ADVANCED CARE PLANNING

It’s all about the conversation

Your personal advanced

care plan

Have you prepared an advance care plan?

Preparation of Advance Care Plan

Base: All respondents (n=2,976)

Question 38

13%

12%

87%

88%

0% 20% 40% 60% 80% 100%

National

Prince Edward Island

Yes No

Harris/Decima

Mmmmm……

why don’t we engage in ACP?

what are the

barriers?

In my culture, we avoid talking about death

Nothing I can do about it, so why bother

Not enough knowledge about options to discuss

I am feeling healthy so I dont have a reason to think about it

Creeps me out and makes me feel uncomfortable

Dont want to upset family members

Afraid of death

0% 20% 40% 60% 80% 100%

10

10

10

16

17

17

24

13

18

23

26

21

31

21

25

13

37

28

26

28

24

25

24

19

16

18

15

16

27

15

11

11

17

9

16

23

28

33

42

39

48

45

Extremely strong reasons Very strong reasonSomewhat strong reason Not a strong reasonNot a strong reason at all T2B-%Total

45

48

39

Harris/Decima 2013

Reasons for Reluctance to Discuss End-of-Life Care?“How strong do you think each of the following is for explaining why people might be

reluctant to discuss end-of-life care?” (n=2,976)

Reasons why ACP/EOL conversations are avoided

by professionals

• Fear of causing pain or taking away hope

• Lack of knowledge of AD laws and lack of training

• View death as a failure, as the enemy to be defeated

• Anticipation of patient or family disagreement

• Medico-legal concerns• Lack of interpersonal skills

Larson & Tobin, 2000

Your

needs?

why

what

how

Planning for End-of-life

Discussions between the patient and the caregiver/family before the last days of life can help lower stress. Knowing the patient’s wishes can make decisions in the last days of life easier for the family.

Increased satisfaction with care received

Decreased burden on family/caregivers

Better chance of care and death at the location of choice Decrease in use of aggressive interventions at the EOL

Why is Advance Care Planning Important?

Most people will die while receiving care from health professionals

The majority of Canadians die of a chronic illness

A large proportion of persons cannot make their own decisions when they are near death

Health professionals typically treat when uncertain of treatment wishes

Loved ones have a significant chance of not knowing a person’s view without discussion

Why should we do this?How many of us will die from cancer?

How many of us will die suddenly?

How many of us will die from chronic illnesses?

How many of us will die at home?

How many of us will die in a hospital setting?

CIHI Health Care Use at the End of Life in Atlantic Canada ,May 2011

Average 30%

Less than 10%

Average 60%

Average 13%

Average 60%

• We can expect to die with 2 or more chronic diseases after a few years in state of “vulnerable frailty”

• Only 20% will die with a recognizable “palliative” phase

• ~70% Canadians die in hospital, 20% in ICU

• At time of death: – 42.5% require decision-making – 70.3% lack capacity

(Silveira et al. NEJM 2010; 362:1211)

GUIDANCE

73% Want more information from their doctors so that they can PLAN AND BEGIN these important conversations.

80% feel these conversations should START WHEN THEY ARE HEALTHY or at the very least when they are diagnosed with a life-threatening disease

Harris/Decima..The Way Forward Survey

Don't Know

Other

Friend

Financial Advisor

Family

Pamphlet

Lawyer

Internet

Health Care Provider

0% 10% 20% 30% 40% 50% 60% 70%

14%

8%

12%

14%

20%

23%

25%

41%

60%

Sources of information for Advanced Care Planning“Where do you think you would go to get information about ACP?”

Advance Care Planning

A process of reflection and communication during which a person with decision-making capacity makes decisions regarding their future health and/or personal care in the event that they become incapable of consenting to or refusing treatment or other care.

Advance Care Planning is a Process

A process of reflection and communication about values, beliefs and goals of care

A process of planning for a time when you cannot make your own medical decisions

A process that involves discussions with healthcare providers and significant others

A process that may result in a Health Care Directive

Exploring Values Identify the values and beliefs around

end-of-life issues that are important such as:

Considering what makes your life meaningful Determining under what circumstances the

burdens of treatment would outweigh the benefits of prolonging your life

Assessing the impact on quality of life that the treatment offers

MYTHS about ACP

One conversation about treatment options with a physician or other healthcare professional

A document/form that family or healthcare professionals are unaware of or do not have access to

Conversations with only one close friend/family member that are not shared with others

Consent to Treatment and Health Care Directive Act

It states: You have the right to choose or refuse treatment on any

grounds

You may write a health care directive which expresses your wishes for treatment should you become incapable of making a treatment decision

You may appoint a substitute decision-maker to act on your behalf if you become incapable of making a treatment decision

Health practitioners have a legal obligation to obtain consent to treatment, and are protected from liability if the process is properly followed

What is a valid consent? Consent must be informed , which means that

the health practitioner must give you information about your condition; the nature of the proposed treatment; the possible risks and benefits of treatment, including no treatments and reasonable alternative treatments.

Consent must be given voluntarily

Consent must relate only to the treatment that has been explained and discussed

Individuals should have the opportunity to ask questions and receive answers on the proposed treatment in simple understandable terms

Who can consent?(notion of capacity)

A person who is capable, is able to understand the information that is relevant to making a decision about the proposed treatment, and appreciate the consequences of a decision or lack of a decision

Understands that it applies to them Understand they have the right to make a decision Appreciate the consequences of making, or not making a decision

There is no specified age in the law for consenting to treatment

The Act recognizes that you may be incapable with respect to some treatment decisions and capable with respect to others; and that you may be incapable with respect to making a treatment decision at one time, yet capable at another

What is a Treatment?( In terms of: What is it you consent to?)

