3.-Nursing-and-End-of-Life-Care-1os.pptx

THE NURSNG FOR END OF LIFE PATIENTS

1. Nursing and End-of-life Care Prepared by: Level 3 Faculty

2. Technology and end-of-life care

3. Technology and end-of-life care Telemedicine is also becoming increasingly important in hospice care for communities nationwide, but the technology is making its biggest impact in rural areas where clinicians may have to travel significant distances to reach the patient or in areas that are not accessible to hospice or palliative care clinicians. Telehealth palliative care service service for patients in rural areas that are too sparsely populated to support in-home clinician visits.

4. Technology and end-of-life care Ambient Assisted Living (AAL) involves the use of devices and ways to ensure that the older persons in the home stay safe and are able to age in place. It includes smart devices, wireless networks, software application, computer, and medical sensors. These technologies make aging in place possible. AAL makes lives easier and to some extent, self-dependent. The methods and techniques used in AAL are user-centric and are integrated into the living environment of the individuals. For older adults, it is a boon as it helps in the prevention, curing and enhancing their wellness.

5. Technology and end-of-life care

6. Technology and end-of-life care

7. Sociocultural context Nurses are often present through the dying process and at the moment of death. Some individuals prefer a peaceful death at home rather than in the hospital. Nurses also need to determine whom to call, and when, as the impending death draws near Nurses also need to be knowledgeable about the client’s death-related rituals, such as last rites chanting at the bedside, and other practices, such as special procedures for washing, dressing, positioning, shrouding, and attending the dead.

8. Sociocultural context

9. Sociocultural context Amish Funerals are conducted in the home without a eulogy, flower decorations, or any other display; caskets are plain and simple, without adornment. At death, a woman is usually buried in her bridal dress. One is believed to live on after death, with either eternal reward in heaven or punishment in hell. The Amish permit organ donation with the exception of heart transplants (the heart is the soul of the body).

10. Sociocultural context

11. Sociocultural context Catholic and Orthodox A priest anoints the sick. Other sacraments before death include reconciliation and Holy Communion.

12. Sociocultural context Church of Jesus Christ of Latter-day Saints (Mormons) A sacrament may be administered if the client requests it. Protestant No last rites are provided (anointing of the sick is accepted by some groups). Prayers are given to offer comfort and support.

13. Sociocultural context Jehovah’s Witnesses Members are not allowed to receive a blood transfusion. Members believe that the soul cannot live after the body has died.

14. Sociocultural context Islam Second-degree male relatives such as cousins or uncles should be the contact people and determine whether the client or family should be given information about the client. The client may choose to face Mecca (west or southwest in the United States). The head should be elevated above the body. Discussions about death usually are not welcomed. Stopping medical treatment is against the will of Allah (Arabic word for God). Grief may be expressed through slapping or hitting the body. If possible, only a same-sex Muslim should handle the body after death; if not possible, non-Muslims should wear gloves so as not to touch the body. Some Muslims permit organ transplant for the purpose of saving human life.

15. Sociocultural context Judaism A client placed on life support should remain so until death. A dying person should not be left alone (a rabbi’s presence is desired). Autopsy and cremation are usually not allowed. Some generally oppose prolonging life after irreversible brain damage.

16. Sociocultural context Hinduism Rituals include tying a thread around the neck or wrist of the dying person, sprinkling the person with special water, and placing a leaf of basil on the person’s tongue. After death, the sacred threads are not removed, and the body is not washed. Some prefer cremation and desire to cast the ashes in a holy river.

17. Sociocultural context Buddhism A shrine to Buddha may be placed in the client’s room. Time for meditation at the shrine is important and should be respected. Clients may refuse medications that may alter their awareness (e.g., opioids). After death, a monk may recite prayers for 1 hour (need not be done in the presence of the body). Buddhists in the United States encourage organ donation and consider it an act of mercy.

18. Sociocultural context African Americans Members discuss issues with the spouse or older family member (elders are held in high respect). Family is highly valued and is central to the care of terminally ill members. Open displays of emotion are common and accepted. Many prefer to die at home.

