HealthStream Regulatory Script

HealthStream Regulatory Script [End-of-Life Care] Version: [May 2005] Lesson 1: Introduction Lesson 2: Palliative vs. Curative Care Lesson 3: Barriers to Adequate Palliative Care Lesson 4: Addressing the Needs of the Dying Patient Lesson 5: Addressing the Needs of the Family

Lesson 1: Introduction 1001 Introduction Welcome to the introductory lesson on end-of-life care. IMAGE: 1001.GIF Death can be frightening. This can be especially true for patients in the terminal stages of chronic disease. These patients often wish for a good death. However, they often fear that they will die alone, in pain, abandoned by their caregivers. As your partner, HealthStream strives to provide its customers with excellence in regulatory learning solutions. As new guidelines are continually issued by regulatory agencies, we work to update courses, as needed, in a timely manner. Since responsibility for complying with new guidelines remains with your organization, HealthStream encourages you to routinely check all relevant regulatory agencies directly for the latest updates for clinical/organizational guidelines. Point 1 of 5 2

1002 Introduction: Role of the Clinician Clinicians must provide excellent end-of-life care to all dying patients. IMAGE: 1002.GIF In this way, clinicians can: Help patients have a good death. Calm the fears of dying patients. Point 2 of 5

1003 Course Rationale This course will teach you how to provide excellent end-of-life care. NO IMAGE You will learn about: Palliative vs. curative care Potential barriers to palliative care Guidelines for providing palliative care according to a patient s wishes for a good death Guidelines for helping loved ones when a patient is dying Point 3 of 5

1004 Course Goals After completing this course, you should be able to: NO IMAGE Distinguish between palliative and curative care. Identify potential barriers to adequate palliative care, as well as methods for overcoming these barriers. Recognize the key components of a palliative care consultation, including how to meet patient needs in each key area. List the needs typically associated with the family members of a dying patient, including clinical best practices for meeting these needs. Point 4 of 5

1005 Course Outline This introductory lesson gives the course rationale, goals, and outline. FLASH ANIMATION: 1005.SWF/FLA Lesson 2 presents background information on end-of-life care. Lesson 3 provides information on potential barriers to adequate palliative care. Lesson 4 presents specific guidelines for providing palliative care. Finally, lesson 5 describes practices and guidelines for addressing the needs of the family when a patient is dying. Point 5 of 5

Lesson 2: Curative vs. Palliative Care 2001 Introduction Welcome to the lesson on curative vs. palliative care. FLASH ANIMATION: 2001.SWF/FLA Point 1 of 17

2002 Objectives After completing this lesson, you should be able to: NO IMAGE Distinguish between curative and palliative care. Recognize key features of palliative care. List benefits of using palliative and curative care together. Point 2 of 17

2003 Causes of Death: Acute vs. Chronic In 1900, most people died of infectious disease. Death was rapid and certain. IMAGE: 2003.GIF Death comes differently in the industrialized world today. Today, about 70% to 80% of all people die later in life. Death occurs due to chronic or degenerative disease [glossary]. This type of disease is not rapid. Instead, patients experience: Slow onset of symptoms Gradual decline in health Point 3 of 17

2004 Care of Disease: Acute vs. Chronic When treating acute infectious disease, the goal is to cure the patient. If the cure is successful, the patient recovers. If the cure is unsuccessful, the patient dies. IMAGE: 2004.GIF Care of chronic disease tends to be more complex. Remember: Chronic disease has a slow onset and a long course. Therefore, care often has two phases: Cure Comfort Let s take a closer look at each. Point 4 of 17

2005 Cure In the early stages of chronic disease, the goal is often to cure the patient. IMAGE: 2005.GIF Monitoring, diagnostic tests, and treatment are aimed at: Finding the cause of the disease Eliminating the cause, if possible In some cases, curative care is successful. In these cases, the patient returns to full health. Point 5 of 17

2006 Comfort In many cases of chronic disease, curative care is not entirely successful. IMAGE: 2006.GIF Sooner or later: The patient s health continues to decline. The patient moves into the terminal stages of the disease. The focus of care then shifts from cure to comfort. Point 6 of 17

2007 Palliative Care: Definition Comfort care for patients near the end of life is commonly called palliative care. IMAGE: 2007.GIF The World Health Organization (WHO) definition of palliative care is: the active total care of patients whose disease is not responsive to curative treatments. Control of pain, of other symptoms, and of psychological, social, and spiritual problems is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. On the following screen, let s take a closer look at the who, what, when, where, and why of palliative care. Note: This lesson provides an overview of palliative care. More detailed guidelines for providing palliative care are presented in lessons 4 and 5. Point 7 of 17

2008 Palliative Care: What and Why Remember: The goal of palliative care it to comfort, not to cure. IMAGE: 2008.GIF Comfort means: Controlling pain and other physical symptoms Treating the dying patient with dignity Respecting the dying patient s cultural beliefs around death and dying Respecting the dying patient s wishes not to receive lifesustaining treatments that do not improve the quality of life Meeting the dying patient s psychological and spiritual needs Meeting the dying patient s social and interpersonal needs In short, palliative care treats the whole person. The goal is to give the patient the highest possible quality of life during his or her final days, weeks, or months. Point 8 of 17

