9th Annual Making the
Connection Conference
Innovation in Older Adult
Care 2015
THE OLDER ADULT AND THE RIGHT TO LIVE AT RISK
KERRY BOWMAN PHD
1
examine
ourselves….
NEGATIVE REACTIONS CAN BE OUR OWN FEAR OF AGING….
HOW “SEDUCED” HAVE WE BEEN BY CONTEMPORARY
CULTURE?
FEAR OF AGING IS SOMETIMES THE FEAR OF DEATH.
Our own fears
of our future….
Ageism—a stereotyping and
discrimination of people simply
because they are old
MUCH LIKE DISCRIMINATION AGAINST SOMEONE SIMPLY BECAUSE OF RACE, DISABILITY ETC.
WE OFTEN REACT TO ACTS OF RACISM OR SEXISM, BUT WHAT ABOUT AGEISM?
PREJUDICE IS IMBEDDED IN OUR SOCIAL FABRIC; IT IS HARD TO SEE.
Do we?.....
MANY HEALTH CARE WORKERS MAY BE
INADVERTENTLY DISRESPECTFUL TO THE
ELDERLY.
– CALL SENIORS BY THEIR FIRST NAME
– TREAT THEM AS IF THEY WERE NOT
AUTONOMOUS
ACT AS IF CAN NO LONGER MAKE DECISIONS
Living at Risk and
Senior’s rights…..
Personal choice of the
capable senior trumps
health opinions on
“best interests”…
There is a right
to risk….
Capacity is…..

Not about, alzheimers or mini-mental scores but
about can he understand and appreciate.
10

There is no blood test for
Capacity!
Matter of
Degree
Understand
Appreciate
CAPACITY EXISTS ALONG A CONTINUUM
Completely Capable
Completely
Incapable
What Factors can underly
capacity?
12

NOT ALWAYS CHRONIC

Capacity may be impaired as a result of a number of
treatable underlying physical and psychological
conditions such as depression, dehydration, infection and
fatigue
Consent and Ethics…

Ethically based informed consent goes far
beyond “agreeing to” or the “granting of”
permission.

It is rather the respectful process of providing
information, answering questions and
aligning the proposed intervention with the
values and wishes of the client.
Community health
care delivery; The
great challenge
Sexuality?

Capable seniors have the same sexual rights as
any other adult in our society.

Incapable must be protected.

What about one incapable spouse?

We must be aware of our own feeling s in this
area.
Ethics, autonomy
advocacy

Generally our first duty is to autonomous choice
before health care perceptions of best interests.

Well established in law.

Advocacy is first directed to capable patient
choice.
The risk adverse health care
worker

Risk aversion tends to be high for
health care workers coming from
hospitals and long term care facilities.

Risk avoidance tends to be linked to
professional responsibility and
perceptions of competence

May blunt our duties toward
advocacy and personal choice.
Are we asking the right questions?

Can She live alone?

Is she capable?

Can he manage?

What does he want to
do?

Is he safe?


Is the home suitable?
Can we make the
home safer?

How can we maximize
safety and functioning
and well being?

What does the family
want us to do?
Consent is a human right
….

We tend to teach and discuss consent without
focusing on the purpose of consent laws.

It is important to remember what has happened
in the past to fully understand why we do this.
Why is consent such a
problem?

Research shows that a significant number of
people in health care and the helping
professions do not fully understand the legal
and ethical foundation of consent.

A great deal of confusion exists related to
“best interests”.

Many people are receiving poor modelling
in obtaining and respecting consent.
Consent and the challenge of
the care of the elderly …

Aging population with higher levels of cognitive
impairment.

Large numbers of people now living in Long Term
Care

Never have issues of consent and capacity been
more important
Consequences of
respecting consent

There will be clients living in degraded unsafe conditions.

People who may well respond to treatment may not receive
it.