19. Sociocultural context Asian Americans Family members usually make decisions about care and often do not tell the client the diagnosis or prognosis. Dying at home may be considered bad luck with some ethnic groups. Organ donation may not be allowed in some ethnic groups.

20. Sociocultural context Hispanic and Latino groups The family generally makes decisions and may request to withhold the diagnosis or prognosis from the client. Extended-family members often are involved in end-of-life care (pregnant women may be prohibited from caring for dying clients or attending funerals). Several family members may be at the dying client’s bedside. Vocal expression of grief and mourning is acceptable and expected. Members may refuse procedures that alter the body, such as autopsy. Dying at home may be considered bad luck with some ethnic groups.

21. Sociocultural context Native Americans Family meetings may be held to make decisions about end-of-life care and the type of treatments that should be pursued. Some groups avoid contact with the dying (may prefer to die in the hospital).

22. Nurses’ attitudes toward death Nursing the terminally ill and supporting their families require special skills, personal awareness, and ongoing self-care. Because of their daily, hands-on care and the mandate of the profession to comfort the patient, nurses have a heightened proximity to the experiences and feelings of their patients.

23. Nurses’ attitudes toward death It is natural and helpful to be affected by the people being cared for, but witnessing the transition from active treatment to dying can be challenging, especially in the absence of relevant communication about end-of-life choices. Skills in communicating with terminally ill patients and their families are among the nine essential areas of end-of-life (EOL) care.

24. Nurses’ attitudes toward death Some individuals may think of death as the worst occurrence in life and do their best to avoid thinking or talking about death—especially their own. Nurses are not immune to such attitudes. Nurses who are uncomfortable with dying clients tend to impede the clients’ attempts to discuss dying and death in these ways:

25. Nurses’ attitudes toward death • Change the subject (e.g., “Let’s think of something more cheerful” or “You shouldn’t say things like that”). • Offer false reassurance (e.g., “You are doing very well”). • Deny what is happening (e.g., “You don’t really mean that” or “You’re going to live until you’re a hundred”). • Be fatalistic (e.g., “Everyone dies sooner or later” or “What’s meant to be, will be”). • Block discussion (e.g., “I don’t think things are really that bad”) and convey an attitude that stops further discussion of the subject.

26. Nurses’ attitudes toward death • Be aloof and distant or avoid the client. • “Manage” the client’s care and make the client feel increasingly dependent and powerless.

27. Nurses’ attitudes toward death Caring for the dying and the bereaved is one of the nurse’s most complex and challenging responsibilities, bringing into play all the skills needed for holistic physiologic and psychosocial care. The American Nurses Association position statement Nurses’ Roles and Responsibilities in Providing Care and Support at the End of Life (2016) states that the nurse must demonstrate competence and compassion, communication with families, and collaboration with other members of the healthcare team to provide symptom management and support, and develop realistic plans of decision-making and care that reflect the client and family wishes.

28. Nurses’ attitudes toward death To be effective, nurses must confront their own attitudes toward loss, death, and dying, because these attitudes will directly affect their ability to provide care

29. Patient and family concerns Death-Related Legal Issues Laws that describe issues involving decisions about death and dying are constantly changing. These include advance directives, do not resuscitate, organ donation, and aid in dying. Nurses must remain knowledgeable about the legal issues and engage with the healthcare team to advocate for clients. Advance Healthcare Directives Physician Orders for Life-Sustaining Treatment (POLST). The POLST is signed by both the client or healthcare decision maker and the primary care provider (physician, physician assistant, or nurse practitioner), and specifies current preferences for resuscitation; medical interventions such as comfort measures, intravenous medications, and noninvasive airway support; and artificial nutrition and hydration

30. Patient and family concerns 3 . Do-Not-Resuscitate Orders Do-not-resuscitate orders, also referred to as DNR, no code blue, no code, allow natural death (AND), and similar terms, refer to the documentation of the decision to refrain from cardiopulmonary resuscitation (CPR) should the client’s heart or breathing cease from an irreversible underlying condition . 4 . Organ Donation There are two main approaches to organ donation : presumed consent and explicit consent. In countries that follow the explicit consent system, such as the Netherlands, no one is considered a donor unless they voluntarily ‘opt-in’ to become one. However, in the presumed consent system, everyone is considered a donor unless they officially ‘opt-out’ of the system.

