Faculty/Presenter Disclosure

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1 Faculty/Presenter Disclosure Faculty: Dr. Anthony Kerigan Relationships with commercial interests:* Grants/Research Support: NONE Speakers Bureau/Honoraria: NONE Consulting Fees: NONE Other: NONE

2 Meeting the Palliative Care Needs of the Frail Elderly 3 Days in Palliative Care 2016 Dr. A. T. Kerigan Associate Clinical Professor Department of Medicine, Mc Master University

3 1. What is frailty? 2. Where is the frail elderly person on their journey? 3. Setting goals of care. 4. Enhancing dignity in the frail elderly. 5. Recognizing the palliative needs of the frail elderly

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5 What is Frailty? Overall loss of resilience due to accumulated deficits Generalized slowing up of all systems Reduced ability to handle perturbations Loss of reserves (strength, cognition) that gives rise to vulnerability. More than sum of the parts, it is the failure to integrate responses in the face of stresses (Rockwood)

6 How can you measure frailty? Measuring the wearing down and slowing up Accumulation of deficits Global impression of frailty

7 Measurement of frailty global impression (Rockwood) Impression of frailty based on difficulty with everyday activities and dependence on others. Ease of application but risk of subjectivity Predictive of mortality

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10 Where are the frail elderly? Stage of Journey CSHA score Location Independent 1,2,3 Home Coping Dwindles 4,5 Home if caregiver Difficulty with independence Frailty Failure to cope Total Dependence 6 Retirement Home 7 Long term Care End of Life

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12 Patterns of functional Decline at the End of Life JAMA 2002:289: Cross-sectional data on ADL dependencies in months before death Sudden death Cancer Organ Failure (HF/COPD) Frailty (nursing home stay)

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14 Indicators of Poor Prognosis Decline in function (mobility, assistance for ADL s) Cognitive decline Swallowing problems Incontinence Skin ulcers

15 Choosing goals of care in Chronic Disease Goals of Care are global Planning for future physical and cognitive changes with patient and family Domains include not just appropriateness of interventions and treatments, but also preferences of residence, choice of substitute decision maker etc. Choosing a Pathway together Life prolongation (focus on reduction of morbidity and mortality) Maintenance of function/maximization of independence Maximizing comfort (palliative care would be the principal focus) Management of acute illness would depend on the pathway chosen

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17 Choosing Goals of Care in Progressive Chronic Disease Gillick MR; J Am Med Direct Assoc : 2 : 305 Cure of disease Prolongation of Life Maintenance or improvement in function Staying in control Relief of suffering Peaceful death Support for family Life > Function > Comfort Function > Life > Comfort Function > Comfort > Life Comfort > Function Comfort

18 When Should Goals of Care Change? Initiating discussion and changing tack RED FLAGS Acute changes in condition Hospital admission for acute medical problem Fractured hip Pneumonia

19 Assessment of Needs WHO definition of palliative care To improve quality of life of patient and family associated with life-threatening illness through the prevention and relief of suffering and the assessment and treatment of physical, psychosocial and spiritual problems. Unrecognized and unmet needs = avoidable suffering

20 What are the palliative needs of the frail elderly? Using the Square of Care. Matching the common issues in the frail elderly to the challenges of providing care to the patient and family. Physical Psychological Spiritual Social Symptom Control Nutrition Anxiety/depression Dignity Meaning of illness Spiritual resources Support network Cultural values

21 86 year old previously independent lady Never married but very involved in community with strong group of willing, but aging friends. Always an optimist with strong faith background Medical background of type 2 diabetes, hypertension, and osteoporosis with appropriate medications. Multiple arthritic joints with as required analgesia Decreasing mobility for a year with corresponding reduction in independence Very cautious attitude with no falls Becoming forgetful Decision made to go into nursing home because she was just not coping

22 86 year old previously independent lady Frail in appearance thin but not malnourished Moved slowly but independently and cautiously with cane Enjoying going to chapel but needed more direction even after initial orientation Over next 6 months, noted to be getting lost in familiar surroundings with sense of puzzlement Why am I here? Mobility becoming impaired with need of walker and then wheelchair with generally more assistance required unable to get to chapel as much

23 86 year old previously independent lady Fell one day trying to get up without assistance Pain in right hip with clinical appearance of fracture Wishes for care did not include CPR but did include measures to maintain function, including hospitalization. Transferred to hospital for open reduction and fixation of fracture. Post operative delirium with very slow reactivation.

