1 PALLIATIVE CARE 2 OBJECTIVES Know and understand: • The roles of palliative and hospice care in caring for seriously ill older patients • The quality indicators for palliative care • Techniques for communicating effectively when delivering serious news • How to assess and manage pain at the end of life • Best methods for managing non-pain symptoms at the end of life • The physician’s role in completing a death certificate • How health professionals can experience burnout 3 TOPICS COVERED • Facts About the Care of People with Serious Illness in the United States • Overall Care Near Death • Ethnographic Data • Palliative Care and Hospice • Quality Indicators for Palliative Care • Communication • Palliation of Symptoms • Death Certificate Completion • Health Professional Burnout • Choosing Wisely Recommendations END-OF-LIFE DEMOGRAPHICS IN THE UNITED STATES 4 • In the United States, the overwhelming majority of deaths occur in older adults • Seriously ill patients spend most of their final months at home, but most deaths occur in the hospital or nursing home • Location of death varies regionally: Portland: 35% in hospitals New York City: >80% in hospitals • The need for paid caregivers or institutionalization in the last months of life is much higher among poor individuals and women • Older adults with cognitive impairment and dementia are more likely to spend their last days in a nursing home QUALITY OF END OF LIFE IN THE UNITED STATES • Typical deaths are: Slow Associated with chronic disease in people with comorbidities Marked by dependency and care needs • Quality of life during the dying process is often poor because of inadequate treatment of distress; fragmented care; poor or absent communication among clinicians, patients, and families; enormous strains on family caregivers and support systems • Difficult decisions about use of life-prolonging treatments are commonly necessary 5 6 WHAT IS PALLIATIVE CARE? • Interdisciplinary care that aims to relieve suffering, improve quality of life, optimize function, and assist with decision making for patients with advanced illness and their families • It is offered simultaneously with all other appropriate medical treatment OVERALL CARE NEAR DEATH (1 of 2) • The Hospitalized Elderly Longitudinal Project (HELP) and the Choices, Attitudes, and Strategies for Care of Advanced Dementia at the End-of-Life (CASCADE) are two studies that examined the end of life for older adults HELP characterized the last 6 months of life and dying in 1,266 adults ≥80 years old. Investigators showed that people tend to overestimate their chances of survival near the end of life CASCADE described the course of 323 nursing-home residents with advanced dementia. Patients with advanced dementia were under-recognized to be at high risk of death and received suboptimal palliative care. • The results of both studies highlight the need for clinicians to talk with patients early about their preferences and to provide better symptom control and palliative measures at the end of life 7 OVERALL CARE NEAR DEATH (2 of 2) • It is challenging to provide excellent end-of-life care due to difficulty in being able to accurately prognosticate, especially in patients with chronic illness where exacerbations and remissions are common and unpredictable • Available Prognostic Tools – The Palliative Performance Scale: Embraces self-care function, as well as ratings of mobility, activity level, oral intake, and level of consciousness, and can be used for people with multiple comorbidities – Eprognosis: An online site, it is a repository of validated geriatric prognostic indices helpful in clinical practice – “Hospice in a Minute” is a free application for smart phones that includes a section on hospice eligibility criteria for several diseases 8 9 ETHNOGRAPHIC DATA • Studies show that a patient’s and family’s ethnic, cultural, and religious heritage can influence their responses to serious illness, desire for aggressive care, death, grief, and mourning • It is important for clinicians to determine who should be present for delivery of bad news or discussion of care goals • Not all patients and families from a particular background will respond and make choices in a similar manner. Assuming patients and families will do so can lead to misunderstanding. • One way to introduce the subject is to ask, “Is there anything about your culture or your beliefs that would be helpful for me to know as we plan together for the future?” 