Chapter 41Adult Palliative and End-of-Life Care Assessment

• McMaster Palliative Care Pain and Symptom Management Guide
• Pallium Palliative Pocketbook, 2e.: Helpful peer-reviewed resource for clerkship ($25 E-book, $70 Pocketbook)
• BC Centre for Palliative Care Symptom Management Guidelines: Comprehensive Palliative Care Guidelines
• University Health Network Pain Card (Side 1; Side 2): Primer for pain management
• Canadian Society of Palliative Medicine: National organization for palliative care in Canada
• Canadian Virtual Hospice: Helpful topics for palliative care you may encounter in clerkship
• LEAP Fundamentals Modules: Pallium Canada provides free access through the McMaster Health Sciences Library (https://library.mcmaster.ca/databases/leap). Each module takes 10-20 minutes to complete.

• Illustrates a typical shift in focus of care over time
• Illustrates ↑ role for palliative care as patient moves through their illness trajectory.

• Illustrates double reality of hoping for cure while facing and preparing for reality that cure may not be possible.

Sudden Death (Acute Illness)	Terminal Illness	Organ Failure	Frailty / Dementia

• For terminal illness trajectories, palliative care consultations are recommended at time of diagnosis (e.g. for metastatic cancer, early palliative care can ↑ quality of life, ↓ depressive symptoms, prolong life)⁴. Some patients have lived with a chronic life-limiting illness for years (e.g. COPD, HF, Frailty). To identify patients who would benefit from a palliative care assessment, 2 examples of tools are the Surprise Question and the SPICT Tool:

Would you be surprised if this patient died within the next X months? (e.g. 1, 3, 6, 12 months)

Why Check: For physicians, SQ Sensitivity 93% (95%CI: 63-82), Specificity of 74% (95%CI: 70-78)⁵ for predicting 12-month mortality.

General indicators of poor or deteriorating health: Does this patient have: (1) Unplanned hospital admits; (2) Performance status poor or ↓, limited reversibility; (3) Depends on others for care due to ↑ physical/ mental health problems – person’s carer needs ↑ help/support; (4) Progressive weight loss, underweight, low muscle mass; (5) Persistent symptoms despite optimal Tx of underlying conditions; (6) Person/family asks for palliative care – chooses to reduce, stop or not have Tx – or wishes to focus on quality of life.

Why Check: The SPICT tool helps identify more comprehensive trigger points to consider palliative care referral for many chronic diseases (see Medical Profile, below). In a geriatric patient population admitted to hospital, SPICT predicted 1-year mortality with Sensitivity of 84.1% and Specificity of 57.9%⁶

Pts with serious illness face significant stress and uncertainty challenges, drawing on coping mechanisms (thoughts and behaviors) to manage. When demands of stressful events exceed pt coping mechanisms, they may develop a demoralization syndrome (see below). There are 3 main coping styles pts draw strength from – helpful to observe which coping styles patients draw on easily and which they struggle with (to help bolster). These include:

• Problem-Focused Coping: Coping by trying to change nature of problem (e.g. planning, problem-solving). We can support patients in problem-focused coping through disease-directed management plans, connect with resources, etc.
• Emotion-Focused Coping: Coping by focusing on regulating negative emotions (e.g. seeking emotional support, distancing, escape-avoidance strategies). We can support patients through emotion-focused coping by active listening, supportive care, psychotherapy, etc.
• Meaning-Focused Coping: Coping by focusing on regulating positive emotions through making sense of meaning of our experiences (e.g. goal revision, reordering priorities, strengths gained from life experience). We can support patients through meaning-focused coping through life reviews, legacy-focused work, dignity therapy, etc.

In Palliative Care assessments, pts and families may ask about prognosis; physicians may ask to help with decision-making; healthcare services may ask in referrals (e.g. prognosis < 3 months in hospice eligibility criteria). Prognostication has important impacts on pts and families –overestimates can leave families feeling robbed of time; underestimates can leave families questioning credibility of info source. Clinicians are generally poor at prognosticating – studies suggest we overestimate 20% of cases (by >2x actual survival), and underestimate 10% of cases (by ½ actual survival). Prognoses are also increasingly tenuous the longer the prognosis. In communicating a prognosis, emphasize that prognosis is an estimate, and present it in a range of units (e.g. hours-days, days-short weeks, weeks-short months, months). Tools to guide prognostication include:

• Circumstances with poor prognosis:
  • Cancer: Multiple mets to brain/liver/lung, refractory hypercalcemia, ongoing tumor bleed, or bone marrow failure without transfusions; cancer diagnoses e.g. pancreatic ca., biliary tract ca., adenocarcinoma unknown primary, untreated small cell lung ca.
  • HF: Hemodynamic failure requiring inotropic support; progressive renal impairment; repeat hospital admits
  • Renal Failure: Discontinuing dialysis; severe hyperkalemia without treatment
  • COPD: Respiratory failure
  • Frailty: Sepsis in a frail, bedridden patient
  • Coma: e.g. Massive stroke, post-ROSC hypoxic encephalopathy
• Functional Decline and Palliative Performance Scale (PPS): General principle that rapid functional decline continue rapidly vs. slow changes continue slowly (“final changes” occur quickly). PPS (Below) can monitor patient function – e.g. pts with PPS ≤50%, only 10% survive > 6 months.
• Palliative Prognostic Index (PPI): PPI incorporates assessment of PPS, Oral Intake, Edema, Dyspnea at Rest, and Delirium. If PPI score >6, prognosis < 3 weeks (Sensitivity 80%, Specificity 85%).

• For serious illness leading to palliative care assessment (e.g. cancer, HF, COPD, CKD, dementia, stroke, etc.) include course of illness (date of diagnosis, lines of treatment, F/U providers) in greater detail than comorbidities in medical profile. Can include reason for referral (e.g. symptom management, goals of care, disposition plan), or as separate heading in report.

• Quantifying Using Pain Scales:
  • Numeric Rating Scale: Number line 0-10, 0 = no pain, 10 = worst pain in your life
  • Verbal Descriptor Scale (Pain Thermometer): Descriptors from no pain → mild → moderate → severe → extreme → pain as bad as could be.
  • Faces Pain Scale – Revised (See right)
• Approach: For each pain, take an OPQRST Hx – goal to link to etiology. In particular:
  • Is the pain constant or intermittent?
  • Is pain nociceptive (somatic - sharp, throbbing ache vs. visceral – gnawing, aching, cramping, poorly localized) or neuropathic (pins/needles, hot/burning, electric shocks, worse with touch of clothing) in description?
  • Quantifying Analgesic Medication Efficacy – Standing Dose (Constant Pain – generally dosed based on half-life of drug): What number on average is your pain in a typical day? What is the highest and lowest pain intensity during the day? How many breakthroughs do you take per day for pain?
  • Quantifying Breakthrough Medication Efficacy: Before taking breakthrough, what number would you give pain? How long until it begins to work? An hour after taking breakthrough (Cmax for PO opioid = 1 hour; 30 mins for Subcut opioid), what number would you give the pain? How long does the breakthrough last?
  • FIFE: Impact on Functioning: How has your pain affected your daily life?
  • FIFE: Ideas and Fears: What does the pain mean to you? What concerns does it generate?
  • FIFE: Expectations: What are your goals for pain management?

Why Check: Goal of pain assessment is to develop a diagnosis or differential diagnosis for the pain presentation, and then to develop appropriate management strategies. Note:

• Pain Classification:
  • Nociceptive Pain (appropriate nerve function reflecting nerve pain – somatic – superficial e.g. laceration or deep e.g. fracture; vs. visceral – acute stretch/ischemia; ± referred pain due to visceral/somatic afferent fibers converging on same lamina in spinal cord)
  • Neuropathic Pain (disordered nerve function in somatosensory system – may be peripheral or central; associated with Allodynia – painful response to non-painful stimulus, and hyperalgesia – disproportionate pain response to mildly uncomfortable stimulus)
• Expectations: Expectation not pain-free; goal for patient to be comfortable with pain manageable.
• Chronic Non-Cancer Pain: Patients with chronic non-cancer pain can develop palliative care needs. Be mindful your approach differs here – a helpful tool is the CEP Chronic Non-Cancer Pain Tool.
• Pain instruments: Numeric rating scale and verbal descriptor scale both validated in older adults – evidence suggests verbal descriptors preferred by elderly patients. Caution using Faces Pain Scale for pts with cognitive impairment re. emotional facial recognition deficits¹⁰.
• Total Pain: Refers to bio-psycho-socio-spiritual pain, where other forms of suffering may be expressed as pain that is not amenable to analgesic intervention alone. Suspect total pain if pt appears comfortable but reports poorly controlled pain consistently (in absence of disease progression), has failed multiple adequate trials of analgesics, and endorses a sense of meaningless, hopelessness or emptiness. If you suspect total pain, treat pain appropriately, while also offering psychosocial and spiritual support.
• Choosing Wisely Canada Recommendation re. Palliative Radiation (Oncology)⁷: “Don’t recommend more than a single fraction of palliative radiation for an uncomplicated painful bone metastasis.”

• Screen with Numeric Rating Scale: 0-10, 0 = no tiredness, 10 = worst possible tiredness
• Treatments: Current/past non-pharmacologic, pharmacologic treatments? Effectiveness?

Brief Fatigue Inventory:

• Throughout our lives, most of us have times when we feel very tired or fatigued. Have you felt unusually tired or fatigued in the last week? (Yes / No)
• On a scale of 0-10, 0 meaning no fatigue, 10 meaning as bad as you can imagine, please rate your level of fatigue (weariness, tiredness): Right Now? Usual level of fatigue in past 24hrs? Worst level of fatigue in past 24hrs?
• Thinking about last 24 hours, on a scale of 0-10 (0 = no interference, 10 = complete interference), how much has your fatigue interfered with your: General activity? Mood? Walking Ability? Normal Work (both work outside home and daily chores)? Relations with other people? Enjoyment of life?

Why Check: Fatigue is a common, debilitating symptom impacting patients’ function, participation in social relationships, and mood. Differentiating Tiredness (lack of energy, fatigue) from Drowsiness (sleepy) can be challenging. It can be caused by a serious illness, and by treatment. Etiologies include cachexia, malnutrition, deconditioning, overexertion, infection, autonomic dysfunction, medication side effects, psychological distress (anxiety, depression), anemia, metabolic disorders (hypothyroid, diabetes, Addison’s, ↓Na, ↓K, ↑Ca, hypoxia, dehydration), and paraneoplastic syndromes.

2 Question Sleep Screen¹²:

• Do you have problems with your sleep or sleep disturbance on average (routinely, in the past month, etc.) for three or more nights a week?
• If yes, does the problem with your sleep negatively affect your daytime function or quality of life?