2009 Palliative Care: Who (1) Remember: Palliative care treats the whole person. IMAGE: 2009.JPG Therefore, the care team must be multidisciplinary [glossary]. Members of the care team may include: Physicians Nurses Pharmacists Social workers Counselors Clergy Physical therapists Occupational therapists Music therapists Art therapists Point 9 of 17

2010 Palliative Care: Who (2) All healthcare providers should know about palliative care. IMAGE: 2010.GIF However, the group most commonly associated with palliative care is hospice. Hospice has a complete range of palliative care services. For a patient to qualify for hospice: The patient must have a terminal illness. A medical professional must certify that the patient has no more than six months to live. The patient must agree to give up all curative treatment. Point 10 of 17

2011 Palliative Care: Where A patient may receive palliative care: In the hospital At home At a nursing home At a dedicated hospice facility IMAGE: 2011.GIF Hospice can give palliative care in any of these settings. In hospitals and other healthcare facilities, all clinical staff should know how to provide palliative care. This ensures that all patients will have excellent end-of-life care, whether or not they have hospice. Point 11 of 17

2012 Palliative Care: When Curative care and palliative care are often thought of separately. IMAGE: 2012.GIF Remember: The WHO definition of palliative care states: Palliative care is the active total care of patients whose disease is not responsive to curative treatments. Hospice is an option only in the final stages of terminal disease. Hospice requires patients to give up curative treatment. However, palliative care practices may be used throughout a patient s treatment. This is true even when the goal of treatment is to cure. Let s take a closer look. Point 12 of 17

2013 Integration of Palliative Care: Key Elements IMAGE: 2013.GIF Even when care is focused on cure, it should also give comfort. All care should: Manage pain and other symptoms. Meet the patient s psychosocial needs. Help the patient have the highest possible quality of life. Point 13 of 17

2014 Integration of Palliative Care: Benefits When palliative care and curative care are used together: Quality of life is a priority throughout treatment, not just near the end of life. Patients see that relieving pain and other symptoms is important throughout treatment, not just near the end of life. Patients are less likely to see a shift in focus toward palliative care as a sign that healthcare providers have given up on them. Terminally ill patients have opportunities to find meaning and closure throughout the course of the disease, not just hear the end of life. Curative therapies can be used even when palliative care is the focus. For example, curative local radiation may be used in a palliative way to relieve symptoms of terminal metastatic cancer. IMAGE: 2014.GIF Point 14 of 17

2015 Review FLASH INTERACTION: 2015.SWF/FLA Drag and drop the terms from the list at the bottom to their proper place in the chart. [Curative] The focus is on the disease. This form of care is used mostly in the early stages of chronic disease. The main goal is full recovery. [Palliative] The focus is on the person. This form of care is used mostly in the terminal stages of chronic disease. The main goals are comfort and quality of life. Point 15 of 17

2016 Review Hospice workers can come to hospitals. Therefore, core hospital staff do not need to know about palliative care. a. True b. False TRUE / FALSE INTERACTION Correct: B Feedback for A: Incorrect. This statement is false. All clinical staff should know how to provide palliative services. This ensures that all patients who die in hospitals will have excellent end-of-life care, whether or not they have hospice. Feedback for B: Correct. All clinical staff should know how to provide palliative services. This ensures that all patients who die in hospitals will have excellent end-of-life care, whether or not they have hospice. Point 16 of 17

2017 Summary You have completed the lesson on curative vs. palliative care. NO IMAGE Remember: Chronic disease has a slow onset and a long course Therefore, care often has two overlapping phases: curative care and palliative care. The primary goal of curative care is recovery. The primary goal of palliative care is comfort. Palliative care treats the whole person. Therefore, the care team must be interdisciplinary. The group most commonly associated with palliative care is hospice. Hospice has a full range of palliative care services. All clinical staff should know how to provide excellent palliative care. Curative care and palliative care are often thought of separately. In fact, elements of palliative care should be used throughout treatment. This is true even when the primary focus of care is cure. Using palliative and curative care together can have many benefits. Point 17 of 17

Lesson 3: Barriers to Adequate Palliative Care 3001 Introduction Welcome to the lesson on barriers to palliative care. FLASH ANIMATION: 3001.SWF/FLA Point 1 of 17

3002 Objectives After completing this lesson, you should be able to: NO IMAGE List three key factors that contribute to inadequate end-of-life care for many patients. Identify best practices for providing adequate end-of-life care. Point 2 of 17

3003 Current State of Palliative Care All patients should be able to expect excellent end-of-life care. They should expect to: Die without unnecessary pain or other physical suffering. Die according to their end-of-life preferences and treatment decisions. IMAGE: 3003.GIF In fact, studies have shown that: Many patients have significant pain or other physical symptoms near the end of life. Many clinicians do not know whether their patients want lifesustaining treatment near the end of life. Many clinicians do not follow their patient s end-of-life treatment decisions. Point 3 of 17

3004 Reasons for Inadequate End-of-Life Care Why are so many patients receiving poor care at the end of life? IMAGE: 3004.GIF Reasons include: Failures in communication Bias toward curative care Lack of cultural sensitivity Let s take a closer look at these reasons. Point 4 of 17

