Self-care

Question 1

Burnout syndrome

Answer 1

• Loss of enthusiasm for work (emotional exhaustion), sense of being overextended and depleted
• Treating people as if they were objects (depersonalization), callous, cynical, or detached responses to work
• Loss of sense that work is meaningful (Low personal accomplishment), sense of being ineffectual and underachieving

Often arises when individuals are under constant pressure

Question 2

Types of burnout

Answer 2

Frenetic

• Overinvested
• Working very hard to the sacrifice of personal needs
• Frustrated and distressed by lack of proportionate satisfaction (success, reward, or appreciation)

Under-challenged
- Indifferent as a result of insufficient challenge, stimulation, or meaning from work

Worn-out
- Neglectful due to being overwhelmed by too much work stress and lack of proportionate satisfaction (success, reward, or appreciation)

Question 3

Symptoms and signs of burnout

Answer 3

Individual

• Overwhelming physical/emotional exhaustion
• Feelings of cynicism or detachment
• Sense of ineffectiveness and lack of accomplishment
• Avoidance of emotionally difficult clinical situations
• Irritability and hypervigilance
• Interpersonal conflicts - overidentification or overinvolvement
• Perfectionism and rigidity
• Poor judgment (boundary violations)
• Social withdrawal
• Numbness and detachment
• Difficulty in concentrating
• Questioning the meaning of life
• Questioning prior religious beliefs
• Sleep problems, intrusive thoughts, nightmares
• Addictive behaviours
• Frequent illness (often non-specific)

Team

• Low morale
• High job turnover
• Impaired job performance (decreased empathy, increased absenteeism)

Question 4

Contributors to burnout

Answer 4

1. Workload
2. Control and training
   - Sense of personal control over patient care, team dynamics
   - May be particularly exacerbated by clinicians with inadequate training particularly around interpersonal skills, specific palliative care skills, and management of compassion fatigue
   - Extrinsic factors include work conditions, scheduling, etc.
3. Interprofessional/Team conflict and issues
4. Values
   - Greater burnout seen in oncologists who do not value psychosocial aspects of care and relief of physical/psych/spiritual distress (as opposed to curative treatments)
   - Moral distress when duties conflict with values
   - Distress from an unattainable standard
5. Reward
   - Limited or inadequate financial rewards, or institutional recognition/respect
6. Emotion-work variables
   - Clinicians must be able to emotionally engage while at the same time, not being overwhelmed by suffering or grief
7. Extrinsic factors (family, financial, social, etc.)
8. Personality factors
   - Overinvested, highly motivated individuals at higher risk
9. Age
   - Younger caregivers more likely to be burned out
10. Gender
    - Conflicting results

Question 5

Measures to prevent burnout and compassion fatigue: Personal wellness strategies

Answer 5

1. Adequate sleep, nutrition, exercise
2. Relaxation built into the day (meditation, massage, deep breathing, etc.)
3. Engaging regularly in a non-work related activity
4. Supportive and enjoyable relationships with friends/family
5. Good work-life balance to defuse work-related tensions
6. Monitor oneself for tendency to become overinvolved
7. Finding and allowing adequate personal time to grieve losses that come with losing a patient
8. Self-awareness techniques (mindful communication or reflective writing)
9. Specific set of coping skills, stress management, etc. to deal with daily challenges
10. Psychotherapy or spiritual care as needed, particularly in the case of strong emotional reactions or if reminded of personal losses frequently
11. Attending to one’s spiritual needs and developing a philosophy of care that provides personal meaning and purpose

Question 6

Measures to prevent burnout and compassion fatigue: Professional Development Strategies

Answer 6

1. Remember who own’s the problem (don’t make the patient’s problems your own)
2. Learn to handle conflict effectively
3. Training in communication skills
4. Maintain a high level of clinical competence and familiarity with guidelines
5. Engaging in peer consultation
6. Assertiveness skills (set limits, say no, ask for what you need)
7. Clear and consistent to maintain boundaries around vacations, time on call, sustainable workload
8. Diversifying one’s workload so that not all professional time involves care to the most distressed patients
9. Con ed
10. Focusing on positive aspects of one’s own and patient’s experiences

