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End of Life Care Patients are often confronted with physical and emotional problems when at the end of life. In addition, family members experience numerous.

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Presentation on theme: "End of Life Care Patients are often confronted with physical and emotional problems when at the end of life. In addition, family members experience numerous."— Presentation transcript:

1 End of Life Care Patients are often confronted with physical and emotional problems when at the end of life. In addition, family members experience numerous physical, emotional, and economic problems as they face the eventual loss of their loved one. These problems can extend into the bereavement period and can be further exacerbated if the family members are not receiving adequate support. It is important to provide patients with adequate relief of physical & psychosocial symptoms as well as help families and loved ones cope with the impending loss of their family member. This must be done while maintaining dignity of the patient and family. (ACS, 2004, p. 523)

2 It is reported that: Nearly 50% of all patients going through the dying process spend most of their time in moderate to severe pain. Most Americans would prefer to die in their own home, yet most die in institutions. Nearly 50% of dying patients in the United States experience multiple physical and emotional symptoms that go untreated or are under-treated. These patients also experience decreased quality of life, often due to symptoms such as pain, dyspnea, depression, anxiety, delirium, fatigue/weakness, restlessness/agitation, and gastrointestinal disturbances.

3 Ethics & End of Life Care
Ethics is “The Science that deals with the principles of right & wrong, good and bad; it governs our relationships with others and is based on personal beliefs and values” (Sullivan & Decker, 2005, p. 68). Ethical dilemmas often occur in end of life issues. Some of these issues are: assisted suicide, end of life decisions, pain management, health care reform/access to care, truth telling, scientific integrity, confidentiality, and advanced directives. Some of these areas include spiritual care, effective symptom management and palliative care. Another ethical issue arises when families have difficulty “letting go”. This is especially true in situations where family members may block or interfere with analgesic administration.

4 JCAHO & End of Life Care JCAHO Standards Standard PC.8.70 Comfort and dignity are optimized during end of life care. EP 1 To the extent possible, as appropriate to the patient’s and family needs and the hospital’s services, interventions address patient and family comfort, dignity, and psychosocial, emotional, and spiritual needs, as appropriate, about death and grief. PATIENT AND FAMILY RIGHTS (PFR) PFR.2.2 The organization informs patients and families about their rights and responsibilities related to refusing or discontinuing treatment. PFR.2.3 The organization respects patient wishes and preferences to withhold resuscitative services and forgo or withdraw life-sustaining treatments. Joint Commission International Accreditation Standards for Hospitals 3rd Edition Standards Only © 2007 Joint Commission International PFR.2.4 The organization supports the patient’s right to appropriate assessment and management of pain. PFR.2.5 The organization supports the patient’s right to respectful and compassionate care at the end of life. CARE OF PATIENTS (COP)    COP.6 Patients are supported in managing pain effectively. COP.7 The organization addresses end-of-life care. COP.7.1 As appropriate to the care and services provided, assessments and reassessments of the dying patient and their family are designed to meet individualized needs. COP.7.2 Care of the dying patient optimizes his or her comfort and dignity. © 2007 Joint Commission International All Rights Reserved

5 Barriers to Quality End Of Life Care
Lack of knowledge on part of health care professionals Aging of the population Delayed access to hospice & palliative care Realities of life limiting diseases Rules & regulations Lack of knowledge of health care professionals can significantly impact how well patients & their families will have their physical, psychological, social & spiritual needs managed through the dying process. Aging population refers to the approximately 70 million individuals reaching age of 65 by the year 2030 (Administration on Aging 2000). Increased life expectancy means increase in number of elderly having to cope with concurrent chronic illness and their associated physical, social and spiritual difficulties. Delayed access refers to the need for more timely referrals by healthcare professionals to hospice & palliative care in order for patients and their families to reap the full benefit of these services. Realities of life limiting diseases refers to the failure to acknowledge that the limits of medicine may lead to futile care. Use of aggressive curative treatments can prolong the dying process and contribute to physical and emotional distress of the patient. Rules and regulations refers to issues regarding access to care, insurance coverage and the potential need to hire a caregiver from outside the family which can contribute to financial barriers to care.