24 86 year old previously independent lady On return to nursing home, observed to be very frail. Now requiring 1-2 person for any transfer unable to leave floor. Still able to feed herself, but requiring assistance for dressing. Short term memory and orientation noted to be more impaired. Goals of care reassessed with patient and surrogate Agreed that overall prognosis had changed significantly and that goals were primarily comfort

25 Physical Suffering Multiple symptoms accompany advancing frailty Pain with multiple etiologies Breathlessness Aspiration Skin ulcers Increasing fatigue accompanies frailty Anxiety over relief of symptoms

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27 Physical Suffering Difficulty in communication, especially in cognitively impaired (over 50% in nursing home population) Leads to underreporting and undertreatment of symptoms Often needs surrogate to communicate effectively Symptoms may manifest as changes in behavior (agitation, rigidity) in cognitively impaired

28 Psychological Suffering Fears and anxieties What does the future hold in the face of declining health? Lack of familiar faces with changing caregivers Inappropriateness of interventions and prolongation of dying Loss of dignity Dependency Lack of privacy Incontinence

29 Psychological Suffering Lack of control leading to sense of helplessness Change of mood with risk of clinical depression (how to recognize in presence of somatic changes such as weight loss and fatigue) Sense of vulnerability

30 Spiritual Suffering Key areas are; Meaning Value Relationship (Sulmasy 2006) Frail elderly person questions What is the meaning and purpose of my illness? Am I still of value to others? Can I maintain my connectedness to those things that give me strength (faith, friends)? Are you at peace if not, why not?

31 Social Suffering Time of losses (home, family, friends) Loss of sustaining relationships leading to loneliness and a disconnect from familiar surroundings. Difficulty in recreating those relationships in new environment. Sense of being burden on others Interaction with other sources of suffering (some relationships may need mending to feel at peace)

32 Recognizing and Respecting Dignity The quality or state of being worthy, honored or esteemed Webster dictionary In which ways can the dignity of the frail elderly patient be compromised? To feel who we are is being undermined can cause despair affecting body, mind and soul Chochinov

33 86 year old lady with progressive cognitive impairment Difficult year since going into nursing home Had been at home with husband, but had been getting increasingly difficult to take care of her. Developed memory problems several years ago, but found it more difficult to handle everyday activities and was getting lost in familiar surroundings. However it was the wandering at night time that proved very difficult for him to manage. She hadn t wanted to leave her own home and couldn t understand why she was where she was.

34 86 year old lady with progressive cognitive impairment Used to doing everything for herself, now has to depend on others, some who seemed like strangers. Couldn t control her bladder and sometimes her bowels needed to wait for someone to change her diaper. Each day seems like to next.

35 86 year old lady with progressive cognitive impairment Since discharge from hospital for pneumonia Can t get out of bed on her own Hard to remember when her family came in Seemed to remember someone saying that she wouldn t be going back to the hospital again. On her good days, which seemed to be less and less, she wondered why she was never allowed to take part in any discussions regarding herself.

36 Ways in which dignity can be compromised Area of Dignity Sense of worth How is this compromised? Made to feel they have no useful contribution to make Sustaining relationship Uniqueness Isolation; Warehousing Treated as a number or a disease Making personal decisions Being ignored; having others assume one is incapable

37 Ways in which dignity can be compromised Area of Dignity Emotions and feelings How this is compromised? Not accepting the validity of feelings Respect in meeting basic needs Need for meaning Any action which depersonalizes the person Anything which takes away hope Self reliance Made to feel a burden

38 Ways in which dignity can be compromised Area of Dignity How is this compromised? Personhood Not acknowledging the many facets of the person in the frail elderly person Diminishing the spirituality of the person Controlling behaviour in a demeaning way Respectful Communication Use of disrespectful language; talking over their head as though they were not there