(final) caregiving and terminal illness

Informal caregiving

The provision of phyical/emotional care to a family member or friend at home

How many are caregiving for family or friend w long-term health condition?

¼ Canadians

Most caregivers in Canada…

Spend <10 hrs/week (minority spend >20)

Receive some kind of assistance (from work, friend, family, gov)

Women

Who’s being cared for?

50% parents or parents-in-law

Spouse/partner

Close friend, neighbour, close friend

Extended family member

Grandparent

Sick/disabled child

Health costs of caregivers

Depression and physical health problems

Abnormalities in endocrine (cortisol) and immune system function

Spousal caregiver: Premature death

Recent studies: May live longer on avg (ex. More attentive to their health, or resilience)

Why is caregiving is a chronic stressor?

Not enough time, overwhelmed

Unhealthy behavior cuz lack of time (food, less sleep)

Poor stress management and prevention

Poor support

BELIEVE that stress has a negative impact on health

Most imp factor of chronic stress in caregivers

Economic burden! (then missed days and reduced hours of work)

Benefits of caregiving

Majority (80%) see it as a positive experience

Providing the best care possible.

Staying connected or becoming closer.

Rewarding

Sense of meaning and purpose.

Passing on a tradition of care in family.

Learning new skills

Future of Caregiving in Canada

MUCH more older adults using home care support

Fewer close family members who will provide unpaid care

Unpaid caregivers (family) need to increase efforts

Gov doesn’t address → more use of private nursing homes (asso w earlier death!)

Primary concern to patients after diagnosed w a seriously life-threatening illness

Mortality

High-mortility disease

Does NOT mean they will die in a few weeks or months (uncertain → stress)

Shift between avoidance-coping and problem-focused coping

Terminal diagnosis

Only weeks/months to live

Denial in terminal illness

Common, yet challenging to person and their family.

Can be extreme and persistent

More common early on. Acceptance is more common closer to death

How might such denial be difficult for others (i.e., family and friends of the person dying?

Challenging

Others have to play along

Less adherence

Optimism & hope

Often optimistic at first, then see plans for future more tentatively

Hope to be magically cured → aggressive care, even if it has no effect

Caregiver providers should engage in conversation about their hope

3 reappraisals to promote adaptation in terminal illness

The success depends on the level of social support

1. Finding meaning:

Reappraisal → greater gratitude of daily life

Rethinking priorities and attitudes

2. Gaining a sense of control: Acquire knowledge and engage in behaviors to reduce risk (helps combat hopelessness)

3. Restoring self-esteem (Downward social comparison)

How does relapse of medical conditions impact on patients and families?

See it as worse than before

More hopelessness, and worry

Heart disease: Prevalence

#1 killer in US, #2 killer in Canada

Risk increases with age, esp after 55

Higher in men, and minorities

Heart disease: Psychosocial factors that increase/decrease risk

Increase risk: Chronic negative emotions (stress, anxiety, depression), Isolation, Job stress

Decrease risk: Optimism, good well-being, Undoing hypothesis (positive emotions can reverse effects of stress)

Family, esp spouse’s beliefs abt patient’s capabilities after heart disease can lead to…

Good or bad effect —- Can encourage recovery or promote cardiac invalidism (physical disability is worse than expected)

Heart disease: Rehab & intervention

Lifestyle changes (high failure), medication, stress management, diet, exercise → reduce mortality, and risk of heart problems. Better adjustment & recovery

Most effective when

• Men > women

• Start immediately than later

Psych practices (CBT) → lower depression, unclear effects on health

Emotional impact (and theories) of heart disease

High anxiety & depression (decline over time)

• If not, then higher risk of future cardiac events

Belief at start that they’ll recover → ^ long-term survival

Family difficulties get worse

Cardiac invalidism: Patients becoming more dependent and helpless

Undoing hypothesis

Positive emotions reverse/reduce the negative physiological effects of stress on cardiovascular health

Broaden-and-build theory: Positive emotions broaden attention, cognition, and action, & help build coping resources over time

Stroke: Psyc causes and outcomes

Causes: Depression and stress

Outcome: Depression, emotional lability (inappropriate emotional expression ex. Laughing, crying)

Social outcome: Role changes, drop in social activity. Less than half patients can return to work

Who’s at risk of stroke

Lifestyle & bio (Fam history, heart disease, high BP, drugs, Depression and stress)

