EOL Care workshop Combine presentation 07 07 24.pptx

End of Life Care Kathleen Vollman MSN, RN, CCNS, FCCM, FCNS, FAAN Clinical Nurse Specialist/Consultant Mohammad Guzo, MSN, RN, CNS Nurse Manager – Oncology Center Vinmec Central Park International Hospital Alyssa A. Grissom MSN, APN, AGCNS, AOCNS Oncology Nurse Expert Objectives  The philosophy...

End of Life Care Kathleen Vollman MSN, RN, CCNS, FCCM, FCNS, FAAN Clinical Nurse Specialist/Consultant Mohammad Guzo, MSN, RN, CNS Nurse Manager – Oncology Center Vinmec Central Park International Hospital Alyssa A. Grissom MSN, APN, AGCNS, AOCNS Oncology Nurse Expert Objectives  The philosophy and principles of hospice/End of Life care and palliative care that can be integrated across settings to affect quality care for individuals with serious illness  Aspects of assessing physiological, psychological, spiritual, cultural, and social domains of quality of life for patients and families experiencing end of life. Discuss the importance of interdisciplinary communication and communication with the patient and their family caregivers. What is Palliative Care & Hospice Care?  Palliative care and hospice care are two types of care that are often thought to be synonymous. They have many similarities and differences.  Palliative care is aimed at anticipating, preventing, and treating suffering throughout the continuum of a serious illness, preferably beginning at the time of diagnosis.  Hospice care specifically addresses care of the individual with serious illness at the end of life. Thus, all hospice care is palliative care, but not all palliative care is hospice Palliative Care Is:  Appropriate at any stage in a serious illness and is beneficial when provided along with treatments of curative or life-prolonging intent.  Provided over time to patients based on their needs and not their prognosis.  Offered in all care settings and by various organizations, such as physician practices, health systems, cancer centers, dialysis units, home health agencies, hospices, and long-term care providers.  Focused on what is most important to the patient, family, and caregiver(s), assessing their goals and preferences and determining how best to achieve them. The National Consensus Project (NCP) for Quality Palliative Care (2018) End of Life  Supports the patient through the dying process and the surviving family through the dying and bereavement processes.  Provides comprehensive medical and supportive services across a variety of settings such as the home, residential facility, hospital, and other settings (e.g., prison).  Views death as a normal part of life. National Hospice and Palliative Care Organization [NHPCO], 2021)  Defining End of Life Care  End-of-life: Care given to people who are near the end of life where treatment has been stopped to cure or control their disease. End-of-life care includes physical, emotional, social, and spiritual support for patients and their families. The goal of end-of-life care is to control pain and other symptoms so the patient can be as comfortable as possible. End-of-life care may include palliative care, supportive care, and hospice care. (NCI 2019) © ©Rick RickBassett Bassett2020 2020 Philosophy and Delivery Of Palliative Care  The provision of care and services coordinated by an interdisciplinary team.  Collaboration and communication about care needs among patients, families, palliative, and non-palliative healthcare providers.  The provision of services concurrently or independent of curative or life‐ prolonging care.  Support of the patient and family’s hopes for peace and dignity throughout the course of illness, during the dying process, and after death. The National Consensus Project (NCP) for Quality Palliative Care (2018) Oncology Patients  In 2017, the American Society of Clinical Oncology (ASCO) issued a statement that all cancer patients should receive palliative care (Ferrell et al., 2017).  In studies of patients with non-small-cell lung cancer (NSCLC), outpatient palliative care consult teams found that symptom management was foremost in the conversations. Patients also were open to discussing the emotional aspects of their disease (Jacobsen et al., 2011).  It has also been noted that patients want to achieve a sense of control for as long as they can to attain spiritual peace, to succeed in having their finances in order, to strengthen relationships with their loved ones, and to believe that their life has had meaning (Grant et al., 2015). "Remember the dying are still living.” Elizabeth Kubler-Ross A Case  Stephen Mark is an 82-year-old man with cognitive decline, heart failure, diabetes, and debility. Mr. Mark has dyspnea related to heart failure and persistent pain related to osteoarthritis. What type of care would be most appropriate for Mr. Mark?  Hospice Care  Palliative Care A Case  Mariana Jones is a 36-year-old woman with metastatic lung cancer, which has spread to the brain, spine, and liver. After receiving 6 months of chemotherapy and radiation that did not stop the cancer, she has come to terms with her advancing disease. Ms. Jones would like to die at home. What type of care would be most appropriate for Ms. Jones?  Hospice Care  In-Patient Palliative Care  Barriers to Quality of Care  Poor understanding of palliative and hospice services (Hawley, 2017; NHPCO, 2021):  Delayed access to palliative care and hospice occurs because those services are not well understood, and confusion remains over when it is appropriate to consult or transfer care to palliative care.  This delay means patients and families do not reap the full benefits of hospice and palliative care services.  Lack of adequate education and training of professionals in primary palliative care, especially in management of pain and common symptoms and only address physical aspects versus addressing psychosocial and spiritual needs Quality of Life Model Eight Domains of Palliative Care  Structure and processes of care  Physical aspects of care  Psychological and psychiatric aspects of care  Social aspects of care  Spiritual, religious, and existential aspects of care  Cultural aspects of care  Care of the patient nearing the end of life  Ethical and legal aspects of care NCP and the National Quality Forum (NQF), there are eight domains of palliative care (2018)  Focus on EOL care?  Many hospital deaths per year  For most practice settings death is not a common experience making it a less likely competency for a nurse early in their career  Exceptions: ED, ICUs, Oncology, Homecare/Hospice  Today will be a great first step in helping you to avoid work related stress & burnout © Rick Bassett 2020 © Rick Bassett 2020  Critical Principles to Consider at EOL  Patient’s goals, preferences and choices are respected and form basis for plan of care  Team is aware of and proactively works to addresses the complex issues that may arise  It is essential that we collaborate with members of the interdisciplinary team to honor patients’ goals of care and to provide palliative care/End of Life care across the continuum for patients with serious illness and their families. Remember this care means both “doing for” and “being with.” © ©Rick RickBassett Bassett2020 2020 Critical Principles to Consider at EOL  Withdrawing life-sustaining treatment is a medical procedure that requires the same degree of physician participation and quality assurance as any other medical procedure.  Death occurs as a consequence of the underlying disease/complication.  Principle of Double Effect: There is a morally relevant difference between an "intended" consequence of an act and one that is foreseen by the actor but not calculated to achieve their motive. © ©Rick RickBassett Bassett2020 2020 Role of Nurse in End-of-Life Care  While all interdisciplinary team members have a role in the care of seriously ill patients and their families, the nurse is often the team member who spends the most time with these individuals (Ferrell, 2019). As such, nurses perform the following tasks:  Elicit goals of care.  Assess, manage, and coordinate care.  Listen to patients and family members.  Bear witness.  Communicate with all members of the care team and other healthcare providers.  Remain knowledgeable in evidence-based practices in symptom management Trajectories of Serious illness  Disease and dying trajectories illustrate differences in the dying experience by examining the duration of the dying process and the course of the disease or injury.  Understanding these trajectories will help you provide a higher level of care to patients and their families.  Sudden Death: This trajectory is a sudden death, due to an unexpected cause  Steady Decline: This trajectory is the steady decline of a patient in the terminal phase of illness such as with pancreatic cancer (Field & Cassel, 1997).  Chronic Illness: This trajectory involves patients with chronic illnesses who experience periodic acute exacerbations and a high symptom burden such as that seen with heart failure, COPD, end- stage liver disease, and end-stage HIV (Field & Cassel, 1997).  Progressive Deterioration: This trajectory represents a lingering but expected death such as an older adult who is declining but with no specific acute cause of death (Lunney et al., 2003). It is marked by prolonged and gradual physical and cognitive decline with increased fatigue, weight loss, and decreased food/fluid intake. You May Ask About These Interventions  Are they prolonging this patient’s life?  