31. Patient and family concerns 5. Euthanasia, Aid in Dying These statutes are very explicit in delineating who is eligible for this assistance and the process for applying, being approved, and implementing. MAID, in which the individual self-administers a lethal dose of medications, is not the same as active euthanasia, in which the lethal dose is administered to the individual by a physician. In some countries, both MAID and active euthanasia are illegal, while in others, one or both may be legal.

32. Roles of nurses provides relief from pain and other distressing symptoms; • affirms life and regards dying as a normal process; • intends neither to hasten nor postpone death; • integrates the psychological and spiritual aspects of patient care; • offers a support system to help patients live as actively as possible until death; • offers a support system to help the family cope during the patient’s illness and in their own bereavement; • uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated; • will enhance quality of life, and may also positively influence the course of illness;

33. Roles of nurses Meeting the Physiologic Needs of the Dying Client Providing Spiritual Support Supporting the Family Postmortem Care Caring for the dying and the bereaved is one of the nurse’s most complex and challenging responsibilities. • Death-related legal issues include advance healthcare directives, do-not-resuscitate orders, organ donation, and euthanasia, aid in dying. • Nurses’ attitudes about death and dying directly affect their ability to provide care. • Nurses must consider the entire family as requiring care in situations involving loss, especially death. • Dying clients require open communication, physical help, and emotional and spiritual support to ensure a peaceful and dignified death. They need to maintain a sense of control in managing the events preceding death.

34. Caring for the dying and the bereaved is one of the nurse’s most complex and challenging responsibilities. • Death-related legal issues include advance healthcare directives, do-not-resuscitate orders, organ donation, and euthanasia, aid in dying. • Nurses’ attitudes about death and dying directly affect their ability to provide care. • Nurses must consider the entire family as requiring care in situations involving loss, especially death. • Dying clients require open communication, physical help, and emotional and spiritual support to ensure a peaceful and dignified death. They need to maintain a sense of control in managing the events preceding death.

35. Hospice care History : The hospice movement was founded by the physician Cecily Saunders in London, England, in 1967. Hospice care focuses on support and care of the dying client with a life expectancy of 6 months or less and the family, with the goal of facilitating a peaceful and dignified death. Hospice care is based on holistic concepts and emphasizes teambased care to improve quality of life rather than cure, support the client and family through the dying process, and support the family through bereavement .

36. Hospice care The principles of hospice care can be carried out in a variety of settings, the most common being the home, the hospital, or a nursing home–based unit. Services focus on symptom control and pain management. Commonly, clients are eligible for hospice care or hospice insurance benefits when certified by a physician to be likely to die within 6 months. Hospice care is always provided by health professionals and nonprofessionals to ensure a full range of care services.

37. Hospice care Hospice care is delivered by a multidisciplinary team of physicians, nurses, chaplains, social workers, certified nursing aides, volunteers, and bereavement counselors. Hospice care is a model for compassionate, holistic, and medically managed end-of-life services.

38. Hospice care The diagnoses most commonly treated were cancer (38.3%), d ebility unspecified (15.3%), heart disease (11.7%), d ementia (11.1%), and lung disease (7.9%). The median length of stay in 2008 was just 21.3 days. The average length of service was 69.5 days.

39. Hospice care

40. National Hospice and Palliative Care Council of the Philippines (Hospice Philippines, Inc.) - a non-stock, non-profit umbrella organization of palliative and hospice care providers in the Philippines. Department of Health (DOH) - the principal health agency of the government responsible for ensuring access to basic public health services for all Filipinos through the provision of quality health care and regulation of providers of health goods and services.

41. Mandatory Palliative and Hospice Services. - All government and private hospitals shall provide palliative and hospice care services to patients with life-threatening, chronic debilitating 2 illness, and/or progressively degenerative disease/condition. Hospitals are required to link with a referral and aftercare network that is organized and made functional by all provincial, city, and municipal governments under the guidance and monitoring of the DOH.

42. Rural health units, health centers, and health offices are required to develop community-based hospice units, as well as home-based or nearhome palliative care programs in coordination with government-owned and privately-owned hospices in the local government units.