3005 Communication Failures: What Patients and clinicians do not always communicate fully. IMAGE: 3005.GIF As a result, clinicians often do not understand what patients want and need near the end of life. The clinician may not meet the patient s needs for: Pain management Spiritual counseling The clinician may give unwanted life-sustaining treatment that: Decreases the patient s quality of life in his or her last days Prolongs the process of dying Increases suffering for the patient Upsets the patient s loved ones Point 5 of 17

3006 Communication Failures: Why Death and dying are never easy topics to discuss. This is true for both the clinician and the patient. IMAGE: 3006.GIF As a result, clinicians may: Offer false hope, instead of giving accurate information. Avoid asking patients what they need and want near the end of life. When clinicians do not ask, patients may not say what they need and want. Reasons for this include: Confusion over unclear information Fear or denial of death Incorrect belief that the clinician, family, and friends already know what they need and want Point 6 of 17

3007 Communication Failures: Correcting Failures Clinicians must understand what their patients need and want. IMAGE: 3007.GIF As a clinician, you can find out what patients need and want by: Improving communication Encouraging patients to complete an advance directive [glossary] Let s take a closer look at each of these methods. Point 7 of 17

3008 Correcting Communication Failures: Improving Communication (1) Certain approaches can help clinicians communicate with patients near the end of life. These approaches include: Begin with open-ended questions. Follow up on the patient s initial responses by asking more questions. Use the patient s own words. Move on to specific questions about palliative care and other end-of-life choices. Ask direct questions about the patient s symptoms. Screen for spiritual or existential concerns. Click on each method to learn more. CLICK TO REVEAL Begin with open-ended questions. Open-ended questions can help you: Understand the patient s view of his or her illness or prognosis. Identify the patient s values, concerns, and goals for care. Follow up on the patient s initial responses by asking more questions. Use the patient s own words. This method: Shows the patient that you are listening. Shows the patient that you understand his or her viewpoint. Encourages the patient to share additional concerns, feelings, fears, etc. Move on to specific questions about palliative care and other end-of-life choices. Ask about: Home care vs. hospital care at the end of life Use of life-sustaining treatment Any specific concerns and fears the patient has shared Ask direct questions about the patient s symptoms. To give appropriate palliative care, you must know your patient s symptoms. Screen for: Pain Fatigue Shortness of breath Symptoms of the illness Depression Screen for spiritual or existential [glossary] concerns. Clinicians are not always comfortable discussing spiritual issues. However, dying patients often have spiritual concerns. If necessary, refer patients to a religious or spiritual advisor. Point 8 of 17

3009 Correcting Communication Failures: Improving Communication (2) Other approaches for communication include: Try a less direct approach to screening for distress. Involve the family. Make sure all terms are clearly defined and understood. Click on each method to learn more. CLICK TO REVEAL Try a less direct approach to screening for distress. Some patients will not give useful answers to direct questions about symptoms and concerns. You may need to take an indirect approach. For example: Ask the patient how family members are dealing with his or her illness. Ask the patient how friends or family members have dealt with a similar illness. Involve the family. Ask the patient for consent to include family members in the conversation. Family members often raise additional issues or concerns. Make sure all terms are clearly defined and understood. To avoid any misunderstandings: Do not use jargon. State diagnoses, prognoses, and care options clearly. Define any terms that may be unfamiliar to patients. Point 9 of 17

3010 Correcting Communication Failures: Advance Directives Patients often do not explain what they need and want near the end of life, because they think that their family, friends, and doctor already know. IMAGE: 3010.GIF In fact, family members and physicians often do not know what patients need and want. Therefore, encourage all adult patients to complete an advance directive. This could be a living will or a healthcare power of attorney. An advance directive helps ensure that a patient s wishes for endof-life care will be respected, whenever the time comes. Point 10 of 17

3011 Review A patient has a prognosis of less than six months to live. Communicate effectively with this patient by: a. Reassuring the patient that he should not give up hope for a full recovery. b. Informing the patient of his prognosis using medical and technical jargon. c. Strongly encouraging the patient to enroll in clinical trials of a promising new drug. d. Asking open-ended questions to help identify the patient s values, concerns, and goals for care. MULTIPLE CHOICE INTERACTION Correct answer: D Feedback for A: Incorrect. Clinicians often wish to keep hope alive. However, it is important to provide accurate information, rather than false hope. The correct answer is D. Ask open-ended questions to find out what the patient needs and wants. Feedback for B: Incorrect. Jargon may make it easier for the clinician to talk about death and dying. However, the patient needs clear and accurate information that he can understand. The correct answer is D. Ask open-ended questions to find out what the patient needs and wants. Feedback for C: Incorrect. This is not the best answer. The patient may wish to try an experimental drug. However, this should not be the first topic of conversation. The best answer is D. Ask open-ended questions to find out what the patient needs and wants. Feedback for D: Correct. Ask open-ended questions to find out what the patient needs and wants. Point 11 of 17

3012 Bias Toward Curative Care In general, the Western healthcare system has a strong bias toward curative care. IMAGE: 3012.GIF As a result: Many clinicians have little experience or training in palliative care. Clinicians may see palliative care as failure. They may think palliative care is the same as giving up on a patient. This can lead to poor palliative care. Point 12 of 17