Are they non-beneficial?  Are the burdens of treatment outweighing the benefits of treatment?  Are treatments promoting suffering for the patient and their loved ones?  Are treatments increasing the risk of depression and anxiety?  Are treatments promoting complicated bereavement for the family members/caregiver  Are treatments ethically and respectfully considering financial burdens of any non-beneficial treatments  If life-sustaining treatments (chemotherapy, radiation, medications, procedures) are continued, does this prevent/delay palliative or hospice services? (Jonsen et al., 2022): Toll of End of Life on Patients and Family Caregivers  The toll of caring for a loved one with a serious illness can be devastating for patients, families, and caregivers.  Although patients often prefer to die at home, families must balance personal responsibilities, physical caregiving, and work responsibilities.  Caregiver Commitment and Cost  Families receive little training about care provision and are often uncertain and scared about providing physical care.  The toll can be significant with 18 to 35% of caregivers experiencing some form of psychiatric morbidity, along with suffering physical and financial hardships, social isolation, and spiritual angst (Stajduhar & Dionne-Odom, 2019). Case  Maria is a 48-year-old woman with a diagnosis of COPD and long COVID. She is receiving palliative care services for pain and symptom relief. Which of the following disease trajectories do you MOST expect Maria’s illness trajectory to follow?  Sudden death  Steady decline  Chronic illness  Progressive deterioration A Reggie’s Case  Regis is a 42-year-old man diagnosed 3 months ago with gallbladder cancer. He is unable to complete household chores or care for his two teenagers due to chronic fatigue, pain, and nausea. He is anxious, fearful and distraught as his pain has been unmanaged.  He is sad to be unable to participate in his teenagers’ activities and continue with community responsibilities. He has alopecia and has lost 20 pounds since becoming ill. His clothes no longer fit, and he does not have the energy to shop for new ones. He notes that his wife is frustrated with him.  He feels hopeless because he knows he only has a few months to live. He believes that God is punishing him. He wants to make his remaining time as meaningful as possible but cannot find peace between all the pain and suffering. Reggie’s Case  What are the physical dimensions of Regis’s suffering? Select all that apply.  Chronic fatigue, pain and nausea  Alopecia  Weight loss  Feeling hopeless Reggie's Case  What are the social dimensions of Regis’s suffering? Select all that apply.  Alopecia  Unable to participate in community responsibilities  Wife is frustrated  Weight loss Reggie's Case  What are the spiritual dimensions of Regis’s suffering? Select all that apply.  Chronic fatigue  Pain  Feeling hopeless  Cannot find peace among all the pain and suffering Reggie's Case  What are the psychological dimensions of Regis’s suffering? Select all that apply.  Anxious and fearful  Nausea  Distraught that he cannot obtain pain relief  Fatigue The Use of “Presence” as a Way of Expressing Compassionate Caring: Every day, nurses are invited to be present at the last moments of a patient’s life; to care for them and their family at the time of death; to care for the bereaved family. Nurses can use therapeutic presence as a means of communicating care for the patient struggling with emotional/spiritual elements of suffering associated with multiple losses. Listening—let them tell their story “Presence may in fact be our greatest gift to these patients and their families” (Borneman & Brown-Saltzman, 2019, p.462). Maintaining a Realistic Perspective There is no right way to die, or no cookbook approach. Crises and difficulties arise along with unexpected and profound joys. A flexible approach is essential to meet the changing needs of the patient and family. Recognition that quality of life (QOL) is determined by the unique needs of the patient and family assists the nurse in remaining focused on the goals of care. Honoring a patient’s culture is essential. How does recognizing your own culture and the effects it has on your interactions, decisions, language, and behavior affect the care you provide? Palliative Care/End of Life Care Hope Peace Pain Nausea Spiritual Life meaning/purpose Weakness Vomiting Care Insomnia Constipation Fatigue Anorexia Physical Cultural End-of-life wishes Dyspnea Care Care Advanced directives Palliative/End of Life Care Transportation Goals of care Support for caregiver Psychological Acceptance Social Care Medical costs Care Anxiety Assistive devices Depression Equipment Fear  Key Activities  Screen patients and identify those who may have unmet end of life and/or palliative care needs  Offer access to multidisciplinary care  Do a thorough assessment of a patient’s physical, environmental, social, cultural, emotional, psychosocial, and spiritual needs  Establish the goals and needs of the patient and their family  Support effective conversations  Provide quality symptom management  Support people to receive care and die in their preferred place  Provide grief and bereavement support Overarching all EOL care is Communication  Communication is the foundation of EOL care  Communication is not always verbal—includes listening, being present and bearing witness Role of Nurses Communication  Nurses assist patients and their family caregivers;  With defining optimal quality of life,  Establishing goals of care,  Identifying priorities of life,  Discussing social determinants of health,  Accurately communicating this information to the interprofessional team. Communication Needs of the Patient  Need for information  Disclosure of feelings  Maintaining a sense of control  A sense of hope and communication for a meaningful and purposeful life Communication Goals with Patient & Family  Build rapport with patients and families to build trust and understanding.  Be present.  Bear witness compassionately.  Be honest and truthful.  Elicit and request their values/goals and help as much as possible to achieve these values/goals.  Keep patients and families informed.  Work with the entire interdisciplinary team and ensure they understand the care plan, communicate the goals of care to one another, and contribute to the development of the plan of care.  Listen actively to validate the concerns and needs of both patients and families/caregivers.  Provide a safe, quiet, and private place for conversations about serious illness, death, and dying.  Be compassionate. Interviewing Patients or Families  What do you understand about your illness?  What has your healthcare team already told you?  How are you doing?  Is the treatment going the way you thought?  What has been the most helpful to you?  Tell me more about… Use open ended questions and statements Key Statements to Use to Identity & Address Feelings  How has the illness affected your life and your relationships?” Help determine how much the  “How does the illness reflect on you as a person?” patient & family need or want to know Set up family  “How do you see the future?” meetings with the tema  “How are you affected by others’ opinions?”  “What do you think influences this experience?” Key Communication Phrases  “Tell me what has been going on.”  “How long ago did the symptoms appear?”  “So, what is your understanding of cancer/illness in general?”  “Tell me what your family knows about this pain you have been having.”  “Let’s take a step back. Today, you heard some very difficult news. I think the first step is to give you information, so you can talk to your family. We don’t need to think about treatment right now. Let’s take this one step at a time. In terms of today, I am concerned about your getting home safely. Could you get a family member to come and get you? Would your family want you to be here by yourself? Do you think they would want to be with you during this difficult time?”  “You’ve received very difficult news today. It would be difficult to make big decisions at this time. We can focus on planning at a later date.” Barriers to Communication  Fear surrounding death  Ones own mortality  Not knowing answers to questions  Uncomfortable with expressing emotions  Our lack of experience around death & dying can increase our reluctance to talk about it  Providers may have a sense of guilt due to failure to cure  A desire to support a perception of hope  Disagreement with patients and family's decision can affect further communication  Cultural norms  Lack of understanding of patient and family’s goals of care Which do you see most in your practice? What Are Some Communication Myths  Communication is deliberate  Some people communicate even when they are not consciously aware they are doing it  Words mean the same to the sender and receiver  Words alone do not provide meaning, its our interpretation of them  Verbal communication is the primary form of communication  Majority communicate with non-verbal messages  Communication is a one-way activity  2 way between sender and receiver  A person cannot receive too much information at once  People do get overwhelmed and stop listening Paying Attention to Family/Caregiver  Listen, bear witness, and ask the right questions, which may include the following  How are you? How is the rest of the family? What responsibilities may be taking you away from you loved one  Do you need help financially?  