9th Annual Making the Connection ConferenceInnovation in Older Adult Care 2015

THE OLDER ADULT AND THE RIGHT TO LIVE AT RISK

KERRY BOWMAN PHD

1

We must 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.

There is no blood test for Capacity!

10

Capacity: A Matter of Degree

CAPACITY EXISTS ALONG A CONTINUUM

Completely Incapable

Completely Capable

Understand

Appreciate

What Factors can underly capacity?

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

12

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?

Can he manage?

Is he safe?

Is the home suitable?

What does the family want us to do?

Is she capable?

What does he want to do?

Can we make the home safer?

How can we maximize safety and functioning and well being?

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

Patient-concerns-goalsexperience-values-culture

Health care workerexperience-evidence-colleagues

Family

Setting

Decision…….health care worker/patient

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

CapacityCapacity

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.