Treatment means a procedure or set of procedures that is done for a therapeutic, preventative, palliative, diagnostic, cosmetic, or other health-related purpose, and includes a course of treatment or group of associated treatments.

Some more legal stuff to remember

A Power of Attorney does not give someone power to make healthcare or treatment decisions for you (In PEI, POA is for financial decisions only in).

If you don’t want to write a HCD, you can still appoint a Health Care Proxy to make healthcare or treatment decisions for you if you cannot make them yourself or in the event you do not want to participate in decision making.

Do I need a lawyer??

Actually,

NO!

If the Patient is Incapable:Who would qualify as substitute decision-maker

1. The Proxy named by the patient as their substitute decision-maker

2. The guardian of the person, if given this duty as guardian

3. The spouse of the person

4. The son, daughter or parent of the person

5. The brother or sister of the person

6. A trusted close friend of the person

7. Any other relative of the person

8. The Public Guardian if none of the above is available

What if there is more than one person in the same category?

If there is more than one person in the same category not one individual takes priority. We try to work with them to come to a consensus on the decision.

If they cannot come to a consensus, there is a mechanism in place to ask the Public Guardian to make the health care decision for the individual.

Proxy or Substitute decision-maker

Must be 16 years of age or older, capable, knowledgeable about your situation, and must have had recent contact with you.

The decision is not theirs but what the

patient would want to have done under those circumstances ( following previously expressed wishes ).

If the patients wishes are not known, the

substitute decision-maker must make decisions to be in the patients best interests.

Best interest

Values and belief Will the treatment improve, prevent

deterioration of the patient’s condition Weigh risks and benefits Other less intrusive options When capability returns( regaining

consciousness) responsibility returns to the patient

Validity of a Health Care Directive

Must be in writing, signed and dated. If unable to sign, the HCD has to be signed and witnessed by an alternate person.

That person cannot be the proxy or the spouse of the proxy

What is a Health Care Proxy?

A Health Care Proxy means the person (or persons) appointed by you to make healthcare or treatment decisions on your behalf if you are unable to do so yourself

You can appoint more than one Proxy, and designate if they have to make a decision jointly, successively or individually.

You can also appoint alternates

You can appoint a proxy as part of your HCD or in a separate document. You can change your proxy if you wish (at any time), but you have to make sure you meet the requirements

You can revoke your proxy appointment at any time, as long as you have capacity

What do I need to do to appoint a Proxy?

A Proxy appointment needs to meet the following requirements:

1. It has to be in writing2. It has to be dated3. It has to be signed by the person appointing

the Proxy 4. The person or persons being appointed as

Proxy must agree to the appointment in writing

Can the Patient Change their Mind?

Yes at any time

BUT

Patient has the responsibility to destroy previous copies of an “old” Health Care Directive

100 % of us will die

You can run but

you can’t hide!

Culture change..

Need to change the way we think about:AgingChronic and serious life-limiting

illnessDying

What do patients want from the

Health Care Provider? Willingness to have the conversation and

carry it through Being clear in their choice of words as

well as prognosis Being clear about what there is to hope

for Clarifying goals and expectations of

treatments

Journal of Gerontological Nursing, September 2000

Hope

How do we define hope in our medical world?

Therapeutic hope is often the only apparent hope

Hope based on the outcome of treatments

(Hope for the cure, hope for the efficacy of a procedure. Hope for the amelioration of a disease)

Reframing Hope

Maintaining hope depends on one’s ability to extend hope beyond the medical aspects of the disease to the things that we do that contribute to the emotional and physical wellbeing of the patients and family REGARDLESS of the outcome of the illness

How do we marry a conversation

that incorporates both ?

Values and Beliefs Medical aspects such as medical

interventions

Fruitful ACP conversations

Fruitful conversations are based on trust..

Trust is dependant on one’s ability to build a relationship..

Gaining Trust

The most important thing is a genuine caring presence

Show interest in the personCan you tell me about yourself?What do I need to know about you that will help me treat you the way you would want to be treated?

Active listening

Do not interrupt or break in with your conclusions or even your questions

This behavior shows attentiveness

Listen attentively to the questions and answer them

This behavior shows you commitment to meet the patients needs

Respond with Empathy

Identify and name the emotion

I realize that you are probably anxious, anxiety is quite normal

You are telling the patient ”You are allowed to feel this, and you and I can discuss how you feel”

“There is nothing more important than being fully present; the

easiest and hardest place to be. It is the foundation of all the

work that follows.”

JUST ASK

What do you understand about your illness(state of health) or what is happening to you right now? What were you told about your Prognosis?

Do you have an ACP? Do you know what I mean by this?If we need to make decisions about your care and you were unable to speak for yourself, who would you want me to speak to about your care?Have you talked to your SDM ( or anyone else) about your wishes and preferences for care ? May I ask what you discussed?

While we talk about this topic, what are the things that are important to you? What are your goals/ what are your goals -is your time is running short?What are your fears? What are you afraid of?

Do you have all the information you need to make decisions about the kind of treatments you do or do not want if you become very sick with a life threatening illness?What are the tradeoffs you are willing to do? How much suffering are you willing to go though to prolong your life even just a little bit?

YOUR TURN….

TURN TO YOUR NEIGHBOUR…

GIVE THOSE FIVE QUESTIONS A TRY….

QUESTIONS?

www.advancedcareplanning.ca