What experiences are most important and meaning to you?  What kinds of needs do you and your family have  Do you have a support system? Non-Verbal & Verbal Communication  80% of communication is non- verbal  Effective verbal communication  Body language (leaning in,  Listening open or closed arms and legs)  Being present  Avoiding interruptions  Eye contact  Establishing a purpose of a visit  Gestures  Encourage participation  Voice intonation  Soliciting beliefs, values and preferences  Eliciting and validating emotions  Physical comfort zone  Providing sufficient information  Validate understanding  Offering reassurance, encouragement & support Communication Needs From Patient, Family & Caregiver  https://youtu.be/Fn6yhemsp3w Impact of Culture  Culture influences human behavior. It also impacts communication, family structure/involvement, and healthcare decision-making.  Cultural sensitivity and humility shifts focus from general cultural understanding of patient groups to the individual patient and their family caregivers  Cultural sensitivity is an ongoing, active process involving curiosity and mindful respect, reflection on practice, interaction, and flexibility.  Cultural competency involves identifying generalizations (e.g., cultural/religious groups, death-related beliefs, practices, rituals, traditions). Vietnam Cultural Considerations  A person’s attitude toward death and bereavement is shaped to a large extent by their cultural heritage, religious practices, and family unit.  In Vietnam: Consult with the family in cases of serious or terminal illness. The family may want to make the health care decisions to avoid worrying the patient.  The health care provider can build trust and promote the therapeutic relationship by including the family in health care decisions.  Decisions are often the responsibility of the eldest male. Older women may also have significant influence. Traditionally, the eldest male is the family spokesman; often the person with the best English assumes this role  If your patient does not want to make his or her own medical decisions, let them know a Durable Power of Attorney for health care needs to be prepared.  Vietnam Cultural Considerations  Removal of life support may require extensive family discussion, placing the responsibility for the decision on the entire family rather than on one individual  Your patient may have a deep respect for elders and for people with authority. Your patient may be reluctant to say “no” to a doctor or health care provider because it may be considered disrespectful or cause disharmony  It is valuable and welcome to ask both the patient and the family about “Do Not Resuscitate” orders. Documenting these wishes gives the patient and family a sense of security that their wishes will be followed.  Your patient may accept pain and illness in a stoic manner; motivated by a strong desire to go home, your patient may mask his or her pain.  Your patient and family members may believe that surgery is a treatment of last resort. They may also believe that blood loss, including blood drawn for lab tests, could make them sicker. Vietnamese Rituals  Most Vietnamese are Buddhist; other religious preferences include Catholic, Evangelical Protestant, and Chinese Confucianism.  Ask your patients and family members about their preferences and rituals to better understand their needs  Patients who practice the Buddhist faith may call a monk to give blessings. Buddhist patients may chant and may also create an altar for prayer.  Patients who are Catholic may ask for a priest for last rites at end of life  Food is considered important for health in the Vietnamese culture. It is common for family members to force food on patients when they are ill.  White is the color for mourning in the Vietnamese culture. Encouraging Conversation  When it comes to having a conversation about serious illness, ask yourself these questions before entering the room: Is this a good time to talk? Is the patient experiencing pain or other symptoms that would make it difficult for them to talk now? Do the patient and family need or want to talk? Has someone else from the interdisciplinary team already spoken with the patient and family and perhaps their questions have been answered? Is there a feeling of being overloaded with information? Is the caregiver exhausted, making it difficult for them to talk at this time? Skills to Use for Effective Communication Active Attentive Listening Encourage communication by listening: Nodding your head. Using comments like “I see,” or “Tell me more.” Repeating two to three words from their last sentence, “…you were shocked by the diagnosis.” Reflecting, “So you mean that…” or, “If I understand what you are saying, you are feeling…”  Not changing the subject even though this can be a natural response to avoid difficult conversations.  Avoiding giving advice if possible unless asked.  Encouraging reminiscing Example of Active Listening  So we can go through an exercise  How did the nurse convey presence  Mohammed due you have a  What verbal and non verbal good example of this behaviors conveyed listening  How did the nurse provide supportive listening when patients are processing their diagnosis Mindful Presence  Mindful presence involves a nurse being nonverbally present for the patient and family members while also staying in the moment and being attentive, nonjudgmental, intuitive, and empathetic  Being mindful means having sincere curiosity, looking at a variety of perspectives, and not debating an issue that you may disagree with Try Using These Tools with Family & Friends-Get Practice  Have the person speak for 5 minutes about a loss they have experienced while you listen without interrupting. Afterward, ask the person who spoke: What did it feel like to describe your loss? How did I respond to you? Did you feel that I was being attentive? Was there any particular thing that made you feel that I was, in fact, listening to you? Review Question  You are speaking with the family of Mr. Clark who was just diagnosed with Parkinson’s disease. How can you best demonstrate attentive listening? 1. Change the subject to avoid difficult parts of the conversation. 2. Give advice to the family regarding the best ways to cope with the diagnosis. 3. Periodically stop the family and summarize what was said. 4. Encourage the family to reminisce and tell their story.  Communication Skill: Empathy  Empathy: Empathy for others is a critical Naming: “It sounds like you are frustrated.” competency for healthcare professionals to possess. Empathy involves three Understanding: “This helps me understand dimensions: what you are thinking.” Beware: Avoid Attending to the emotions of another leaving the impression that you understand everything the patient is talking about, (relational) because you cannot. Understanding the emotions (cognitive) Respecting: “I can see you have really been Responding to emotions trying to follow our instructions.” This is an (communicative) opportunity to use praise. NURSE acronym how to articulate Supporting: “I will do my best to make sure empathy you have what you need.” This statement shows your commitment to assisting the patient. Exploring: “Could you say more about what you mean when you say that…”  Ask questions to understand Tell or sharing information Asking questions again ASK-TELL-ASK Lets do role playing!! Delivering Difficult News: Spikes Protocol S: Setting (Physical Context) The physical context of the interview. It is of even greater importance for the interview in which bad news will be shared. P: Perception (Finding out How Much the Patient Knows or Suspects) Before providing further information, it is always important to determine what the patient knows about the medical condition and its effect on the future. In fact, sharing information may be awkward, superfluous, or even impossible without first knowing what the patient already knows. In all cases, you should try to establish what the patient knows about the diagnosis This information can be gathered in many ways. Some of the questions that may be useful include the following:  “What have you made of the illness so far?”  “What did the previous doctors tell you about illness/operation, etc.?” “Have you been worried about yourself?”  “Did you think something serious was going on when [...]?”  As the patient replies, analyze the response. Important information can be obtained from three major features of the reply. SPIKES Protocol Invitation (Finding out How Much the Patient Wants to Know)  This is the single most crucial step in any information-giving discussion.  It is far easier to proceed with giving the news if there is a clear invitation from the patient to do so.  It is often impossible to predict which patients will want to hear the truth and which will not.  50% to 98.5% want full disclosure depending on patient demographics and the diagnosis suspected.  