alzheimer society of manitoba - dementia care & brain health - … · 2020-04-03 · few...
TRANSCRIPT
Daryl Dyck RN MNClinical Nurse Specialist, WRHA Home Care
Janice Nesbitt RN MN Clinical Nurse Specialist, WRHA Palliative Care
Alzheimer ConferenceMarch 2, 2020
Faculty:
WRHA Home Care Program – CNS
WRHA Palliative Care – CNS
Relationships with commercial interests:
◦ Not Applicable
None
Potential for conflict(s) of interest:Not Applicable
Review :
1) The Brain and Dementia
2) End of Life care in community settings
Long Term Care / Home Care
3) Palliative care
4) Communication - goals of care
1) What common burdensome interventions should not be considered at End of life in LTC ?
A) Tube feeding
B) Artificial ventilation
C) Cardiac surgery
2) What not to discuss when dealing with a loved one’s chronic illness ?
A) Illness trajectory
B) Advanced Care Planning
C) Dinner plans
3) How to prepare family/friends to be realistic about a resident’s condition when they visit?
A) Talk to family prior to their visit
B) Ask the physician to speak with the family
C) Let the family have a ‘go’
The Brain and Dementia
Personality
Interpreting
visual Memory, speech, hearing
Cerebellum
Coordination
Planning
Dementia
Vascular
Alzheimer’s
Korsakoff’s
Parkinson’sPick’s
Huntington's
Lewy body
Metastatic Lung
Cancer
~ 1 year
Metastatic Breast
Cancer
~ 2-4 years
Metastatic Colon
Cancer
~ 1-2 years
Pancreatic Cancer
~ 6 months
Multiple organ
failure
< 2 years
Alzheimer's
Disease
~ 4-8 years
Trajectories of Disability in the Last Year of Life among 383 Decedents.
Among 323 PCH residents near Boston with advanced dementia followed for 18 months:◦ 55% died (25% within 6 months)
◦ 41% had pneumonia
◦ 86% had a feeding problem
Chance of surviving 6 months:◦ After episode pneumonia ~ 50%
◦ With feeding/swallowing problem ~ 60%
Burdensome Interventions (hospital, tube feed):
◦ Decreased last 3 months in caregiver group who understood poor prognosis in advanced dementia
Mitchell et al. N Engl J Med 2009; 361:1529-1538
High prevalence of distressing symptoms:◦ Dyspnea > 5 days – 46%
◦ Pain 39%
◦ Ulcers 39%
◦ Agitation 54- 90%
Mitchell et al. N Engl J Med 2009; 361:1529-1538
Manitoba (2016):
Nearly half of deaths occurred in hospital
◦ not just AD
30% in a LTC facility
◦ 10,000 beds in Manitoba (~ 7000 with dementia)
◦ Life expectancy following admission: ~ 2 years
◦ Death rate 1/3 of residents per year.
20% at Home
Home Care-- long stayHome Care Assessed Clients – 2017-18 WRHA
Health conditionCommunity
Total*N
CommunityTotal*
%
Heart/circulation diseases
Cerebrovascular accident (stroke) 1907 16.2
Congestive heart failure 1447 12.3
Coronary artery disease 1671 14.2
Hypertension 7120 60.5
Neurological diseases
Alzheimer’s disease and other dementia 2205 18.7
Psychiatric/mood diseases
Any psychiatric diagnosis 2654 22.5
Other diseases
Diabetes 2948 25.0
Emphysema/COPD/asthma 2154 18.3
Number of assessed clients11,776
2015-2016 CIHI Report:
Few seniors with dementia receive palliative care and end-of-life services, despite having higher mortality than other seniors.
Reasons for the lack of palliative care may include:
• Difficulties assessing needs and making a prognosis regarding
time to death.
• Limited access to palliative care in rural and remote
communities
• Dementia in particular not being seen as a palliative care issue
by families, patients and some health care practitioners
36 PCH (residents/staff) from AB, MB, and SK.
Burdensome symptoms (incontinence, responsive behaviours) and care practices. Chemical and physical restraints near end of life is highly prevalent.
◦ Key: Understanding and addressing burdensome symptoms and inappropriate care practices is a significant step toward improving the quality of living for these individuals
Hoben, M, et al., 2016
12 month study 3 Nursing Homes in Ontario; interview residents (>85 years), staff and family.
Study Aim: Identify the influences of long term care cultural beliefs on initiation of a palliative care
◦ Strong belief that living and dying are on 2 different planes –not occurring at the same time. Talking about dying typically 1- 2 days prior to death. Because LTC is for the living – end of life care initiated at the last moments of life.
Cable-Williams and Wilson, 2016
19 focus groups and 117 participants (staff, residents & their families)
Study Aim: Explore how palliative care in LTC addresses caring for the living and dying.
Findings:
End-of-life comfort to those who were actively dying.
Suggest eliciting residents’ perceptions of end-of-life comfort, and ensuring that residents, families, and staff can participate in providing comfort care to dying residents could support expanded integration of palliative principles.
Sussman et al., 2017
Study Aim: Describe communication, content and process related to End of life communication
Overarching theme – “missed conversations” EOL care /preferences rarely talked about; information not relayed
◦ “No one asked” - Preference conveyed informally, but no systematic process
◦ “They know me and my needs” – Assumptions about end of life and goals of care
◦ Lack of conveying information or wishes
◦ “Not my job.”