3013 Bias Toward Curative Care: Correcting the Bias Clinicians must be trained on: The importance of palliative care How to provide proper end-of-life care IMAGE: 3013.GIF Clinicians must understand that many patients value a good death. Many patients do not want heroic use of medicine and technology to prolong life. They would rather have a good death. Therefore, excellent end-of-life care comes back to: Communicating with patients to understand their end-of-life needs and wants Respecting what each patient needs and wants, regardless of any preexisting biases Point 13 of 17

3014 Lack of Cultural Competence There are many cultural norms and taboos [glossary] around death and dying. IMAGE: 3014.GIF For example, a patient s culture may: Forbid the use of certain types of life support. Dictate that a patient should not be told of a terminal diagnosis. Require that a patient die at home. Forbid all talk of death or dying. Speaking of death may be thought to cause death. Choose a particular family member to make all healthcare decisions for the family. Clinicians must be aware of their patients cultural norms and values around death and dying. Otherwise, they risk losing their patients trust. They also risk distressing their patients by: Breaking taboos Providing unwanted or improper end-of-life care Point 14 of 17

3015 Lack of Cultural Competence: Improving Competence Remember: Clinicians must understand what their patients need and want near the end of life. IMAGE: 3015.GIF This requires good communication. To improve communication with a patient from a different culture: Educate yourself about the patient s culture. Use what you learn as a guide. However, be careful not to stereotype the patient. Talk to the patient s family before talking to the patient. Find out who makes healthcare decisions for the family. Find out whether it is okay to tell the patient about a terminal diagnosis. If not, find out who should be informed. Allow the patient to reveal his or her values, beliefs, concerns, fears, and goals for care. Do not impose your beliefs and biases. When necessary, use a medical translator. Translators can be particular useful when discussing end-of-life care. They often know acceptable euphemisms [glossary] for taboo words and subjects. Point 15 of 17

3016 Review A clinician may take heroic measures to prolong life if he or she has: a. A bias toward curative care near the end of life b. A bias toward palliative care near the end of life c. Both of these d. Neither of these MULTIPLE CHOICE INTERACTION Correct: A Feedback for A: Correct. Feedback for B: Incorrect. The correct answer is A. Feedback for C: Incorrect. The correct answer is A. Feedback for D. Incorrect. The correct answer is A. Point 16 of 17

3017 Summary You have completed the lesson on barriers to palliative care. NO IMAGE Remember: All terminally ill patients should expect to die without unnecessary pain. They should expect to die according to their end-of-life preferences. Instead, many patients suffer significant pain near the end of life. Many clinicians do not follow their patients end-of-life preferences. Patients and clinicians do not always communicate fully. Therefore, clinicians often do not understand and meet their patients needs and wants near the end of life. Clinicians must be willing to talk about end-of-life issues directly and openly. They must provide accurate information. They also must ask the right questions. All adult patients should be encouraged to complete an advance directive. Clinicians must be willing to put aside their bias toward curative care near the end of a patient s life. They must understand that many patients value a good death over heroic measures to prolong life. Clinicians must act with cultural sensitivity when providing care to patients near the end of life. Point 17 of 17

Lesson 4: Addressing the Needs of the Dying Patient 4001 Introduction Welcome to the lesson on addressing the needs of the dying patient. FLASH ANIMATION: 4001.SWF/FLA Point 1 of 17

4002 Objectives After completing this lesson, you should be able to: NO IMAGE List the parts of the palliative care consultation. Identify the function and goal of each part. Point 2 of 17

4003 The Palliative Care Consultation Remember: Good communication is one of the keys to excellent end-of-life care. IMAGE: 4003.GIF Communication should be ongoing throughout treatment. This communication does not always need to be highly formal. When a patient nears the end of life, however, a structured palliative care consultation is often a good idea. This consultation should address: Prognosis Personal goals for end-of-life care Physical symptoms Psychological, social, and spiritual needs Support systems Discharge planning Let s take a closer look at each of these elements. Note: The following screens describe a palliative care consultation with the patient actively involved. When the patient is a minor or a non-competent adult: The patient s legal representative should be involved. The patient s advance directive should be consulted. Point 3 of 17

4004 Prognosis Remember: Terminally ill patients need accurate information. IMAGE: 4004.GIF Accurate information includes an estimate of time left. This information can help patients: Make treatment decisions. Set goals for end-of-life care. Prepare psychologically for death. Draw upon support services. For example, hospice will not provide services unless a patient has a certified prognosis of no more than six months left to live. Point 4 of 17

4005 Prognosis: Time Left Clinicians often do not like to answer the question, How much time do I have left? IMAGE: 4005.GIF The answer can never be exact or certain. Remember: Patients often need and want this information. Therefore, provide an estimate. Then explain that predictions of time left are always uncertain. This is especially true: For prognoses beyond three to six months If multiple health factors are involved If the clinician making the prediction is inexperienced If the prognosis is for a disease other than cancer Point 5 of 17

4006 Personal Goals for End-of-Life Care The patient knows his or her prognosis. IMAGE: 4006.GIF The next step is for the patient to decide on personal end-of-life care goals. This often requires input or help from clinicians and family members. The patient may consider goals such as: Managing pain and other physical symptoms Taking care of psychological, spiritual, or social issues and concerns Avoiding unwanted postponement of dying Maintaining control over the course of care by completing an advance directive Creating a comfortable inpatient environment Returning home Avoiding future hospitalization Point 6 of 17