Because no characteristics predict whether a patient desires disclosure, it seems logical simply to ask. SPIKES Protocol K: Knowledge (Sharing Medical Information) The process by which medical information is transmitted can be thought of as consisting of two crucial steps. Process of aligning  Know what the patient knows--starting point for sharing the information.  Reinforce those parts that are correct (using the patient’s words if possible) and proceed from there.  This process has been called aligning, a useful term to describe the process by which you line up the information you wish to impart on the baseline of the patient’s current knowledge. SPIKES Protocol EDUCATING  The process of sharing information should be a gradual one in which the patient’s perception is steadily shifted until it is in close approximation to the medical reality.  This part of the interview can use- fully be compared with steering an oil tanker.  You cannot make sudden lurches and expect the patient’s perception to change instantly.  You have to apply slow and steady guidance over the direction of the interview and observe the responses as you do so.  In the process, you build on those responses from the patient that are bringing him or her closer to the facts and emphasize the relevant medical information.  The key ingredients are steady observation and continued gentle guidance of the direction of the interview rather than sudden lurches. SPIKES—E-Educating Give Information in Small Amounts: The Warning Shot.  Medical information is hard for patients to digest and more so if it concerns a grave prognosis or threat of death.  The rule is therefore to give the information in small amounts.  One of the most useful principles is the idea of the “warning shot.” If there is clearly a large gap between the patient’s expectations and the reality of the situation, you can facilitate understanding by giving a warning that things are more serious than they appear  Check understanding frequently & reinforce Use Plain Language.  Technical jargon (“medspeak”) is an efficient language for transmitting codified information in a short time.  Because it takes many years to learn, it is also comforting to the professional.  Patients, however, have not learned to speak this language and cannot express their emotions in it. SPIKES Protocol E: Emotions and Empathic Responses (Responding to the Patient’s Feelings)  The patient’s reactions to his or her medical condition and the professional’s response to those reactions define their relationship and determine whether it offers support for the patient.  Hence the professional’s ability to under- stand and respond sensitively to the emotions expressed by the patient is central to all communication The central components of the professional’s response are  (a) assessment of the patient’s response and  (b) empathic responses from the professional.  SPIKES Protocol S: Strategy and Summary ORGANIZING AND PLANNING  Professional summarizes the situation and makes an operational plan and a contract for the future.  It should conclude every interview with a EOL patient, not just an interview in which bad news is discussed.  The patient may feel bewildered, dispirited, and disorganized using empathy our responsibilities consist of more than simply reflecting the patient’s emotions.  The patient is looking to us to make sense of any confusion and to offer plans for the future.  Important to try to put together what is known of the patient’s agenda, the medical situation, the plan of management, and a contract for the future.  Identify coping strategies & support them- to look at the resources available to the patient, both internally and externally. Facilitating Decision near EOL  Facilitating decisions when a patient is nearing the end of life can be difficult, so it is imperative to use appropriate communication strategies when working with patients and family members. Be willing to both initiate and engage in discussions about issues relating to care at the end of life.  Use words like “death” and “dying” in discussions with the dying patient and their families.  Maintain hope and be specific about what there is hope for (e.g., pain/symptom control, a good death, a chance to resolve issues with family, etc.).  Clarify the benefits and burdens of treatment options.  Ensure that all healthcare professionals are giving consistent information. Establish the Goals of Care  Knowing how to start and phrase questions about establishing goals of care with patients and families can be challenging. Here are some great questions to consider: What is your understanding of your situation? How much medication information do you want? How do you like to get medical information? What is important to you? What are you hoping for? Have you thought about a time when you could be sicker? Do you have a living will or advance directive that states what you want to happen at that time? Review Question  Which communication techniques would be appropriate when communicating with patients with serious illnesses and their families? Select all that apply. 1. Ask the individual to describe what they know about their illness 2. Meet patients where they are on their emotional trajectory 3. Avoid the use of the words death and dying except when culturally inappropriate 4. Tell the patient and family I'm sorry when giving bad news 5. Summarize and restate what has been understood 6. Avoid giving the patient hope when there is no hope Family Meeting Purpose  Family meetings provide an opportunity for patients, their families, and the interdisciplinary team to share information. Family meetings allow you to: Build trust, which is essential Share information. Identify any needs or fears of the patient and family. Assist in working with the patient and family to set goals of care.  Attendance & Defining the Purpose  The patient should be asked if they What is covered: want to or are able to attend and  The condition of the patient which family members they wish to  The trajectory of the condition attend. The surrogate decision- maker should be included.  Realistic treatments  State the Purpose: The purpose of  Goals of care the meeting is to discuss details of  Information for decision-making the patient's condition and  Areas of discord formulate a plan of care or revise the plan of care.  Other areas of serious illness Barrier to Effective Family Meetings  Lack of knowledge and experience of healthcare providers  Families being unwilling to discuss issues  Inability to contact family  Lack of privacy  Lack of time  Cultural differences  Acute changes in the patient  Sudden emotionally significant events or change  Cognitive impairment, specifically related to the patient 7 Aspects of Holding a Family Meeting  Update Team before the meeting  Hold meeting in private-make introductions  Perform assessment of current family perspectives  Giving information-updates in parts with pauses for family to think and ask questions  Provide support  Prioritize patient values—what is important to your loved one  Update the plan of care-align with patient values Effective Interdisciplinary Team Communication  Team members should communicate daily. Clarify goals of all parties to avoid misinterpretations.  Communication should be collaborative which supports decision-making between all disciplines.  Regularly scheduled team meetings are an appropriate tool for excellent communication. This benefits the patient, family, and team. Handling Conflict  Expect conflicts to occur. Be prepared for them. Here are some steps to help defuse conflicts  Pay attention to the conflict internally. You may feel anger, irritation, or boredom. Watch body language (e.g., eyes rolling, sideway glances, etc.). Don’t ignore  Find a nonjudgmental starting point: “Can we talk about what’s happening here?”  Listen to their story: “Tell me about your perspective on this.” Listen and give the person your full attention. As you listen, do not start preparing your arguments.  Identify what the conflict is about and articulate it as a shared interest: “So, here is my take on the situation.” “It appears that we both are interested in the care of Patient X.”  Brainstorm options: “Could we list a couple of options, then spend a minute talking about the pros and cons?”  Look for options that recognize the interests of all involved  Remember that some conflicts cannot be resolved: Not all conflicts have a solution that everyone can agree upon. So, in some cases, it is important to “agree to disagree.  Testing Your Knowledge on Communication A patient with end-stage heart disease arrives at the emergency  Ask the daughter if she would like to department unconscious after consider treatment. sustaining her third myocardial  Talk to the physician about moving the infarction. The physician has told patient to a unit with more privacy. the daughter that without major  Remain present with the daughter, surgery, her mother could die using silence to impart comfort. today. You find the daughter  Assure the daughter that she does not crying by the patient's bedside. need to stay with her mother. What intervention is most appropriate FIRST when communicating with this daughter?   We can never give someone too much information.  What statement about  We communicate only when we communication is CORRECT? choose to communicate.  