Dying and Bereavement Jennifer Thake MA MA PhD RP CCC jthake@terracewellness

1. Dying and BereavementJennifer Thake MA MA PhD RP CCCjthake@terracewellness.com

2. Tonight’s talk • Brief look at reasons for death across the lifespan • Where might we spend our palliative time • The person who is dying • The person who is preparing to grieve • The person who is grieving

3. Death across the lifespan • Miscarriage & Still-birth • Infant • Child • Teen/young adult • Middle age • Older adults

4. Death across the lifespan: Miscarriage & Still birth • Changes in the way that our society approaches miscarriage & still-births • Obvious in social media • Recognition of a life • Practice of remembrance

5. Remembrance • “Now I lay me down to sleep” • Remembrance photography to parents suffering the loss of a baby • Important step in the family’s healing process by honoring the child’s legacy

6. Death across the lifespan: Infants <1st year of life: sudden infant death syndrome (SIDS) • 3 babies die each week in Canada • Causes not entirely known • more likely in low socio-economic status, with mother who smoked, baby sleeps on stomach or side • Enormous psychological toll on parents (confusion, self-blame, suspicion from others)

7. SIDS Intervention • Sleeping position has now been reliably related to SIDS • Health Canada, Canadian Institute of Child Health, Back to Sleep campaign • 50% reduction in SIDS • 40% to now 70% of parents putting infants on back

8. Death Across the Lifespan: Children • After 1st year (under 15 yrs) • External causes: motor vehicle accidents, accidental drowning, poisoning, injuries, falls (accounts for 42% of all deaths in this group) • Parent: blaming themselves, legal complications

9. Death Across the Lifespan: Teens/Young Adults • Although the death rate in adolescents is low, the major cause of death is uunintentional injury, mainly involving automobiles • Followed by suicide, cancer, and homicide • After death of a child, considered most tragic: Waste of life/robbed of the chance to mature and develop

10. Death Across the Lifespan: Middle Age • “Premature death”: before projected 82 years • 100 yrs. ago – infectious diseases (tuberculosis, influenza, and pneumonia) • Decreased due to public health & preventative medical technologies • Now: chronic illness (cancer, heart disease, stroke) • Know what we will die from 5, 10 or more years beforehand

11. The part we play • “Infectious diseases are no longer killing us…we are now killing ourselves.” • Lifestyle/behaviour has a significant effects on chronic diseases • Examples: Smoking, sedentary lifestyle, substance abuse

12. How influential are lifestyle factors? Belloc & Breslow (1972) Participants: 7000 adults; ranging from 20 to 75 yrs 2 sets of questions • Health in the past 12 months • 7 aspects of current lifestyle • At each age, health is better as lifestyle improved • Health of those older adults who followed all 7 practices was about the same as those 30 yrs younger who followed few or none

13. 7 Aspects of Lifestyle • ___ sleeping 7-8 hours/day • ___ eating breakfast almost everyday • ___ rarely eat between meals • ___ near appropriate weight for height • ___ never smoke cigarettes • ___ rarely/moderately drink alcohol • ___ regularly get vigorous physical exercise

14. How influential are lifestyle factors? Breslow (1983) – longitudinal • 9.5 years later • In each age group, dying decreased as health behaviours increased • Impact greater for older than younger, especially for males Conclusion: behaviour matters

15. Death Across the Lifespan: Middle Age • Cancer (malignant tumours) and heart disease were the two leading causes of death in 2016 (Stats Can) • Contributors of heart disease • Behavioural factors (e.g., physical inactivity, smoking, substance use) • Family history & genetics • Environmental factors (e.g., averse childhood events – neglect, abuse, violence – chronic stress)

16. Death Across the Lifespan: Middle age • Fear of death most prominent • Why fearful? • Clear bodily signs (physical appearance, sexual prowess, athletic ability) • Begin to develop the health problem that may ultimately kill them • Seeing the death of others • Meaninglessness – youthful ambitions never realized

17. Death Across the Lifespan: Middle Age Having preferences • Quick and relatively painless; • Avoiding deterioration; • kinder to family members Downfalls: • No exit prep; • Financial impact on family; • Estrangement with no reconciliation