In some cases people may die sooner than they otherwise
would.
Consent….
Decision
Making
Health care
worker
experience
-evidence
-colleagues
health care worker/patient
Patient
-concerns
-goals
experience
-values
-culture
Family
Setting
Decision…….
The anatomy of consent

Must be voluntary

Must be capable

Must be informed
Voluntary

Protection from contrary family opinions

Protection from contrary helping profession
opinions

Must not be obtained with any sense of obligation
or indebtedness to care givers.
Capable….

Not a matter of our interpretation of best interests

Does the client understand what is being
proposed

Does the client appreciate what is being
proposed.
Informed….

Consent to treatment is informed if,
before giving it:

A) the person received the
information that a reasonable person
in the same circumstances would
require in order to make a decision
about the treatment; and

B) the person received responses to
his or her requests for additional
information about those matters
Remember…..

Consent is a process; not a one time event…….
What are the elements of consent to
treatment?

1. The consent must relate to the treatment
(consent for one particular treatment does not
necessarily imply consent for another treatment)

2. The consent must be informed
What are the elements of
consent to treatment?

3. The consent must be given
voluntarily (an individual should not
feel coerced or pressured into making
a particular decision)

4. The consent must not be obtained
through misrepresentation or fraud
(the information given should be
accurate and unbiased)
Remember ….

Patients can disagree with health care workers
and still be capable….
Remember ….

The compliant, congenial, agreeable patient may
be incapable and therefore must be protected
from wishes which they may not make if they
were capable…..
Documenting Consent

Although consent need not be in writing to
be validly obtained, most professional
colleges state that it must be documented

A signed consent form is evidence of
informed consent having been obtained,
but it is not conclusive

Always document what went in to the
decision-making process
Consent doesn’t end with a
signature!

The obligation to obtain consent continues
throughout the course of care
Capacity
What is capacity?
A person is considered to have capacity with respect
to making a treatment decision if he/she:

A) has the ability to understand the
information that is relevant to the treatment
decision

B) is able to appreciate the foreseeable
consequences of consenting or refusing to
consent to treatment

C) is able to reach a decision
Criterion 1:
Understand

Refers to patient’s ability to grasp and retain
information
Criterion 2:
Appreciate

Can the patient evaluate his/her decision?

Can the patient reflect on the personal meaning of the
situation?

Explores both patient’s reasoning process and personal
meaning given to various outcomes
Capacity evaluation

Capacity evaluation is the responsibility of the healthcare
provider who proposes the treatment

It is evaluated by asking the patient questions related to the
treatment decision
Capacity evaluation?

It is critical to remain focused on the fact that
capacity is decision-specific

Remember- an individual may be able to make a
simple, less complex decision but unable to make
more difficult decisions that have potentially
serious consequences
Case Study: Mrs. D (1)


An 84 year old woman lives alone in
her own home in Toronto. She has a
treatable yet serious heart condition
requiring medication. She also has a
long standing history of schizophrenia
which has, in the past, been
effectivley treated during 4 psychiatric
admissions.
On all four admissions a form 1 was
used to forcibly remove Mrs. D from
her home.
Case Study: Mrs. D.(2)


Mrs. D. has returned to her home after
meeting the criteria for capacity (for
the fourth time) and discharging
herself against medical advice. Upon
returning home-as she has always
done in the past- she has stopped
taking both her cardiac and
psychoactive medications.
She has never willing let anyone into
her home.
Case Study: Mrs. D(3)


A neighbour reports that Mrs. D is delusional
again. Mrs. D’s home is in a state of disrepair.
Garbage is piled high indoors and out and a
large extended family of raccoons are reported
to be sharing the house with her.
Case Study: Mrs. D(4)


Public health is states that as bad as it is there is
no substantial grounds for her eviction. Mrs. D. is a
holocaust survivor and has isolated herself for all
of her adult life.
Contact with authorities causes her extreme stress
and panic.
Community supports

All attempts at building relationships and
community supports have failed over a 15 year
period her one request is to be left alone.

She will not enter into discussions of wishes, or
values when competent.
Seniors and physician
assisted dying?

No Longer a debate!

We really don’t yet know what it will look like in practice.

We must deeply examine or our views on this.