10 PALLIATIVE CARE AND HOSPICE • Palliative care: Interprofessional care that aims to relieve physical and emotional suffering, improve quality of life, optimize function, and assist with decision making for patients with advanced illness and their families. It is offered simultaneously with all other disease-modifying medical treatments, either by the primary medical team or in conjunction with a palliative care consultant. • Hospice: Specialized palliative care limited to patients who meet two criteria: their life expectancy is <6 months if their disease takes its natural course, and they (or their proxies) have elected to focus on comfort measures and forgo curative treatment 11 THE HOSPICE MEDICARE BENEFIT (1 of 2) • For beneficiaries with an expected prognosis of 6 months or less if the disease follows its usual course, certified by 2 licensed physicians. Patients may revoke their hospice benefit at any time. • Medicare guidelines require that the patient be recertified hospice-eligible every few months. If the patient is no longer judged to have a remaining life expectancy of <6 months, then he or she must be discharged from hospice. • As of 2011, CMS enacted a new regulation on hospices requiring a “face-to-face” visit for all patients entering their third certification period (at 6 months of hospice services) and every 60-day certification period thereafter to reevaluate the patient’s prognosis 12 THE HOSPICE MEDICARE BENEFIT (2 of 2) • Patients agree to forego curative treatments* and agree that the care plan for the terminal illness will be managed by hospice • Includes: Physician services, nursing care, medical equipment and supplies, medications, short-term inpatient care for symptom management and family respite, PT or OT, bereavement services, home-health aide services * Some hospices have “open access” and allow certain treatment to continue QUALITY INDICATORS FOR PALLIATIVE CARE • National Consensus Guidelines for Palliative Care consist of 8 domains (see next slide) • Emphasize the need for collaboration across health care settings and incorporate the growing evidence base in palliative care • Research demonstrates palliative care improves quality of life for patients and their families 13 NATIONAL CONSENSUS GUIDELINES FOR PALLIATIVE CARE Domain 14 Guideline Comments 1 Structure and Process Describes the interprofessional team engagement with patients and families, with emphasis on individual preferences 2 Physical Aspects Describes the assessment and management of physical symptoms with validated tools and a multidimensional approach to management 3 Psychological and Psychiatric Aspects Describes the collaborative assessment of psychological concerns and psychiatric diagnoses to enhance care; outlines requirement for a bereavement program for patients, families, and staff 4 Social Aspects Identifies the essential elements of palliative care social assessment and emphasizes identifying and supporting family strengths 5 Spiritual, Religious, and Existential Aspects Describes the assessment of these concerns through the disease course and the importance of evaluation by the interprofessional team 6 Cultural Aspects Defines cultural competence for the interprofessional team 7 Care of the Patient at the End of Life Describes communication and documentation of signs and symptoms of the dying process with the family 8 Ethical and Legal Aspects Describes advance care planning, ethics of palliative care, and legal issues STEPS IN COMMUNICATING SERIOUS NEWS A systematic approach to delivering serious news can foster collaboration among the patient, the family, and the clinician and enhance the patient’s and family’s ability to plan for the future, set realistic goals, and support one another emotionally • Prepare for the meeting • Establish the patient’s understanding • Determine how much the patient wants to know • Tell the patient • Respond to feelings and emotions • Organize a plan and follow-up visit 15 PREPARING TO DELIVER SERIOUS NEWS • Plan what will be discussed • Ensure that all medical facts and confirmations are available • Choose an appropriate, comfortable setting • Deliver the news in person, privately • Allow time for discussion • Minimize interruptions 16 ESTABLISH THE PATIENT’S UNDERSTANDING Ask questions such as: • “What do you understand about your illness?” • “When you first had symptom X, what did you think it might be?” • “What have other doctors told you about your condition or procedures that you have had?” • “What are you hoping for or worried about?” 