6 Psychosocial well-being
Quality of life differs from person to person. The patient is the only one who can define quality of life which is based on his or her own life experiences, values, and beliefs. It is important to consider each of the dimensions described here from the patient and family perspective. Quality of life must be considered throughout the illness and end of life period to include the time of death and bereavement periods. It is imperative that healthcare respond to the psychological and spiritual needs of patients and families coping with life-threatening illnesses to avoid increasing their suffering and isolation. Physical well-being: The physical well-being of the patient is affected by various symptoms due to organic and metabolic changes, disease progression and debilitation. Physical aspects include functional ability, sleep, rest, and appetite. Pain is one of the primary concerns of terminally ill patients and their family members or caregivers. Family members can develop or may have existing physical needs that impact their ability to care for the patient, as well as their ability to care for themselves. Physical symptoms can manifest during the bereavement period as well. Psychosocial well-being: Patients experience a wide range of emotions, psychological issues/concerns, and losses (such as body image and role/relationship changes) throughout their terminal illness journey and at the end of life. Communication and support are important components in the management of the psychological domain. Quality of Life Issues Physical well-being Psychosocial well-being Well-being Social Spiritual Concept of Suffering Social well–being: The social structure and integrity of the family may be threatened. Becoming a burden to one’s family is often a concern to a patient. Expressions of sexuality may change between partners as illness progresses. Children may show their emotional concerns by isolating themselves or by acting out in school or at home. Financial concerns may arise due to loss of income. Friends and extended family stop visiting, creating social isolation for patient and family. Spiritual well-being: Religion gives expression to a person’s regarding suffering, illness, pain and death. Skillful attention to maintaining a person’s unique meaning of hope can enhance quality of life and help make the dying process more meaningful to the patient and family. Concept of Suffering : Suffering is a highly personal experience and depends on the significance or personal meaning of events and losses. It is a state of severe distress that threatens the intactness of the individual. Suffering may be associated with an event(s) such as fear of physical distress, issues regarding family relationships and other roles, perceptions of self, witnessing another’s distress, an inappropriate focus on cure.

7 Palliative Care & Hospice during End of Life
An overview of the philosophy of hospice and palliative care is that dying is a unique experience and part of the normal life cycle. Support and care is provided using an interdisciplinary team approach with the focus on enhancing the quality of life for persons facing a life-threatening illness across settings. Palliative care can and should co-exist with curative care. Introduction of palliative care earlier in the course of an illness makes it possible to recognize when subtle shifts occur and allows patients, families and professionals to adapt goals accordingly. Goals of care change often throughout the course of illness by integrating physical, psychological, social and spiritual aspects of care. Frequent reassessment and clarification of goals, is needed by the interdisciplinary team, the patient and family. In many healthcare settings, during clinical rotations, students have opportunities to work with patients and families experiencing the dying process.

8 Definition of Palliative Care:
“an approach that improves the quality of life of patients and their families, facing the problems associated with life-threatening illness, through them prevention and relief from suffering, by means of early identification, impeccable assessment, treatment of pain and other problems - physical, psychosocial, and spiritual” (World Health Organization, 2002; Sepulveda et al., 2002). Eligibility for initiation of Palliative Care:  Palliative care is appropriate and can be implemented at any time during the illness experience.

9 Principles of Palliative Care
* The patient and family (as defined by the patient) are a unit of care. * No single discipline can fully address the many concerns that patients and families have during end of life, therefore utilizing the expertise and combined efforts of the interdisciplinary team members is the key to providing holistic, comprehensive care. * The patient and family are at the center of the team. * Education and support of the patient and family about the dying process provides essential information and decreases fear. Information needs may include: ·         Management of physical care ·         Medications ·         Spiritual and emotional needs ·         Guidance with practical issues such as insurance coverage ·         Scheduling of treatments and what to anticipate ·         Coping strategies ·         Bereavement support * Professional caregivers should support and be an advocate for the needs of the patient and his family so that death is a more meaningful experience for them

10 Hospice Definition: Eligibility for Hospice:
Hospice care is the support and care for persons in the final phases of an incurable disease so that they may live as fully and comfortably as possible (NHPCO, 2000). Hospice also supports the surviving family through the dying and bereavement process (Egan & Labyak, 2001). Hospice provides comprehensive palliative, medical and supportive services across a variety of settings and is based on the understanding that dying is a part of the normal life cycle. Care can be provided in the home, in residential facilities, long-term care facilities and other settings (i.e. prisons). Eligibility for Hospice: Enrollment is limited to those expected to die within six months. The Medicare Hospice benefit has currently expanded its hospice service options so that patients/families can receive end of life care long before the last six months of life to better meet the needs of patients dying from chronic illnesses. An additional option that has been made available to patients (and their families) who are actively in the dying process or have been determined as terminal is that they can be designated as an inpatient hospice.