43. Phil Health Benefits Package. - Pursuant to this Act, the PhilHealth shall include in its present Z-Benefit package, in-patient palliative services, outpatient hospice care, and home-based palliative care. Tax Exemptions. - Any donation or bequest made to the DOH and/or other DOH-accredited Palliative and Hospice Care providers under this Act that is, directly, and exclusively intended for palliative and hospice care program(s) shall be exempt from donor’s tax and the same shall be considered as allowable deduction from the gross income of the donor, in accordance with the provisions of the National Internal Revenue Code of 1997, as amended; Provided, that such donation shall not be disposed of, transferred, or sold by the done.

44. What does hospice care provide? All hospice providers must offer certain services. But they tend to have different approaches to service, staffing patterns, and types of support services offered. Palliative care and symptom control Palliative care may also be called supportive care, symptom management, or comfort care. It can be given separately from hospice care (for example, while still in active cancer treatment), but It's often a part of hospice care that no longer being treated because it has worsened.

45. The main goal of including palliative care into hospice services is to help patients be comfortable while allowing them to enjoy the last stage of life. This means that discomfort, pain, nausea, and other side effects are managed to make sure that you feel as good as possible, yet are alert enough to enjoy the people around you and make important decisions.

46. Home care and inpatient hospice care Although most hospice care is centered in the home, there might be times when you need to be in a hospital, extended-care facility, or an inpatient hospice center. Your home hospice team can arrange for inpatient care and will stay involved in your care and with your family. You can go back to in-home care when you and your family are ready.

47. Spiritual care Since people differ in their spiritual needs and religious beliefs, spiritual care is set up to meet your specific needs. It might include helping you look at what death means to you, helping you say good-bye, or helping with a certain religious ceremony or ritual.

48. Family meetings Regularly scheduled meetings, often led by the hospice nurse or social worker, keep family members informed about your condition and what to expect. These meetings also give everyone a chance to share feelings, talk about what’s happening and what’s needed, and learn about death and the process of dying. Family members can get great support and stress relief through these meetings. Daily updates may also be given informally as the nurse or nursing assistant talks with you and your caregivers during routine visits.

49. Coordination of care The hospice team coordinates and supervises all care 7 days a week, 24 hours a day. This team is responsible for making sure that all involved services share information. This may include the inpatient facility, the doctor, and other community professionals, such as pharmacists, clergy, and funeral directors. You and your caregivers are encouraged to contact your hospice team if you’re having a problem, any time of the day or night. There’s always someone on call to help you with whatever may arise. Hospice care assures you and your family that you are not alone and can get help at any time.

50. Respite care For patients being cared for at home, some hospice services offer respite care to allow friends and family some time away from caregiving. Respite care can be given in up to 5-day periods of time, during which the person with cancer is cared for either in the hospice facility or in beds that are set aside in nursing homes or hospitals. Families can plan a mini-vacation, go to special events, or simply get much-needed rest at home while you’re cared for in an inpatient setting.

51. Bereavement care Bereavement is the period of mourning after a loss. The hospice care team works with surviving loved ones to help them through the grieving process. A trained volunteer, clergy member, or professional counselor provides support to survivors through visits, phone calls, and/or other contact, as well as through support groups. The hospice team can refer family members and caregiving friends to other medical or professional care if needed. Bereavement services are often provided for about a year after the patient’s death.

52. Hospice offers four levels of care, as defined by Medicare, to meet the varying needs of patients and their families. The four levels of hospice include routine home care, continuous home care, general inpatient care, and respite care.