17 DETERMINE HOW MUCH THE PATIENT WANTS TO KNOW (1 of 2) Important to: • Discuss the patient’s preferences and goals of care to help guide treatment recommendations • Understand what is important to the patient • Determine if and how they want information give to them • Determine how they want to participate in the decision making about their care 18 DETERMINE HOW MUCH THE PATIENT WANTS TO KNOW (2 of 2) • Patients with serious illness and their families also may have different communication needs from each other, and it is important to determine this early • Asking, “Are you the type of person who is comforted by details and test data?” or “Would it be helpful to discuss prognosis now?” both allows the patient to remain in control as well as determines the amount of information to which they are exposed 19 20 TELLING THE PATIENT • Deliver information in a sensitive, straightforward manner • Avoid technical language or euphemisms • Check for understanding • Phrasing the includes a warning helps prepare patients for bad news. “The report is back, and it is not as we had hoped.” • Based on these discussions, clinicians may offer to make a recommendation for care that is seen as consistent with the goals and values a patient has expressed 21 RESPOND TO FEELINGS AND EMOTIONS • Patients often report not hearing anything more after receiving notice of a life-threatening condition • Responding to emotions demonstrates empathy and may help patients to process them which may help them assimilate information about their prognosis or treatment options by making them feel understood • One approach to responding to emotions is, first, to recognize that the patient has had an emotional response; next, to name the emotion; and finally to explicitly respond to the patient in a way that acknowledges the emotion. The recognition can be verbal or nonverbal. 22 PLAN AND FOLLOW UP • Organize a plan and follow-up • Address patient’s concerns in an immediate plan Set an appointment for a follow-up visit Discuss additional tests, referrals, sources of support Provide information on how you can be reached with additional questions After patients’ preferences for end-of-life care are elicited (perhaps through surrogates), they must be faithfully communicated. Often, these preferences are documented in advance directives or written orders about cardiopulmonary resuscitation 23 ADVANCED DIRECTIVES • Studies show that these documents and orders are often ineffective in determining end-of-life treatment • Physician Orders for Life Sustaining Treatment (POLST)* : Constitute medical orders reflecting preferences for cardiopulmonary resuscitation, medical interventions, antibiotics, and artificial hydration and transfer across care settings • Research on the POLST program has shown a decreased rate of unwanted hospitalization and better documentation of preferences * The forms may go by slightly different names, depending on the jurisdiction. PALLIATIVE-FOCUSED SYMPTOM ASSESSMENT • Determine the patients goals of care • Assess the patient’s functional status • Assess the patient’s physical ability to tolerate different treatment modalities and routes of medication administration • Determine the patient’s overall prognosis Merge these data with the patient and family goals, values, and cultural norms through a process of shared decision making to develop a person-centered care plan 24 25 EFFECTIVE PAIN MANAGEMENT • Know the types of pain • Assess the patient’s level of pain • Minimize pain with nonpharmacologic techniques • Add pharmacologic analgesia when needed • Anticipate and manage the side effects of opioids 26 PALLIATION OF NON-PAIN SYMPTOMS • Constipation • Delirium • Nausea and vomiting • Dyspnea • Diarrhea • Cough • GI obstruction • Loud respiration • Anorexia and cachexia • Depression 27 CONSTIPATION • Common for terminally ill patients • Caused by opioids, immobility, poor fluid intake • Treatment: Prophylactic laxatives: stool softener & bowel stimulant (docusate sodium & senna or bisacodyl) If ineffective, add osmotic laxative (sorbitol, lactulose, polyethylene glycol) If no bowel movement in 4 days, consider enema If impaction occurs: disimpact manually or with enemas before starting laxative therapy If none of the above treatment strategies work and the constipation is related to opioid use, consider methylnaltrexone bromide or lubiprostone, both contraindicated with bowel obstruction 28 NAUSEA AND VOMITING • Key facts Occur in 40% to 70% of patients with advanced cancer May be caused by disease or its treatment • Keys to successful management involves: • Identifying the likely cause of the nausea • Selecting a medication that works on the cause • Giving around-the-clock medication if the nausea is constant • Evidence has shown that using topical lorazepam, diphenhydramine, and haloperidol gel (aka “ABH” is not effective and should not be used to treat nausea) 29 DIARRHEA • Affects 7%‒10% of patients with cancer being admitted to hospice • Defined