Sleep Assessment: Can also use standardized tools e.g. Sleep Disorders Questionnaire to delineate issue

• Onset: Have you had difficulties sleeping at night or staying awake in the day during last month? How long have difficulties been present?
• Pre-Sleep Environment: Bedroom environment, evening activities, physical/mental status
• Sleep-Wake Schedule: Bedtime; time to fall asleep (prolonging, shortening factors); awakenings in night (quantity, duration); total sleep time; final awakening time vs. time when out of bed
• Associated Symptoms: Restless Leg Syndrome (urge to move legs, worse in evening/night, partially/totally relieved by movement); Apneic pauses in breathing (e.g. Sleep Apnea); Nocturia
• Daytime Functional Impact: Napping, drowsiness (feeling sleepy) vs tiredness (fatigue, lack of energy); daytime impairment; effect on work/lifestyle/travel
• Quality of Sleep: Difficulty falling asleep, awakening, poor/unrefreshing sleep
• Treatments: Current/past non-pharmacologic, pharmacologic treatments? Effectiveness?

Why Check: Sleep disturbances are common in patients with serious illness, e.g. 25-59% in cancer¹². It can be under-reported and under-recognized e.g. misperceived as “calmness”¹². Differentiating Tiredness (lack of energy, fatigue) from Drowsiness (sleepy) can be challenging. Sleep impacts physical and psychosocial wellbeing, and influences other symptoms e.g. pain, depression, anxiety¹³. Sleep disturbances can be manifestations of comorbid illnesses e.g. medication side-effects (steroids, stimulants, decongestants, opioids, antidepressants, etc.), restless leg syndrome, depression, sleep apnea, etc.

• Insomnia¹⁴: Problem with sleep (initiating, maintaining sleep, waking too early, or chronically poor quality/non-restorative sleep) despite adequate opportunity/circumstances for sleep, with related daytime impairment (functional; fatigue; daytime sleepiness, ↓ energy, etc.). Chronic Insomnia is difficulties 3+ days/week for ≥3 months duration.
  • Insomnia common for pts with end-stage renal disease (ESRD) – add to ESAS for this pt population.

• Quality: Nausea, vomiting, retching, regurgitation
• Duration: When did it begin? (acute vs. chronic)
• Character: Is it constant or intermittent (comes and goes)?
• Intensity: Are you able to eat, or does your nausea/vomiting preclude eating?
• Associated Vomiting: Is nausea relieved by vomiting? Vomiting: Volume? Bilious? Feculent?
• Aggravating Factors: Sight/smell of food; worse after meals; worse with movement
• Relieving Factors: Medications (quantify efficacy 0-10); over the counter; alternative meds
• Temporal Factors: Relation of vomiting to nausea; worse in morning?
• Drug History: Anticancer treatment (chemo, rads); opioids; NSAIDs; antibiotics; SSRIs?
• Associated Sx: Early satiety; post-prandial fullness/bloat; abdo cramps; ∆ bowel habit; H/A; anxiety
• Treatments: Current/past non-pharmacologic, pharmacologic treatments? Effectiveness?

Why Check: Nausea is a subjective experience; vomiting is a physical event of rapid, forceful gastric content evacuation in retrograde fashion. Important causes to delineate include:

1. Impaired Gastric Emptying (35-45% cases): Intermittent nausea, relieved by vomiting, associated early satiety and postprandial fullness/bloating. Vomiting typically small volume, ± forceful, may contain food → Etiologies: Gastroparesis; Gastritis; Opioids; Paraneoplastic; Stomach Ca.; Hepatomegaly; ascites, etc.
2. Biochemical Activation of Chemoreceptor Trigger Zone (30-40% cases): Persistent nausea, unrelieved by vomiting → Etiologies: Drugs (Opioids, chemo, Antibiotics, SSRIs); Infection; Metabolic (↑Ca, ↓ Na, adrenal insufficiency, ↑/↓-glycemia, uremia, acidosis, organ fail); Structural: Obstructive uropathy, liver mets
3. Bowel Obstruction (10-30% cases): Intermittent nausea, relieved by vomiting, with associated abdo cramps and altered bowel habit. Vomiting may be large volume, bilious, feculent → Etiologies: Bowel cancer; peritoneal metastases; ascites; adhesions; constipation
4. ↑ ICP (<15% cases): Nausea in early morning with vomiting, with associated headache → Etiologies: Brain tumor; Cerebral metastases; Meningeal disease
5. Vestibular Cause (<15% cases): Nausea aggravated by movement (motion sickness, head turn) → Etiologies: Motion sickness; vestibular problems; opioids; cerebral mets
6. Cortical (<15% cases): Nausea, vomiting with associated anxiety → Etiology: Anxiety

• Weight History: Any recent changes in past few months
• Appetite: How is your appetite (on a scale of 0-10, 0 is normal, 10 is worst appetite)?
• Food Intake: how has food intake been in last 1 month? Any changes? (If ↓ - less than a mouthful during meals?)? Any nutritional supplements (e.g. nutritional shakes?)
• Associated Symptoms: Oral hygiene; odynophagia (e.g. concern for oral thrush); dysphagia; early satiety; taste/smell changes; nausea/vomiting; constipation.
• Treatments: Current/past non-pharmacologic, pharmacologic treatments? Effectiveness?
• Screen for Food Insecurity – See Below

Why Check: The anorexia-cachexia syndrome is important predictor of decreased survival.

• Cachexia: An inflammatory, catabolic process involving loss of both lean muscle mass and fat - not starvation (only fat initially lost). It occurs in both malignant and non-malignant illness (e.g. pulmonary, cardiac cachexia) and is associated with ↓ immunity, coagulopathy, autonomic dysfunction. It is irreversible, hence importance of regular screening and monitoring, with early management where appropriate. Cachexia as an outward manifestation of illness can be distressing for pts and families.
• Anorexia: Loss of appetite, commonly associated but distinct from cachexia due to inflammatory cytokines – helpful to normalize pts lose appetite because of advanced illness- not starving. Remember food is not just nutrition – it can hold important social connection for patients and their loved ones.

• Quantifying Using Dyspnea Scales:
  • Numeric Rating Scale: 0-10, 0 = no problems, 10 = worst possible difficulty breathing
  • Verbal Descriptor Scale: No shortness of breath → mild → moderate → severe
• Approach - Ask all patients: How is your breathing?
  • Onset – Sudden onset (or acute on chronic) suggests acute process e.g. PE, Pneumonia; if gradual onset, may indicate pleural effusion, HF, pulmonary parenchymal disease.
  • Provoking and Palliating Factors – Are disease-directed symptom treatments helpful (e.g. salbutamol, ipratropium, etc.); known triggers (e.g. ongoing smoking, environmental triggers, etc.); non-pharmacological Tx (e.g. fans help by stimulating trigeminal nerve; rehab; meditation, etc.)
  • Quantifying Breakthrough Medication Efficacy (e.g. Opioids): For dyspnea on exertion, before taking breakthrough, what number would you give your breathing? How long until it begins to work? While it’s working, what number would you give your breathing? How long does the breakthrough last?
  • Quantifying Standing Medication Efficacy (e.g. Opioids): For patients with dyspnea at rest - what number on average is your breathing in a typical day? What is the highest and lowest intensity during the day? How many breakthroughs do you take per day?
  • Associated Symptoms – e.g. Chest Pain (PE, infection, cardiac cause); Fever (e.g. infection); Orthopnea/PND/Edema (HF); Stridor (large airway obstruction); increased sputum volume/purulence/cough (e.g. COPD exacerbation)
  • Past Treatments – Consider chemotherapy or radiation-induced fibrosis
  • FIFE: Impact on Functioning and Exertional Limitation – Quantify with MRC scale (see below). How has your breathing affected your daily life?

Why Check: Dyspnea is a subjective experience of uncomfortable breathing. A pt with normal objective resp findings (e.g. normal WOB, RR, O2sat, etc.) can experience dyspnea; likewise a pt with abnormal resp findings can feel comfortable. Dyspnea can be a significant source of suffering in diverse medical conditions. Dyspnea can form a vicious cycle with dyspnea. We can assess pts functional limitations from dyspnea with MRC Scale:

MRC (Medical Research Council) Breathlessness Scale for Dyspnea

Note – Opioids for Dyspnea: For dyspnea refractory to disease-specific therapy in advanced disease, opioids are drug of choice, and at appropriate doses do not cause respiratory depression nor shorten life¹⁸. When prescribing, we use LOWER starting doses (best evidence for morphine). Oxygen is not always necessary¹⁷.

Depression: Endicott Substitution Criteria (Substitute Physical for Psychological Sx)¹⁹

• From M-SIGECAPs, Keep: Mood, Interest (Anhedonia), Guilt, Psychomotor, SI
• From M-SIGECAPS, Substitute 4 Physical Sx: Sleep, Energy, Concentration, Appetite
  • Replace 4 Physical Sx with 4 Psychological Sx: (1) Tearfulness/depressed appearance; (2) Social withdrawal/↓talkativeness; (3) Brooding/self-pity/pessimism; (4) Lack of reactivity
• Anhedonia: Separate into Anticipatory (“what do you look forward to?”) and Appetitive (“do you enjoy things in the moment?”) → Anticipatory anhedonia may be depressed, or suffering from demoralization syndrome; if appetitive anhedonia, ↑ depression concern.
• Mania Screen (Bipolar D/O): Have there been times lasting at least several days when you felt on top of the world, overly cheery? When friends/family said you were talking too fast or behaving strangely?
• Functional Impact: How difficult have these problems made it for you to function day-to-day?
• Treatments: Current/past psychological therapies? Medication treatments/effectiveness?
• Suicidal Ideation (SI) Screen: Has it ever gotten so bad that you’ve thought of taking your own life?

Why Check: For patients with serious illness, depression²⁰ can be thought of as a continuum from non-pathological sadness to adjustment disorder with depressed mood (ambiguous boundary re. normative distress), to a major depressive episode. It is clouded by physical symptoms of depression being common in pts with serious illness (e.g. sleep, energy, concentration, appetite) –Endicott criteria substitute these criteria for psychological symptoms. For details on assessment of Mood, see Ch 33 – MF4. For details on Suicide Risk Assessment, see Ch 35 – MF4. Note: Steroids can precipitate manic/hypo-manic episodes or delirium

• Screen with Numeric Rating Scale: 0-10, 0 = no anxiety, 10 = worst possible anxiety
• General Screening (CANMAT)²¹: During the past 2 weeks, how much have you been bothered by: Feeling nervous, anxious, frightened, worried, or on edge? Feeling panic or being frightened? Avoiding situations that make you anxious?
• Functional Impact: How difficult have these problems made it for you to function day-to-day?
• If concerned, can use screening tool e.g. Hospital Anxiety Depression Scale (PDF)
• In assessment, explore GAD, Panic D/O, PTSD, Specific Phobia - for screening, see Ch 33 – MF4
• Treatments: Current/past psychological therapies? Medication treatments/effectiveness?
• Death Anxiety (existential challenge): When you look to the future, what do you see ahead of you? Do you think about dying and death? What are your feelings about dying and death? Specifically, what is it that scares you about dying and death? What might help you prepare for what lies ahead?