The majority of communication occurs through nonverbal messages.  Communication is primarily words and their meanings.   Trust is built  What is one benefit of family  Certain information is guarded meetings that makes them important?  Healthcare team fears are identified  The team's agenda for care is communicated   State that everyone reacts the same when getting difficult news.  What is the BEST action after a  Describe when the patient will be able patient and family have received to process all the information they are difficult news? receiving.  Ask about the patient's reactions to the news.  Continue to explain the details of the information given.   Let the patient talk but interrupt as needed and correct misinformation.  Give the patient limited information to . What action will BEST assist a support a perception of hope. patient who is receiving difficult  Find out how much information the news? patient and family want to know.  Research the patient's diagnosis to provide them with as much information as possible in one meeting.   Determining a patient's  What action by a healthcare communication preferences professional has the potential to  Expressing personal ethical concerns cause a communication barrier?  Accepting not having all the answers  Understanding the patient's culture   Healthcare professionals will be  What statement BEST reflects honest and truthful in all communications. what patients with serious  Healthcare professionals will not illnesses expect from healthcare necessarily discuss the patient's care professionals? with the entire healthcare team.  Healthcare professionals will decide what patient issues need to be addressed first.  Healthcare professionals will give them advice.   Identify your own emotions and try to describe them to the patient.  Identify the areas of conflict,  What action is the MOST recognizing that they may never be successful for resolving conflict? fully resolved  Provide the patient and family with more information and eventually everyone will agree.  Discuss areas of conflict with each family member separately instead of in a family meeting. References  Adler, M. (2017). Therapeutic presence. In P. Coyne, B. Bobb, & K. Plakovic (Eds.), Conversations in palliative care (4th ed.). Hospice and Palliative Nurses Association.  Boreale, K. (2017). Communication. In P. Coyne, B. Bobb, & K. Plakovic (Eds.), Conversations in palliative care (4th ed., pp. 33-46). Hospice and Palliative Nurses Association.  Henderson, A., Ryan, R., Henderson, S., Young, J., Bradford, N. K., Bothroyd, J. I., & Herbert, A. (2018). Interventions for interpersonal communication about end-of-life care between health practitioners and affected people. The Cochrane Database of Systematic Reviews, 9(CD013116). https://doi.org/10.1002/14651858.CD013116  McHugh, M.E., & Buschman, P.R. (2016). Communication at the time of death. In C. Dahlin, P.J. Coyne, & B.R. Ferrell (Eds.), Advanced practice palliative nursing (pp. 395-404). Oxford University Press. Palliative Care/End of Life Care Pain Spiritual Weakness Care Insomnia Fatigue Psychological Cultural Anorexia Care Care Dyspnea Palliative/End of Life Care Nausea Vomiting Constipation Physical Social Care Care Symptoms & Suffering  Managing physical and psychological symptoms well alleviates distress and suffering.  Implementing pharmacologic, non- pharmacologic, and psychosocial interventions together promotes quality of life. This Photo by Unknown Author is licensed under CC BY-NC Common Physical Symptoms Assessed in Palliative Care/End of Life Nausea Dry mouth Constipati Shortness Pain and or on or of Breath vomiting secretions diarrhea Bowel Fatigue obstructio Delirium Anorexia and or Insomnia n weakness  Pain  “Pain finds its way everywhere, into my vision, my feelings, my sense of judgment; it’s an infiltration … You have to die so many times before you die.” This Photo by Unknown Author is licensed under CC BY-NC-ND Alphonse Daudet, In the Land of Pain, 1840-1897 What is Pain  Pain is an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage  Pain is more than a change in the nervous system but is also reflective of the patient’s past pain experiences and the meaning of the pain.  Although acute pain is adaptive and serves as a warning sign, chronic pain adversely affects functional, social, and psychological well- being. Pain is subjective Cancer & Pain  Approximately 80% of patients with advanced cancer have moderate to severe pain and often experience multiple sites of pain National Cancer Institute [NCI], 2022) Challenges to Pain Management  Challenges to pain management in serious illness include ;  Patients believe pain is normal.  The healthcare team may fail to see pain assessment/management as a priority.  The healthcare team may not be well-educated in pain management.  Patients fear that their pain means their cancer or other serious illness is progressing/recurring  Patients are afraid that if they mention pain, their provider may see them as “drug seeking.”  Patients and/or families may be afraid of “addiction” or substance use disorder.  Patients may believe that everything possible is being done to alleviate the pain. Effects of Unrelieved Pain  One major effect is that unresolved pain can actually hasten death because of:  Increased physiological stress  Decreased immunity  Decreased mobility  Increased possibility of pneumonia and thromboembolism  Increased workload of the heart and lungs Overcoming Barriers to Effective Pain Management  Education of professionals  Reliable and valid pain assessment  Evaluate pain from physical, functional, psychosocial, cultural & spiritual  Evidence based pain management  Choose appropriate analgesics and adjuvant analgesics.  Anticipate and treat the adverse effects of analgesics.  Provide an interdisciplinary approach  Education of patient and families  Set realistic goals  Most cancer pain can be alleviated Population where Pain is Often Not Treated Well  Older adults: Pain is often not assessed well & they are less likely to admit they are experiencing it  Prior hx of substance abuse  Children: untreated related to fear of SUD or don’t feel pain same way because of underdeveloped nervous system (FLACC scale)  Pain Deniers: Stoic personality/culture as sign of weakness  Language barriers  People who are challenged with paying Goals of Pain Management  National Comprehensive Care Network (NCCN, 2022; Swarm et al., 2019) has outlined the following goals for assessing and managing pain:  Pain and other symptoms will be controlled.  Distress caused by pain will be decreased for both the patient and their family and/or caregivers.  The patient will have a sense of control.  Caregiver burden will be relieved.  Relationships will be strengthened.  Quality of life (QOL) will be optimized.  The meaning of life and illness will be enhanced as the patient experiences personal growth during this time. Pain Etiology  Nociceptive, which includes somatic and visceral pain  Nociceptive pain is usually related to damage to bones, soft tissues, or internal organs and is often described as aching or throbbing.  Arthritis is an example of somatic pain.  Visceral pain is often diffuse and described as squeezing or cramping. Examples include liver metastases or pancreatitis pain.  Neuropathic pain: generally due to damage to the central or peripheral nervous systems. Patients describe the pain as burning, tingling, electrical, or shooting.  Examples include diabetic neuropathy or postherpetic neuropathy (i.e., related to shingles). Pain: Acute or Chronic  Acute Pain: generally defined as pain lasting less than 3 months  Chronic Pain: persists for longer than 3 to 6 months.  Chronic with acute exacerbation: Sickle cell, Low back pain Pain Assessment Tools  Visual Analogue Scale: 0-10 (verbal or picture scales)  Behavioral Pain Scale or CPOT: intubated or limited cognition patients Communication: Part of Pain Assessment Listen to the patient. Do not have your own agenda for the meeting. Verbalize back to the patient what you heard after they have described their pain. Elicit comments about how the pain affects the patient’s quality of life, as well as those who care for the patients. Provide a safe, trusting, and supportive environment for the patient and family to share their fears, concerns, and hopes. Recognize that significant and important information can be obtained in a short period of time. Assess for Overall Pain Experience  Assess for associated symptoms such as fatigue, sleep disorders, and others that might affect or be related to the pain experience.  Psychosocial factors such as anxiety, depression, caregiver/family concerns, financial worries, isolation, loss of independence, and fear of death should all be explored when performing a pain assessment.  