as the passage of more than three unformed bowel movements within a 24-hour period • Consider fecal impaction presenting as watery diarrhea in immobile older patients on opioids • Review medications for excessive laxative therapy • Radiotherapy of the abdomen and pelvis can cause diarrhea and responds to cholestyramine (off label) • Diarrhea caused by fat malabsorption responds to pancreatic enzymes such as pancreatin 30 GASTROINTESTINAL OBSTRUCTION • Causes: Direct intraluminal obstruction by tumor, malignant infiltration of the bowel wall, external compression of the bowel wall, dysmotility, fecal impaction, adverse effects of radiation treatment, volvulus, and adhesions from previous surgeries • Up to 50% of patients with ovarian and GI cancers have malignant bowel obstruction • Patients diagnosed with malignant bowel obstruction have a median survival of 3 months • High symptom burden with hypersalivation, nausea, vomiting, colicky abdominal pain, anorexia, and weight loss GASTROINTESTINAL OBSTRUCTION TREATMENT • Evaluation and management depends on functional status, goals of care, expected survival • Treatment options: Surgical: Limited evidence for benefits in terms of quality of life at the end of life Endoscopic techniques: Stents, best used for single point of obstruction Medical management: Mainstay of treatment (combination therapy with opioids, antispasmodics medications, antiemetics, antisecretory agents, and corticosteroids) Nasogastric tubes: Temporary measure, used when patient admitted with bowel obstruction awaiting further treatment decisions 31 32 ANOREXIA AND CACHEXIA (1 of 2) • Loss of appetite is almost universal among terminally ill patients • Anorexia in actively dying patients who do not wish to eat should not be treated • Symptoms of dry mouth should be treated • Appetite stimulants (eg, megastrol acetate and corticosteroids (used off label)) may benefit patients in early stages but do not prolong survival or improve function or treatment tolerance of cancer therapies, and are associated with adverse events 33 ANOREXIA AND CACHEXIA (2 of 2) • Encourage patients to eat whatever is most appealing, without dietary restrictions • In patients with advanced dementia, offer oral-assisted feeding • Provide patient and family education regarding the normalcy of anorexia as a part of the end-of-life and dying process • Enteral feeding is not recommended at the end of life as it does not improve quality of life or survival and is associated with increased frequency of aspiration and other complications 34 DELIRIUM (1 of 2) • Common and distressing for both terminally ill patients and their families • Identify potentially reversible causes (infection, impaction, uncontrolled pain, urinary retention, medications, dehydration, and hypoxia) • Use low doses of nonsedating antipsychotic • Actively dying, nonambulatory patients may benefit from sedating antipsychotic • Avoid benzodiazepines 35 DELIRIUM (2 of 2) Treatment Options: • Nonpharmacologic approaches: minimizing noise, using an orientation board, mounting a visible clock in the room, using simple communication and minimizing disruptions • Pharmacologic approaches: Medications are indicated either to ensure the patient’s safety or if the delirium is causing distress Use low doses of nonsedating antipsychotic medications Actively dying, nonambulatory patients may benefit from sedating antipsychotic medications Avoid benzodiazepines due to their association with paradoxical agitation and worsening of delirium in older adults 36 DYSPNEA (1 of 2) • Assessment Patient self-report is the only reliable measure Respiratory rates, pulmonary congestion, and lab tests often do not correlate Goal of treatment is the subjective improvement of breathlessness, rather than lowering the respiratory rate to normal Often patients will report improvement in breathlessness yet still breathe rapidly 37 DYSPNEA (2 of 2) • Management Treat underlying cause, but do not delay symptom management Opioids are the most effective treatment agent. Act by decreasing the perception of dyspnea and do not affect respiratory drive. Both oral and parenteral formulations are effective Use O2 if saturation < 90% but use cautiously with patients who retain CO2 Cool air across the face by fan or an open window to stimulate 5th cranial (trigeminal) nerve & reduce dyspnea Benzodiazepines control anxiety but not dyspnea 38 COUGH • Causes Production of excess fluids Inhalation of foreign material Stimulation of irritant receptors in the airway • Management Treat underlying cause Add opioids if underlying disease not resolvable • Dextromethorphan: few sedative effects • Codeine, hydrocodone