Why Check: Anxiety is an important source of psychological distress that can amplify suffering for patients and loved ones facing serious illness, impacting quality of life and complicating medical care²². Remember anxiety can be normal response in pts facing serious illness –abnormal when it is persistent, intrusive/ uncontrolled, impacting function. It is important to screen for anxiety, and to assess specific anxiety and trauma/stressor-related disorders where pertinent. A particular source of anxiety in palliative care is death anxiety. As a clinician, it is helpful to be open and present in the moment in exploring death anxiety, and to reflect on these discussions. For pts struggling with death anxiety, encourage adaptive responses including courage, open awareness, a focus on continued living and staying present in the moment.

Screening for Delirium:

• Single Question in Delirium for loved ones²³: Do you think [patient] has been more confused lately?
• Confusion Assessment Method: Does pt have (1) acute onset and fluctuating course? + (2) inattention/ distractibility? WITH EITHER OF: (3) disorganized thinking/illogical/unclear ideas? OR (4) Altered LOC?

Assessment of Delirium:

• Hallucinations: Have you seen anything unusual, or seen things other people don’t notice, or see? Have you heard anything unusual, or heard anything other people can’t hear?
• Paranoia: Do you feel safe?
• Medication Review: Any recent med changes? Does confusion worsen after specific medications?
• Investigations Review: Any recent investigations to explain delirium?
• Nursing Report: Review nursing or caregiver reports – any sundowning (worse at night)?
• Treatments: Non-pharmacologic measures (hearing aids, glasses)? Pharmacologic Tx trialed, effective?
• Associated Symptoms: Any symptoms to indicate a focus of infection? (especially UTI e.g. dysuria, lower urinary tract symptoms e.g. frequency, urgency, nocturia, foul-smelling urine)

Why Check: Delirium is a common and distressing symptom in Palliative Care, that can be challenging for patients and loved ones to manage. Delirium can present as hyperactive (agitated behavior, ↑ psychomotor activity), hypoactive (↓ psychomotor activity – can be mistaken as depression) or mixed (most common). Remember differential of DIMS - Drugs, Infectious, Metabolic, Structural to approach treating underlying cause; as well as separating out delirium from dementia and depression (See Ch 36 – MF4). In addition, a patient approaching end of life may have a terminal delirium with no identifiable, reversible cause.

Demoralization Syndrome – Features²⁴:

• Affective symptoms: Existential distress including hopelessness, loss of meaning or purpose in life → Ask: “Do you feel hopeless?”
• Cognitive Attitudes: Pessimism, Helplessness, Trapped, personal failure, or lacking a worthwhile future.
• Anhedonia: As noted above, Anticipatory Anhedonia without Appetitive Anhedonia can raise concern for demoralization syndrome.
• Absence of Drive or Motivation to Cope Differently
• Associated features of social alienation or isolation and lack of support
• Allowing for fluctuation in emotional intensity, symptoms persists > 2 weeks.
• Major depressive or other psychotic disorder not present as primary condition

Suicidal Ideation (SI) Screen: Has it ever gotten so bad that you’ve thought of taking your own life?

Why Check: Demoralization²⁵ is a syndrome of existential distress in pts with severe illnesses denoting persistent failure of coping with internally or externally induced stress. Demoralization should be distinguished from the continuum of depression - both can present with suicidality and desire for hastened death, and approaches to treatment are different.

• Constipation: Difficult to pass? What is normal for you? Stools smaller, harder, less frequent than normal? Last Bowel Movement/Stool Charts: Ask about last BM; if inpatient, check nursing notes for stool charting for last BM by Bristol Stool Chart (1-2 constipated, 3-4 is normal, 5-7 diarrhea)
• GI Bleeding: Any Melena (black, tarry stool) or Hematochezia (bright red blood)?
• Associated Sx: Abdo pain; Obstipation (not passing gas –complete bowel obstruct. concern)
• Complications: Nausea/vomiting; discomfort/bloating; overflow diarrhea; urinary retention

Why Check: Constipation is a manageable cause of suffering. Regularly screen for constipation, particularly for at-risk pts (e.g. ↓ mobility, weakness, poor PO intake, pts treated with opioids, anticholinergics, 5-HT3 antiemetics). It can also be an important sign of underlying illness e.g. metabolic (↑Ca, ↓K), neurologic (e.g. spinal cord compression); psychological (lack of privacy, need for commode/bedpan); and local (e.g. anal abrasions/hemorrhoids/tears). Particularly when prescribing opioids in palliative care, remember - The hand that writes the Opioid prescription should also write the laxative prescription.

• Onset: When did it start? How long do episodes last? How often do episodes occur?
• Triggers: What brings on hiccups? Positions that improve/worsen? Worse after meals?
• Numeric Rating Scale: 0-10, 0 = no hiccups, 10 = worst possible hiccups – now vs. worst vs. average
• Treatments: Any non-pharmacologic or pharmacologic treatments help? Quality: What do they feel like?
• Associated Symptoms: GI (e.g. Abdo Pain, Nausea/Vomiting, Early Satiety); Non-GI (e.g. Chest Pain, Dyspnea); Central (neurologic deficits, headache, seizures, etc.); Drugs (recent med changes); Fever; Anxiety, Hallucinations, Stressors.

Why Check: Hiccups are repeated, involuntary spasmodic contractions of diaphragm and inspiratory muscles followed by sudden glottis closure²⁶. Hiccups can be classified as bouts (≤48hours), persistent hiccups (48hrs – 1 month), or intractable hiccups (>1 month). Persistent and intractable hiccups can be separated into central causes (CNS causes e.g. stroke, MS, infection, trauma, neoplasm, Parkinson’s) vs. GI peripheral causes (e.g. gastric distension, GERD, Peptic Ulcer Disease, obstruction, neoplasm) vs. non-GI peripheral causes (MI, pericarditis, aortic aneurysm, pneumonia, TB, pharyngitis, neoplasm); as well as toxic-metabolic (e.g. ↓Na, ↓K, ↓Ca, ↓CO2, Uremia, Alcohol, Diabetes, Infectious), Drugs (e.g. opioids, corticosteroids, anxiolytics, dopamine agonists, chemo) and Psychogenic causes (anorexia, anxiety, stress, schizophrenia)²⁷. Identifying likely cause can help guide investigations and approach to pharmacologic treatment.

• Onset: When did it start? How long do episodes last? How often do episodes occur?
• Triggers: After meals, morning/night, smoking/exposures, position. Able to talk on phone? Eat? Drink?
• Numeric Rating Scale: 0-10, 0 = no cough, 10 = worst possible cough – now vs. worst vs. average
• Quality: What does it feel like? it productive (sputum – amount, blood, colour)? Affects voice?
• Associated Symptoms: Wheezing, dyspnea, fever, night sweats, weight loss, orthopnea/PND, improving on weekends/holidays (occupational exposure), snoring, use of ACE-inhibitor (cough cause), anxiety

Why Check: Cough is often under-treated and can interfere with sleep, oral intake, energy levels, as well as social relationships. It can worsen pain, dyspnea, nausea/vomiting, incontinence and depression. Cough can be classified as acute (≤3 weeks), subacute (3-8 weeks) and chronic (>8 weeks). Cough can be an important sign with broad differential diagnostic categories of cough in palliative care include non-cancerous state, directly caused by cancer, indirectly caused by cancer, and chronic disease²⁹.

• Onset: When did it start? Is it constant or paroxysmal (intermittent, episodic)?
• Location: Is it generalized or focal (e.g. localized to perineal area, palms of hands/soles of feet)
• Skin Care: Does patient suffer from dry skin? Using emollients to moisturize appropriately? Using unscented soaps, frequency of handwashing and bathing? Irritating clothing?
• Recent Med Changes: Opioids (esp. spinal); photosensitivity (e.g. on doxycycline); drug-induced dry skin?
• Treatments: If cholestasis – previous biliary stenting? UV-B light treatment? Trials of medications (e.g. antihistamine, antidepressant, antiemetic, topical anesthetic)

Why Check: Pruritus (itch) is an unpleasant sensation of skin and mucous membranes provoking desire to scratch or rub. It can be acute (<6 weeks) or chronic (≥6 weeks), divided into 4 categories – prurioreceptive (originates in skin – may be mast-cell dependent), neuropathic (itch with burning/stinging, damage along afferent pathway), neurogenic (centrally induced, unresponsive to antihistamines – e.g. uremic, cholestatic itch), and psychogenic (associated with psychiatric disorders). Important etiologies in Palliative Care include cholestasis, uremia, malignant skin infiltration, malignancy, and opioid-induced pruritus. While allergy can also occur (where antihistamines helpful), antihistamines have limited role in pruritus in palliative care.

(1) Functional ability ↓ due to progressive cancer; (2) Too frail for cancer Tx, or Tx for symptom control.

(1) HF or extensive, untreatable CAD –breathlessness, chest pain at rest/min exertion
(2) Severe, inoperable PVD

(1) Severe, chronic lung disease –breathlessness at rest or on min. effort between exacerbations; (2) Persistent hypoxia - long-term O2 Tx; (3) Hx ventilation for resp failure, or ventilation contraindicated.

(1) Stage 4-5 CKD (eGFR <30) with ↓ health; (2) Kidney failure complicating other life-limiting conditions or Tx; (3) Stopping or not starting dialysis.

(1) Cirrhosis with ≥1 complications past year – Diuretic resistant ascites, Hepatic encephalopathy, Hepatorenal syndrome, Bacterial Peritonitis (SBP), Recurrent variceal bleeds; (2) Liver transplant not possible.

(1) Progressive ↓ physical and/or cognitive f(x) despite optimal therapy; (2) Speech problems with ↑ difficulty communicate and/or progressive difficulty swallowing; (3) Recurrent asp. PNA, breathless or respiratory failure; (4) Persistent paralysis post-stroke with significant ↓ function and ongoing disability.

(1) Unable to dress, walk or eat without help; (2) Eating/drinking less, difficulty swallowing; (3) Urinary, fecal incontinence; (4) Non-verbal, little social interaction; (5) Frequent falls, femur #; (6) Recurrent febrile episodes/infections, aspiration PNA

Deteriorating or risk of dying with other conditions or complications not reversible; where any Tx available will have a poor outcome.

