living with ageing and dying · 2018-09-25 · living with ageing and dying dr angel lee medical...
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(A Community Service of St. Andrew’s Mission Hospital)
(A Community Service of St. Andrew’s Mission Hospital)
Living with
AGEING and DYINGDr Angel Lee
Medical Director & Director of Palliative Care Chairman
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(A Community Service of St. Andrew’s Mission Hospital)
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(A Community Service of St. Andrew’s Mission Hospital)
Lee Kuan Yew
Singapore’s 1st Prime Minister(1965 – 1990)
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(A Community Service of St. Andrew’s Mission Hospital)
Will you be surprised if he died in the next 12 months?
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(A Community Service of St. Andrew’s Mission Hospital)
11 months later
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(A Community Service of St. Andrew’s Mission Hospital)
Objectives
1. Ageing and implication on the way we die
2. Challenge of EOL care in the elderly
3. What we can do to improve EOL care in the elderly
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(A Community Service of St. Andrew’s Mission Hospital)
“It is a protracted affair.”
“Death keeps taking little bits of me…”
In How we Die
By Sherwin Noland
There is uncertainty. Oishi and Murtagh
Pall Med 2014; 28(9) 1081-1098
The “aware” death.
In On Death and DyingElizabeth Kubler-Ross
We die in different ‘ways’
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(A Community Service of St. Andrew’s Mission Hospital)
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(A Community Service of St. Andrew’s Mission Hospital)
https://www.singstat.gov.sg/-/media/files/publications/population/lifetable16-17.pdf
Life expectancy at
65 years old
22.5 yrs
20.9 yrs
19.1 yrs
More likely than not, we will die older …
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(A Community Service of St. Andrew’s Mission Hospital)
HALE increased more slowly than did life expectancy over the past 20 years, with each 1-year increase in life expectancy at birth associated with a 10-month increase in HALE.
Compared with substantial progress inreduction of mortality over the past two decades, relatively little progress has been made in reduction of the overalleffect of non-fatal disease and injury on population health.
Increased disability and frailty before death
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(A Community Service of St. Andrew’s Mission Hospital)
WHO – Global Health Observatory
2000 2012
… the price of increased longevity.
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(A Community Service of St. Andrew’s Mission Hospital)
CareShield Life gender-differentiated premium
3 years 8 years
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(A Community Service of St. Andrew’s Mission Hospital)
http://www.who.int/gho/mortality_burden_disease/causes_death/top_10/en/
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(A Community Service of St. Andrew’s Mission Hospital)
150% ↑
30% ↑
70% ↑
From 2007 to 2020
The Frailty Challenge
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(A Community Service of St. Andrew’s Mission Hospital)
# We will die older and associated with longer and longer periods of pre-death chronic illness and frailty
Ageing & Dying
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(A Community Service of St. Andrew’s Mission Hospital)
Frailty
• Most problematic expression of population ageing
• It is a state of vulnerability with poor recovery following stress
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(A Community Service of St. Andrew’s Mission Hospital)
FrailtyFried Phenotypic Model
Fried LP, Tangen CM, Walston J, Newman AB, Hirsch C, Gottdiener J, Seeman T, Tracy R, Kop WJ, Burke G, McBurnie MA. Frailty in older adults: evidence for a phenotype. J Gerontol A Biol Sci Med Sci. 2001;56(3):M146–56.
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(A Community Service of St. Andrew’s Mission Hospital)
FRAILTY
In developed countries, it is now the leading cause of death in community-dwelling elderly.
Gill TM, Gahbauer EA, Han L, Allore HG. Trajectories of disability in the last year of life. N Engl J Med. 2010;362(13):1173–
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(A Community Service of St. Andrew’s Mission Hospital)
CANCER30% of deaths
Deaths preceded by hospice careIntegrated Care between services
Rolls Royce standard
FRAILTYMore than a third and increasing Poor ownership of careFragmented care with multiple transitions Unrecognised care needs
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(A Community Service of St. Andrew’s Mission Hospital)
Disease Apartheid
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(A Community Service of St. Andrew’s Mission Hospital)
Definition
apartheid in British. (əˈpɑːthaɪt , -heɪt) (in South Africa) the official government policy of racial segregation; officially renounced in 1992.