elixirs • Methadone syrup for longer duration of action Nebulized anesthetic for irritated pharynx of local infection or malignancy 39 LOUD RESPIRATION • The inability to clear secretions from the oropharynx, resulting in loud or “rattling” respirations at the end of life • Caused by secretions oscillating up and down during inspiration and expiration • Treatment: Family education prior to its occurrence Anticholinergics to reduce secretions Hyoscine (scopolamine patch) used off label, may be sedating Hyoscyamine Glycopyrrolate Atropine eye drops (off label) Careful monitoring is necessary when using anticholinergic drugs as they can contribute to dry mouth, constipation, delirium, and mucous plugging, 40 DEPRESSION (1 of 2) • Under-recognized and undertreated in the terminally ill • Diminishes quality of life, amplify pain and other symptoms, and impair a patient’s ability to deal with the emotions involved in saying goodbye • Major risk factor for suicide and for requests to clinicians to hasten death • Vegetative symptoms (insomnia, anorexia, weight change) may not be reliable because of underlying illness 41 DEPRESSION (2 of 2) • Be alert for mood change, loss of interest, suicidal ideation • Treat aggressively: Antidepressants, psychiatric consultation, cognitive-behavioral therapy are appropriate • Consider ECT for those who are severely depressed and when a rapid response is needed • Involvement of clergy or pastoral care may be helpful to help patients and families to work toward closure and resolution 42 DEATH CERTIFICATE COMPLETION • Death certificates are needed for personal, legal, and public health purposes • Accurate documentation of the cause of death and communication with the family may help family members with closure and peace of mind • Physicians are responsible for completing the medical portion of the death certificate, the “Cause of Death” section and usually the pronouncement of death Cause of Death Section has 2 parts: 1) Immediate cause of death and 2) Other conditions that contributed to the death 43 COMPLETING A DEATH CERTIFICATE Points to Remember: • Do not delay completion of the certificate. The burial or disposition of the remains cannot proceed until a correctly completed death certificate is accepted by the state. • Print clearly or type using black ink. • Do not use abbreviations. • Spell out the month. • Use a 24-hour clock. • Complete all items, do not leave blanks. If necessary, use “unknown.” • Do not complete the medical information if another available physician has more knowledge of the circumstances. • Do not alter the document or erase any part of it. 44 HEALTH PROFESSIONAL BURNOUT • Health care providers caring for patients and families at the end of life are exposed to distressing emotional situations and suffering this may lead to burnout • Symptoms of burnout include irritability, insomnia, forgetfulness, resentment, mental and physical fatigue, social withdrawal, increased alcohol use, apathy, and/or chronic sadness • Burnout at work has both personal and professional consequences. It is important for providers to be aware of and address their responses to emotional situations to prevent burnout. 45 CHOOSING WISELY • Do not use topical lorazepam, diphenhydramine, or haloperidol gel for nausea. • Don’t recommend percutaneous feeding tubes in patients with advanced dementia; instead offer oral assisted feeding. • Avoid using prescription appetite stimulants or highcalorie supplements for treatment of anorexia or cachexia in older adults; instead, optimize social supports, provide feeding assistance and clarify patient goals and expectations. 46 SUMMARY (1 of 2) • Palliative care aims to relieve suffering, improve quality of life, optimize function, and assist with decision making for patients with advanced illness and their families • Palliative care is offered simultaneously with all other appropriate medical treatment • Communicating serious news requires preparation, sensitivity to patient’s and family’s understanding and emotional needs, and an organized plan and follow-up • Pain should be assessed in all patients, and adequate treatment may combine drugs with nonpharmacologic interventions 47 SUMMARY (2 of 2) • Clinicians should watch for and treat other symptoms at the end of life: constipation, nausea & vomiting, diarrhea, gastrointestinal obstruction, anorexia & cachexia, delirium, dyspnea, cough, loud respirations, and depression • It is a physician’s responsibility to properly complete a patient’s death certificate • Health professional burnout can occur in providers who are not cognizant of their emotional responses to caring for patients and families