We need to be truly understanding of how difficult this
area will be for some people.
End of life care in Canada a
shifting terrain

Physician assisted dying(PAD) now supported by the
Supreme Court of Canada.

New directives from CPSO.

Both DNR and end of life decisions
Is Palliative care compatible
with these many changes?
•
Palliative care was developed to provide better
care to the dying
 Relieve
unnecessary suffering
 Comprehensive, holistic patient and family
centred care
 Respecting and addressing the needs of
patients and families
•
By its very nature dealing with a variety of choices
The common thread running through the
assisted death(PAD) and medical futility
debate….

Canadians want more control over end of life decisions…..

The concept of Autonomy is gaining rather than losing
influence
Common sense wont get us through this
“Lets just do what’s in the best interest of
our patient….”

Yet who defines best interest ?

Medical team?

Patient?

Family?
So….. if we are to truly
support the dying, we
must confront the
question of assisted
dying…
What is palliative care about?
•
Palliative care concerns itself with the “quality” of dying

Tensions may emerge because the focus is not necessarily on
having a longer time with patients and families but on the
“good death”.

Different patients/families views of hope may at times, collide
with Palliative care philosophy.
What is palliative care about?
•
Palliative care is often described as a counterpoint to
assisted dying, but is this true?

Palliative care is a philosophy of caring for the dying

Assisted Death is often a request to end a life because of
intractable suffering-which can often-but not always be
relieved.
Greatest Arguments against

The “state” must take a position that some types of lives
may not be worth living…..
Does PAD lead to undervaluing the lives of
people with disabilities?
what are our true attitudes…….

We tend to enormously underestimate the quality of life of
people living with disabilities.

We often react very differently to wishes to end life between
able bodied people and people with disabilities…
The “new” aged
Baby boomers are getting up there…
• Knowledgeable
• Often rights oriented
• Demanding the best care
•
 Illness
care and palliative care
Generally more secular
• Not always happy with what they have
seen their parents go through
• “Care” for them may include PAD
•
Palliative care and suffering
•
If we are attuned to relieving as much suffering as possible,
why can’t we consider, at times, the option of assisted death
for those who make a “valid” reasoned request to end what is
for them intolerable suffering

We need to try and understands their circumstances as they see
it; and not impose our views on them related to meaning
suffering or the good death….
“Death is not fair and it is often cruel. ...Some die quickly, others quite slowly
but peacefully. Some find personal or religious meaning in the process as well
as an opportunity for final reconciliation with loved ones. Others, especially
those with cancer, AIDS or progressive neurological disorders, die by inches
and in great anguish. Good palliative care can help in these cases, but not
always and often, not enough.” Marcia Angell
A question of mercy?

In the face of unbearable suffering, what do we do?

Have we as a specialized discipline developed “professional
pride that borders on hubris and rigidity” (Angell) and not say
that PAD is an option?

Perils of dogmatism may exclude people or cause us to abandon
people (Roy)
A question of mercy?

Whose life is it anyway?

We can criticise peoples need for control within western
culture but are we really respecting peoples autonomy when
independence and control are prime values for many
patients? People die very much as they lived.

Is PAD immoral?
Suffering

One of our competencies in palliative care is to is to deal with
suffering
“Suggesting that because unrelievable pain or intractable
suffering rarely occurs it should be ignored follows a logic that
has never motivated the practice of medicine: that because
a source of suffering is uncommon, it should not be attended
to.” (Cassell)
Philosophers remind us….
 It
is very hard to justify
suffering…….
The slippery slope argument
•
Posits a very negative impression of society
•
Not all slopes are slippery
•
American data (State of Oregon) strongly
suggests PAD is compatible with palliative care
•
Is PAD always a moral descent?
The time is here?
•
The majority of Canadians wanted some form
of assisted death to be legalized and the
supreme Court has ruled in favour.
•
The majority of Canadians see themselves as
secular.
•
The absolute best of palliative care may not
always avert requests for PAD.
•
Gone are the days when we could avoid the
question.