Pain Goals: If we can do a better job with your pain management, what will you be able to do that you cannot now? This Photo by Unknown Author is licensed under CC BY-NC Foci of Pain Assessment  Location: radiation of pain, number of sites P: Precipitating factors,  Intensity: pain scales palliating factors, previous therapy  Quality: nociceptive, visceral, neuropathic Q: Quality  Temporal Factors: onset, duration, R: frequency Region/radiation/referral  Aggravating & alleviating factors S: Severity  Past & current therapies: What has T: Temporal been effective in the past, also Reassess regularly, document & nonpharmacological strategies communicate findings & coach patient to report when there are Physical & Functional Assessment  Physical Exam  Functional Assessment  Muscle tone, coordination, and  Observe reflexes  Examine  Gait and ability to walk  Palpation  Ability to perform self-care (  Auscultate  Walking (e.g., falls, stepping up and down curbs or steps)  Percussion  Other independent activities of daily living Clinical Question  You are completing a comprehensive pain assessment on Marlin Oliver, a 56-year-old man with a diagnosis of gastrointestinal cancer. What is the best INITIAL method for you to determine the presence of pain?  Observe for pain behaviors  Obtain proxy reporting from caregivers that know Mr. Oliver  Asked Mr. Oliver if he is in pain  Perform laboratory and diagnostic testing Pain Medication Classification  Non-opioids:  Opioids  Adjuvants Non-Opioids  Acetaminophen  Nonsteroidal anti-inflammatory drugs  Management of mild (NSAIDS) pain or as an addition to  Anti-inflammatory, analgesic, and antipyretic properties other analgesics for more intense pain.  Useful in the treatment of bone pain, dysmenorrhea, and many other pain syndromes Antipyretic effect  Indicated for mild to moderate pain when used alone or  Adverse effect: liver as an adjunct to opioids for severe pain. failure (doses at 2000-  NSAIDS have a ceiling effect 3000mg/day)  Ibuprofen: 2400/24hr  Naproxen 1375mg/24hrs  Ketoralac (Toradol): 120mg/24hrs (IV/IM) if po 40mg/24hrs  Adverse effect: gastric toxicity/GI bleed & renal dysfunction  Opioids Analgesic and acts to block the Hydrocodone neurotransmitters that are Hydromorphone involved in processing pain Morphine Contraindication is a history of Oxycodone hypersensitivity such as rash, Oxymorphone (Opana®) wheezing, and edema Fentanyl, which can be administered in a variety of ways including Useful when pain is associated parenteral, spinal, transdermal, transmucosal (buccal, sublingual, and with advanced disease and for nasal), and by nebulizer dyspnea relief. Buprenorphine (Butrans®), which is an agonist/antagonist drug Use an opioid without active available in transdermal patches for the management of pain, but has a ceiling dose metabolites, for example Tapentadol (Nucynta®), which is an opioid (approximately equal to fentanyl or hydromorphone if oxycodone potency) and a norepinephrine reuptake inhibitor useful in renal function is declining or healing neuropathic pain fluctuating Tramadol (Ultram®), which is a weak opioid that blocks reuptake of serotonin and norepinephrine potentially beneficial for neuropathic pain, but does have a ceiling dose  Medications Available at Vinmec Medication Dose Route Name Use Tramadol 50mg Injection Tramadol-Hameln Tx mod-severe pain 100mg/2ml opioid Morphine 10mg/20mg/ Oral same Opioid Immediate 30mg/50mg release Morphine 10mg/ml Injection Morphine Injection Hydrochloride 10mg/1ml Fentanyl 12,25,50,75,100 Patches Durogesic 25mcg Rapid acting synthetic opioid Fentanyl 500ug/ml Injection Fentanyl 0.5mg/10ml Fenilham 100mcg/2ml Amitriptyline 10,25,50,75,100 Oral Mood/depression mg Medications Available at Vinmec Medication Dose Route Name Use Pregabalin 25,50,75,100.150 Oral Lyrica 75mg Neuropathic pain ,200mg Gabapentin 100,300,400mg Oral Neurontin 300mg Neuropathic pain Haloperidol 0.5,1,2,5,10,20m Oral Haloperidol 1.5mg Antipsychotic g Injection Haloperidol 0.5% 5mg/ml 5mg/ml Midazolam 1mg/ml, 5mg/ml Injection Paciflam 5mg/1ml Benzodiazepine/ Antianxiety Side Effects of Opioids for Pain Management  Respiratory depression (rare in palliative care management of pain)  Greatest risk is 1st dose in an opioid naïve patient  Occurs with change in dose or with co-administration of benzodiazepines  Consider reversal if;  Unarousable, low RR, low oxygenation  Narcan dose 1 amp (.4mg) mix in 10ml of sterile saline-administer in 1ml increments until reverse of respiratory depression  Duration of Narcan 30 -60 minutes—may need to repeat Side Effects of Opioids for Pain Management  Constipation  Produce reduction in peristalsis and reabsorption of water from the stool back into the intestinal lining  Can worsen other symptoms of nausea and vomiting  Constipation can also be from ileus, GI obstruction or spinal cord compression  Treatment;  Laxative or stool softener at beginning of opioid administration & cont’d till opioid discontinued  Laxative is titrated based on freq & consistency of bowel movements  If constipation develops tx: stimulants, enemas  If traditional method don’t consider peripherally acting u-opioid receptors (Methylnaltrexone) Side Effects of Opioids for Pain Management  Sedative effect: If remain too sedated  Rotate different opioids  Ritalin can be given in morning and lunch  Urinary Retention  Common in opioid naïve patients or spinal delivery of medications (catheter utilization if necessary)  Nausea & vomiting from ↓ GI motility & constipation or motion induced  Anti-emetics Adjuvant Therapies  Antidepressants  Opioid refractory neuropathic pain-can be used as frontline as well  Use of tricyclic antidepressants-pay attention to side effects of dry mouth, constipation and sometimes cardiac arrythmias  Anticonvulsants  Use for neuropathic pain; neuropathies, post herpetic neuralgia, trigeminal neuralgia & phantom pain  Gabapentin: 900 to 3600 mg/day for analgesic doses  Local Anesthetics: inhibit movement of sodium ions across membrane of sensory nerves preventing transmission of pain  Neuropathic pain: lidocaine-IV, Bupivacaine-spinally or topical cream or patch  Patches to help with neuropathic pain OTC: NSAID patch, creams for musculoskeletal pain –Capsaicin  Corticosteroids  Inhibit prostaglandins synthesis and reduce edema surrounding tissue  Tx neuropathic pain, bone pain, visceral pain-Dexamethasone 4 to 24mg/day Opioids: Routes of Administration  Oral but closer to death may need alternative routes  Misconception that IV, IM or SUBQ is stronger  Oral deliver can provide equivalent analgesia, r/t metabolism dose needs to be increased compared to IM, IV or SUBQ  10mg morphine IV, IM, SUBQ is like 20mg orally  Oral-immediate & long-acting formulas  Other routes: mucosal/buccal, sublingual, intranasal, rectal with caution  Fentanyl: has transdermal delivery (q72 hrs) Opioid Dose Titration  Begin opioid dosing with immediate-release formulations available to the patient as needed to relieve pain.  Patient has achieved pain relief for 24 to 48 hours, calculate the 24-hour dose of opioid and convert to a long-acting formulation to provide background analgesia for continuous pain  Immediate release formulas for breakthrough pain  The dose of immediate-release medication is usually 10 to 20% of the total 24-hour dose of the routine opioid, every 1 to 2 hours PRN.  If the patient is receiving a continuous infusion of an opioid (either IV or SUBQ), breakthrough doses are calculated as 50 to 100% of the hourly rate Opioid Rotation  If one opioid is ineffective after an adequate upward titration of the dose, or it produces adverse effects, another opioid may be used  Consider the following factors; Choose the new drug based on prior experience, availability, and cost. Calculate the approximate dose from a conversion table. When switching to another opioid, other than methadone, or transitioning to a long-acting opioid, identify a dose reduction window of approximately 5 to 20% less than the calculated conversion dose, Assess response; increase or decrease the new opioid 15 to 30% PRN Patients with Substance Use Disorder  Patients with SUD are at high-risk for undertreatment of pain and misuse of opioids  Those who used drugs/alcohol in the past but are not using now  Those in methadone maintenance programs or prescribed buprenorphine for medication assisted therapy who are not using drugs/alcohol now  Those in methadone maintenance programs or prescribed buprenorphine for medication assisted therapy who are continuing to use drugs/alcohol now  Those using drugs/alcohol occasionally/socially  Those who currently and actively misuse illicit substances Treatment Suggestions for Patient with SUD Assess pain and risk for SUD/diversion. Implement opioid management agreements/contracts. Hold frequent team meetings.  Provide a structured and safe environment for patients and their support persons.  Set realistic goals for pain and substance use disorder. Recovery may not be possible if the patient doesn’t engage in rehabilitation.  Set limits and be consistent.  