Men > women before, now is equal

Cancer prevalence

Breast > Prostate > lung…

75% of cancers are in ppl > 55 y/o

At risk: Older, men, Indigenous

Psyc and social impact of cancer

Fear of recurrence (most severe stressor than early diagnosis), Fatigue, anticipatory nausea, learned food aversion

Blame themselves → more distress and lower QoL

Socially withdraw cuz awkward, embarrassed

Psychosocial Interventions can improve QoL (but may not extend survival)

HIV prevalence

Less mortality, stable rate of infection

Men and minority groups (esp Indigenous)

Antiretroviral Therapy (ART) and 3 ways to suppress HIV reproduction

1. Reduce viral load to undetectable levels in blood tests.

2. Eliminates the risk of transmitting the virus to an uninfected partner.

3. Reduces the opportunistic infections (like tuberculosis)

Psyc/social impact of HIV

Stigma and fear → discrimination, secrecy, delay in seeking help

Positive reappraisal → better emotional health

Negative emotion → faster disease progression

Psychosocial Interventions for HIV

Affect adherence: Emotional adaptation, social support, self-efficacy

Stress management reduce anxiety and depression, enhance immune function, lower viral loads

What’s death? Bio and psyc definition

Bio: Irreversible loss of circulation and respiration or irreversible loss of brain function

Psyc: Possibility of the nonexistence

Field of study of aging is called

Gerontology

Specialized health care for older adults is called

Geriatric care

Death is premature if before age

70 or 75

How is the dying process variable?

The course and length of illness cary greatly from one disease to another

Primary Aging

Refers to the unavoidable biological changes, such as molecular and cellular shifts, that are a fundamental part of the aging puzzle.

Key mechanisms of primary aging (2)

Cellular Senescence: Cells permanently stop dividing (max 50 times) due to stress, damage. inflammation, and the accumulation of toxic by-products.

Telomere Shortening: Telomeres (protective caps on the ends of chromosomes) shorten with each cell division (enzyme telomerase lengthen telomeres)

Secondary aging

Changes result from environmental and lifestyle factors (ex. smoking, inactivity, poor diet, chronic stress, disease), which are often controllable. (stress can accelerate telomere shortening)

Psychological impact on aging

Some ppl fear the decline and loss of independence. Some have positivity and acceptance

Exp of physical and mental illness shape age-related self-concept

Less than half of Canadians age >65 report their health as “very good/excellent”

Palliative care

Focus on pain management to improve QoL for chronic-terminal illness (standard form of care in nursing homes)

More biopsychosocial approach

Expensive than bio approach

Can be provided alongside curative care (e.g. chemo)

Living Will or a "Do Not Resuscitate" (DNR)

Allow individuals to specify their wishes for end-of-life medical treatment if they become unable to communicate them

Hospice palliative care

Relief of suffering (patient and caregivers)

Provided only when curative care ends

Focus on psycho and social support

May extend after death to help the family members

Key difference between palliative care and hospice palliative care

PC: Provided alongside curative care

HPC: Provided only when he curative care ends

Hospice Care

May occur in palliative care units of hospitals, freestanding hospices, or in homes (home-based hospice services)

<30% Canadians received/had access

Home care

Personal control and availability of support (can be problematic for family members

Most prefer to die at home in the presence of loved ones

Nearly 60% of Canadians deaths occur in hospitals (this number is decreasing tho)

Research on standard care vs palliative care, and effects on QoL and mood

Early Palliative care: Much less depression and mood disorder, anxiety

Survive longer

Palliative care has been associated w

Lower pain

Improved QoL

Lower anxiety and depression

Reduce symptoms

Survive longer

Lower health care costs

Futile care

Continued provision of care or treatment to a patient when there’s no reasonable hope of a cure or benefit

Ethical dilemmas of futile care (3)

There’s always a degree of uncertainty

Who has the right to decide to use this care? Physician, patient, or family member?

What happens when there’s a disagreement?

Goals in End-of-Life Care (6)

Informed consent: offer knowledge, encourage involvement

Safe conduct: act as helpful guides for patient

Significant survival: help patient make most of time

Anticipatory grief: aid patient and family with sense of loss (might not be beneficial for spousal grief – “what will he do after I die?”). Not sure if it’s that beneficial anymore in today’s research (grief → earlier death)

Timely and ‘appropriate death’: Patient should be allowed to die when and how they want, as much as possible.

