majority of patients
    • Even in an age when many patients die in an institution, this is still true
    • Currently, care is moving back into the home, which is where 9 out of 10 patients want to be, and health care delivery systems now favor this as well
    • Clinicians who understand and encourage helpful family involvement in patient care can bolster and be assisted by rather than feel interrupted by and undermine this important source of care
    • In addition, the clinician who is aware of the burdens of care, and can direct the caregiver to a source of support, will help foster quality of life for patients and families with the best possible experience

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    Communities

    • Some patients are involved in communities that can provide spiritual activities, support groups, and even volunteer nursing-aide care
    • Other members of the health care team may know about more resources than you do—ask them
    • These resources can be invaluable and the clinician should welcome them in whatever way best supports the patient
    • A few calls from yourself or a member of your team to the patient’s religious institution, school, workplace, or neighborhood community can put a network of care in place
    • One willing coordinator of community volunteers who can provide transportation, help with shopping and home chores, or a few friendly visitors

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    Professionals

    • The medical professional can uniquely guide and provide sources of care for suffering in all the 4 elements of physical, psychological, social, and existential experience
    • The importance of interdisciplinary teams for this care cannot be overstated
    • Technical interventions are the unique province of clinicians, and their importance is great
    • Nonetheless, clinicians should not lose track of the fact that some interventions do not involve adding on a treatment but rather withholding or withdrawing an unwanted or a no-longer-wanted intervention
    • In addition, clinicians must always recall the fact that empathic communication can itself be an intervention

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    Societal Institutions

    • Institutions in society powerfully determine peoples’ activities and experiences as well as outcomes of those activities. This is no less true in end-of-life care
    • For instance, the Medicare Program greatly influences the type of care people over the age of 65 receive. Medicare policies on hospice care determine who may receive what services in many cases
    • Private institutions may also be influential in a patient’s experience toward the end of life, whether these institutions are disease-based advocacy or support groups or community churches
    • The critical affects caused by the nature of health care delivery systems greatly determines the possibilities for care, and this is taken up in the next major section

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    Outcomes

    Now, let’s consider outcomes. There are both objective and subjective measures that are important in assessing the overall quality of care for dying patients and their families.

    Objective Outcomes Measures

    • Objective measures include documentable portions of care such as physician’s orders that evidence proper planning and care
    • Scales of symptom intensity should be used and can be correlated with treatment approaches to assess quality of care
    • Quality-of-life scales should be used as well
    • Global scales of suffering and of quality end-of-life care are being developed to provide clinically useful indicators as well as outcome measures
    • Scales for institutional processes of care are also under development

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    Subjective Measures: Patient/Family Satisfaction

    • Patient and family satisfaction with care remains an important measure
    • Although surveys of satisfaction often show poor correlation with other indicators of quality care, it remains an important concept and a tangible outcome measure
    • In the end it is the subjective experience of dying, caring, and bereavement that is are critical to the continued life of those who survive the patient’s death
    • Much of the fear, trepidation, and distrust of contemporary health care comes from direct experiences with a beloved family member or friend. We have the ability to alter this perception
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