• Constipation: Side-effect dose not subside over time –daily laxatives + PRNs, target BMs min q3d
• Nausea: Subsides generally after 3-7d of dose start or ↑. Can anticipate, prescribe short course antiemetic with GI prokinetic activity (e.g. metoclopramide, domperidone – may check QTc)
• Somnolence/Sedation: Subsides generally after few days of dose start or ↑ or occurring with renal impairment. If severe, consider ruling out other causes (e.g. Drugs, infections, Metabolic, Structural). If persistent/severe, may be sign of opioid-induced neurotoxicity (see below)
• Dry Mouth: Generally improves with time, manage with PO fluids, oral gels/sprays
• Respiratory Depression (Opioid Overdose): RARE; RR<6, physical stimulation → if persistent give Naloxone, with goal to reverse resp ↓ without reversing analgesic effect (precipitate pain crisis)
• Opioid-Induced Neurotoxicity (sedation, hallucinations, delirium, cognitive impairment, agitation, myoclonus, hyperalgesia, allodynia, seizures): RARE, typically onset 3-5d after dose start or ↑ - caution pts with renal impairment, dehydration ↑ risk re. metabolite accumulation → mgmt. options include dose ↓, rehydration, opioid rotation, switch route, treat symptoms.
• Opioid Use Disorder: Psychological dependence on a drug, manifested by repeated use to achieve a psychological high, even if causing harm (see DSM-V Criteria – explored in Ch 37 – Assessment of Substance Use Disorders – MF4)
  • The 4 Cs of Addiction: Impaired Control over substance use; Compulsive use; Continued use despite Consequences; and Cravings.
• Other Side Effects: Pruritus, Urticaria
• Allergy: TRUE ALLERGY IS RARE TO OPIOIDS – patient may mistake side-effects as allergy.

Why Check: When prescribing opioids, important to advise and provide anticipatory management for common side-effects (which pts could otherwise mistake as allergies) and monitor for rare side-effects (e.g. opioid overdose – resp depression, pinpoint pupils, ↓ LOC; and opioid-induced neurotoxicity) – typically avoided by careful, appropriate prescribing.

Pts and loved ones may have significant concerns about managing symptoms e.g. pain, dyspnea with opioid medications. Remember opioids in appropriate doses are very safe and do not shorten life¹⁸ and starting an opioid does NOT mean pt approaching end-of-life. It is important to be clear in terms we use, and to identify and clarify misconceptions to allow informed decision-making. For example:

• Tolerance: Normal physiologic adaptation to long-term opioid therapy – ↑ dose required for same analgesic effect –normalize ↑ doses over time due to disease progression, tolerance
• Physical Dependence: Normal physiologic adaptation to long-term opioid therapy – withdrawal symptoms with discontinuing opioid (COWS Scale quantifies symptom assessment for opioid withdrawal) –normalize having physical withdrawal symptoms not a sign of addiction by itself.
• Addiction: Pathological/aberrant response – characterized by compulsive engagement in rewarding stimuli despite adverse consequences – important to reassure patients that overwhelming majority of patients taking opioid for pain control will not become addicted.

• Key Idea: You can switch between opioids using conversion factors
• Morphine is the standard measure to convert between opioids
• Must consider total 24hr dosage, including breakthrough doses (PRNs)
• When converting from oral to parenteral, divide by 2
• To convert between opioids:
  1. Calculate total 24hr dose of initial opioid – add scheduled doses + breakthroughs
  2. Convert to PO 24hr dose of initial opioid (if needed – multiply by 2 to convert SC/IV to PO)
  3. Convert to PO morphine total per 24 hours – using conversion factors below
  4. Convert to desired PO opioid total per 24 hours – using conversion factors below
  5. Convert to SC/IV 24hr dose of desired opioid (if needed - divide by 2 to convert PO to SC/IV)
  6. Dose-reduce for incomplete cross-tolerance – reduce dose by 20-50%
  7. Divide total 24hr dose of desired opioid into schedule – e.g. divide daily dose by 6 for q4h
  8. Calculate breakthrough dose – (10% of daily dose, or ½ the dose in ½ the time) q2h PRN
  9. Reassess – If pain control is inadequate, may need to titrate dose of opioid
• Monitor pain assessment and consider titrating scheduled opioid dose after opioid conversion if patient is requiring >3 breakthrough doses per day.

Why convert opioids: Opioid conversion can be helpful in a number of clinical contexts, for example:

• Start long-acting oral opioid (e.g. convert parenteral scheduled opioid to long-acting oral opioid)
• Patient loses the oral route (e.g. a patient with malignant bowel obstruction where they cannot tolerate their scheduled oral opioid, needs to convert to scheduled parenteral opioid)
• Patient regains the oral route (e.g. a patient with malignant bowel obstruction resolves, etc., where we can convert from scheduled parenteral opioid to scheduled oral opioid)
• Patient with opioid-induced neurotoxicity (described above), where opioid rotation can be a component of management along with rehydration, dose reduction, and treating symptoms.

For more information about starting, titrating, and rotating opioids, consider exploring Pallium LEAP Fundamentals Modules on Pain Management in Palliative Care

For each diagnosis in Medical Profile, try to match current disease-directed medications the patient is taking; as well as symptom-directed therapy (e.g. medications for pain, dyspnea, nausea/vomiting, constipation, sleep, etc.). Ask to look at medication bottles, blister packs, and take a medication history from the patient to clarify best possible medication history.

Why Check: As patients face serious illness, it is important to review current medications to ensure appropriateness, minimize drug-drug interactions, prevent polypharmacy, etc. A helpful model (shown left) for assessing medication appropriateness late in life considers Remaining Life Expectancy (Prognosis), Time to Benefit (e.g. statin, time to benefit of years), Goals of Care of patient, and Treatment Target (goals of continued treatment).

• Choosing Wisely Canada Recommendation re. Long-Term Care: “Don’t continue or add long-term medications unless there is an appropriate indication and a reasonable expectation of benefit in the individual patient.”

(See Ch 1 – General Medical History – MF1)

Using IF-IT-HELPS Social History Tool³³, additional questions include but not limited to:

• Identity – Tell me about yourself
• Income – Do you ever have difficulty making ends meet at the end of the month?
• Housing Instability – Where are you staying right now? What is your housing like?
• Food Insecurity – Do you ever run out of money to buy food?
• Transportation – How are you managing getting to and from our appointments together? Do you have trouble paying for public transportation?
• Health Benefits – Do you have health coverage and benefits e.g. drug, physio coverage?
• Employment – Are you working right now?
• Education – How far did you go in your education? Do you have any trouble reading/writing?

Why Check: Pts with structural vulnerability and palliative care needs experience a double vulnerability³⁴– they are both in need of palliative care services and experiencing deficits in social determinants of health. It is important to screen for structural vulnerability in a palliative care assessment, which can cause pts to experience complex, intersecting health and social concerns.

• Tell me about the important people in your life. Are there people you can count on for support?

Why Check: Identifying pt support networks is critical in context of serious illness and functional ↓, which often brings significant challenges re. loss of capacity to be self-sufficient, ↑ need for support. This list can also help identify potential loved ones pt may wish to designate as SDM (see below).

• What do I need to know about you as a person to give you the best care possible?

Why Check: The PDQ is a dignity-conserving intervention within ABCDs of Dignity-Conserving Care³⁵:

• Attitude (A) – examining our attitudes and assumptions towards pts as healthcare providers
• Behavior (B) – our behaviors towards pts must always be predicated on kindness & respect
• Compassion (C) – a deep awareness of suffering of another, coupled with wish to relieve it
• Dialogue (D) – acknowledging personhood beyond illness, and illness’ emotional impact

The PDQ³⁶ can serving as a meaningful end-of-life legacy work, helping individualize care to that pt. It can highlight pt concerns, as well as hopes, fears, and dreams, allowing for deeper understanding of the individual and enhancing end-of-life care. It gives patients a voice and opportunity to speak about topics that are deeply important to them and that they may not have spoken about before.

(See Ch 1 – Gen Med Hx – MF1)

• Is spirituality important to you as you cope with your illness?
• Do you struggle with the loss of meaning and joy in your life?
• Do you currently have what you would describe as religious or spiritual struggles?

Why Check: Spirituality is “the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred.”³⁷ Spirituality is inclusive of particular religious faith. It is an important way pts may cope with illness, and if so, is a source of strength we can help bolster. Questions above are evidence-based screening to identify spiritual distress³⁸ (See Ch 1 – MF1).

• Use the patient’s name and acknowledge their death: I am sorry that [John] is gone
• Use NURSE Statements – e.g.: Understanding (I can’t imagine how difficult this must be); Respecting (I can see that you loved your dad a lot); Supporting (What would be most helpful for you right now? Is there someone you would like to call?)
• Explore support systems for grieving persons: What are your supports?
• Explore important rituals and cultural practices at end of life: Are there specific practices that are important to your loved one at the time of death or afterwards that we should know about?
• Talk about important memories of patient: Can you tell me a little bit about [John] as a person? What have you been remembering about [John]? What do you miss most about [John]?
• Offer information to bring closure: Do you have questions about [John’s] final illness?
• Talk about next steps: I have completed the death certificate. Please take the time you need to be with [John]. Afterwards, [John’s] body will be brought to the [morgue/funeral home]. An original death certificate is sent to the funeral home, and you can request copies from them.

Why Check: Grieving through loss is part of journey of serious illness for pts and loved ones, including⁴⁰:

• (1) Grief: Emotional response associated with loss.
• (2) Anticipatory Grief: Preceding a death, resulting from expectation of event.
• (3) Complicated Grief: Abnormal outcome involving psychological, social or physical morbidity– key differentiation of “normal” from “abnormal” grief is long-term impact on functioning.
• (3) Disenfranchised Grief: Hidden sorrow of equity-deserving populations, with decreased social permission to express many dimensions of loss
• (4) Bereavement: State of loss resulting from death
• (5) Mourning: Essential adaptive process to experience of loss, including socio-cultural rituals.

When caring for loved ones of pt who recently died, it is important we give them space to be with deceased person – to comfort one another, to say goodbye, to perform important socio-cultural rituals. Ideally, funeral arrangements are made in advance, and family member is able to claim body. You can help support loved ones by assessing risk of complicated bereavement using a tool such as the Family/Close Friend Bereavement Risk Assessment tool – if concerns identified, you may reach out afterwards to check-in, and refer to psychosocial supports for the loved ones if concerned.

• Smoking: Pack yrs = packs/day (PPD) * years. If active → current PPD; ex-smoker → quit when?
• Alcohol: How often do you drink (drinks/week)? How many drinks on average? What is size of 1 drink? What kinds of drinks? Any history of alcohol withdrawal/shakes/seizures?
• Recreational: Do you now use, or have you used any of the following (list off to normalize): Marijuana (grams/day, joints/week); Prescription Drugs for non-medical purposes; Street Drugs (cocaine, ecstasy, fentanyl, heroin, MDMA, etc.)

Why Check: PMHx or FMHx of Substance Use Disorders (Alcohol, Illegal Drugs, Prescription Drugs) forms part of Opioid Risk Tool – if positive, this may inform how you approach safe prescribing for pts.

• History of Substance Use Disorders: Alcohol, prescription drugs, illegal drugs → component of Opioid Risk Tool

• Do you need assistance with:
  • ADLs: DEATH - Dressing, Eating, Ambulating/Transferring, Toileting/Continence, Hygiene
  • IADLs: SHAFT – Shopping, Housework, Accounting, Food prep, Transport/Telephone
• Geriatric Giants – any history of: Falls, confusion, Incontinence, Polypharmacy (>5 medications)

Why Check: Pt patterns of functional decline vary with disease trajectory, which can help in assessing supports needed. ADLs also comprise self-care which helps determine PPS Score (see below).