Help the patient achieve death w dignity

How is End-of-Life care often more difficult for medical staff and formal care providers?

Emotionally draining

Unpleasant custodial work

Not curative care

Less interesting/stimulating

May increase burnout, but some studies say less burned out than other nurses

Medically Assisted Dying

A physician knowingly and intentionally provides a person with the knowledge or means (or both) required to end their life, including counselling about lethal doses of drugs, prescribing such lethal doses of drugs, or supplying the drugs

Legal in some form in Canada

Vs euthanasia – painlessly ending a person’s life to relieve their suffering

Medical assistance in dying’ (MAID): Bill C-14 was passed in 2016, permitted this for what criteria for adults?

Mentally competent adults

Serious and incurable illness or disability

Advanced state of irreversible decline

Face a “reasonably foreseeable” death

For Bill C-14, what’s the process to approve MAID?

Write a request in the presence of 2 witnesses

Minimum 10-day “reflection period” in most cases

Must be making decision voluntarily

Give opportunity to withdraw

Bill C-7 was passed in 2021, what criteria was removed to expand access to MAID?

“Death be “reasonably foreseeable”

For Bill C-7, what’s the process to approve MAID?

2 safeguards for non-foreseeable deaths

90-day waiting period and consultation w additional expert

Expands access to those w sole condition is mental illness (this criteria is delayed to March 2027)

Prevalence of MAID in Canada

4% death in Canada

Increasing (which is slowing down now)

Most common: Cancer, neurological disorders, respiratory diseases

4% were non-foreseeable death (neurological, most common for this group)

Main Reasons for choosing death (Toronto and Oregon)

Can’t do meaningful/enjoyable activities anymore

Loss of autonomy

Loss of dignity

What are some of the common concerns associated with medically assisted dying?

Incompatibility with care provider’s ethics

Errors in diagnoses or prognoses

Coercion by family members or physicians

Suicide contagion

Impact on the bereaved (Grief might be better for family members – expected death is better)

Disproportionate impacts on vulnerable groups (lower SES more likely to get MAID)

Expanding MAiD to mental illness

There’s option for doing it at home

How vulnerable popul is steered towards using MAID (might not actually use it)

Elderly, women, racial/ethnic minorities, low SES and edu, uninsured

Physically disabled or chronically ill

With psychiatric illness including depression

The only group w a heightened risk: Ppl w AIDS!

SES and MAID

MAID is UNLIKELY to be driven by social/economic vulnerability

Low SES apply more for MAID

High SES receive more for MAID

Who’s most likely to receive MAID?

High SES

Lower support needs

High involvement in palliative care

Why do ppl wish for MAID due to suffering from a mental illness

Autonomy and self-determination

Ending the suffering

Recognition

A dignified end-of-life

Stages of dying

Denial: Lack of belief or acceptance

Anger: Expressed towards those who are closest

Bargaining: Negotiation for more time or longer life

Depression: Despair over the recognition of mortality

Acceptance: Mortality and future embraced

What’s the principal coping mechanism ppl use during the terminal phase

Denial

Experience of death in children vs young adults

Children: Before age 8, don’t fully know what death is

Young adults: Untimely, senseless, unjust → anger and distress

Indigenous End-of-Life perspective

“Completion of life circle”: See death as positive and necessary part of life

Community gathering, traditional healers and practices (contradict to typical Canadian hospital)

Death Acceptance

A ‘giving in’ and realizing of the inevitability of death

Often neither happy nor sad—sometimes void of feelings.

May involve “letting go” and detaching oneself from events and things we used to value.

Coping mechanisms in hospice patients (near death)

Denial and acceptance, independently and interdependently alternated

“Middle knowledge” (Weisman)

Death denial often involves 2 contradicting views of death at the same time:

1. Denying death and minimizing prognosis (prevent from overwhelm)

2. Making plans for one’s death

→ slowly assimilate the reality of dying.

How does psych/goals become more imp as closer to death

Making meaning at the end of life.

Examples:

Continuity of Relationships

Reduction of Conflicts

Wish/Goal Fulfillment

Memories, Reminiscence

Symbolic Immortality

Generativity

Spirituality/Religiosity

What is Personal Meaning?

Having sense of purpose, direction, order, and a reason for existence

Life always has meaning, even the most miserable situations.