Towsley, G, et al., 2015 J. Palliative Med;
provides relief from pain and other distressing symptoms;
affirms life and regards dying as a normal process;
intends neither to hasten or postpone death;
integrates the psychological and spiritual aspects of patient care;
offers a support system to help the family cope during the patients illness and in their own bereavement;
uses a team approach
enhances quality of life
is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
WHO, 2019
Volunteers
Allied Health
Spiritual Care
Friends and Family
HC Professionals
Person and Family
Palliative care does not need to be exclusive of ongoing medical intervention
Can be involved as a parallel process, with a variable profile depending on goals of care and clinical circumstances
Individual does not need to be ACP -C
DEATH
Follow-up
Varied Trajectories
Sudden, immediate death
Variable trajectory–
potential for anticipating and
addressing “threats to comfort”
Progressive illness
• cancer
• neurodegenerative illness
• end-stage organ failure
Acute Event
• severe brain injury (CVA, anoxia, trauma)
• sepsis
• inoperable surgical conditions
• bedridden
• weak, swallowing impaired, poor airway protection, can’t
clear secretions; pneumonia – dyspnea, congestion
• delirium – agitation
Final common pathway
CPR – rarely successful in advanced dementia
◦ Most residents do not have ACP-R
Dialysis – median 1 year survival 26-42%
◦ Most have decline in ADLs, cognition after start
Opioids
◦ Not required by all persons
◦ Dying itself not a painful
Symptoms at End of Life
Symptom Cancer Heart Lung Kidney A.D.
Pain 66 % 60 % 55 % 50 % ??
Confusion 50 % 50 % 25 % 25 % 100 %
Fatigue 60 % 75 % 75 % 80 % ??
Short of Breath
40 % 75 % 90 % 35 % ??
No Appetite 60 % 30 % 50 % 40 % ??
(Journal of Pain and Symptom Management, 2006)
Total
Suffering
Pain
Physical
Symptoms
Psychological
Social
Cultural
Spiritual
Total Suffering
WoodruffAdapted from Pallium Pain module
Regardless of setting…
Often issues arise around intensity of care in the weeks and months prior to death:
◦ Do we treat the next pneumonia?
◦ Do we send them to the hospital?
◦ What do we do when he refuses to eat?
◦ How did things change so fast?
◦ I don’t want him to suffer
◦ What to do if we disagree about intensity of care?–“He’s not palliative!”
• Decreased intake natural progression of advanced illness
• Families fell helpless
• Comfort feeding usual
• Hydration not common
• Consider fluids and nutrition separately
• Tube feeds are rarely appropriate:
• DOES NOT prevent aspiration, pneumonia, pressure ulcers, discomfort
• Do not present non-options as options
• Occur commonly in light of functional decline:– Pneumonia– Urinary tract– Skin
• Decision to treat or not depends on goals of care
• Context dependent
• Available medication routes a factor
• Antibiotics may or may not:
• prolong life
• Improve comfort
• Be part of a comfort approach to care (elixir)
S. Merel et al. Clin Geriatr Med 30 (2014) 469-92
“Would you be surprised if our LTC
resident died in the next year?”
Anticipate changes and issues
– How long do we have?
– What can we expect? What are the options?
– How come they are not eating; Are they starving?
– sleeping too much?
– How do we know they are comfortable?
– Are medications making things worse?
– Would things be different in hospital?
– What should we do? What did they want us to do?
Possible distress from unfamiliar hyper-stimulating environment
Unfamiliar staff
Aggressive interventions (sometimes)
Expected outcomes/ goals
Many cases of pneumonia can be treated in LTC
Not treating does not always mean death
For bed-bound people, many fractures are managed conservatively with analgesia regardless
➢ Engagement of:– Person
– Family/ SDM
– primary care providers
• Goals of care
• Decision-making
Normalize
“Often people in circumstances similar to this have concerns about __________”
➢ Explore
“I’m wondering if that is something you had been thinking about?”
Seek Permission
Would you like to talk about that?
When speaking with SDM/family:
“If she could come to the bedside as healthy as she was a year ago and look at the situation for herself now, what would she tell us to do?”
OR
“If you had in your pocket a note from him telling you what to do under these circumstances, what would it say?”
(Dr. Mike Harlos)SDM only in effect of resident not capable
Individual/ person
•Gives the person a
“voice” about their
health care
• Increases dignity
•Respects person’s
wishes, values &
beliefs
•Receives care in
preferred care setting
SDM/ Family/
Caregivers
•Guides the Substitute
Decision Maker (SDM)
when need to offer a
decision based on
resident’s wishes
• Increases satisfaction
with care
•Decreases distress
when decisions are
made the way the
person would want
Healthcare providers
•Directs response to
care based on
person’s wishes
•Reduces unwanted
investigations,
interventions and
treatment
•Reduces potential for
moral distress
• Person is never transferred to hospital
• Conversations stop with resident/SDM/family
Person never gets out of bed
Person is not regularly assessed
All medications are stopped or that only pain
medications are given
The resident is imminently dying
Long Term Care Home
Goals/ expectations of care
Broader 24/7 Team approach
Holistic family support
Palliative care Program consult
The “what ifs…” so team responds as expected
◦ Nutrition, transfers, antibiotics
Goals/ expectations of care Team and Family approach
in the home Who is available as
support
Palliative care enrollment
The “what ifs…” so team responds as expected
Letter of Expected Death
Persons and Families
Alzheimer's Society
◦ Support groups
◦ Advanced care planning seminars
Palliative Manitoba
◦ Grief support
◦ Volunteers
CVH
My Grief.ca
WRHA
◦ Home care/Palliative care
◦ LTC
Healthcare providers
Canadian Virtual Hospice (CVH)
◦ LivingMyCulture.ca
◦ What to Expect… dementia
◦ Changes in Swallowing…
◦ When Death is Near
◦ And more…..
WRHA LTC EOL Pathways
Thank you