• Are you connected with home care supports? What do they help you with? How often each week?

Why Check: To help support pts at home, Home Care can provide allied health supports (e.g. ADLs help, wound care, etc.). Services vary by region –connect with local home care in region you’re working in. You can help advocate for pts to have ↑ supports, particularly if you identify palliative care needs.

Parameter 1 – Ambulation: Full → Reduced → Mainly Sit/Lie → Mainly in Bed → Bed-Bound → Death

Parameter 2 – Activity, Evidence of Disease: Includes ability to participate in activity, work, hobby/housework; as well as evidence of disease (none → some → significant → extensive)

Parameter 3 – Self Care: Full → Occasional Assistance Necessary → Considerable Assistance Required → Mainly Assistance → Total Care

Parameter 4 – Intake: Normal → Normal/↓ → Minimal/sips → Mouth care only

Parameter 5 – Conscious Level: Full →Full/Confusion →Full/Drowsy/Confusion →Drowsy/Coma/Confusion

Why Check: PPS is a helpful communication tool for care providers to describe pt functional level. It is expressed in 10% increments (e.g. PPS 10→20→30, etc.). To arrive at PPS, you assess parameters in sequence (i.e. a patient who is totally bed-bound is max PPS 30%, even if their intake was normal and consciousness levels was full). It is useful in prognosticating particularly in cancer (Palliative Performance Index, above; for pts with PPS ≤50%, 10% survive > 6 months). It is also included in referral criteria for placement e.g. hospice and can help determine follow-up planning e.g. which patients can continue to be followed in clinic vs. benefitting from transition to home-visiting approach.

• Tell me more about that
• Tell me more about your mom as a person…
• Tell me about yourself. How would you describe yourself? If you had to describe yourself in 50 words or less, what would you say? What if you wanted to expand on that?

Why “Tell Me More…” is Helpful: Two important patient-centred physician qualities are curiosity and patience – the curiosity to ask questions such as “tell me about yourself” and patience to wait for the answer. In a palliative care assessment, try to understand pt as a whole person. Asking the open-ended question “tell me more…” gives permission to patients to open up and lets them know you care about them as a person, beyond the serious illness they’re facing. “Tell me more…” can also help a person clarify and expand on their thoughts and can help you avoid jumping to assumptions.

• I wish we could slow down or stop the growth of your cancer, and I promise that I will continue to look for options that could work for you. I worry that you and your family won’t be prepared if things don’t go as we hope. I wonder if we can discuss a plan B today.
• I wish things were different and you make it to your daughter’s wedding next year. I worry it may not be possible. I wonder if we could talk about how we can prepare in event you can’t be there?

Why “Wish-Worry-Wonder” is Helpful⁴³: This tool is a helpful way to advance a values-based conversation with pt and/or loved ones.

• “I wish” is an expression of empathy – allowing clinician to align with pt’s hopes in wishing circumstances were different, to temporarily walk in the pt’s shoes, and identify unrealistic hopes reality could be changed.
• “I worry” allows you to be truthful while sensitive.
• “I wonder” is a subtle way to advance conversation (e.g. to make a recommendation).

See Ch 1 – General Medical History – MF1 and Ch 38 – Prescribing Lifestyle Interventions in Medicine - IF

• Naming: It sounds like you are [frustrated, worried, sad]; It sounds like you were anxious because you didn’t feel there was as much attention given
• Understanding: I can’t imagine how difficult this must be; This helps me understand your thinking
• Respecting: I can see you’ve really been trying to follow our instructions; I think you’ve done a great job with this; You’ve done an amazing job caring for your dad
• Supporting: I will do my best to make sure you have what you need; We are here to support you every step of the way. If there’s any way we can help, we’ll be there.
• Exploring: Tell me more about…; Could you say more about what you mean when you say…

Why NURSE Statements are Helpful: Empathy is an affective response which acknowledges and attempts to understand a person’s suffering through emotional resonance. Empathy is a vital component of high-quality healthcare, and physician statements of empathy are an important opportunity to connect and support pts and families⁴⁵. During your interview, attend to emotional cues (e.g. affect change) in the room. When a family makes an emotional statement, or you notice affect change, these are opportunities to show empathy. When these opportunities arise, do not respond with cognitive statements (e.g. result of the CT scan). Instead, consider using statements that articulate empathy, followed by silence to allow time to respond. NURSE is a way of organizing statements articulating empathy that can help if you feel unsure what to say next. The list above is not exhaustive and shouldn’t be prescriptive – use statements that feel right and genuine to you and observe preceptors for examples of statements they model.

If you were very sick and could not speak for yourself, who would you trust to make medical decisions for you?

Why Check – Capacity and Decision Making: For a patient to give informed consent, they must be free to make a decision without coercion or undue influence and must have capacity for decision making. Capacity is decision specific. Elements of capacity include⁴⁶: (1) Understand – Risks/benefits/alternatives to Tx, including risk of death; (2) Appreciate – Able to apply info to their situation; (3) Consistent Preference – for one treatment over another; (4) Rational Thinking – using recognizable, logical reasoning to arrive at choice – may differ from clinician recommendation; (5) Expression –able to communicate 1-4 to healthcare team.

When pt unable to give informed consent for a given decision, SDM is activated. The SDM should act based on pt’s prior expressed wishes for care; or if wishes unknown or not possible, based on pt’s best interests. Every person in Ontario has an SDM based on hierarchy (Left) – to serve as SDM, person must be willing and available to act as SDM for pt and have capacity themselves – more SDM info. If pt has a different trusted person they want to be SDM, we can help pts name POA-PC (no lawyer required). As clinicians, we can help pts to know their SDM, and name a POA for Personal Care if desired; and facilitate thoughtful conversations between pts and SDMs about what matters to them and wishes for care in facing serious illness.

To help patients name a POA for Personal Care: POA Application (Pg 21-22 application).

Note: ACP document legal standing varies by province. In Ontario, they generally have no legal standing – exceptions include Community DNR Form (a medical order, patient does not sign), and Power of Attorney for Personal Care.

Suggested ways to introduce topic for patients (Hospice Palliative Care Ontario):

• You are well now, but it is good to plan for the future. The best time to think about ACP is when you are well and able to make decisions in a calm state of mind.
• I want to give you best care possible. Talking about your wishes helps me do that.
• Advanced Care Planning is similar to writing your will. It is good to be prepared and let your wishes be known.
• I’d like to talk about your wishes for care in case you get very sick. That might not happen, but if it does and you can’t communicate, it would be important to know who would speak for you and about your wishes for care.

Why Check: ACP is a future-oriented process of reflection and communication for pts to reflect on values and wishes. It facilitates ongoing, values-based conversations between patients, their SDMs and clinicians about what matters to pts and wishes for care in facing serious illness – to develop a rich understanding of prior expressed wishes for care. Helpful ACP tools for pts include Speak Up Canada including a National Workbook (PDF). The ACP Conversation Guide can help facilitate ACP conversations between clinicians and patients.

Note: Per CPSO Policy Decision-Making for End-of-Life Care, “When patients have significant illness or disease and are at risk of clinical deterioration (e.g. cardiac or respiratory arrest) in the foreseeable future, physicians must, where possible, initiate a timely goals of care discussion”.

As per the CPSO policy:

• Life-sustaining treatment is defined as “any medical procedure or intervention which utilizes mechanical or other artificial means to sustain or replace a vital function essential to the life of the patient.” Its intent is not to reverse the underlying medical condition. Examples include Medically assisted nutrition/ hydration, Mechanical Ventilation, Hemodialysis, Transfusions, Vasopressors, Inotropes, etc.
• Resuscitative measures are defined as “a suite of medical interventions (e.g. chest compressions, artificial ventilation, intubation and/or defibrillation) that may be provided following cardiac or respiratory arrest in an attempt to restore or maintain cardiac, pulmonary and circulatory function.”

If it’s okay with you, I am hoping we can talk about where things are at with your illness and where they might be going. I may refer to this Conversation Guide just to make sure that I don’t miss anything important.

• Tool 1 – Serious Illness Conversation Guide (SICG) (PDF)
• Tool 2 – REMAP Tool
• Tool 3 – OPCN Approaches to GOC Discussions (PDF)

Why Check: A goals of care (GOC) discussion is a values-based conversation about a patient grounded in current care at a specific moment in time. A goals of care discussion is a complex problem – no one approach is best for every pt and family, every time. In general, clinicians want to uncover how people want to live, NOT how they want to die. Remember that palliative care is active care, and commit to the principle of non-abandonment, that we support pts every step of the way.

Many communication tools exist to help clinicians hold values-based GOC discussions. In Pro Comp, you will practice Serious Illness Conversation Guide (SICG). This includes a helpful clinician reference guide (PDF), which emphasizes that regardless of the tool chosen, recommended practices include:

• Prognosis: Give a direct, honest prognosis when desired by the patient; present prognostic information as a range (e.g. hours-days, days-short weeks etc.)
• Recommendation: Make a recommendation (“based on X medical situation, Y treatment options, and Z important goals and values, I recommend…) – different from SPIKES protocol for breaking bad news; reflects how Goals of Care Discussions are grounded in current care at a specific moment in time.
• Emotion: Acknowledge and Explore Emotion (See Exploring Emotion Toolbox Above); do not provide factual info in response to strong emotions
• Communication skills: Focus on patient quality of life, fears and concerns; Allow Silence; do not talk more than half the time; do not focus on medical procedures; do not give premature reassurance; document the conversation

• RR and Temp: May check in context of comfort-based approach (RR↓ re. Resp depression side-effect; Tachypnea as marker of ↑WOB; Temperature in context of treating fever >38C causing discomfort)
• Approach to other Vital Signs (HR, BP, O2sat): Monitoring frequency depends on context, goals of pt
• Orthostatic Vitals: If concerned about dehydration, may consider orthostatic vitals.
• Weight: Document weight in visit

Why Check: Weight changes can be important sign of cachexia – weight loss >5% suggests developing cachexia; 15% suggests advanced cachectic state. BMI can be complicated e.g. by edema ascites.

• O2sat: Remember that dyspnea is a subjective experience independent of O2sat – in context of comfort-based approach, we can treat with O2 via Nasal Prongs for comfort, not based on O2 sats.

Say: I will look for non-verbal signs of discomfort.

Do: Look at pt’s face for brow lowering, orbit tightening, upper lip raising, eyelid closure, and wincing. Listen for vocalizations of pain (grunting, groaning, moaning, crying). In pt’s body language, look for behaviors diminishing threat or managing pain (e.g. guarding, avoid positions, refusing to move, pulling away, thrashing, clenching fist, fetal position, stiff/rigid). Ask about interpersonal changes (becoming withdrawn, ↓ social interactions, difficulty to console) and sleep changes.

Report: I note no non-verbal signs of pain on examination.

Why Check: For pts who are unable to communicate pain verbally e.g. in dementia, monitor for non-verbal signs of pain, and communicate what to look for to loved ones caring for the patient can help guide or management of pain, and empower caregivers to do the same.