Question 7

Measures to prevent burnout and compassion fatigue: Organizational strategies

Answer 7

1. Adequate resources for the job (supervision, con ed, days off, benefits, positive work environment)
2. Scheduling that accommodates work/life balance
3. Comforting/soothing physical settings
4. Encouraging and supporting choice and control, promoting fairness/justice in the workplace
5. Appropriate recognition and reward
6. Supportive work community
7. Adequate supervision and mentoring
8. Respect for the work performed by PC clinicians
9. Regular discussions of challenging cases where all team members are encouraged to contribute in a safe, supportive environment
10. Mindfulness-based stress reduction for team

Question 8

Compassion Fatigue

Answer 8

• Emotional impact of working with people involved in traumatic life events
• May be a form of PTSD

Question 9

Symptoms of Compassion fatigue

Answer 9

• Strong emotions (guilt, sadness, anger)
• Intrusive thoughts/nightmares
• Avoidance
• Feeling numb or frozen
• Feeling isolated or personally responsible
• Mistrust of others
• Increased or decreased sense of power or control
• Cynicism
• Withdrawal from the larger treatment team or personal relationships
• Detachment from emotional situations
• Irritability
• Overidentifying with others distress

Question 10

Strategies to mitigate compassion fatigue

Answer 10

• Exquisite empathy (highly present, attuned, well-boundaried, heartfelt empathic engagement)
• Resilience (post traumatic growth and finding the positive in others experiences of trauma)
• Grieving strategies (departmental memorial services, journalling, attending a funeral)
• Mindfulness
• Wellness

Question 11

Moral distress

Answer 11

• Stress reaction characterised by frustration, anger, anxiety
• Occurs when someone knows what is ethically correct but is constrained in acting in accordance with their convictions

Examples:

• Clinical decisions (continued life support when not in the best interest, Full Code requests by terminally ill patients. etc.
• Communication issues (false hope, inadequate information)
• Resources (Interests of the organization override that of the patient due to limited resources or availability)
• Lack of staff time (staff time spending time on admin activities rather than patient care)
• Rules and regulations (When rules constrain a clinician in acting in their best judgment)

Question 12

Management of moral distress

Answer 12

• Forums to discuss ethically troubling situations
• Open and interactive approach to moral conflict
• Careful attention to team dynamics
• Evaluation of whether constraining factors can be changed and how one might engage with these
• Flexibility in re-conceptualizing a problem to maintain a sense of control and understand the differences in reasoning through ethical dilemmas (e.g. patient has a right to be a no code)
• Insight that compromising comes from a place of strength

Question 13

Mindfulness skills

Answer 13

1. Notice and observe sensations, thoughts, and feelings (even if unpleasant)
2. Ability to lower one’s tendency to respond reactively to emotionally charged experiences
3. Enhanced ability to react with awareness and intention rather than being on reactive autopilot
4. Focussing on the experience, not the labels or judgments we apply to them (feel the feeling, don’t label right or wrong)

Question 14

Mindful practice in medicine (four qualities)

Answer 14

1. Attentiveness
   - Observe without making judgments that distort ability to understand
2. Critical curiosity
   - Ability to open up to possibilities, rather than premature closure
3. Informed flexibility (‘beginner’s mind)
   - Adopt a fresh perspective of consider more than one perspective simultaneously rather than taking a single fixed view
4. Presence
   - Being there physically, mentally, and emotionally for patients

Question 15

Reflective writing

Answer 15

1. Diarize challenging/rewarding clinical encounters
   - Record personal thoughts and objective clinical data
2. Share and explore narratives in small group discussions or in one on one debriefing
3. Focus upon a reflective/evaluative approach to understanding one’s thoughts, thought processes, feelings, and responses