53. What is the five stages of hospice care? By taking these steps, individuals and their families can better prepare themselves for what lies ahead in the five stages of palliative care: diagnosis/prognosis; treatment; s ymptom management ; end-of-life planning; and bereavement

54. The hospice team develops a care plan that meets each patient’s individual needs for pain management and symptom control. The team usually consists of: ◆ The person receiving care ◆ The person’s family/caregiver ◆ The person’s personal physician and/or hospice physician (or medical director) ◆ Nurses ◆ Home health aides ◆ Social workers ◆ Counselors and spiritual caregivers ◆ Trained volunteers ◆ Other professionals, such as speech, physical, and occupational therapists, as needed

55. What kind of services should I expect from a hospice? ◆ Physician services for the medical direction of the patient’s care, provided by either the patient’s personal physician or a physician affiliated with a hospice program ◆ Regular home care visits by registered nurses and licensed practical nurses to monitor the patient’s condition and to provide appropriate care and maintain patient comfort ◆ Home health aide and homemaker services, attending to the patient’s personal needs ◆ Chaplain services for the patient and/or loved ones

56. What kind of services should I expect from a hospice? ◆ Social work and counseling services ◆ Bereavement counseling to help patients and their loved ones with grief and loss ◆ Medical equipment (i.e., hospital beds) ◆ Medical supplies (i.e., bandages and catheters) ◆ Medications for symptom control and pain relief ◆ Volunteer support to assist loved ones ◆ Physical, speech, and occupational therapy ◆ Dietary counseling

57. What kind of support is available to the family/caregiver? Support can take many different forms, including visits with the patient and family members; telephone calls to loved ones, including family members who live at a distance, about the patient’s condition; and the provision of volunteers to assist with patient and family needs.

58. What kind of support is available to the family/caregiver? Counseling services for the patient and loved ones are an important part of hospice. After the patient’s death, bereavement support is offered to families for at least one year. These services can take a variety of forms, including telephone calls, visits, written materials about grieving, and support groups. Individual counseling may be offered by the hospice or the hospice may make a referral to a community resource.

59. How does hospice work to keep the patient comfortable? M any patients experience pain and other distressing symptoms as illness progresses. Hospice staff receive special training to effectively anticipate, assess, treat, and prevent all types of physical symptoms that cause discomfort and distress. Because symptom management, especially pain, is such an important component of hospice, many hospice programs have developed ways to measure how well they do in this area through surveys and studies. Hospice staff work with the patient’s physician to make sure that medication, therapies, and procedures are designed to achieve the goals o utlined in the patient’s care plan. That plan is evaluated frequently to reflect changes and new goals

60. How do I ensure that quality hospice care is provided? Many hospices use tools to evaluate how well they are doing in relation to quality hospice standards. In addition, most programs conduct family satisfaction surveys to get feedback on the performance of their programs. To assist hospice programs in these efforts, the National Hospice and Palliative Care Organization has developed recommended standards — entitled “Standards of Practice for Hospice Programs” — as one means of self- and field-evaluation.

61. ASSISTED SUICIDE

62. ASSISTED SUICIDE Right to Die One concern of nursing is the question of whether an older adult has the right to end his or her life by way of physician-assisted suicide (PAS) or by taking his or her owN.

63. ASSISTED SUICIDE The American Nurses Association (ANA) advises nurses not to participate i n assisted suicide. It is a violation of the ANA’s Code of Ethics for Nurses to participate in assisted suicide; however, if a patient wants their life terminated by the withdrawal of specific therapies, that does not mean withdrawal of care.

64. ASSISTED SUICIDE ANA (1992) takes the position that nurses ethically support the provision of compassionate and dignified end-of-life care no matter what decision is made, including the withholding or withdrawing of life-sustaining treatment.

65. ASSISTED SUICIDE The natural extension of this perspective is the practice of physician-assisted suicide (PAS) for the terminally ill, which operates under very strict guidelines. For example, Washington state, which passed the PAS Law in 2009, states that the following conditions must exist:

66. ASSISTED SUICIDE The patient must not have any neuromedical or psychiatric conditions that impair the capacity to reason and process information. The patient must be diagnosed as having less than 6 months to live. The patient must make a request orally and in writing, and have the agreement for PAS approved by two different physicians. After a 15-day waiting period, the patient must then make the request again.

67. ASSISTED SUICIDE Euthanasia, a Greek word meaning “good death,” is popularly known as “mercy killing.” Active euthanasia involves actions to bring about the client’s death directly, with or without client consent. An example of this would be the administration of a lethal medication to end the client’s suffering. Regardless of the caregiver’s intent, active euthanasia is forbidden by law and can result in criminal charges of murder.