Optimize the use of non-opioids, adjuvants, interventional, and non-pharmacologic treatments  Refer to substance use disorder specialists. The goal of pain management in the face of substance abuse treatment is harm reduction and controlled use with the hope of minimizing interference with effective symptom management, particularly pain. Interventional Therapies for Pain  Neurolytic Blocks for localized pain  Neuroablative procedures  Vertebroplasty-strengthen vertebrae Non-Pharmacologic Strategies  Guided imagery  Massage  Acupuncture  Cognitive reframing  TENS “The most important practical lesson that can be given to nurses is to teach them what to observe...” ~ Florence Nightingale, 1859 Common Physical Symptoms Assessed in Palliative Care/End of Life Nausea Dry mouth Constipati Shortness Pain and or on or of Breath vomiting secretions diarrhea Bowel Fatigue obstructio Delirium Anorexia and or Insomnia n weakness Shortness of Breath-Dyspnea Baker Rogers, J., Modi, P., & Minteer, J. F. (2021). Dyspnea in Palliative Care. PubMed; StatPearls Publishing. https://www.ncbi.nlm.nih.gov/books/NBK526122/. ‌Symptom Management Guidelines - BC Centre for Palliative Care. (2017, September 22). https://www.bc-cpc.ca/publications/symptom-management-guidelines/ Dyspnea  Subjective experience of breathing discomfort that comprises qualitatively distinct sensations that vary in intensity. It may induce secondary physiological and behavioral responses"  Dyspnea is the fourth most common symptom in oncological patients, with an incidence of 21-90%  Results in multidimensional distress to patients and caregivers  Psychological effects include: anxiety, panic, hopelessness, loss of enjoyment of life, and social isolation  The sensation of dyspnea arises from the awareness of a respiratory supply-and-demand mismatch.  Most common reason for visits to ED BC Centre for Palliative Care, 2017 CAUSES OF DYSPNEA Dyspnea type Mechanism Examples Bronchial compression Superior vena cava obstruction Direct tumor effects Lymphangitic carcinomatosis Venous thromboembolism Malignant Pericardial effusion Malignant effusions Pleural effusion Ascites Pneumonitis from systemic therapy or Treatment-related radiation Lobectomy or pneumonectomy Congestive heart failure/pulmonary edema Cardiovascular Ischemic heart disease Chronic obstructive pulmonary disease Interstitial lung disease Pulmonary Pneumonia Nonmalignant Asthma Anemia Anxiety, Depression Other Obstructive sleep apnea Neuromuscular disease History of smoking  Pathophysiology of Dyspnea  Respiratory Control: Normal breathing involves input from various receptors in the chest wall, airways, and chemoreceptors in blood vessels, all sending signals to the brain via nerves like the vagus and phrenic nerves.  Sensation of Dyspnea: Dyspnea arises when there's a mismatch between the body's demand for oxygen and the respiratory system's ability to meet it, perceived as increased demand, decreased capacity, or both. Pathophysiology of Dyspnea  Role of Cortex and Limbic System: Input from the motor cortex and limbic system influences the perception of dyspnea, similar to how hunger or pain is experienced.  Pathological Factors: Changes in respiratory muscles, lung elasticity, and chest wall stiffness due to aging or disease contribute to dyspnea.  Anxiety and Dyspnea: Anxiety worsens dyspnea by increasing respiratory and heart rate, creating a cycle of heightened distress. DYSPNEA ASSESSMENT: LIKE PAIN ASSESSMENT-SUBJECTIVE Mnemonic Letter Assessment Questions Whenever possible, ask the patient directly. Involve family as appropriate and desired by the patient. Onset When did it begin? How long does it last? How often does it occur? Provoking/Palliating What brings it on? What makes it better? What makes it worse? Quality What does it feel like? Can you describe it? Is it worse lying down or sitting? Region/Radiation Not applicable. Severity How severe is this symptom? What would you rate it on a scale of 0-10 (0 being none and 10 being the worst possible)? Right now? At worst? On average? When you are walking? Or climbing stairs? Or doing activities of daily living? How bothered are you by this symptom? Are there any other symptom(s) that accompany this symptom (e.g., pain in your chest, anxiety, fatigue)? Treatment What medications and treatments are you currently using? Are you using any non-prescription treatments, herbal remedies, or traditional healing practices? How effective are these? Do you have any side effects from the medications and treatments Do you have concerns about side effects or cost of treatments? Understanding What do you believe is causing this symptom? How is it affecting you and/or your family? What is most concerning to you? Values What overall goals do we need to keep in mind as we manage this symptom? What is your acceptable level for this symptom (0-10)? What are you having trouble doing because of this symptom that you would like to do? Dyspnea Scales  Scales for assessment of dyspnea in cancer patients: Because dyspnea is a subjective symptom, the intensity of dyspnea should be measured using a patient-reported outcome scale, which should be adopted as the primary outcome in clinical research on cancer dyspnea treatment.  Numerical rating scale: a subjective scale used for the quantitative assessment of dyspnea intensity. The NRS is an 11-point numerical scale ranging from 0 (no dyspnea) to 10 (worst possible dyspnea).  Visual analogue scale: another major subjective scale for the quantitative assessment of dyspnea intensity. Although it has several variations, VAS is typically a 100 mm straight horizontal or vertical line, where one end of the line defined ‘no dyspnea’ and the other end ‘worst possible dyspnea.  Modified Borg scale: a subjective scale for quantitative assessment of dyspnea intensity. The modified Borg scale is vertically lined with a 12-point numerical scale from 0 to 10 (including 0.5) anchored corresponding verbal expression of intensity.  Cancer dyspnea scale: a multidimensional scale for the assessment of subjective perception of dyspnea in cancer patients, which was developed in Japanese and has been validated in other languages. The CDS consists of 12 items, including five for sense of effort, three for sense of discomfort and four for sense of anxiety. Examples Dyspnea Work Up: Consider Goals of Care  The patient may need a clinical examination by a doctor or specialist nurse. They may do further investigations to identify any reversible causes of the patient’s symptoms.  The choice of appropriate diagnostic tests should be guided by the stage of disease, the prognosis, the balance of the benefits and burdens, treatment goals, and patient preferences.  Avoid unnecessary investigation: consider the stage of disease, risk-to-benefit ratio and the wishes of the patient and their family. Physical Exam Elevated jugular pressure Bilateral crackles If unable to self report Respiratory rate and depth Look for the use of Use of accessory muscles Pain with respiratory movement accessory muscles, Functional status uneven breathing, Pursed lips grimacing, and Cyanosis gasping. Inability to speak Oxygen saturation Dyspnea Management  When considering a management approach, always balance burden of a possible intervention against the likely benefit (e.g., does the intervention require transfer to another care setting?).  Dyspnea may not be due to hypoxia. Use other methods to provide fresh air when O2 levels are satisfactory. (fans)  Utilize anticipatory planning to promote self-care for respiratory distress.  Focus on relaxation and other non-pharmacological techniques.  Opioids are first line of pharmacological treatment.  Non-Pharmacological Management 1) Develop activity pacing with techniques to provide energy conservation. 2) Teach the patient breath control methods, e.g., pursed lip and diaphragmatic breathing. 3) Small, frequent meals will reduce abdominal pressure on the diaphragm 4) High-Fowler position, supported by pillow, or Orthopnea (tripod) position (forward leaning with arms on table). 5) Provide supportive presence when dyspnea distressing; do not leave patient alone 6) Walking aids 7) Relaxation techniques of guided imagery and therapeutic touch 8) Strive for an air source that is fresh, cool, humidified and free of irritants. Broglio, 2017; Donesky, 2019; Meyer & Ring, 2019  Pharmacological Interventions  Mild level of distress (patient rating  Moderate level of distress (patient rating of 4 to 6/10 -- moderate of 1 to 3/10 -- mild dyspnea) dyspnea)  Bronchodilators such as salbutamol, ipratropium for asthma, COPD.  Bronchodilators such as salbutamol,  For ongoing dyspnea, begin a regular opioid dose with concurrent PRN: ipratropium for asthma, COPD. Morphine orally: 2.5 mg immediate release every 4 hours. Or Morphine  Provide PRN oral or parenteral opioids if parenterally: 1 to 1.5 mg SC or IV every 4 hours. dyspnea is only episodic, and provide for  Titrate opioid dose incrementally by about 25% according to effectiveness and PRN usage in prior 24 hours. Goal is patient comfort, determined by subjective, breakthrough dyspnea when already on objective effect and tolerance. regular opioids.  Address preventive complications of opioids  The size of opioid dose should reflect the  Corticosteroid trial in major airway obstruction, lymphangitis patient’s severity of dyspnea and opioid carcinomatosis, radiation or drug-induced pneumonitis, or for tolerance. If no prior opioids and mild endotracheal and bronchial. dyspnea; use morphine 2.5 mg immediate  Benzodiazepines may assist anxiety or panic, e.g., with the combination release orally every 4 hours PRN. of midazolam and morphine in terminal stage cancer patients with anxiety. Pharmacological Interventions  Severe distress (patient rating of 7 to 10/10 -- severe dyspnea = crisis management)  Use opioids and adjunctive anxiolytics/sedatives until comfort is achieved.  Opioid naive: use morphine 5 mg SC or IV bolus every 5 to 10 minutes. Double dose if no effect every three doses; hold and reassess once dyspnea is reduced, especially if very sedated.  