4007 Personal Goals for End-of-Life Care: Maximizing Comfort and Minimizing Burden In general, end-of-life care goals should focus on: Maximizing comfort Minimizing burden IMAGE: 4007.GIF Therefore, patients who remain hospitalized may wish to stop routine care such as: Monitoring vital signs Standard labs and tests Note: For some patients, vitals, labs, and tests may be a burden. For others, this routine may provide psychological comfort. As always, communicate with patients to meet their needs and wants. Point 7 of 17

4008 Physical Symptoms Managing pain and other physical symptoms is often an end-of-life care goal. IMAGE: 4008.GIF End-of-life symptoms should be assessed and addressed during the palliative care consultation. Ask about: Pain Dry mouth Nausea Water retention and swelling Lack of appetite Constipation Shortness of breath Point 8 of 17

4009 Physical Symptoms: Management Drugs are used to treat most physical symptoms. In general, opioids are used. IMAGE: 4009.GIF In some cases, more aggressive treatment options may be available. For example, local radiation can relieve symptoms of terminal metastatic [glossary] cancer. However, aggressive treatment can have unpleasant side effects. Patients should be fully informed of the treatment options available. They should know all possible risks, side effects, and benefits. This will help the patient make informed treatment and care decisions. Point 9 of 17

4010 Physical Symptoms: Terminal Sedation Terminal sedation refers to the use of drugs to cause a terminally ill patient to lose consciousness. This method is sometimes used to relieve unmanageable physical pain or other symptoms. IMAGE: 4010.GIF Patients who request terminal sedation usually have refused life support. Therefore, terminally sedated patients die of dehydration, starvation, or respiratory failure. U.S. Supreme Court decisions have indirectly supported the legality of terminal sedation. However, the ethics of this practice remain controversial. Consult your supervisor or organizational policies for your facility s position on terminal sedation. Point 10 of 17

4011 Psychosocial and Spiritual Needs Common psychosocial and spiritual issues near the end of life are: Fear or denial of death Concerns about finances, especially the financial stability of the patient s family after his or her death Wanting to find closure or meaning Wanting to strengthen relationships with loved ones IMAGE: 4011.GIF Meet these needs through: Discussion Referral to a social worker, counselor, clergyperson, etc. Point 11 of 17

4012 Support Systems Patients near the end of life often fear dying alone. IMAGE: 4012.GIF Help the patient think about possible sources of physical, emotional, and spiritual support. These sources may include: Family Friends Coworkers Church Neighborhood Hospital volunteers Point 12 of 17

4013 Support Systems: Fear of Being a Burden Patients near the end of life do not wish to die alone. IMAGE: 4013.GIF At the same time, they may fear burdening their loved ones. The palliative care consultation should address this fear. It is best to do so with the patient s loved ones. The goal should be to: Reassure the patient that his or her care can be arranged in a way that does not create too much of a burden on loved ones. Identify resources for family members, for support if and when they feel overwhelmed. Point 13 of 17

4014 Discharge Planning For inpatients, discharge planning is an essential last step in the palliative care consultation. IMAGE: 4014.GIF Various options should be considered, in light of: The patient s end-of-life care goals The patient s symptom-management regimen The patient s need for medical and emotional support Finances and insurance coverage Based on these factors, options may include: Staying in the hospital Transferring to a long-term care facility Transferring to a hospice facility Going home Point 14 of 17

4015 Review A terminally ill patient asks, How much time do I have left? A straightforward answer to this question can help the patient: a. Prepare psychologically for death. b. Make informed treatment decisions. c. Set personal goals for end-of-life care. d. All of the above e. None of the above MULTIPLE CHOICE INTERACTION Correct: D Feedback for A: Not quite. The best answer is D. Many clinicians prefer not to give estimates of time left. However, knowing their time left can help patients make treatment decisions, set goals for end-of-life care, and prepare psychologically for death. Feedback for B: Not quite. The best answer is D. Many clinicians prefer not to give estimates of time left. However, knowing their time left can help patients make treatment decisions, set goals for end-of-life care, and prepare psychologically for death. Feedback for C: Not quite. The best answer is D. Many clinicians prefer not to give estimates of time left,. However, knowing their time left can help patients make treatment decisions, set goals for end-of-life care, and prepare psychologically for death. Feedback for D: Correct. Many clinicians prefer not to give estimates of time left. However, knowing their time left can help patients make treatment decisions, set goals for end-of-life care, and prepare psychologically for death. Feedback for E: Incorrect. The best answer is D. Many clinicians prefer not to give estimates of time left. However, knowing their time left can help patients make treatment decisions, set goals for end-of-life care, and prepare psychologically for death. Point 15 of 17

4016 Review Terminal sedation has been upheld in case law. However, it remains ethically controversial. a. True b. False TRUE / FALSE INTERACTION Correct answer: A Feedback for A: Correct. U.S. Supreme Court decisions have indirectly supported the legality of terminal sedation. However, the ethics of this practice remain controversial. Be sure to check with your supervisor regarding your facility s policy. Feedback for B: Incorrect. This statement is true. U.S. Supreme Court decisions have indirectly supported the legality of terminal sedation. However, the ethics of this practice remain controversial. Be sure to check with your supervisor regarding your facility s policy. Point 16 of 17

