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