68. ASSISTED SUICIDE A variation of active euthanasia is assisted suicide, or giving clients the means to kill themselves if they request it (e.g., providing lethal doses of pills). Some countries or states have laws permitting assisted suicide for clients who are severely ill, who are near death, and who wish to commit suicide.

69. ASSISTED SUICIDE Although some people may disagree with the concept, assisted suicide is currently legal in the states of California, Montana, Oregon, Vermont, and Washington, whereas it is specifically prohibited in many other states. In any case, the nurse should recall that legality and morality are not the same thing. Determining whether an action is legal is only one aspect of deciding whether it is ethical. The questions of suicide and assisted suicide are still controversial in Western society. The ANA’s position statement on assisted suicide and active euthanasia (2013) states that both active euthanasia and assisted suicide are in violation of the Code of Ethics for Nurses.

70. ASSISTED SUICIDE Passive euthanasia, more commonly referred to now as withdrawing or withholding life-sustaining therapy (WWLST), involves the withdrawal of extraordinary means of life support, such as removing a ventilator or withholding special attempts to revive a client (e.g., giving the client “no code” status) and allowing the client to die of the underlying medical condition. WWLST may be both legally and ethically more acceptable to most people than assisted suicide.

71. ASSISTED SUICIDE Nurses are ethically prohibited from administering medical aid in dying medication. Yet they must be comfortable supporting patients with end-of-life conversations, assessing the context of a medical aid in dying request (e.g., concern about treatable depression or coercion), advocating optimized palliative and hospice care services, and knowing about aid in dying laws and how those affect practice.

72. ASSISTED SUICIDE Nurses should reflect on personal values related to medical aid in dying and be aware of how those values inform one’s ability to provide objective information in response to a patient’s request. ANA recognizes that medical aid in dying is a controversial topic that encompasses a plurality of views. Arguments for medical aid in dying are based on respect for patients’ self-determination, a desire to prevent unnecessary suffering, assurance that patients have access to the full range of care options at the end of life, and consideration that medical aid in dying is a last act of autonomy.

73. ASSISTED SUICIDE Recommendations “It is the shared responsibility of professional nursing organizations to speak for nurses collectively in shaping health care and to promulgate change for the improvement of health and health care” (ANA, 2015a, p. 36). Therefore, the American Nurses Association supports recommendations that nurses:

74. ASSISTED SUICIDE Remain objective when discussing end-of-life options with patients who are exploring medical aid in dying. Have an ethical duty to be knowledgeable about this evolving issue. Be aware of their personal values regarding medical aid in dying and how these values might affect the patient-nurse relationship. • Have the right to conscientiously object to being involved in the aid in dying process.

75. ASSISTED SUICIDE Never “abandon or refuse to provide comfort and safety measures to the patient” who has chosen medical aid in dying (Ersek, 2004, p. 55). Nurses who work in jurisdictions where medical aid in dying is legal have an obligation to inform their employers that they would predictively exercise a conscience-based objection so that appropriate assignments could be made. • Protect the confidentiality of the patient who chooses medical aid in dying.

76. ASSISTED SUICIDE Remain objective and protect the confidentiality of health care professionals who are present during the aid in dying process, as well as the confidentiality of those who choose not to be present. • Be involved in end-of-life policy discussions and development (Ersek, 2004) on local, state, and national levels, including advocating for palliative and hospice care services. • Furthermore, research is needed to better understand the phenomenon.

77. DISEASE TRAJECTORY What Is a Trajectory of Dying? “Trajectories of dying” were first articulated by researchers at the Institute of Medicine in the late 1990s as a conceptual framework for understanding the experience of illness and dying in America today. The trajectories map the course of decline in terms of “shape” and “duration” – the particular path the illness takes toward death and the speed with which it progresses (Field & Cassell, 1997).

78. DISEASE TRAJECTORY Trajectories are also often predictive, though not determinative, of where a patient will die, and they have significant influence over the opportunity for and timing of advance care planning and palliative or hospice care. Different trajectories of illness require different preparations, coping strategies, and responses. An understanding of the trajectories offers insights into the lived experience of people who are ill and those providing care for a loved one, and helps clinicians and their patients anticipate and plan for the challenges posed by the trajectory.