Aim - foster better self understanding and mindfulness skills

Question 16

Human rights laws relevant to Palliative Care

Answer 16

1. Right to health
2. Right to dignity (promotion of dignity of the individual patient)
3. Right not to be subjected to inhuman or degrading treatment (promotion of appropriate treatment, pain management with opioids, etc.)
4. Right to non-discrimination and equality (equal access to palliative care services to all)
5. Right to seek, receive, and impart information (access to information on palliative care, palliative treatments, etc.)
6. Rights of all children to access health care
7. Right to health in older persons

Question 17

Counter arguments to pain management and palliative care being basic human rights

Answer 17

• Individual human rights do not supersede that of the collective
• A right to palliative care cannot be separated from a general right to health - many aspects of health are inadequately addressed and palliative care must be implemented along with other public health measures (adequate food, housing, etc.)

Question 18

Practical application of a human rights perspective of palliative care:

Answer 18

1. Does the nation have pain/palliative care policies?
2. To what extent are opioids available and accessible for those receiving palliative care?
3. Does the nation report their annual opioid requirements for medical purposes to the International Control Board, and are these reports commensurate with need?
4. Are health professionals educated in management of patients with life-limiting illness and safe/appropriate use of opioids?
5. Are palliative care services integrated across all levels of healthcare?

Question 19

Confidentiality: Definition

Answer 19

• Goal is to maintain confidence/trust in the relationship between patient and provider
• Confidentiality is practices and behaviours strengthening the trust and confidence between patients and HCPs, with special attention to the use of any and all information disclosed by/obtained from patients during their care

Question 20

Benefits of respecting confidentiality

Answer 20

• Patient has more trust and confidence, more likely to adhere to treatments
• Disclosures are more likely to be honest when a patient can trust the care provider, leading to optimal patient outcomes and improved patient safety
• Respects integrity and personhood

Question 21

How to respect confidentiality

Answer 21

1. Establish and follow organization practices that govern and respect confidentiality (disclosure, record keeping, communication)
2. Be clear and explicit with patients and families about principles and practices related to confidentiality (who will have access to what information, why, what is confidential and what is not, what kind of information must be shared and when?)
3. Immediately inform patients when breaches of confidentiality occur, as well as take action to mitigate damages caused by such breaches

Question 22

Definition of ‘truth telling’

Answer 22

• Patient right to information about their illness
• Previously, care providers would shield patients from ‘harsh reality’, whereas now, disclosure is considered a legal and ethical responsibility
• Considerable variability around the globe, but cultural origin and affiliation do not accurately predict preferences, which are very individual

Question 23

News and how it affects consent/capacity

Answer 23

Frame-altering news and grief

• Patients who have just received significant news can alter decision making, even if not capacity for consent
• Over time, patients adjust to illness/loss/grief through comprehension, creative adaptation (experimentation with living under new circumstances), and finally reintegration (consolidation of a revised way of being)
• Physicians must recognise and anticipate grief, as well as how it may affect consent/decision making

Question 24

Shared decision-making

Answer 24

• Therapeutic relationship conceptualised as a partnership, where patients and providers have different but equally valuable perspectives and roles in the medical encounter
• Family engagement is also an important aspect of decision making in the palliative care context

Question 25

How to accomplish truth telling with good outcomes

Answer 25

SPIKES, such that patient autonomy is respected and the clinician can determine how much 'truth' or information a patient wants SPIKES - Setting - Perception - Invitation - Knowledge - Empathy - Strategy

Question 26

How to accomplish informed consent

Answer 26

1. Duty to obtain consent before treatment 2. Duty to ensure patient is informed a treatment's risks and benefits Approach: 1. Introduce topic 2. Engage in structured discussion 3. Document preferences 4. Review and update preferences regularly 5. Apply directives PRN

Question 27

Approach to culturally sensitive truth telling

Answer 27

- Purposefully ask patients about their preferences Options: - Explain to me - Explain to be with my family - Explain first to my family and then me - Explain to my family and let them decide what I should be told

Question 28

Definition of dignity

Answer 28

- Self respect, pride, poise, self-esteem - How people feel when they are receiving healthcare - Often conflated with autonomy - Fundamental, intrinsic worth of all humans

