your personal advanced care plan have you prepared an advance care plan? base: all respondents...
TRANSCRIPT
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
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
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.
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
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.”
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?