Opioid tolerant: give full regular opioid dose SC or IV every 5 to 10 minutes. If ineffective, double dose as above.  If patient anxious, use one of the following with opioid: either midazolam 2.5 to 5 mg SC or IV, OR lorazepam 5 mg SC or IV every 5 to 15 minutes PRN. Managing Cough  Cough can result from chemical, inflammatory, or mechanical stimuli in the ears, nose, throat, trachea, bronchi, lungs, diaphragm, pericardium, or stomach  Assessment of cough should include obtaining a history, performing a physical examination, determining the precipitating and relieving factors and associated symptoms, and reviewing sputum production, including sputum color, consistency, and if blood is present in sputum  Medications that can be used to suppress the cough include opioids, dextromethorphan (Delsym®), and benzonatate (Tessalon®). Consider guaifenesin (Mucinex®) for thick secretions. Antibiotics may be used for infections. Steroids for inflammation, atropine for high volume secretions Patient & Family Education  Terminal patients and their families need to understand that interventions for dyspnea are merely palliative and not curative in most cases and only apply to the dyspnea or its cause, and not their overall terminal condition.  Inform patient and family that dyspnea is not always caused by low oxygen levels and may not improve with oxygen. Fresh air via a fan, positioning and opioids may be more helpful than oxygen.  Lifestyle Modifications: Emphasize the importance of maintaining a healthy weight, quitting smoking, staying physically active within recommended limits, and managing stress.  Breathing Techniques: Demonstrate techniques such as pursed-lip breathing or diaphragmatic breathing to help alleviate dyspnea during episodes.  Encourage family members to participate actively in the patient's care and support them emotionally Care at the Time of Death  “How People Die Remains in the Memory of Those Who Live on”. Cicely Saunders Introduction  Dying is a process. It involves the cessation of physical, psychological, social, and spiritual life here on earth.  Death is a normal part of the life cycle. As a healthcare provider, it should be viewed as an honor and privilege to be part of the care provided to a person who is dying, as well as their loved ones.  The journey towards the end of life is a deeply emotional and profound experience, marked by various signs and changes that signify the approaching transition.  Understanding the phases and associated signs/symptoms involved in the dying process is paramount for individuals and their families. (CareSearch, 2021), (Care at the Time of Death | Nursing Care at the End of Life, 2015). The Role of Healthcare Professionals in Death  Patients and families value shared decision-making, expert care, respect and compassion during the end-of-life period.  Identified barriers to providing appropriate end-of-life care include: Being unable to recognise the signs of dying, Inability to manage end-of-life symptoms, and Lack of ability to communicate with patients and loved ones about the dying process.  Appropriate recognition ensures that trained health professionals can work collaboratively with all members of the care team to confidently discontinue any treatments that may be burdensome in the last days of life, as well as provide care that optimises the patient’s wellbeing and respects their values and preferences.  Being able to recognise that a person is imminently dying is a crucial step to providing high quality EOL care. (CareSearch, 2021; Queensland Health, The Role of Healthcare Professionals in Death  In 2019, Ellershaw and Lakhani identified ten essential components for providing optimal care to individuals nearing the end of life: 1. Recognition that the patient’s death is nearing (and appropriate documentation of this). 2. Communication with the patient (if deemed suitable) and their relatives, carers or advocates to inform them that death is nearing. 3. Discussion about the patient’s preferences, feelings, faith, beliefs and values. 4. Anticipatory prescription of medicines to alleviate pain, excessive respiratory secretions, agitation, nausea, vomiting and SOB. 5. Review of all clinical interventions to ensure they are in the patient’s best interests. 6. Review of the patient’s hydration needs (including the commencement, continuation or cessation of artificial hydration). 7. Review of the patient’s nutrition needs (including the commencement, continuation or cessation of artificial nutrition). 8. Discussion of the care plan with the patient (if deemed suitable) and their relatives, carers or advocates. 9. Assessment of the patient every four hours. 10. Dignified and respectful care immediately after death. (CareSearch, 2021) Phases of Dying – (Actively dying)  According to ELNEC (2010), there are two typical roads to death that can occur during the actively dying process: the usual road or the difficult road. Phases of Dying – (Actively dying)  Physical signs and symptoms associated with both roads can accompany the patient months, weeks, days or hours before death and vary from person to person.  Below are common physical signs often observed in patients who are actively dying: Pain Dyspnea Fatigue Cough Bowel Changes Anorexia/ Nausea & Depression/ Incontinence Seizures Cachexia Vomiting Anxiety  The role of the nurse during the active dying phase is to support the patient and family by educating them on what they might expect to happen during this time, addressing their questions and concerns honestly, being an active listener, and providing emotional support and guidance. Phases of Dying – (Transitioning)  Transitioning is a term used by clinicians to describe the period of time in between the actively dying phase and the imminent phase.  In this phase, patients begin to withdraw from the physical world around them in preparation for their final journey.  Some examples of this could include: decreased interest in activities of life, less frequent and shorter interactions with others, and acknowledgement of the presence of people and things that are not visible by clinicians and caregivers.  During transitioning, it is important to keep the patient’s area as comfortable and peaceful as possible. Common lights and noises can contribute to restlessness and agitation; therefore it is advisable to keep lights soft, shades closed if possible, and external noises limited to a minimum. Phases of Dying – (Imminent)  The term imminent is defined as “about to happen, forthcoming or near” (Merriam-Webster, 2012). The patient has transitioned into this last phase of the dying process and death can occur at any point now.  Not all individuals will present with every sign or symptom, and the symptoms will occur in no particular order.  During this phase, the body is in the process of shutting down. Multi-system organ failure often occurs and will result in some typical symptoms.  As death becomes imminent, there is often a shift in the focus of care provided.  There are often several nursing interventions and activities for the nurse to perform during the imminent phase. Most of which are related to the communication, coordination and continual assessment and response to changes in patient’s status. Phases of Dying – (Imminent) Signs and Symptoms of Imminent Death System Signs and Symptoms Cardiovascular Cool, clammy skin; mottled extremities; rapid or irregular pulse Musculoskeleta Inability to ambulate, move, or turn in bed l Neurological Confusion, restlessness, increased lethargy, hallucinations Increased respiratory rate, inability to clear secretions, Cheyenne- Respiratory Stokes respirations, Presence of increased secretions (“death rattle”). Urinary Decreased and/or or dark urine output Phases of Dying – (Imminent)  When the death is imminent, the family must be informed that death is near. This has to be communicated to the family in a sensitive and calm manner.  It is important to educate families during the dying process that the final phase may progress very quickly as a way to encourage loved ones to come sooner rather than later.  The nurse can play a key role in facilitating collaborative care by engaging with the interdisciplinary team, which may include physicians, social workers, and spiritual care providers. This collaborative approach helps to ensure that families receive comprehensive and well-coordinated care to address their diverse needs. Clinical Signs And Their Estimated Time Before Death In Terminally-ill Individuals 3to 7 days Before >7to 28 days Before Death Death Death Death rattle (Terminal Decreased level of Delirium/Impaired respiratory secretions) consciousness consciousness Respiratory breathing with ↓response to verbal and Cold/Cool extremities mandibular movement visual stimuli Cheyne-Stokes breathing Dysphagia to liquids Refractory fatigue and weakness Absence of radial artery Agitation Declining functional pulse status/↑ frailty Urine output less than 200 Capillary refill >3 s Depression ml/day Non-reactive pupils Decreased speech Decreased breath sounds Peripheral cyanosis Irregular breathing pattern ↓ response to treatment Terminal restlessness Myoclonus Peripheral edema (terminal delirium) ↓ Blood pressure ↓ systolic BP