Autobiographical Activities: Reminiscence

Recollecting memories of one’s self in the past

Improve depression and loneliness after sharing memories, life events, family history and personal accomplishments

Autobiographical Activities: Life review

Return of memories and past conflicts at end of life; spontaneous or structured reconciliation of one’s life

Cross-Generational Methods

Symbolic Immortality: A sense of continuity or immortality obtained through symbolic means

Generativity: Establishing and guiding the next generation

Religiosity

Endorsing or subscribing to an organized system of beliefs, practices, rituals, and symbols.

Most are intrinsic (meaning-based, internal motivation)

Spirituality

Understanding your own answers to ultimate questions about life, about meaning, and about relationship to the universe and life

What can help dying individuals reach death acceptance?

Meaning and purpose

Death acceptance is related to well-being and QoL, esp in later life

Perceived control and acceptance is imp during the terminal phase

Death anxiety

Worry, dread, and terror over the prospect and/or process of dying

Fear of death in old vs young adults

Older adults:

• Think more abt death

• Lower fear of death

  • Higher fear of dying process

Younger adults:

• Higher fear of death

  • Lower fear of dying process

Attitudes of ppl facing death

Breast cancer patient and Death-row inmates are more positive and less negative

3 stressors when facing terminal illness

Physical effects: Coping w pain, weakness, and loss of body control

Altered lifestyle: Restrictions, increase dependence

Realizing of ending life

Bereavement vs grief vs mourning

Bereavement: Period of suffering after losing a loved one.

Grief: Intense sadness and emotional pain from losing a loved one.

Mourning: Public displays of grief

4 common patterns of adjustment after death of spouse

Resilience is most common

Recovery

Chronic grief

Delayed grief

Research findings on coping w loss

Widowed men adjust worse then widowed women

Loss of child is asso w worse and longer-lasting distress than other kinds of loss

Coping is worse when death is sudden

A Survivor’s Acceptance

Accepting the reality that our loved one is gone

Recognizing that it’s a new permanent reality, and learn to live with it

Find a purpose and meaning in life to “live again”

DOESN’T mean they’re okay with what has happened

Integrated grief

Prolonged grief in which loss-related thoughts, feelings, behaviors are integrated into a person’s daily life, but without dominating it.

Seen often is survivor’s acceptance

Complicated grief and symptoms (3)

When the grieving process does not progress as expected

• Prolonged acute grief with intense yearning and sorrow.

• Frequent troubling thoughts about the death

• Excessive avoidance of reminders of the loss

Prolonged Grief Disorder

Distinct from PTSD and depression

Persistent grief response following death of loved one; yearning/longing for the deceased and/or preoccupation with the deceased for at least 12 months following the loss.

Accompanied by distress and emotional/social challenges

Criticism of Prolonged Grief Disorder

Pathologized when grief is a normal response, forcing ppl to take pharmaceutical intervention

When is it “not as expected” or “too long”?

How is “grief” seen?

Flexible and non-linear

Personal and unique

Wide range of emotions (ex. Sorrow, depression, anger, guilt, lonely, hopeless, etc.)

Perspectives on aging

Aging doesn’t cause illness

But it’s a predominant risk factor for most diseases that greatly compromise health and reduce life expectancy

Health-survival paradox

Women live longer than men, but they have higher rates of disability and poorer health (chronic illness)

Pattern continues into old age, cross cultures

Possible reasons why women live longer than men

Women have more social support

Men engage more in risky behavior (drinking, smoking)

Estrogen is protective against cardiovascular disease

X chromosome has immune enhancing effect – could be explanation of chronic illness

Well-being paradox

Older adults report less stress, greater happiness, and higher life satisfaction, even they face declines

They learned to cope w stress better

BUT! Only observed in countries with higher GDP

Frailty Syndrome and causes

Become physically unstable when faced illness/injury

More likely to fall, have mobility issues, and hospitalize from minor illnesses/injuries.

Causes: Chronic inflammation and impaired immune functioning

Sarcopenia and causes

Progressive and debilitating loss of muscle mass, strength, and function that occurs with aging.

Causes: chronic inflammation and other physiological changes

3 Common cognitive decline when aging

Poorer memory, processing speed, and visuospatial abilities

Fluid abilities

Solving new problems and real-time reasoning, tend to decline with age.