Your personal advanced care plan

Have you prepared an advance care plan? Base: All respondents (n=2,976) Question 38 Harris/Decima

Mmmmm…… why don’t we engage in ACP?

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)

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

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

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

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

 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.

 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

 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

 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

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

 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

 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

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.

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.

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

 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.

 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.

 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

 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

A Proxy appointment needs to meet the following requirements: 1. It has to be in writing 2. It has to be dated 3. 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

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!

 Need to change the way we think about:  Aging  Chronic and serious life-limiting illness  Dying

 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

 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)

 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

 Values and Beliefs  Medical aspects such as medical interventions

 Fruitful conversations are based on trust..  Trust is dependant on one’s ability to build a relationship..

 The most important thing is a genuine caring presence  Show interest in the person  Can 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?

 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

 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 were you told about your Prognosis? 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?

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? 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….