at the end of life • It is important for health care providers to be aware of the symptoms of burnout and seek appropriate help through self-care or professional counseling 48 CASE 1 (1 of 4) • A 75-year-old woman comes to the emergency department because of new severe lower back pain. She reports no falls or trauma. She has had no new weakness or bowel or bladder incontinence. • History: CAD, diabetes mellitus, metastatic breast cancer The breast cancer was treated with chemotherapy and radiation 6 years ago. Three months ago she had right shoulder pain, and a scapular metastatic lesion was diagnosed. • Radiography of the lumbar sacral spine demonstrates metastatic disease involving L1–L4 vertebrae, with severe pathologic compression of L3. 49 CASE 1 (2 of 4) • The patient is admitted for pain control. The pain is controlled at rest with around-the-clock morphine. The pain is aggravated by movement. Because of its severity, she is unable to walk, spends all of her time in bed, and is dependent in all ADLs except feeding. • The patient acknowledges that her cancer is incurable and states that she does not want further hospitalizations or interventions. • The medical team recommends hospice. The patient’s husband asks for information on hospice services. 50 CASE 1 (3 of 4) Which one of the following is covered under the Medicare hospice benefit? A. Room and board in a long-term care facility B. Nursing care in a postacute facility C. Hospital bed and bedside commode for home D. Private-duty caregiver at home E. Medication for diabetes mellitus and coronary artery disease 51 CASE 1 (4 of 4) Which one of the following is covered under the Medicare hospice benefit? A. Room and board in a long-term care facility B. Nursing care in a postacute facility C. Hospital bed and bedside commode for home D. Private-duty caregiver at home E. Medication for diabetes mellitus and coronary artery disease 52 CASE 2 (1 of 3) • An 88-year-old woman is admitted to the hospital because she has worsening abdominal pain. • History: osteoarthritis, hypertension, hypothyroidism, metastatic pancreatic cancer • Pain management At home, she was taking oxycodone 5 mg every 6 hours, with little pain relief. Because of pain and fatigue, she has spent most of the last month in bed. In the hospital, the pain was controlled with IV hydromorphone, with subsequent transition to long-acting oxycodone 20 mg twice daily and short-acting oxycodone for breakthrough pain. • Before discharge, the medical team meets with the patient and her family. The patient’s husband asks the team to address her prognosis. 53 CASE 2 (2 of 3) Which one of the following is most predictive of a poor prognosis? A. Advanced age B. Uncontrolled pain C. Low performance status D. Multiple comorbidities E. Opioid dependence 54 CASE 2 (3 of 3) Which one of the following is most predictive of a poor prognosis? A. Advanced age B. Uncontrolled pain C. Low performance status D. Multiple comorbidities E. Opioid dependence 55 CASE 3 (1 of 3) • An 84-year-old man is admitted to the hospital for pain control related to a pathologic pelvic fracture after a fall at home. • History: Alzheimer disease, metastatic prostate cancer • Hospital course Oxycodone is started, 5 mg every 6 hours around the clock, and his symptoms improve. On hospital day 2, there is swelling in his left lower extremity. Ultrasonography reveals acute deep-vein thrombosis, and anticoagulation therapy is started. Over the next few days, his oral intake decreases, and he requires IV hydration. • A bedside meeting is held with the patient’s wife, who has durable power of attorney. She says that his appetite at home has been poor and that he has lost 6.8 kg (15 lb) in the last 3 months. She asks what can be done to prevent further weight loss. 56 CASE 3 (2 of 3) Which one of the following is the most appropriate recommendation for this patient? A. Oral dronabinol 2.5 mg twice daily B. Oral megestrol 400 mg/d C. Placement of gastrostomy tube for enteral feedings D. Total parenteral nutrition E. Small meals of the patient’s favorite foods 57 CASE 3 (3 of 3) Which one of the following is the most appropriate recommendation for this patient? A. Oral dronabinol 2.5 mg twice daily B. Oral megestrol 400 mg/d C. Placement of gastrostomy tube for enteral feedings D. Total parenteral nutrition E. Small meals of the patient’s favorite foods 58 GRS9 Slides Editor: Mandi Sehgal, MD GRS9 Chapter Authors: Grace A. Cordts, MD, MPH, MS Danielle J. Doberman, MD, MPH GRS9 Question Writer: Susan Charette, MD Managing Editor: Andrea N. Sherman, MS Copyright © 2016 American Geriatrics Society
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