Say: I will inspect for muscle and subcutaneous tissue wasting. Please relax the shoulders.

Do: Beginning at patient’s face, look under eyes (subcutaneous fat– look for hollow look, dark circles) and temples (muscle– hollowing, depressions). Progressively exposing patient’s torso, look at clavicle (muscle– protrusion/prominence), shoulders (muscle– square look, protruding acromion process), scapula (muscle– bony prominences, depressions). Pinch skin of triceps between your thumb and D2 (subcutaneous fat – look for minimal space between fingers, loose-fitting skin), and assess D1-D2 interosseous muscles on dorsum of hands (muscle – depression/flat). Look at ribs (muscle and subcutaneous fat –bony prominence and indentations). Progressing to pelvis and lower limbs, assess iliac crest (muscle – crest prominence) and quadriceps (muscle – depression/atrophy/prominent knee).

Report: I note no signs concerning for muscle or subcutaneous tissue wasting of cachexia or sarcopenia.

Why Check: Assessment of Cachexia (fat + muscle wasting due to disease, inflammation) and Sarcopenia (↓ muscle mass strength) are important components of assessment along with weight. As it is irreversible, cachexia is important to monitor for early intervention (e.g. dietary). Specific signs of subcutaneous fat and muscle wasting noted above are from Subjective Global Assessment Form Guidance for Body Composition⁴⁷.

Say: I will inspect for signs that our patient is actively dying.

Do: Look for ↓ level of consciousness (do they respond to voice, touch?); watch rhythm of breathing for Cheyne-Stokes Breathing (periodic breathing – deep breathing gradually shallower with periods of apnea). Listen for terminal secretions (“death rattle’ of profuse airway secretions – accumulation of pharyngeal/ pulmonary secretions, unable to clear due to ↓ LOC). Inspect extremities for livedo reticularis (mottling – reticulated vascular pattern, lace-like purplish discolouration). Gently palpate pt extremities – cold to touch?

Livedo Reticularis⁴⁹

Report: I note no signs that the patient is actively dying.

Why Check: In general, signs of death approaching include difficulty to swallow meds, PPS 10-20% i.e. bed-bound, total care, minimal-to-no PO intake, sleeping more than awake). Signs of Actively Dying are natural part of the dying process, that body is shutting down, and not indication of suffering. When you notice these signs, can be helpful to educate pt and family re. what to expect and give space to prepare. Note: terminal secretions not a sign of dyspnea – patient is usually unaware of secretions at end of life.

Also seen in Ch 31 – Screening Neuro Exam - MF4 and Ch 40 – Ophthalmological exam – IF

Say: I will assess each eye’s response to light. Please remove your glasses and keep both eyes open during this test.

Do: Inspect pupil size (Snellen Pocket card tends to have a guide). ≤1 mm difference between two eyes is normal. Using a flashlight, shine light in one eye. Look for pupillary constriction both direct and consensual (part of the Pupillary Light Reflex). Repeat in other eye. Then, swing flashlight back and forth between both eyes, each pupil should constrict (no relative afferent pupillary defect).

Report: Pupils are equal and reactive to light, there is no relative afferent pupillary defect.

Why Check: Pupillary Response to Light is one of the 3 “vital signs” in ophthalmology, along with Visual Acuity and Intraocular Pressure.

• Pupillary Response: PERRLA (Pupils Equal Round and Reactive to Light & Accommodation) test has high sensitivity for optic nerve disease, ipsilateral brain herniation, and Posterior Communicating Artery (Circle of Willis) aneurysm. It also has high sensitivity & specificity for Horner’s Syndrome.
• Positive relative afferent pupillary defect (RAPD): Dilation of one pupil during swinging flashlight test suggests a retina or optic nerve injury – extremely important as often the only objective finding on exam in optic neuritis or a tumor compressing on the optic nerve.
• In a palliative care context, important findings include:
  • Pinpoint pupils are a sign of narcotization (opioid overdose).
  • Fixed, dilated pupils also form part of pronouncement of death.

Say: I will now inspect for dry mouth and thrush, a common mouth infection. Can you open the mouth wide?

Do: In mouth, look for dry mucous membranes as a potential sign of xerostomia; Look at the surface of tongue – should be symmetrical, rough with papillae, and possibly covered with white coating, or clear. Look for white plaques that can scrape off on the tongue (thrush).

Oral Candidiasis⁵⁰; Xerostomia⁵¹

Report: I note no signs of xerostomia or thrush.

Why Check: Oral Thrush (Candidiasis) is an important, treatable cause of nausea/vomiting, and dysphagia/ odynophagia to assess for. Steroid use is a risk factor for thrush – examine for it when prescribing steroids to pts. Xerostomia is a treatable, subjective experience of dry mouth that can cause issues with chewing, swallowing and speech and can be due to medications (e.g. anticholinergic, antidepressant, opioids, diuretics).

See Chapter 9 – Volume Status – MF2 for details. JVP, as part of volume status exam, is included below.

Why Check: Volume status is important part of assessment e.g. hypovolemia in context of delirium, opioid-induced neurotoxicity, etc.; hypervolemia in context of dyspnea, ascites, edema, etc. Note: dry mucous membranes re. thirst – at end-of-life, good mouth care can effectively treat thirst (e.g. oral gels, sprays)

• JVP- [4, 4]
• JVP Waveform - [2, 3]

Also seen in Ch 6 – Cardiac Exam – MF1 and Ch 9 – Volume Status Exam – MF2

Say: Please lay back on the exam table and tilt the head all the way to the left.

How do you differentiate the JVP from the Carotid Pulse?

Do:

9. Prop up head of exam table to 30-45°. Stand at right side. Look for JVP between 2 heads of sternocleidomastoid (i.e. sternal head medially, clavicular head laterally), or look lateral to sternal head of sternocleidomastoid.
10. Once you have located the JVP, measure by placing ruler on sternal angle facing vertically
11. Make a right-angle triangle going from the apex of the JVP to the ruler.
12. The height on the ruler is the measured JVP.

Note: on OSCE, estimate using your fingers, < 3 finger breadths is normal – not expected to use ruler.

What is Normal: 3-4 cm Above Sternal Angle (ASA)

Report: JVP was located and is < 5 cm above the sternal angle

Why Check: The Jugular Venous Pressure (JVP) is used to check the intravascular volume status of patients (termed “wet” if the patient is volume overloaded and the JVP is elevated, or “dry” if the patient is volume depleted and the JVP is flat). The JVP is an indirect measure of right atrial pressure via visualization of the internal jugular vein. The Central Venous Pressure (cm H2O) can be estimated from the JVP by adding 5cm to the measured value, since right atrium is approximately 5cm below the sternal angle. In the appropriate clinical context (e.g. dyspneic patients in Emergency Department), an elevated JVP increases the likelihood of suspected Congestive Heart Failure (LR+ 5.1; LR- 0.66) If the JVP increases with inspiration, this is called Kussmaul’s Sign and may be a sign of severe pericarditis or right-sided heart failure. Beck’s Triad (for Acute Cardiac Tamponade) includes distended neck veins, low Arterial Blood Pressure, and Muffled Heart Sounds. In a palliative care context: A palliative care emergency presenting with distended neck veins is Superior Vena Cava Syndrome (e.g. from a Pancoast Tumor causing Superior Vena Cava compression)

Also seen in Ch 5 – Resp Exam – MF1

Say: If you can breathe normally, I will examine the face and torso for signs of work of breathing.

Do:

1. Look for signs of increased work of breathing: tripod position, pursed lips, nasal flaring, accessory muscle use (sternocleidomastoid, scalene, trapezius, internal intercostal, or abdominal muscles), paradoxical breathing (Hoover’s sign), tracheal tug (abnormal downward movement of trachea during inspiration), suprasternal indrawing, intercostal indrawing, supraclavicular retraction, grunting (pediatrics).
2. Observe if patient can finish complete sentences (not interrupted by work of breathing).

Report: There are no signs of increased work of breathing (comment on all the above out loud as you observe on inspection). You are speaking in complete sentences which is reassuring as well.

Why Check: Important for patients with dyspnea, particularly in non-verbal patients where patients cannot tell us their subjective dyspnea symptoms, and we can only treat objective findings. The inability to speak in complete sentences raises concern for higher degree of respiratory distress. Absence of chest movement also forms part of pronouncement of death.

Also seen in Ch 13 – Abdo Exam – MF3

Say: I will now inspect the hands for signs of liver disease. Can you keep both hands out with wrist extended? Thank you. Now, open each hand fully.

Do: Look for Asterixis – a flapping tremor of the hand with wrist extended

Report: I note no Asterixis on inspection.

Why Check: Asterixis is an example of negative myoclonus (transient <0.5s inhibition of tonic muscle contraction) due to impaired metabolism in liver disease (e.g. ammonia metabolism to urea), and part of assessment for hepatic encephalopathy.

Also seen in Ch 8 – Peripheral Vascular Exam – MF1

Say: I will palpate the peripheral pulses in the arms, lower legs and feet.

Do: Palpate for pulses bilaterally. You can palpate the most distal pulse in each limb first. If non-palpable, move more proximally until pulses are palpable. Pulses should be symmetrical, a regular rate and rhythm with no delay between them.

Where to Palpate – Lower Extremities:

• Dorsalis Pedis: Dorsal side of foot, just lateral to extensor tendon of big toe
• Posterior Tibial: Posterior and inferior to medial malleolus = bony prominence on side of ankle
• Popliteal: Behind knees, use 2 hands

Where to Palpate – Upper Extremities:

• Radial: Along radius bone just proximal to wrist on palmar side of hand
• Brachial: Medial to biceps tendon and 2-3cm above antecubital fossa

Grading: 0 = Non-palpable; 1 = Barely palpable; 2 = Easily Palpable (Normal); 3 = Bounding; 4 = Aneurysmal.

Report: I palpated the dorsalis pedis and radial arteries as most distal pulse in each extremity. They were grade 2, symmetrical bilaterally with no delay, and regular rate and rhythm.

Why Check: Assess extent of arterial insufficiency (distal pulses lost prior to more proximal pulses). 6P’s of Acute Limb Ischemia: Pulseless, Pallor, Pain, Paresthesia (Pins/Needles), Polar (Cold) & Paralysis. Pulse character e.g. regularly regular, irregularly irregular, etc. can also give sense of potential underlying arrhythmia e.g. atrial fibrillation. Absence of pulse (palpate carotid to be sure) also forms part of pronouncement of death.

Also seen in Ch 8 – Peripheral Vascular Exam – MF1

Say: I will palpate the central pulses in the neck, arms and abdominal region.

Do: Palpate pulses and note any differences bilaterally. You should observe symmetry in amplitude, contour and upstroke.