79. DISEASE TRAJECTORY The Sudden Death Trajectory – as exemplified by Tessa’s story – was the most common throughout human history until very recently. The vast majority of deaths prior to the mid-20th century were instantaneous from accidental injury, or swift following brief episodes of acute illness (e.g., infection, pneumonia, gastrointestinal disease and diarrhea, nephritis, diphtheria).

80. DISEASE TRAJECTORY

81. DISEASE TRAJECTORY Terminal Disease Trajectory The Terminal Disease Trajectory was not unknown prior to the 20th century: Cancer followed this trajectory, usually over a matter of weeks or at most months, while the years-long decline associated with tuberculosis was a harbinger of our modern way of dying. The duration of many eventually terminal conditions has stretched to match and exceed that of tuberculosis, and the degree of function maintained during the duration can be much higher now due to modern treatments.

82. DISEASE TRAJECTORY An illness with a terminal trajectory is one that unequivocally should be accompanied by advance care planning and palliative care, ideally starting at diagnosis. Disease progression, while delayed almost to a standstill in some cases by effective treatments, will eventually result in the person’s death. There is time, typically, to prepare mentally, emotionally, spiritually, and practically, and to document the person’s preferences and decisions so that they are well known to family members and professional caregivers. Throughout, palliative care can maximize comfort, increase coping, manage side effects of treatment, and support family and loved ones.

83. DISEASE TRAJECTORY

84. DISEASE TRAJECTORY Major Organ Failure Trajectory The Major Organ Failure Trajectory is characteristic of chronic and progressive heart, lung, liver, kidney, and some neurological diseases: Onset and progression of the illness may be gradual, slowly eroding function, and often punctuated by crises, “exacerbations” of the underlying disease or caused by some accompanying acute illness such as pneumonia or flu.

85. DISEASE TRAJECTORY Persons on this path rarely think of themselves as “dying,” and their family members are often shocked by the death, experiencing it as sudden even after years of an accelerating pattern of crisis-recovery-declinecrisis (Field & Cassel, 1997). Because any one crisis could be “the end,” progression of the disease to an end or terminal stage can be imperceptible, even to alert clinicians and family members.

86. DISEASE TRAJECTORY

87. DISEASE TRAJECTORY Frailty Trajectory The Frailty Trajectory was identified by Dr. Joanne Lynn (2004): This trajectory is characteristic of Alzheimer’s and other dementias, some neurodegenerative diseases such as multiple sclerosis or Parkinson’s, “failure to thrive,” and “debility.” In this trajectory, decline sets in very slowly and may be well along before any formal disease diagnosis is made. Sometimes the diagnosis may simply be advanced age (or, as is sometimes said with mordant humor, “TMB” for “too many birthdays”).

88. DISEASE TRAJECTORY Frailty is also the trajectory that is most likely to present very difficult determinations of the effectiveness of treatments or therapies, assessments of quality of life, and perhaps agonizing decisions over withholding or withdrawing life-sustaining treatments. While palliative care from diagnosis would certainly be appropriate, hospice enrollment can be forestalled by nursing facility resistance or simply by the difficulty of identifying the end stage.

89. DISEASE TRAJECTORY Catastrophic Event Trajectory- The Catastrophic Event Trajectory combines aspects of the Sudden Death and Frailty trajectories: A sudden health event occurs – heart attack, stroke, aneurysm, brain injury from a fall or accident or illness, a hip fracture – but is not immediately fatal, either on its own or because of some emergency intervention.

90. DISEASE TRAJECTORY The person survives, but is rendered extremely impaired – suddenly plunged into a state of frailty and dependence of an uncertain, but likely permanent, duration. Sometimes the person is left unconscious and dependent on long-term life-sustaining treatments such as a ventilator or tube feeding or both, sometimes for years. Likely the number is significantly higher now; the better we get at rescuing patients from cardiac death, the more often we condemn .

91. DISEASE TRAJECTORY

92. DISEASE TRAJECTORY

93. DISEASE TRAJECTORY

94. DISEASE TRAJECTORY

95. Thank you! QUESTIONS ???