4017 Summary You have completed the lesson on addressing the needs of the dying patient. NO IMAGE Remember: When a patient nears the end of life, a structured palliative care consultation is often a good idea. Knowing their time left can help patients set goals for end-oflife care. It can also help them prepare psychologically for death. In general, end-of-life care goals should focus on maximizing the patient s comfort and minimizing the patient s burden. Common end-of-life symptoms include pain and shortness of breath. Both can usually be treated with drugs. Terminal sedation refers to the use of drugs to cause a terminally ill patient to lose consciousness. This method is sometimes used to relieve unmanageable physical symptoms. U.S. Supreme Court decisions have indirectly supported the legality of terminal sedation. However, the ethics of the practice remain controversial. Meet the psychosocial and spiritual needs of dying patients through discussion or referral. Dying patients may need help in identifying support systems. They also may need to know that their illness and dying does not create too much of a burden on loved ones. For inpatients, discharge planning is an essential last step in the palliative care consultation. Point 17 of 17

Lesson 5: Addressing the Needs of the Family 5001 Introduction Welcome to the lesson on addressing the needs of the dying patient s family. FLASH ANIMATION: 5001.SWF/FLA Point 1 of 17

5002 Objectives After completing this lesson, you should be able to: NO IMAGE List the needs of a dying person s family. Identify clinical best practices that can help meet these needs. Point 2 of 17

5003 Palliative Care and the Family The WHO definition of palliative care states: IMAGE: 5003.JPG The goal of palliative care is achievement of the best quality of life for patients and their families. This definition recognizes that death does not happen in a vacuum. Instead, death and dying have far-reaching consequences. The patient s family is profoundly affected. Therefore, end-of-life care must consider the needs of the family, as well as those of the patient. Point 3 of 17

5004 Needs of the Family When a person is dying, typical needs of the family include: FLASH ANIMATION: 5004.SWF/FLA To be with the person To be helpful to the person To be informed of the person s changing condition To understand what is being done to the patient, and why To know the patient is comfortable To express their emotions and be comforted To be reassured that they have made the right decision (when family members make decisions to withhold or withdraw life support) To find meaning in the death of the person On the following screens, let s take a look at clinical best practices that can help you address each of these needs. Point 4 of 17

5005 To Be with the Person When patients die in hospitals or other facilities, staff should encourage and support the presence of family members. FLASH ANIMATION: 5005.SWF/FLA If at all possible, the patient should be placed in a private room. This allows the patient to have physical and emotional intimacy with family members. Restrictions on visiting hours should be relaxed as much as possible. Clinicians should be prepared for large groups at the bedside. If the death involves withdrawal of life support, the withdrawal should be planned so that distant family members have enough time to arrive. During withdrawal of life support, distractions and barriers should be removed. Unless it is against organizational policy: Monitors should be turned off. Leads, cables, and catheters should be removed. Bedrails should be lowered. Point 5 of 17

5006 To Be with the Person Consider providing simple amenities [glossary]. This can help make the family s stay more comfortable. IMAGE: 5006.GIF A pager or cell phone can allow family members to leave the bedside briefly, without fear of missing the patient s last moments. Other amenities include: Tissues Chairs Blankets/pillows Coffee Water Telephone Point 6 of 17

5007 To Be Helpful to the Person Family members often have a strong desire to be helpful to the dying person. This is especially true of parents of a dying child. FLASH ANIMATION: 5007.SWF/FLA Allow family members to be helpful by teaching them how to perform: Mouth care Bathing Repositioning Assessing pain Also, encourage family members to bring meaningful personal articles that might comfort the patient psychologically. Point 7 of 17

5008 To Be Informed of the Person s Changing Condition Clinicians should take the time to explain the process of dying to family members. This should include a clear description of: How the patient will die What the process of dying will look like FLASH ANIMATION: 5008.SWF/FLA Clinicians often need to anticipate and answer questions that family members are unable to put into words. It is especially important to describe the signs and symptoms of imminent death. These include: Decrease in consciousness Increase in confusion or restlessness Visions Changes in breathing sounds or patterns Cool or bluish arms or legs Inability to respond to touch or sound Family members often wish to be present in the final moments of the patient s life. Describe the above signs and symptoms to these family members both: Before the signs develop As the signs develop This ensures that family members will not leave the bedside at a critical moment. Point 8 of 17

5009 To Be Informed of the Person s Changing Condition Remember: Family members should be informed about the process of dying. FLASH ANIMATION: 5009.SWF/FLA However, avoid making firm predictions about a patient s exact clinical course. These predictions are: Difficult to make Often inaccurate When a loved one is dying, family members need to feel the utmost trust in the knowledge, expertise, and competence of the care team. Inaccurate predictions about a patient s death can cause family members to lose trust. Point 9 of 17

5010 To Understand What Is Being Done To the Person and Why All members of the care team should give the family consistent information about the patient s care. FLASH ANIMATION: 5010.SWF/FLA In most cases, it is best to choose a single member of the care team to communicate all messages. This helps prevent any mixed messages. Point 10 of 17

5011 To Be Assured of the Patient s Comfort Clinicians should be able to tell family members that the patient is comfortable. This message should be honest and believable. FLASH ANIMATION: 5011.SWF/FLA This requires: Ongoing assessment and reassessment of the patient s physical pain and suffering Drugs and treatments for relieving pain, to be used as needed Very close to death, patients may moan or grunt as they breathe. Family members may fear that the patient is in pain. Explain that these breathing patterns usually do not have to do with pain. Provide this assurance even if family members do not ask. Point 11 of 17