Where to Palpate – Central Pulses:

• Carotid: Medial to sternocleidomastoid muscle, roughly at level of cricoid cartilage
• Abdominal Aorta: Slightly left and superior to umbilicus
• Femoral: Midway between ASIS and Symphysis pubis

Grading: 0 = Non-palpable; 1 = Barely palpable; 2 = Easily Palpable (Normal); 3 = Bounding; 4 = Aneurysmal.

Report: I note symmetry in amplitude, contour and upstroke at the arterial pulses examined.

Why Check: Assess signs of obstructive arterial pathologies. Note that Renal and Iliac Arteries cannot be palpated and are assessed through auscultation alone.

Also seen in Ch 6 – Cardiac Exam – MF1 and Ch 8 – Peripheral Vascular Exam – MF1

Say: I will palpate for leg swelling (Sacral edema if patient immobile). Please tell me if you are in discomfort.

Do: Press firmly with pads of your thumbs on the dorsal surface of patient’s leg, just above the ankle at bony prominence. Hold for 10s, then release. Look for pitting edema – skin does not bounce back immediately (i.e. pits). How high does it go on the leg? Is it pitting (transudate) or non-pitting (exudate)? Look at patient for signs of discomfort and stop exam signs of distress.

Pedal Edema⁵²

Grading: 0 = none; 1+ = 2mm depression; 2+ = 4mm depression; 3+ = 6mm depression; 4+ = 8mm depression

Report: I note (grade) pitting edema bilaterally, up to the level of (location e.g. ankles).

Why Check: Pitting edema can be a sign of peripheral venous disease. Edema is excess interstitial fluid accumulation causing swelling, particularly in gravity dependent areas (e.g. feet). Normally, this fluid returns through lymphatic drainage. Pitting edema = transudate (non- protein filled) – sign of increased hydrostatic pressure (e.g. congestive heart failure, decreased venous return) or decreased oncotic pressure (e.g. nephrotic syndrome, hypoalbuminemia – common in palliative care setting). Non-pitting edema = exudate (protein) filled, or an issue with lymphatic drainage (e.g. lymphedema).

Also seen in Ch 10 – Genitourinary History and Renal Exam – MF2

Say: I will now palpate for a distended bladder. Could you please lie flat on the exam table?

Setup: Expose lower abdomen to be able to palpate/landmark symphysis pubis.

Do: Palpate over lower abdomen – check if bladder palpable above symphysis pubis

Report: I detect an enlarged bladder on palpation, and would recommend a bladder scan to confirm.

Why Check: Urinary retention can cause post-obstructive acute kidney injury, with inability to pass urine, suprapubic pain, and delirium. While a Bladder Scan (ultrasound) is best to assess bladder volume, a palpable bladder has an LR+ of 1.9, LR- of 0.3 for detecting ≥400mL in bladder⁵³ to determine who would benefit from a bladder scan and intervention e.g. with catheterization if appropriate. Causes include urinary outlet obstruction (e.g. benign prostatic hypertrophy, pelvic organ prolapse, constipation), neurogenic causes (e.g. spinal cord compression, stroke) and medication causes (e.g. anticholinergics, opioids)

See Chapter 13 – Abdominal Examination – MF3 for Details. In particular, assess ascites, guarding/rigidity, rebound tenderness, and organomegaly (particularly hepatosplenomegaly) and stigmata of liver disease.

Why Check: Generally screening abdo exam is performed. More extensive abdo exam may be performed in pts with N/V, abdo pain, constipation, intra-abdominal diagnosis, liver disease, concern for malignant bowel obstruction (palliative care emergency). Hepatosplenomegaly and stigmata of liver disease may signal liver dysfunction, impacting drug metabolism/medication selection, fluid status, and coagulation.

• Inspect- [3, 4]
• Palpate- [2, 4]

Also seen in Ch 13 – Abdo Exam – MF3

In an OSCE: Always OFFER to do a DRE if abdominal exam is required (rule of thumb is every abdominal exam requires a DRE). You will likely not have to perform a DRE in the OSCE, as you would in clinical practice.

Say: Based on your findings on history and physical exam, a rectal exam is important to determine next best steps in your care. This is something we do with all our patients who come in with ___ (e.g. abdominal pain and blood in the stool) The exam should take under 5 minutes. How does that sound to you?

Setup: Offer a chaperone (see Ch 4 – Vital Signs and Introduction to Patient-Centred Physical Exams – MF1). With patient providing informed consent, in a private exam room space, give the patient a gown and drape, and ask them to change with undergarments off after leaving the room. Let them know you will return in 5 minutes. Knock on door to ask for permission to re-enter room. Put gloves on and lubricate gloved finger (if stock, DROP from nozzle – avoid contamination of stock) with good lighting. The patient lies on their left side, both knees flexed towards the chest. Spread the buttocks, and inspect for external hemorrhoids, fissures, rectal prolapse, perianal abscesses, or anal fistula.

Do: Next, soft rounded pad of your finger should go through; stop for a moment at the anal verge then continue; make note of anal sphincter tone (re: Neurology, Upper motor neuron lesion vs. Lower motor neuron lesion differentiation – explored in Ch 31 – Neurology Exam – MF4). Rotate hand to feel all sides of walls, checking for any irregularity in thickness of the wall, hemorrhoids, abscesses, or fecal impaction. May also check for swelling or tenderness of rectovesical pouch in males or rectouterine pouch (Pouch of Douglas) in females. In male exam, may also check the prostate for size, swelling, tenderness, consistency symmetry, and nodularity (do not need to palpate prostate in DRE specifically, but may be combined as part of exam if indicated). There should not be a sensation for patient, except the urge to pass urine when palpating around the prostate in male exam. After completing exam, inspect the gloved finger for any blood or melena stool.

Report: There is no evidence of external or internal hemorrhoids, fissures, fistula, rectal prolapse, perianal abscesses, or inflammation on DRE, which is reassuring. (If prostate was palpated, report if enlarged, nodularity, firm or asymmetrical).

Why Check: DRE is a routine part of the abdo exam, where “every abdominal exam requires a DRE.” A DRE is distinct from Bimanual Exam or Male Genital Exam (Ch 19 – Sensitive Pelvic Exams – MF3). A DRE is important particularly for altered bowel movements, and if patient complains of BRBPR (Hematochezia) or Melena stools. In an OSCE scenario, always offer to do a DRE. For patients with constipation refractory to laxatives, a DRE can be helpful to note rectal tone, masses, consistency of stool and stool impaction. A ↓ rectal tone can be helpful in assessment for spinal cord compression (explored in Ch 31 –Neuro Exam – MF4).

Also seen in Ch 5 – Resp Exam – MF1

Say: I will assess for dull sounds along the back & chest. Please tell me if you are in discomfort.

Setup: Patient crosses their arms to displace scapulae.

Do: Using wrist drop technique, move side to side beginning superiorly and progressing inferiorly to assess for bilateral resonance. Look at patient for signs of discomfort and stop the exam if the patient is in distress.

Report: The chest shows equal resonance bilaterally on percussion.

Why Check: In a palliative care context, intercostal percussion along with diaphragmatic excursion, especially unilateral differences, can help identify causes of dyspnea. Dullness to percussion increases likelihood of suspected consolidation (LR+ 3.0 for pneumonia) or pleural effusion (LR+ 8.7). Dullness at lung bases points to pulmonary edema. Hyper-resonance on percussion increases likelihood of suspected chronic airflow obstruction (i.e. hyperinflation, LR+ 5.1) or Pneumothorax.

Also seen in Ch 5 – Resp Exam – MF1

Say: I will assess how the diaphragm moves up and down along the back with breathing.

Do:

5. Start below the level of the scapula on one side.
6. Patient should expire and hold while you percuss down until transition from resonant to dull.
7. Patient can now inspire and hold while you percuss further down until dull again.
8. Measure distance and repeat on other side.

What is Normal: 4-5 cm

Report: Diaphragmatic excursion is 4-5cm bilaterally.

Why Check: In a palliative care context, intercostal percussion along with diaphragmatic excursion, especially unilateral differences, can help identify causes of dyspnea. Unilateral changes can indicate a pneumothorax or pleural effusion re filling up pleural space. Alternate method: Reverse order i.e. percuss while patient inspires first, then percuss while patient expires.

• General- [3, 4]
• Stridor - [4, 4]
• Pleural Rub- [1, 4]
• Stridor (Peds) - [1, 3]
• Wheeze (Infant) – [1, 2]

Also seen in Ch 5 – Resp Exam – MF1 and Ch 9 – Volume Status Exam – MF2

Say: I will now listen to the chest and back – breathe in and out each time you feel the stethoscope. Please pause if you become light-headed.

Setup: Patient crosses arms to displace scapulae.

Do: Hold stethoscope still when listening (don’t want to only hear rustling of moving it around).

Report: I note air entry bilaterally with vesicular breath sounds and no adventitious sounds.

In the context of a palliative care assessment, respiratory auscultation is generally performed, with added focus for patients presenting with symptoms of dyspnea, cough, edema, or chest pain. Similar to a volume status exam, respiratory auscultation here is helpful to listen for signs of hypervolemia e.g. diminished breath sounds greatly increases likelihood of Pleural Fluid (LR+ 18.6), fine crackles (e.g. in congestive heart failure) or coarse crackles (e.g. with pulmonary edema) particularly in dependent areas (e.g. at lung bases). Absence of breath sounds also forms part of pronouncement of death.

What is Normal? Normal auscultation depends on listening location

• (1) Trachea: Bronchial – harsh, high-pitched, heard through full inspiration and expiration
• (2) Sternum: Bronchovesicular – less harsh, heard through full inspiration, short and softer on expiration
• (3) Everywhere else: Vesicular - gentle, low-pitched, quiet on inspiration and nearly silent on expiration

Why Check: Assessing for Adventitious (Abnormal) Sounds, including:

• Bronchial breath sounds over lung (normal over trachea) points to consolidation
• Early Crackles increases likelihood of suspected obstructive disease (LR+ 14.6), and particularly for severe obstruction in patients with chronic airflow limitation (LR+ 20.8; LR- 0.1)
• Stridor: May be earliest sign of airway compromise.
• Note - Pediatrics: Wheezing in Infants: Respiratory exam of wheezing in infants shows good inter-rater reliability, but respiratory status overall is most reliable.⁵⁴

Issue: Adventitious sounds on auscultation is “the most ambiguous and confusing nomenclature in all of physical diagnosis” where clinicians use diverse terms to describe similar sounds⁵⁵.

• S3, S4- [1, 3]
• Murmur [1, 3]
• Abnormal S1, S2 [1, 1]
• Position [1, 4]

(Also seen in Ch 6 – Cardiac Exam)

Say: I will auscultate the chest for heart sounds. Please breathe normally as I listen.

Do: Listen carefully with the diaphragm of the stethoscope at each valve region (Aortic, Pulmonic, Tricuspid, and Mitral). Listen for abnormal heart sounds or murmurs.

Report: I note a normal S1 and S2. There are no extra heart sounds or murmurs present.

In the context of a palliative care assessment, cardiovascular auscultation is generally performed, with added focus for patients presenting with symptoms of dyspnea, cough, edema, palpitations or chest pain.