Word origin of 'apartheid' C20: Afrikaans, from apart apart + -heid -hood.
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(A Community Service of St. Andrew’s Mission Hospital)
Access to specialized palliative care service
Having a cancer diagnosis is the primary determinant.
• In-patient hospice (Singapore) 75-85% cancer
• Hospital-Based Palliative Care Services 70-85%
SACH Figures: 67% cancer, 33% non-cancer
Cancer accounts for only 30% of deaths
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(A Community Service of St. Andrew’s Mission Hospital)
Why the discrimination?
• Different disease trajectory
• Less predictable
• More protracted
• Funding challenges
• Multiple co-morbidity
• Mental capacity lost in many
• Lack of understanding (predominantly amongst HCWs)
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(A Community Service of St. Andrew’s Mission Hospital)
• Prioritization of Institutional Processes over needs of patients
• Failure of support across settings
• Not being “heard”
• Loss of dignity
Associated with CrisesPoor anticipatory care
“Important care decisions are transferred at the same time as patients are transferred”
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(A Community Service of St. Andrew’s Mission Hospital)
# Many systems worldwide handle the needs of the dying elderly poorly
Ageing & Dying
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(A Community Service of St. Andrew’s Mission Hospital)
Doing nothing is not an option
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(A Community Service of St. Andrew’s Mission Hospital)
Case Study – Mr S
23/6/18
Asked to see
this patient
88 years old. Parkinson’s ds. Bed-bound.
Chest Infection. On iv antibiotics.
• Hypotensive
• Constipation
• Drooling and secretions
• Stiffness (and pain)
“Palliative Care?”
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(A Community Service of St. Andrew’s Mission Hospital)
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(A Community Service of St. Andrew’s Mission Hospital)
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(A Community Service of St. Andrew’s Mission Hospital)
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(A Community Service of St. Andrew’s Mission Hospital)
OncologyRenalOther
0.7530.6890.671
Still most accurate for cancer patients.
Fairly good for the rest.
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(A Community Service of St. Andrew’s Mission Hospital)
EXAMPLE: Gold Standard Framework
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(A Community Service of St. Andrew’s Mission Hospital)
General Indicators of Decline
Decreasing activityIncreasing dependence
Weight loss 10% in 6 monthsAlbumin < 25g/L
Frequent crisis or unplanned admissions
Co-morbidity / Adv dsComplex Symptom burdenChoice of no active Rx
Sentinel event e.g. fallAdmission to NH
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(A Community Service of St. Andrew’s Mission Hospital)
(A Community Service of St. Andrew’s Mission Hospital)
Swallowing and speech difficulty
Respiratory difficulty Treatment difficulty Complex Symptoms
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(A Community Service of St. Andrew’s Mission Hospital)
Recurrent infectionSevere pressure sores
PVS or minimally conscious or dense paralysisNo improvement after 3 months
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(A Community Service of St. Andrew’s Mission Hospital)
Natural History of Parkinson’s Disease
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(A Community Service of St. Andrew’s Mission Hospital)
Phases of Illness
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(A Community Service of St. Andrew’s Mission Hospital)
Case Study – Mr S
Diagnosed with
Parkinson’s
Disease
Became
chair-bound
Bed-bound
PEG inserted
1995 20162014 2018 23/6/18
“Dying”
Referred to
Palliative Care
Recurrent
chest infections
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(A Community Service of St. Andrew’s Mission Hospital)
Gold Standard Framework
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(A Community Service of St. Andrew’s Mission Hospital)
Identifying care needs
Symptom Control
• Constipation
• Drooling and secretions
• Stiffness (and pain)• Readjusted Parkinson’s meds
• Physiotherapy
• Postural symptoms• Fludrocortisone and
midodrine
For a while, he improved …
• Able to sit out of bed!!