Question 29

Argument for dignity as it relates to assisted death

Answer 29

- Dignity is enhanced by patients exercising personal control over exact timing and circumstances of their death

Question 30

Measures of dignity

Answer 30

Patient Dignity Inventory

Question 31

Model of dignity in terminal illness

Answer 31

1. Illness-related concerns - Physical distress - Psychological distress (death anxiety, medical uncertainty) - Level of independence (including cognitive acuity and functional capacity) 2. Dignity-conserving perspectives and practices (may moderate #1 and #3) - Continuity of self - Role preservation - Legacy - Hopefulness - Autonomy/control - Acceptance - Resilience/fighting spirit - Practices - living in the moment, maintaining normalcy, seeking spiritual comfort 3. Social Dignity - Privacy boundaries - Social support - Burden to others - Aftermath concerns

Question 32

Application of dignity model: Illness related concerns

Answer 32

Symptom related distress - Baseline and ongoing assessment/treatment of symptoms - Timely, relevant information about illness, plan of care, and concerns associated with illness progression Level of independence - Baseline and ongoing assessment of cognitive function, vigilant assessment/treatment of delirium - Baseline and ongoing assessment of ADLs, referrals to OT/PT PRN, supports to maintain independence

Question 33

Application of dignity model: Dignity conserving perspectives and practices

Answer 33

- Communication with patients about facets of life not affected by disease - Attend to aspects of life and roles most important to patient - Discussion of what is still possible despite illness limitations - Redefine foals and expectations as needed - Identify and promote participation in interactions/activities most meaningful to patient - Facilitate participation in normal routines, enjoyable activities - Assistance and encouragement of connection with religious/spiritual community, if desired

Question 34

Application of dignity model: Social Dignity

Answer 34

- Ask permission to examine a patient - Ask about patient concerns, encourage settling of affairs, advance directives, will and funeral planning - Liberal policies around visitation and rooming - Treat the patient as worthy of honour, esteem, and respect

Question 35

Dignity therapy

Answer 35

- Brief psychotherapeutic intervention aimed at improving QOL for terminally ill patients and their families - Involves exploration of memories, hopes and wishes for family members, life lessons they wish to share, and legacy-related content they'd like to leave behind - Sessions are edited into a readable narrative that can be left for family and friends Evidence: - Increased sense of purpose and meaning in palliative patients - Surviving family members report it helps during grief

Question 36

Euthanasia: Definition

Answer 36

- Physician administers lethal drugs with the explicit intention to end a patient's life upon their explicit request

Question 37

Physician assisted suicide: Definition

Answer 37

- Physician provides medication for the patient to SELF-administer (often an overdose of barbiturates) to end their life

Question 38

Assisted suicide: Definition

Answer 38

- Lay person (non medical professional) provides drugs to the patient for self-administration

Question 39

Why most patients request assisted death

Answer 39

- In NL, deterioration is driving factor (previously was pain) - Social, cultural, existential issues (loss of autonomy, decreasing ability to participate in activities that make life enjoyable, loss of dignity) - Depression - Weariness of life

Question 40

WHO definition of palliative care and euthanasia

Answer 40

WHO definition of palliative care stipulates specifically that it "affirms life and . . . intends neither to hasten or postpone death" - According to this definition, palliative care providers should not participate in assisted dying

Question 41

Life sustaining treatment: Definition

Answer 41

- Any treatment that serves to prolong life without reversing the underlying medical condition Example: - CPR - Mechanical ventilation - LVAD - HD - Artificial nutrition and hydration - Antibiotics Withholding LSt - Not initiating, with expectation that the patient will due to the natural progression of disease - Act of omission Withdrawing LST - Cessation of treatment without which life is not expected to continue - Act of commission, and thus has a greater psychological burden for families and HCPs

Question 42

Ethical considerations of withholding/withdrawing life-sustaining treatment

Answer 42

1. Beneficence/non-maleficence - In the context of serious advanced illness, providing life sustaining treatment may be associated with more harm than good (e.g. prolonging suffering) and be in violation of patient's own values 2. Autonomy - Patient autonomy serves as basis for right to informed consent and right to refuse treatment - Note that patients do not necessarily have the right to access harmful/non-beneficial treatments (e.g. futile treatments) 3. Justice - Finite nature of resources - In some situations, allocation of scarce resources (ie. ICU beds) may need to be made on the basis of who will benefit most