11 Principles of Hospice Care
* The Family is the unit of care * Care involves an interdisciplinary approach to expert medical and nursing care, pain management, and emotional and spiritual support * Patient has the right to die pain-free and with dignity * Loved ones will receive necessary support * Focus is on caring, not curing * Care is provided primarily in the home, but can also be provided in free-standing hospice facilities, hospitals, and nursing homes (ACS, 2004, p. 532)

12 (also called a Living Will)
Advance Directive (also called a Living Will) An Advance Directive is a document that lets patients state their wishes about medical care in the event that they develop a terminal or irreversible conditions and can no longer make their own medical decisions (TxPEC, 2009). An Advance Directive (Living Will) becomes effective when the patient’s physician certifies in writing that the patient has a terminal or irreversible condition, and after the patient’s physician writes a “do not resuscitate (DNR) order specifying the patients wishes to withhold medical care. The patient may revoke the Directive at any time. Hospitals are required by Medicare Conditions of Participation and JCAHO to inquire about Advanced Directive status upon the patient’s admission and to instruct the patient about his/her option of having an Advance Directive if so desired. If the patient has a Directive, the hospital is required to make it part of the patient’s medical record. However, hospitals are not required to make the patient create an Advance Directive or Power of Attorney for medical care. (TxPEC, 2009)

13 Other Laws and Directives related to End of Life:
  Federal Patient Self Determination Act is a law that allows for patients to make choices about what is done to their bodies while they are receiving medical care through the development of the Advanced Directive (Living Will).   Texas Natural Death Act (1991) is a state law that allows the withdrawal or withholding of medical care to be requested by a competent adult who is terminally ill. Texas Medical Power of Attorney Lets the patient name someone to make decisions about his/her medical care-including decisions about life support-if he/she can no longer speak for him/herself. The patient’s attending physician must certify in writing that the patient is unable to make health care decisions, and file the certification in the patient’s medical record.  This person does not necessarily have to be a family member.  This person may be a Court Appointed Guardian to make decisions for an individual who is deemed incapable of making an informed decision.

14 Nursing & Advance Directives
Nurses have a unique opportunity to enact the federal Patient Self-Determination Act through communication with patients and by assisting them explore their values and beliefs regarding the end of life. The nurse can promote patient comfort with decisions concerning advance directives. They can also be sure that the entire healthcare teams is aware of the patient’s wishes (Nevidjon & Sowers, 2000). Note: Any problems/questions associated with Advance Directives or Durable Power of Attorney should be referred to the nurse in charge. Each organization has its own policies about who can/can’t witness a signature. For more information also visit:

15 References Administration on Aging. (2000). Older population by age: Retrieved from Chart-numbers.html. American Cancer Society (2004). A cancer source book for nurses, 8th ed. Sudbury, MA: Jones & Bartlett Publishers International. Egan, K.A., & Labyak, M.J. (2001). Hospice Care: A model for quality end-of-life care. In B. R. Ferrell, & N. Coyle (eds.), Textbook of palliative nursing (pp. 7-26). New York, NY: Oxford University Press. National Hospice AND Palliative Care Organization (NHPCO) (2000). Hospice fact sheet. Alexandria, V.A.: Author Retrieved from www. Nevidjon, B.M. & Sowers, K.W. (2000). A nurse’s guide to cancer care. Philadelphia: Lippincott Williams & Wilkins. Sepulveda, C., Marlin, A., Yoshida, T., & Ulrich, A. (2002). Palliative Care: The World Health Organization’s global perspective Journal of Pain & Symptom Management, 24(2) Texas Partnership for End of Life Care (TxTEC) (2009). Retrieved from:

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