• Participated in therapy!!
• Looked happy after a hair cut and grooming
• Still not verbally communicative
• Wife expressed caregiver stress. Unable to cope anymore with him at home
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(A Community Service of St. Andrew’s Mission Hospital)
Identifying care needs
Then he developed another chest infection …
• Anticipatory Care Planning
• Limited trial of treatment
• Institutional Care
• Symptom control and trial of antibiotics
Again, he improved …
• But not able to sit out of bed anymore
• Wife continue to visit daily – but expressed caregiver stress
• Arrangements made for transfer to an in-patient hospice
• Not for further escalation of antibiotics
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(A Community Service of St. Andrew’s Mission Hospital)
Planned but not planned
On day of transfer to Hospice …
• Desaturated
• Hypotensive
• Chesty
Decision not for further trial of antibiotics
Symptoms controlled on …
• SC hyoscine butylbromide
• SC morphine
Passed away on 7/8/18 “comfortable looking”. Family grieving but accepting.
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(A Community Service of St. Andrew’s Mission Hospital)
ADVANCE CARE PLANNING CASE CONFERENCES TERMINAL CARE PLANS
RECOGNISE
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(A Community Service of St. Andrew’s Mission Hospital)
23 June 2016
“
”
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(A Community Service of St. Andrew’s Mission Hospital)
Advance Care Planning
or
Anticipatory Care Planning
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(A Community Service of St. Andrew’s Mission Hospital)
If you have advanced dementia …
Would you want to live out your days with tube feeding?
• What you value most about your life?
[Tube feeding has not been proven to prolong life in patients with advanced dementia.]
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(A Community Service of St. Andrew’s Mission Hospital)
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(A Community Service of St. Andrew’s Mission Hospital)
1. What do you value most about your life?
(One workshop participant suggested that you might list those things that “bring you joy.”)
2. How do you feel about death and dying? Do you fear death and dying? Have you experienced the loss of a loved one? Did that person’s illness or medical treatment influence your thinking about death and dying?
3. Do you believe life should always be preserved as long as possible?
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(A Community Service of St. Andrew’s Mission Hospital)
4. If not, what kinds of mental or physical conditions would make you think that life-prolonging treatment should no longer be used? For example, it may be when you are:
• unaware of your life and surroundings;
• unable to appreciate or continue the important relationships in your life;
• unable to think well enough to make everyday decisions;
• in severe pain or discomfort; or
• other circumstances:
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(A Community Service of St. Andrew’s Mission Hospital)
5. Could you imagine reasons for temporarily accepting medical treatment for the conditions you have described? What might they be?
6. How much pain and risk would you be willing to accept if your chances of recovery from an illness or injury were poor (less than one in ten)?
7. Do you hold any religious or moral views about medicine or particular medical treatments? What are they?
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(A Community Service of St. Andrew’s Mission Hospital)
8. Should financial considerations influence decisions about your medical care? Explain.
9. What other beliefs or values do you hold that should be considered by those making medical care decisions for you if you become unable to speak for yourself?
10.Most people have heard of difficult end-of-life situations involving family members or neighbors or people in the news. Have you had any reactions to these situations? If so, describe:
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(A Community Service of St. Andrew’s Mission Hospital)
Disease Specific Issues in ACP in elderly
• Dementia
• Feeding issues – Tube vs No Tube Feeding
• Antibiotic use
• Respiratory and Neuromuscular Diseases
• Ventilator
• Renal Failure
• Initiation and withdrawal of dialysis
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(A Community Service of St. Andrew’s Mission Hospital)
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(A Community Service of St. Andrew’s Mission Hospital)
ADVANCE CARE PLANNING
CLINICAL INDICATORS OF DETERIORATION
CASE CONFERENCES
CLEAR GOALS OF CARE
TERMINAL CARE PLANS
TERMINAL CARE
RECOGNISE
BA
LAN
CE IN
MA
NA
GEM
ENT
BA
LAN
CE IN
MA
NA
GEM
ENT
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(A Community Service of St. Andrew’s Mission Hospital)
Balance in Management:Integrating ‘active’ and ‘comfort’ care
“…we never said that we only work to give comfort. We have increasingly used cytotoxic chemotherapy over the years and you will see from our annual report that we feel it very important that the way back to the “acute care system” should always be open… I think it is extremely important that Hospice care should be integrated with medical care of other kinds and not just be seen as a ’dead end’.”