5012 To Express Their Emotions and Be Comforted Clinicians often feel the need to do or fix. FLASH ANIMATION: 5012.SWF/FLA One of the most comforting things you can do for a dying patient s family is simply to be present at the patient s bedside. Stay with the family. Allow family members to: Sit in comfortable silence. Review the patient s life. Express feelings of loss and grief. Immediately after the patient s death, be sure to: Express your sympathy. I m sorry for your loss is perfectly adequate. Give family members as much time and space as they need to say final goodbyes. Point 12 of 17

5013 To Be Reassured That They Have Made the Right Decisions Choosing to withdraw life support can be an agonizing decision for family members. FLASH ANIMATION: 5013.SWF/FLA This is especially true if the patient does not have an advance directive. Be certain to address any doubts or guilt by emphasizing: The care team shares responsibility with family members for all treatment decisions. All decisions were made after giving careful thought to the best interests of the patient. Point 13 of 17

5014 To Find Meaning After the patient s death, give family members a chance to think about the patient s life. FLASH ANIMATION: 5014.SWF/FLA Honor the patient s life and death by bathing and handling the body according to the family s wishes. Be sure to follow any cultural rules or customs. Point 14 of 17

5015 Review FLASH INTERACTION: 5015.SWF/FLA When patients die in hospitals or other facilities, staff should encourage and support the presence of family members. How can staff help family members be present with their dying loved one? Type your thoughts in the space provided. Then click Submit to check your answer. Did you mention some or all of the following? 1. Place the patient in a private room, to allow for physical and emotional intimacy. 2. Relax restrictions on visiting hours as much as possible. 3. Be prepared for large groups at the bedside. 4. Plan the withdrawal of life support so that distant family members have time to arrive. 5. During withdrawal of life support, remove all distractions and barriers. Turn off monitors. Remove leads, cables, and catheters. Lower bedrails. 6. Provide simple amenities: Pager or cell phone Tissues Chairs Blankets and pillows Coffee Water Telephone Point 15 of 17

5016 Review Family members should be informed about the process of dying. However, clinicians should not make firm predictions about a specific patient s clinical course. a. True b. False TRUE / FALSE INTERACTION Correct: A Feedback for A: Correct. Predictions about a specific patient s clinical course are notoriously inaccurate. Inaccurate predictions can lead to a loss of trust, at a time when family members need to feel the utmost confidence in the care team. Feedback for B: Incorrect. This statement is true. Predictions about a specific patient s clinical course are notoriously inaccurate. Inaccurate predictions can lead to a loss of trust, at a time when family members need to feel the utmost confidence in the care team. Point 16 of 17

5017 Summary You have completed the lesson on addressing the needs of the family. NO IMAGE Remember: A patient s death profoundly affects the family. End-of-life care must consider the needs of the family, as well as those of the patient. When patients die in hospitals or other facilities, staff should encourage and support the presence of family members. During withdrawal of life support, all distractions and barriers should be removed. Allow family members to be helpful to the dying person. This is especially important for parents of a dying child. Explain the process of dying to family members. Clearly describe how the patient will die, and what this will look like. Do not make firm predictions about a specific patient s clinical course. Inaccurate predictions can lead to a loss of trust, at a time when family members need to feel the utmost confidence in the care team. All clinicians should give family members a consistent message about the patient s care. Clinicians should be able to tell family members that the patient is comfortable. The ability to give this reassurance is based on ongoing pain assessment and use of pain medication as needed. Allow family members to express feelings of loss and grief. Choosing to withdraw life support can be an agonizing decision for family members. Address any doubts or guilt. After the patient s death, give family members the time and space they need to reflect on the patient s life and say their final goodbyes. Point 17 of 17

Course Glossary # Term Definition advance directive legal document stating a patient s preferences for end-of-life treatment and care amenity something intended to make circumstances more pleasant credibility the quality of being believable or trustworthy euphemism an agreeable or inoffensive expression used to replace one that might offend or suggest something unpleasant existential relating to or dealing with existence (especially with human existence) liaison a channel for communication between groups taboo something excluded from use or mention chronic long-term therapeutic interventions treatment multidisciplinary jargon metastatic cancer degenerative involving professionals from more than one specialty characteristic language used by a particular group cancer that has spread from its initial site to other parts of the body relating to a progressive deterioration of a tissue or organ