18. Death Across the Lifespan: Old Age • Dying not easy at any point in the lifespan; however, it seems to become less difficult as people progress from middle age to old age • Main causes: • Degenerative diseases (cancer, stroke, heart failure) • General physical decline which predisposes one to infectious disease and organ failure • Terminal illness is shorter (more biological competitors)

19. Death Across the Lifespan: Old Age More prepared: • thought about it • made initial preparations • observed the death of close others • have come to terms with issues surrounding death like loss of appearance or non-fulfillment of goals • often express readiness • show withdrawal due to lower energy (grandma – “no xmas decorations”)

20. Döstädning (the death purge) Swedish cultural tradition • "It's what people are doing before somebody passes away so that the relatives don't get left with the big chore of sorting out their personal things.“ • Swedes start doing when they reach middle age — sometimes even sooner • It involves giving unwanted items to family and friends

21. Living Longer: Dying in your 70s vs. 90s? • Psychological distress predicts declines in health and even increased mortality in older age • For men, much of the association between distress and mortality can be accounted for by socio-demographic differences (chronic disease, lower education, widowhood) • For women, the link between distress and risk of death persists even after accounting for these factors

22. Women Live 4 Years Longer. Why? • Women live an average of 4 years longer than men (women 84, men 80) • Women biologically more fit (male > female fetuses, but male death rate higher at all ages; genetic, hormonal?) • Men engage in more risky behaviours ((jobs, substance use, cope with stress thru fight (aggression) or flight (social withdrawal, drugs, alcohol)) • Social support more protective for women (stress response)

23. Advancing illness • Brings the need for continued treatments with debilitating and unpleasant side effects • Question about continuing treatments • Refusal of treatment may indicate depression and hopelessness or it may be a thoughtful choice

24. Palliative Care • Once deemed terminal, then palliative care • Main goals of palliative care: • manage pain and other symptoms; • providing social, psychological, cultural, emotional, spiritual and practical support; • supporting caregivers; and • providing support for bereavement (Health Canada, 2009) • Often covered by provincial health care plans

25. Palliative Care • Relatively successful: Improved quality of life, reduced anxiety/depression, high survival rates vs. solely medical care • Temel et al (2010) • Newly diagnosed metastatic lung cancer • 2 conditions (over 12 wks): • Standard oncologic care (e.g., chemotherapy) • Oncologic care + palliative care (met with a palliative care nurse or doctor on a monthly basis)

26. Palliative Care Results • Those who received earlier palliative care were less likely to experience depression and anxiety during the 12 weeks • Higher survival rates were shown in the palliative care group, indicating that this type of care can add weeks or months to life

27. Palliative Care in Hospital or Nursing Home • Most people in developed nations die in hospitals or nursing homes (NCHS) • Hospitals – expertise, technical equipment, and efficient caregiving, but usually not “psychologically comfortable” • Death in the institutional setting can be depersonalized and fragmented • unfamiliar environment & people, • understaffed, • under-medicated, • low support, • low control

28. Patients’ View of Hospital Staff • Very significant, great dependence (e.g., turning over in bed, pain management) • Only people they see on a regular basis • Patients’ only source of realistic information • Know the patients’ true feelings • Abandoned by doctor (?)

29. Alternatives: Hospice Care • Dying should be in a place of choice • Maximize their potential – perform to the limits of their physical, cognitive and social potential • Address all family members’ needs – may involve resolving interpersonal discord, and feelings of anxiety, guilt, and depression • Follow-up care – available for family members to receive help through and after the period of bereavement

30. Hospice Care • Currently 62% of annual deaths in Canada will require hospice services • Comfort is stressed: Personalize living areas, wear their own clothes, determine their own activities • Staff are specially trained to interact with patients in a warm, caring way • Therapist are available; volunteers that provide support

31. Hospice Care Evaluation: show palliative care on par with hospitals, although more emotionally satisfying care for both patients and their families (Casarett, 2005)

32. The Diane Morrison Hospice • Partnership between The Ottawa Mission and Ottawa Inner City Health • Palliative care to 14 terminally ill people who are homeless or street involved • The intent of the Hospice program is to provide a safe home where people can live well for their remaining days and die pain-free and with dignity