Writing to Patricia Parkes (1979)
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(A Community Service of St. Andrew’s Mission Hospital)
Diagnosed with
Parkinson’s
Disease
Became
chair-bound
Bed-bound
PEG inserted
1995 20162014 2018 23/6/18
Admitted to
Palliative Care
Ward
Recurrent
chest infections
Caregiving journeyAssociated with physical fatigue, emotional/mental stress, financial concerns
Respite, home help, financial assistance etc
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(A Community Service of St. Andrew’s Mission Hospital)
Death Preparation
• Rituals
• Estate
• Legacy
• Organ Donation
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(A Community Service of St. Andrew’s Mission Hospital)
Ethical considerations – Modern Paradox
Penicillin
Discovered by Alexander Fleming in 1928.
Opioids
Around since time immemorial.
Enteral Feeding
Commercial Preparations widely available from 1960s
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(A Community Service of St. Andrew’s Mission Hospital)
Ethics, from the Greek word “ethos” meaning “well-developed
habits”.
Whether a given behaviour is acceptable or the norm depends on the culture the individual exists within and the values he holds. Whether these behaviours become ‘habits’ requires cultivation.
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(A Community Service of St. Andrew’s Mission Hospital)
Common Ethical Issues in care of elderly
• Futility
• Artificial feeding and hydration in patients with advanced dementia and severe stroke
• Antibiotics in patients with advanced dementia
• Autonomy and Veracity
• Decision making in the elderly - collusion
• Decision making in patients with dementia
• Beneficence and Maleficence
• Use of opioids – principle of double effect
• Use of restraints and patient dignity
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(A Community Service of St. Andrew’s Mission Hospital)
Special Considerations for EOL in Elderly
Advance Care Planning (and disease-specific discussions)
RECOGNISE
A
B Balanced Management (between disease-specific and palliative)
Caregiver Support and EducationC
D
E
Death Preparation
Ethical Framework
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(A Community Service of St. Andrew’s Mission Hospital)
Number of births and deaths
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(A Community Service of St. Andrew’s Mission Hospital) Straits Times 13 July 2018
Straits Times 13 July 2018
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(A Community Service of St. Andrew’s Mission Hospital)
FRAILTY IS THE FUTURE … Doing nothing is not an option.
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(A Community Service of St. Andrew’s Mission Hospital)
EOL CARE IS EVERYBODY’S BUSINESS
SPECIALISTS
GENERALISTS
LAY PEOPLE
Hospice and Palliative Care SpecialistsWorkforce: Estimated 500
Hospital /Nursing Home/ Home Care staffNursing HomesWorkforce: Estimated 60,000
Public5 mil
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(A Community Service of St. Andrew’s Mission Hospital)
Palliative Care Approach for All
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(A Community Service of St. Andrew’s Mission Hospital)
Care Based on Patient Stratification
Needs Complexity
Time (months)
VariableThreshold
Gen
eral
ist
Spec
ialis
t
Pri
mar
y P
hys
icia
n /
Tea
m
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(A Community Service of St. Andrew’s Mission Hospital)
# More than in cancer, EOL care in frail elderly is everyone’s business. Not just those in Palliative Care.
Ageing & Dying
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(A Community Service of St. Andrew’s Mission Hospital)
Ageing and Dying – In summary
#1 Dying in elderly tends to be preceded by long period of frailty
#2 Compared to cancer care, it tends to be poorly handled worldwide
#3 RECOGNISE A-B-C-D-E
Finally … It is everybody’s business.
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(A Community Service of St. Andrew’s Mission Hospital)
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(A Community Service of St. Andrew’s Mission Hospital)
Thank you.