[End-of-Life Care] Pre-Assessment 1. In the industrialized world today, the majority of people die as a result of: a. Accidents b. Heart attacks c. Acute infectious disease d. Chronic or degenerative disease Correct Answer: Chronic or degenerative disease Answer Rationale: In the industrialized world today, an estimated 70% to 80% of all people die of chronic or degenerative disease. 2. The main focus of curative care is: a. Maximizing quality of life b. The psychosocial aspects of illness c. Managing pain and other symptoms d. Eliminating the underlying cause of disease Correct Answer: Eliminating the underlying cause of disease Answer Rationale: The main focus of curative care is identifying and eliminating the underlying cause of disease. The goal is to restore full health. 3. Providing some palliative care even in the earliest stages of curative care shows patients that: a. Quality of life is important throughout treatment, not just near the end of life. b. Relieving pain is important throughout treatment, not just near the end of life. c. A shift in focus toward more palliative care is not a sign that healthcare providers have given up on a patient. d. All of these answers are correct. e. None of these answers is correct. Correct Answer: All of these answers are correct. Answer Rationale: Using palliative and curative care together has all of these benefits. 4. A patient has not discussed end-of-life care with anyone. is (are) likely to know what type of care the patient needs and wants near the end of life. a. The patient s primary care physician b. The patient s closest family members c. Both of these

d. Neither of these Correct Answer: Neither of these Answer Rationale: Physicians and family members often do not know what type of care a patient would need and want near the end of life. 5. You are talking to a terminally ill patient about end-of-life care. You ask the patient about his most immediate fears and concerns. The patient says, I m afraid I won t be alive for my daughter s college graduation. To keep lines of communication open, the best response would be: a. Try to keep your hopes up. We ll do our best to make sure you see your daughter graduate! b. I can understand why you would want to be alive for your daughter s graduation. What frightens you the most about not being there for your family? c. I m sorry, but it s very likely that you will not live to see your daughter graduate. Why don t we talk about the important things you have seen in your life? Correct Answer: I can understand your desire to be alive for your daughter s graduation. What frightens you the most about not being there for your family? Answer Rationale: This response validates the patient s desire to see his daughter graduate. It does not give false hope or empty reassurances. It invites the patient to continue to explore his fear. 6. Western healthcare has a bias toward: a. Comfort care b. Curative care c. Palliative care d. Symptom management Correct Answer: Curative care Answer Rationale: Western healthcare has a strong bias toward curative care. 7. You are treating a patient from an unfamiliar culture. The patient s diagnosis is terminal. It would be a good idea to: a. Tell the patient about the diagnosis. b. Make direct references to death and dying. c. Identify the patient s values, beliefs, and concerns. d. All of these answers e. None of these answers Correct Answer: Identify the patient s values, beliefs, and concerns. Answer Rationale: Depending on the patient s culture, direct references to death and dying may be taboo. Also, it may be more appropriate to tell a designated family member about the terminal diagnosis. Regardless of culture, it is a good idea to find out about the patient s values, beliefs, and concerns. 8. Terminally ill patients often fear:

a. Dying alone b. Dying in pain c. Burdening their loved ones d. All of these answers e. None of these answers Correct Answer: All of these answers Answer Rationale: All of these are common fears for patients near the end of life. 9. The fifth vital sign is: a. Pain b. Skin color c. Hydration status d. Responsiveness to touch Correct Answer: Pain Answer Rationale: Pain has been designated the fifth vital sign. It is important to monitor and chart pain to ensure adequate pain management at all times. 10. Opioids are most often used to relieve pain and suffering in the terminally ill. a. True b. False Correct Answer: True Answer Rationale: This statement is true. 11. End-of-life care should address the needs of the family, as well as those of the dying patient. a. True b. False Correct Answer: True Answer Rationale: Death and dying profoundly affect the patient s family, as well as the dying patient. Therefore, end-of-life care should address the needs of the family, as well as those of the patient. 12. A terminally ill patient has requested withdrawal of life support. The patient is expected to die shortly after the withdrawal of support. The patient s family has gathered to be with him during his final moments. For the withdrawal of life support: a. The patient s monitors should be turned off. b. The patient s bedrails should be lowered. c. Leads, cables, and catheters should be removed. d. All of these answers are correct.

e. None of these answers is correct. Correct Answer: All of these answers are correct. Answer Rationale: During withdrawal of life support, all distractions and barriers should be removed. This allows the family to have access to the patient in his final moments. 13. One of your patients is dying. Her family members have gathered to be with her in her final moments. You are educating the family members about the process of dying. You should: a. Keep your description as brief as possible. Provide extra information only if family members specifically ask. b. Describe only the physiologic process of dying. Do not frighten the family members by describing how the patient will look. c. Provide a complete physiologic and visual description of the process of dying. Anticipate and answer any questions that family members may be afraid or unable to verbalize. d. Avoid describing the specific signs and symptoms of imminent death. This will ensure that family members do not become too upset when the patient begins to show these symptoms. Correct Answer: Provide a complete physiologic and visual description of the process of dying. Anticipate and answer any questions that family members may be afraid or unable to verbalize. Answer Rationale: Family members of a dying patient should be fully informed of the process of dying. This should include a clear description of how the patient will die, and what this process will look like. Clinicians describing the process of dying should anticipate and answer any questions that family members may be afraid or unable to verbalize. 14. Choosing to withdraw life support can be an agonizing decision for family members. This is especially true if a non-competent terminally ill patient does not have. a. A spousal consent b. A promissory note c. An advance directive d. A last will and testament Correct Answer: An advance directive Answer Rationale: An advance directive is the legal document that records a patient s end-of-life care preferences. Decisions to withhold or withdraw life support are generally easier for family members when they have an advance directive to guide and reassure them. 15. Inpatients near the end of life: a. May take psychological comfort in routine care activities (vitals, labs, tests) b. May find routine care activities (vitals, labs, tests) to be an unnecessary burden c. Either of these answers d. Neither of these answers Correct Answer: Either of these answers