What Is Normal? S1 and S2, regular rate and rhythm, with no extra heart sounds and no murmurs

• S1 = loudest at Tricuspid & Mitral valves (re atrioventricular valves closing at start of systole)
• S2 = loudest at Aortic & Pulmonic valves (re semilunar valves closing at end of systole). Physiologic splitting of S2 normal on inspiration due to ↑ -ve intrathoracic pressure – best heard in sitting position.

Abnormal Findings – Abnormal S1 and S2 and Associated Conditions:

Abnormal Findings – Extra heart sounds: Best heard in left lateral decubitus position.

• S3: Heard just after S2, with rapid and early diastolic filling of ventricles, “Sloshing in” (e.g. volume overload). In the appropriate clinical context (e.g. dyspneic patients in Emergency Department), hearing an S3 increases the likelihood of Congestive Heart Failure (LR+11, LR- 0.88).
• S4: Heard just before S1, with diastolic rapid late filling of ventricles, “A stiff wall” (e.g. pressure overload, Left Ventricular Hypertrophy).
• S3 + S4: Summation gallop

Abnormal Findings – Murmurs (represent Turbulent blood flow). Listen for Location (i.e. identify valve); Radiation (e.g. to carotids, left sternal border, etc.); Timing (e.g. Systolic vs. Diastolic); Configuration (e.g. Crescendo, Decrescendo, Crescendo-decrescendo, Plateau); Quality (e.g. high vs. low pitch; harsh, musical, blowing, rumbling, etc.); Change with maneuvers (e.g. with inspiration, Valsalva, squat); and Volume/Grade

• Systolic Murmur: Grades 1 (very faint); Grade 2 (soft, readily detectable); Grade 3 (easily detectable without thrill); Grade 4 (easily detectable with thrill); Grade 5 (very loud murmur audible with stethoscope placed lightly on chest); Grade 6 (extremely loud, audible with stethoscope off chest)
• Diastolic Grade: Grade 1 (barely audible); Grade 2 (audible, soft); Grade 3 (easily audible); Grade 4 (loud)

Common Murmur – Description

Mitral Stenosis (MS)

• Pathophysiology: Mitral valve should be open in diastole – mitral stenosis causes incomplete opening of mitral valve in diastole
• Murmur: Diastolic murmur with Opening Snap best heard at cardiac apex in left lateral decubitus position. Worsened by ↑ venous return (squat/leg raise)

Aortic Regurgitation / Insufficiency (AR/AI)

• Pathophysiology: Aortic valve should be closed in diastole – aortic regurgitation causes incomplete closing of aortic valve in diastole
• Murmur: Diastolic murmur heard best at right base in sitting position. Worsened by ↑ venous return (squat/leg raise)

Aortic Stenosis (AS)

• Pathophysiology: Aortic valve should be open in systole – aortic stenosis causes incomplete opening of aortic valve in systole
• Murmur: Systolic murmur with crescendo-decrescendo pattern heard best at right base. Radiates to R clavicle and/or R carotid. Worsened by ↑ venous return (squat/leg raise)

Hypertrophic Cardiomyopathy (HCM)

• Pathophysiology: LV Outflow Tract Obstruction due to sarcomere gene mutations.
• Murmur: Systolic murmur with crescendo-decrescendo pattern heard best at cardiac apex and left lower sternal border. May radiate to axilla. Improved by ↑ venous return (squat/leg raise)

Mitral Regurgitation (MR)

• Pathophysiology: Mitral valve should be closed in systole – mitral regurgitation causes incomplete closing of mitral valve in systole.
• Murmur: Systolic murmur with holosystolic pattern heard best at cardiac apex. Radiates to axilla. Worsened by ↑ venous return (squat/leg raise)

Mitral Valve Prolapse (MVP)

• Pathophysiology: Mitral valve should be closed in systole, where thickened mitral valve leaflets in MVP cause imperfect closure of mitral valve in systole.
• Murmur: Systolic murmur similar to Mitral regurgitation, but improved by ↑ venous return (squat/leg raise)

Maneuvers to Accentuate/Differentiate Murmurs:

Note on Pediatric Cardiac Auscultation: Not all pediatric murmurs are pathologic; pathology more likely if murmur is systolic grade 3+; holosystolic; associated systolic click; diastolic; worse on standing; or harsh.

See Chapter 31 – “Complete” Screening Neuro Exam – MF4 for details.

Why Check: For ambulatory pts, gait can give important clues to falls risk, frailty, function, etc. Assess for antalgic gait as sign of pain, Trendelenburg gait re. hip abductor weakness. Assess for shuffling gait (e.g. Parkinson’s), foot drop, ataxic gait, etc. If pt must stop walking while talking, suggests ↑ falls risk.

See Chapter 36 – Assessment of Psychosis, Delirium and Dementia – MF4 for details on cognitive screening.

Why Check: Cognitive status important for medical decision making (separate from capacity assessment), important sign e.g. delirium, opioid induced neurotoxicity, etc. ↓ LOC also sign of actively dying (above).

See Chapter 32 – Approach to Psychiatric Consultation – MF4 for details.

Why Check: Mental status exam is important in all patients, particularly for patients with concerns of delirium, depression, demoralization, anxiety or pre-existing mental health diagnoses.

Do: During your interview, look for signs of Tardive Dyskinesia (lip smacking, sticking out tongue, grimacing, can have excess salivation); Bradykinesia (slow to move/speak, shuffling gait); akathisia (restlessness with constant need to move), dystonias (abnormal posturing re. spasms/contractures).

Say: I will now assess for Extrapyramidal symptoms, particularly Tone for signs of cogwheeling rigidity.

Do: For each arm, progressing proximal to distal (e.g. elbow, wrist, hand) perform random, slow wiggling movements– look for intermittent ↑ resistance to passive movement in involved muscles).

Report: I note no signs of Extrapyramidal symptoms on patient assessment.

Why Check: EPS are important side-effect of palliative care medications including neuroleptics e.g. for nausea/vomiting, agitated delirium (e.g. Typical Antipsychotics higher risk EPS vs. Atypical), prokinetics (e.g. Metoclopramide, Domperidone), antidepressants e.g. for mood/anxiety/sleep/ neuropathic pain (e.g. SNRIs, SSRIs, NDRIs). When prescribing these medications, monitor development of EPS – can be managed by dose reduction or rotation to different medications in discussion with patient.

Do: During your interview, assess myoclonus at rest and myoclonus with action (e.g. on gait assessment)

Say: I will assess for myoclonus. Can you outstretch both arms with fingers spread apart, and hold it?

Do: Assess for myoclonus on posture. Using light touch of cotton ball, assess stimulus-induced myoclonus.

Report: I note no myoclonus at rest, action myoclonus, or myoclonus on posture.

Why Check: Myoclonus is sudden, brief, simple, involuntary, non-suppressible, lightning-like muscle contractions. It includes +ve (↑ contraction of agonist/antagonist muscle) and -ve myoclonus (transient <0.5s inhibition tonic muscle contraction – e.g. asterixis). Many palliative care meds (e.g. opioids, neuroleptics, anxiolytics, metoclopramide) can cause myoclonus –monitor particularly when prescribing opioids re. opioid-induced neurotoxicity. Other etiologies include: Seizure disorder, dementia, Parkinson’s, Multiple Sclerosis, Post-stroke, infectious, metabolic (hepatic/renal failure, ↓ Na, ↓ glucose, ↑thyroid, ↑O2).

• Tone – [2, 4]
• Bulk – [3, 4]
• Power–[3,4]

See Chapter 31 – “Complete” Screening Neuro Exam – MF4 for details.

Why Check: Motor exam can be helpful in assessment of weakness (e.g. pts with neuropathic pain, spinal cord compression can develop true weakness – not pain related/antalgic); for patients with suspected neurologic disease, distinguish upper motor neuron signs from lower motor neuron signs (e.g. LMN: Flaccid Tone, Fasciculations vs. UMN: Spastic Tone, Contractures)

See Chapter 31 – “Complete” Screening Neuro Exam – MF4 for details.

Why Check: For patients with neurological diseases, reflex exam helpful – e.g. assess “where is the lesion” – UMN Signs Above Lesion (Hyperreflexia, Clonus, Upgoing Plantar Response) vs. LMN Signs Below Lesion (Hyporeflexia) – e.g. spinal cord compression, and in neuropathic pain assessment.

See Chapter 31 – “Complete” Screening Neuro Exam – MF4 for details.

Why Check: For patients with suspected neurologic disease, level of sensory deficit (e.g. dermatome) can help answer “where is lesion”; saddle paresthesia important sign of spinal cord compression. For neuropathic pain and for monitoring for opioid-induced neurotoxicity, assess Allodynia with cotton ball (Dorsal Column – light touch, pressure, proprioception); assess Hyperalgesia with Pin Prick test (Spinothalamic – Pain, Temperature).

• Enter patient room. Introduce yourself and your role (e.g. medical student on team) and that you were called to pronounce the patient. Identify patient by arm tag if available (e.g. for in-hospital death).
• If loved ones present, offer to let them stay during exam (and give space if they need to step out)

• Non-rousable to verbal/tactile stimuli (e.g. pinch nail bed)

• Auscultate for heart sounds (1-3min), palpate for carotid pulse

• Auscultate for breath sounds, look for rise/fall of chest

• Record position of pupils and reaction to light (fixed/non-reactive and dilated in death)
• Close eyelids gently afterwards.

• Record time assessment was completed as the time of death

• “Was called to pronounce patient death. Patient unresponsive to (signs above) at (time of death)”

• Healthcare team: Notify attending physician, family physician
• Next of kin (including loved ones if present): Explored in Bereavement/Grief Assessment above.

Determine if coroner needs to be contacted before removing anything from patient (e.g. IV lines)

• Call coroner if concern it may be a reportable death (e.g. not natural – accident, suicide, homicide, undetermined cause), and mandatory reporting (e.g. in custody, in long-term care, in psychiatric facility, during or following pregnancy, neonatal deaths/stillbirths, Medical Assistance in Dying – MAiD)
  • Note: MAiD does not appear on a death certificate –cause of death listed is underlying illness.
  • For more info: Visit CPSO Policy on Mandatory and Permissive Reporting
  • If potential coroner’s case: Wait for coroner instructions before completing death certificate.
• If not a coroner’s case, complete death certificate: Record most likely cause, with additional causes recorded in reverse chronological order. Ensure legible, accurate and timely, with no abbreviations (e.g. write Chronic Obstructive Pulmonary Disease, not COPD)
  • Note: The original death certificate goes to the chosen funeral home.
  • For more info: Visit Ontario Central Forms Repository for blank death certificate

Complete a discharge/death summary – often a shorter discharge summary. Consider ending the Discharge/death summary note with “May they rest in peace.”

For a discharge summary template, see Appendix 2 – Communicating in Healthcare Teams – MF1

• Determine if autopsy is required or requested (e.g. in coroner’s cases)