Question 43

Futility and life sustaining treatment

Answer 43

- Some have argued that physicians should use futility to unilaterally decide to withhold/withdraw life sustaining treatment if it will not change patient's outcome Issues: - No legally accepted definition of 'futile' treatment and difficult to know what this means in practice - 'Futile' is a subjective judgment - Avoids discussions that are frequently necessary to bridge the gap between unrealistic expectations and clinician's judgment

Question 44

Withdrawal/withholding of life sustaining treatment and Non-abandonment

Answer 44

- Note that withdrawing/withholding life sustaining treatment is not abandonment - Should always include a plan to continue care and provide intensive symptom management - Avoid use of the term 'withdrawing care' as we should always continue to provide care

Question 45

Doctrine of double effect

Answer 45

- Applies to moral dilemmas where a person cannot avoid all harmful actions. Requires: 1. Nature of act must be good or morally neutral 2. Harmful effect must be foreseen but not intended 3. Harmful effect must not be a way of producing the good effect 4. Good effect must outweigh the harmful effect - Justifies the use of high dose opioids and sedatives for pain/symptom relief during withdrawal of mechanical ventilation, even though it may hasten death

Question 46

Approach to assessing decision-making capacity

Answer 46

1. Understanding of relevant information - "Can you tell me what you understand about your health problem and the treatments being offered?" 2. Appreciation of consequences - "What do you believe will happen if you undergo this treatment and how will it impact your health?" 3. Rational thinking/approach to decision - "What makes treatment X better than treatment Y? Why is not starting treatment Z better than starting treatment Z?" 4. Ability to communicate choice - "Can you tell me what your decision is?"

Question 47

Difference between decision making capacity and competence

Answer 47

- Decision making capacity exists on a spectrum (not simply absent/present) and may vary for each choice depending on level of sophistication - Competence is a legal definition that refers to GLOBAL decision making capacity (and is present/absent)

Question 48

Applying shared-decision making to treatment choices

Answer 48

- Gain an understanding of patient's values and goals "What is most important to you when you think about your health? What are you hoping for? Are there specific health states you find unacceptable (e.g. ventilator)?" - Useful to apply a recommendation for patient decisions

Question 49

Advantages/disadvantages of advance directives

Answer 49

Advantages - Promote early discussion about death and dying - Alleviate patient anxiety about future decisions - Guide decision making when capacity is lost - Reduce stress, depression, and anxiety in surviving relatives Disadvantages - Difficult for individuals to predict what they will want when seriously ill - Only a minority have an advanced directive - When an advanced directive exists, may be difficult to locate or too vague to be useful

Question 50

Process for withdrawing/withholding life sustaining treatment

Answer 50

- Make a clear treatment plan - Inform family of expected signs of dying (Cheyne-Stokes breathing, skin mottling, increased secretions) - Approximation of survival but notification that death may not be as rapidly as expected - Ensure opioids/sedatives are administered in doses necessary for comfort - Avoid unnecessary monitoring devices (blood tests, alarms, monitors, IV fluids) - Referrals to SW, chaplain, etc. as needed - Adequate time with family to say goodbye

Question 51

Outcomes of CPR

Answer 51

- Generally quite poor - Success rate of 15-18%, lower in high risk patients (Survival to discharge 6-8%) - Cancer patients ECOG 2 or worse - 2.3% survival to discharge

Question 52

Artificial nutrition and hydration in advanced disease

Answer 52

- Unlikely to prolong survival in patients with advanced disease - May increase suffering or reduce survival due to line sepsis, diarrhea, aspiration pna, hypervolemia, etc. Approach: - Reassure family patient no longer has desire to eat as mechanism for hunger is no longer present - Alleviation of thirst by stopping anticholinergics, sips PRN, good mouth care, ice chips