33. Alternatives: Home Care • Whether it is a reasonable alternative depends on condition and quality of care available at home • Similar benefits to hospice • Can receive good care if they have regular contact with medical team, aides and trained family (AMA) • Many do not have the option: Lack family members who can provide care or financial resources

34. Alternatives: Home Care Considerations • Very stressful for the family: • Family must be adequately trained (the “only ones”); • Full-time care; • Constant contact with someone who is dying; and • Ambivalent about patient death • Caregivers cope best if: caregiver security (financial), good patient relationship, feel appreciated • Despite stressors, families often prefer home to hospital care

35. Right to Die • Right to die movement: Death should be a personal choice with personal control • Medical assistance in dying (MAID)  - June 2016 (ban was deemed unconstitutional)

36. Right to Die • Are their psychosocial issues underlying the desire to end one’s life early? • Possibility that MAID may result from unmet needs (e.g., comprehensive hospice & quality care) rather than a genuine choice

37. Right to Die Research: • Patients main reason for choosing an early death was: • decreased ability to participate in pleasurable activities, • loss of autonomy, and • loss of dignity (Niemeyer; Chochinov) • More likely among divorced or never married (Niemeyer)

38. Right to Die: Continued discussion • Even if assessed and approved for MAID must give consent a second time right before undergoing the life-ending procedure • Leading some to consider ending their lives earlier due to fear of losing capacity to consent • Provision of “advanced consent” – specifications of exactly what would be considered intolerable (e.g., inability to recognize family)

39. Dying with Dignity: More Passive Measure Living Wills • Developed after diagnosis with a terminal illness • “Extraordinary life-sustaining procedures” not be used • Patients’ preferences, rather than the surrogates, are respected • Not completely successful (e.g., not indicated on charts) • Complex due to big changes in health care (e.g., renal dialysis, nutritional support & hydration, mechanical ventilation, organ transplants)

40. BREAK

41. The dying person

42. Terminal Illness Research in ON with advanced lung or gastro cancer – expected survival < 2 years Issues on their mind: • Issues surrounding control over dying, • Valuing the present moment, and • Creating a living legacy

43. What would you describe as being elements of a “good death”?

44. Good Death • Defined as: “one that is free from avoidable suffering for patients, families and caregivers in general accordance with the patients’ and families’ wishes”

45. Good Death • Pain and symptom management/comfort • Clear decision making • Preparation for death • Sense of completion • Having had contributed to others • Affirmation of the whole person • Not being a burden to others • Having a sense of control • Psychological comfort • Spiritual comfort

46. Terminal Illness: Self concept changes • Continually adjust expectations and activities • Threatening to the self-concept & dignity • Becomes difficult to maintain control of biological functioning (e.g., incontinence; drool; distorted facial expressions.) • Cognitive decline – mental regression, inability to concentrate (progressive nature of disease or painkillers, etc.) • Loss of physical and mental function can threaten social interactions

47. Terminal Illness: Social factors • Often want and need social contact • Reasons for withdrawal: • Fears that obvious mental and physical deterioration will upset others; • Fear of becoming an burden; • Bitterness over death and resentment of the living; • Disengagement as part of a normal grieving process

48. Terminal Illness: Communication Breakdown • When prognosis is favourable, communication is usually open • As the prognosis worsens, communication can breakdown • Makes sense: Death is a taboo topic • Often believe the “proper thing” is not to bring it up • Family may be “cheerfully optimistic” but actually confused and frightened • All believing that others do not want to talk about it

49. Communicating your Wishes Let loved ones know (in advance): • What you expect of your family/friends during terminal times (living situation, visit frequency, holidays, etc.) • All the practicalities for post-death – location and status of all important documents etc. • E.g., story about having a 2 files on computer

50. Communicating your Wishes Let loved ones know (in advance): • Funeral, body, ceremony? • Natural burial; cremation; celebration, etc. • What do you want said, who do you want to say it • What legacy is important to you (e.g., good china) • How you want to be remembered (images, stories, sayings) • About you, if possible – dignity therapy